02 Spring 春
2019 HK$50 | MOP50
Shedding light on social issues in Asia 揭示亞洲社會問題
Can Population-Wide Mammograms Save Lives?
全 民 篩 查 可 否 減 低 乳 癌 死 亡 率？
Inside the Lucrative Cancer Marketplace 金錢至上的癌症醫療市場
Hong Kong’s Innovative Liquid Biopsy Screening 香港的突破性血液驗癌法
M A S T H E A D 出版頁
Publisher 出版商 i-CABLE Communications Limited Executive Director 行政總監 Andrew Chiu Production 製作 Ariana Life Editor-in-Chief 總編輯 Mariana César de Sá Managing Editor 管理編輯 Kate Springer Editor at Large 特約編輯 Gonçalo César de Sá
Photographers 攝影師 Anthony Kwan, Eduardo Martins, Jess Yu, Yankov Wong Illustrators 插畫師 Lauren Crow, Lily Padula Social Media Manager 社交媒體經理 Tina Chu Distribution Manager 發行經理 Connie Cottam Printing 印刷 Asia One Printing Ltd Distribution 物流 One Logistics
Deputy Editor 副編輯 Cathy Lai English Copy Editor 英文文字編輯 Marianna Cerini Chinese Copy Editor 中文文字編輯 Ho Kam Yuen Writers 作者 Amruta Byatnal, Anna Simpson, Chermaine Lee, Christy Choi, Hazel Knowles, Jamie Ha, Joanna Chiu, Mahira Jamshed, Nashua Gallagher, Oliver Clasper, Rachel Blundy, Tanja Wessels Translators 翻譯員 Arthur Ng, Chermaine Lee, Xinqi Su Proofreaders 校對員 Anna O’Connor, Yoko Siu Designers 設計師 Angela Ho, Dennis Lai, Fernando Chan, Inês Campos Alves, Ryan Chan
Get in touch 聯絡我們 Story ideas and feedback 歡迎將意見或報導題材分享至
Partnership inquiries 查詢合作，請電郵至
Room 1902-1903, 19/F Far East Consortium Building 121 Des Voeux Road Central, Hong Kong 香港中環 德輔道中121號 遠東發展大廈19樓 1902-1903室
arianamag.hk ARIANA 2019
TA B L E O F C O N T E N T S 目錄 C O N T E N T S 目錄
16 World of Change 變革世界
Impactful projects that empower and inspire 致力於充權和啟發的重大計劃
24 Re-inventing Retirement 重構退休
Dr Alice Yuk shares her social enterprise expertise with Wise At Work founder Priyanka Gothi 郁德芬博士與Wise At Work創辦人Priyanka Gothi分享管理社會企業的經驗
32 Chinese Medicine Without Borders 無國界中醫
Chinese Medicine for All provides treatments and training in rural Southeast Asian communities 「全仁中醫」在東南亞農村地區提供診療和培訓服務
38 Laser Focus 激光焦點
Nobel Prize-winner Dr Donna Strickland shares her scientific journey 諾貝爾獎得主Donna Strickland博士分享她的科研之路
42 Cancer by the Numbers 癌症數字
We unpack cancer statistics, research spending, mortality rates and more 拆解與癌症相關的數據，如研究經費、死亡率等等
46 Screen Time 是時候照一照了
Early diagnosis is key to beating breast cancer. But is population-wide screening the right move? 早期診斷是對抗乳癌的關鍵，但全民篩查是否為正確的方向？
57 A Driving Force 前行的力量
A survivor, a wife, a daughter: Three women shed light on the highs and lows of cancer 一個康復者，一個妻子，一個女兒，三個女人分享在抗癌路上的高低起跌
76 Answers in Anomalies 在異常中找答案
A new test developed by Hong Kongʼs top researchers could lead to earlier cancer diagnosis 由香港頂尖研究人員開發的血液測試，可以幫助人們更早地診斷癌症
84 Health on the Horizon 醫療未來式
Medical technology in Asia is changing – fast. What does it mean for treatments in the future? 亞洲的醫療科技日新月異，但這對於未來的診療方式意味著甚麼？
94 Pricing out Patients 病不起
Money talks when it comes to getting the best cancer treatments in Hong Kong 在香港，能否得到最好的癌症治療，由錢話事
105 The Cannabis Conundrum 大麻難題
Cannabis is becoming an acceptable medical resource around the world. What is its status in Asia? 在全球各地，大麻迅速地被接受為一種醫藥資源，但在亞洲又如何？
114 Losing my Mother 喪母之痛
After an unexpected brain cancer diagnosis, a family says goodbye too soon 意外確診腦腫瘤令一個家庭提早訣別
134 Demystifying Death「死」得明白
The ʻdeath positiveʼ movement aims to debunk taboos around the topic 「正向死亡」運動致力於消滅一切關於死亡的禁忌
146 A Community Battle 社群之戰
Hong Kong and Macao residents discuss overlooked aspects of cancer 來自香港和澳門的聲音，討論人們往往忽略的癌症問題
150 A Day in the Life 命裡的一天
We explore Hong Kongʼs street life through poetry and photography 在詩歌與攝影中的香港街頭
160 Calm and Compassion 冷的手，熱的心
Honouring the memory of Rebecca Chan Chung, one of Hong Kongʼs most influential nurses 香港護理界傳奇陳可慰的烽火人生
“Education is the most powerful weapon which you can use to change the world.” 「教育是最強而有力的武器，你能用它來改變世界 。」
Nelson Mandela 尼爾遜·曼德拉
Sponsors 贊助人 Ada Wang Bonnie Li Evelyn Lam Galon Kwok Gigi Ma Jenny Wong 4
EDITOR'S LETTER 主編語
ou have cancer.” Three earth-shattering words that most of us will hear at some point in our lifetimes. It could be you, your parent, partner, child, or best friend. Nearly everyone has been – or will be – affected by cancer in one way or another. Back in 1971, former US President Richard Nixon signed the National Cancer Act, generally regarded as the beginning of what many have called the global war on cancer’. Half a century and billions of dollars in research later, the fight goes on. One in five people will be diagnosed in their lifetime and, in 2018 alone, 9.6 million people died from the disease worldwide. Cancer seems abstract and distant until you are affected first-hand. For me, the disease became very personal last year, when my mother, Rina Tay, was diagnosed with brain cancer. In February 2019, after fighting for six short months, she passed away. This issue of Ariana is dedicated to my mum, the strongest woman I have ever known (pg. 114). Over half of Ariana’s team members have witnessed a loved one battle cancer – we understand the disruption, the confusion, the anger, and the new perspectives it can bring. Our hope with this issue is to provide some support to those who have been affected by this insidious disease by exploring some of the latest research, news, taboos and personal stories. We tell the journeys of survivors who faced cancer head on and came out stronger (pg. 57), examine innovative research happening right here in Hong Kong, (pg. 76), investigate the lucrative ‘disease marketplaceʼ (pg. 94), explore the medicinal properties of cannabis (pg. 105), and dive into the ‘death positive’ movement, which encourages us to have healthy conversations with our loved ones, before it’s too late. We hope this issue will inspire you to take control of your health and ask questions. Only by challenging the status quo can we address systemic shortcomings, bureaucracy and pave the way for change, whether that be more affordable treatments, improved patient care, faster drug approval processes or screenings for earlier detection. As Susan Sontag, an American writer and political activist, once said: “It is easier to endure than to change. But once one has changed, what was endured is hard to recall.”
Mariana César de Sá
生癌。」 當人生走到某個階段，我們大多數人都可 能會聽到這三個讓你感到天崩地裂的字。 可能是你，你的父母，你的伴侶，你的孩子，或者你最 要好的朋友。幾乎每個人都曾經或者將會受到癌症某種 形式的影響。 1971年，美國前總統尼克遜簽署了《國家癌症法》， 這被普遍視為全球「抗癌戰」的開端。經歷半個世紀和 投入數以十億美元計的研究經費之後，這場酣戰至今仍 在進行。全球每五個人就有一人會在其人生路上被確診 患癌，而單是2018年就有960萬人死於癌症。可是，癌症 似乎仍然抽象而遙遠，直到你身處漩渦之中。 對我來說，這種惡疾在去年變得非常貼身，因為 我的母親鄭凱斯被確診患上腦癌。 2019年 2月，她在抗 癌短短六個月後辭世。我將本期 Ariana 獻給我的母親 ──在我的眼中最堅強的女人（第 114頁）。 在Ariana的團隊中，超過一半人曾經目睹他們所愛 的人與癌症搏鬥。我們都能理解那種生活被打亂、內心 充滿困惑和憤怒的感受，以及這段經歷帶給我們的新領 悟。在這期雜誌，我們希望可以透過新聞報導、禁忌剖 析和個人故事，給那些受到癌症困擾的人一點支援。 我們講述了與癌症迎頭撞上，成功抗癌之後變得更 加堅強的康復者的故事（第57頁），我們分析了正在香 港發展的創新研究（第76頁），我們調查了利潤豐厚的 「醫療經濟」（第94頁），我們探討了大麻的藥用價值 （第105頁），我們還深入「正向死亡」運動，它鼓勵我 們及時地、坦然地與我們所愛的人傾談死亡議題。 我們希望這期雜誌會啟發你採取行動，掌握自己的 健康和提出疑問。只有敢於挑戰現狀，我們才能夠改善 結構缺憾和官僚作風，並為變革鋪路，無論是讓治療費 用更大眾化、讓病人護理質素提升、讓藥物批准流程加 快，還是推廣篩查以更早識別癌症。 美國作家和政治運動家蘇珊·桑塔格曾經這樣說： 「忍受比改變容易。但一旦改變了，人們就會想不起他 們曾經忍受過的到底是甚麼。」
沙欣賢 ARIANA 2019
Fung Retailing Group owns over 30 brands globally and operates over 2,700 stores across 12 markets. Today we have a retail presence in 95 cities in the Mainland of China with a portfolio ranging from: Womanâ&#x20AC;&#x2122;s Fashion and Accessories, Premium Menswear, Lifestyle Fast Fashions, Convenience Stores and Bakeries, Toys and Kids, as well as Discount Outlets.
27.7 BILLION RMB
Annual operating income in 2018 2018年度的營業收入
43.8 BILLION RMB Total assets 公司總資產
INNOVATION DRIVES PROGRESS
At Lens Technology, China’s leading manufacturer of glass and metal parts for
That’s why we invest roughly RMB 1.2-1.5 billion in research and development each
national patents, 13 international patents and 1,100 authorised patents.
consumer electronics, we believe that true leadership is rooted in innovation.
year. We have also secured the highest number of patents in the industry with 1,500
We are constantly exploring emerging technologies such as 3D glasses, sapphire,
world-class products into the hands of consumers.
precision metal and ceramics, biometrics, automatic production, and more, to put
As a believer in the‘Made in China 2025’strategy, we’re 「藍思科技積極響應『中國製造2025』戰略，我們很榮 “proud 幸能夠透過生產尖端消費電子零件，彰顯中國製造商的 to produce cutting-edge consumer electronics parts that 魄力與創造力。」 show the drive and ingenuity of Chinese manufacturers. ” Founder Chau Kwanfai 創始人周群飛
Number of national patents 國內專利數量
40 BILLION RMB
Investment in Hunan Province 在湖南省的投資總額
Employees in Hunan Province 在湖南省的員工數目
ON THE COVER 封面人物
Cover Photographer 封面攝影師 Yankov Wong Photo Retoucher 修圖師 Victoria Chan Stylist 造型師 Ginno Alducente Stylist Assistant 造型師助理 Loren Chan Make Up Artist 化妝師 Felix Woo Hair Stylist 髮型設計師 Charlie Luciano
After being diagnosed with stage 2 breast cancer in 2017, Yan Fu underwent a lumpectomy followed by chemotherapy. In the beginning, the 44-year-old media buyer worried about everything, including her appearance: “Will I lose all my hair? Will I become too thin? Will I look ugly?” During chemotherapy, Yan's hair fell out just as she feared. But the change spurred her to take control.She shaved her head, surprising herself: “If I didn’t have cancer and hadn’t gone through this – I never would have known what my bald head looked like, and it looks beautiful.”
Yan's strength, positive attitude, and perspective would carry her through her next challenge. Just three months later, the cancer returned. This time, Yan’s doctor suggested a full mastectomy to minimise the risk of another reoccurrence. Today, Yan proudly reveals her mastectomy scar – a symbol of her journey and newfound identity – on the cover of Ariana, something she never imagined doing two years ago. But, then again, today she is a different person. Yan is a survivor, a fighter, and an inspiration. “Cancer is not necessarily a nightmare,” says Yan. “In fact, it has made me a stronger and happier person.”
我 whether or not 人們不能因此而評判 美 I ambecause beautiful 不 of this. 美 ” People can’t judge
2017年 ，Yan Fu被確診患有第二期乳癌 ，之後接受了乳 房腫瘤切除術和化療 。一開始 ，她很擔心自己的外表 ， 「我會 不會掉光頭髮？我會不會瘦骨如柴？我會不會變得很醜？」
遠離了假髮和外人的評頭品足 。她的力量和領悟將支撐她跨越 未來的挑戰 。僅僅三個月之後 ，她的癌症復發 。這一次 ，她的醫 生建議她切除全部乳房 ，以將復發的風險降到最低 。
化療期間 ，她如預期般開始脫髮 ，但意料之外的是 ，這些 變化讓Yan決心將命運牢牢把握在自己手心 。她主動把頭髮 削光 ，反而驚喜地發現：
今天 ，Yan在Ariana的封面上驕傲地展示自己乳房手 術後的疤痕──那是她的人生歷程和新生的標誌 ，而這對於 兩年前的她來說 ，是完全不可想像的 。不過 ，今天的她已不是 昨天的她了。Yan是一名復康者 ，一名戰士 ，也是一股發人深 省的力量 。
「如果我沒有癌症 ，沒有經歷這一切 ，那我就永遠不會知道 我光頭是甚麼樣子的，其實它很好看。」 對外表重拾自信後 ，這名44歲 ，從事媒體購買工作的女性
「 癌 症 不 一 定 是 夢 魘 ，實 際 上 ，它 讓 我 變 得 更 堅 強 ， 更 快 樂 。」Ya n 說 。 ARIANA 2019
The Women’s Wall
Violence against female worshippers of Kerala’s Sabarimala temple triggered one of the largest congregations of women in India on 1 January, as 5 million women formed a line across the southern Indian state to uphold their rights to equality of worship. Until recently, the popular Hindu pilgrimage site forbade entry to females of menstruating age. The ban was lifted by the supreme court in September 2018, but angry traditionalists and some male devotees have strongly opposed the motion. Many have protested outside government offices and even attacked women who tried to enter the temple. 12
IN THE NEWS 新聞總覽
印度西南部喀拉拉邦的薩巴里馬拉神廟針對女信眾 的暴力行為，在 1月 1日引爆了印度史上最大規模的一 次女性集會。 500萬名印度婦女在當地成排站立，捍 衛她們平等參拜的權利。這個知名的印度教朝聖地過 去一直禁止月經年齡段的女性進入，至去年 9月印度 最高法院頒令廢除有關禁令，卻引起傳統主義者以及 男信眾強烈反對，他們在政府外示威，並據報曾攻擊 1 0多名試圖進入神廟的女性。
Better Sex Education
A survey released by the Equal Opportunities Commission (EOC) in January revealed that one in four Hong Kong university students has been sexually harassed – but fewer than 3 per cent came forward about it. The first citywide survey of its kind polled 14,442 university students, with respondents citing the most common form of harassment as casual sexual comments or jokes. The EOC called for better sex education for students of all levels. “Awareness is the key but our study found a lot of students don’t know what sexual harassment is,” said Ferrick Chu, the EOC’s acting chief operation officer.
平等機會委員會（平機會）1月發佈的一份調查顯示， 香港的大學生中每四人就有一人曾被性騷擾，但其中只 有不到3%的人會站出來舉報。這是首個在全港範圍進行 的同類調查，共有14,442名大學生受訪。受訪者最常 提及的性騷擾方式是隨意的性評論或色情笑話。平機會 呼籲向全港各級學生提供更好的性教育。平機會署理營 運總裁朱崇文說：「提高意識是關鍵，但我們的研究發 現，許多學生不知道甚麼是性騷擾。」
The Big Delay
More Trump Stunts
At the end of January, the United States Supreme Court voted 5-4 to grant a Trump administration request to lift injunctions blocking the policy that prohibits “transgender persons who require or have undergone gender transition” from joining the military. Requested to avoid “tremendous medical costs and disruption,” the ruling reverses an Obama administration policy that allowed transgender Americans to serve openly in the military and obtain funding for gender reassignment surgery. Though not mandated, the military has an option to enforce the ban. Army veterans from the transgender community have called the ruling “a hateful and cowardly policy.”
1 月末，美國最高法院以五比四 的票數通過特朗普政府的要求， 撤銷臨時禁制令，容許禁止 「已變性或已要求進行變性手 術人士」從軍的政策生效。政 府表示，此舉是為了避免「龐 大的醫療開支和紛擾」。是次 法庭判決逆轉了奧巴馬政府允 許變性人公開加入軍隊，並獲 得性別重置手術資助的政策。 雖然禁止變性人從軍政策並非 法律明令的，但軍隊可以自行 選擇是否執行。跨性別退役軍 人形容法院的判決是「一項可 惡而懦弱的政策」。
The Pope’s Confession
A report released in March by RainLily, a Hong Kong-based antisexual violence resource centre, revealed that victims under the age of 16 took an average of 13.2 years to seek support from the centre. Adults, by comparison, took an average of 1.2 years. The report analysed 3,611 cases of sexual crimes received between 2000 and June 2018. RainLily’s Executive Director Linda Wong Sau-yung attributes the delay in reporting to shame and Hong Kong's conservative culture which, she says, often blames victims rather than providing support.
大延誤 香港反性暴力資源中心風雨蘭在3月發 佈的一份報告指出，未滿16歲的性侵受 害人平均需要13.2年才會向該中心尋求 協助。相較之下，已經成年的受害人平 均只需要1.2年。這份報告分析了風雨 蘭在2000年到2018年6月期間，處理過的 3,611宗性犯罪個案。風雨蘭總幹事王秀 容指出，受害人遲遲不敢求助，既因感 到羞恥，亦因受到香港往往責難而非支 持性侵受害人的保守文化影響。
During a tour of the Middle East in early February, Pope Francis openly acknowledged that Catholic clerics have sexually abused nuns. In one case, he revealed, his predecessor Pope Benedict dissolved an entire female congregation because the women had been conscripted into slavery, including sex slavery. The pope admitted that the problem is “still going on” but the Catholic Church is taking steps to address it.
教宗方濟各在2月初訪問中東期 間，公開承認有天主教神職人員 曾性侵修女。他更披露，其中一 個個案迫使前任教宗本篤十六世 解散了一整個女修會，原因是修 會中有女性被奴役，當中包括被 性奴役。教宗承認，問題「仍然 存在」，但天主教已正在採取行 動應對。 ARIANA 2019
PIUS UTOMI EKPEI/Stringer/GettyImages
IN THE NEWS 新聞總覽
Sold into Slavery
Nigeria’s anti-trafficking agency NAPTIP reports that roughly 20,000 Nigerian girls have been forced into prostitution in Mali. According to intelligence, the girls were lured by human traffickers who promised employment in five-star restaurants in Malaysia, but were later sold to prostitution rings in Mali. While many of the girls became sex workers in hotels and nightclubs, some were sold as sex slaves to gold mining camps in northern parts of Mali. So far, the agency has rescued 104 girls from three brothels.
尼日利亞反人口販運機構 NAPTIP的報告指出，大約 兩萬名尼日利亞女孩被迫在馬里賣淫。情報顯示， 這些女孩被人口販子哄騙，後者聲稱可安排她們到 馬來西亞的五星級餐廳工作，但之後就把她們賣給馬 里的賣淫集團。很多女孩要在酒店和夜店提供性服 務，有些則被賣到馬里北部的礦場做性奴。到目前為 止， NAPTIP 已經從三個妓院中解救出 104名女孩。
Death by Stoning
On 3 April, Brunei implemented a law that will begin punishing residents who engage in homosexual sex or commit adultery with death by stoning. Based on Sharia law, the country's penal code also punishes thieves by amputating a hand or a foot. Despite widespread international criticism, Sultan of Brunei Hassanal Bolkiah said in a statement that the implementation was “a great achievement.”
自 4月 3日起，文萊人一旦發生同性性行為或通姦，可 被處以投石死刑。這個以伊斯蘭法律為基礎制定的刑 罰還規定，小偷要被砍掉一隻手或一隻腳。雖然修例 引起了廣泛的國際批評，但文萊蘇丹哈山納柏嘉卻發 表聲明表示，新例的實施是「一大成就」。
Mourning in March
Portugal declared 7 March a day of mourning for victims of domestic violence following a series of murders in early 2019. In January and February alone, Portugal documented 11 deaths – the highest number in a decade. In addition, more than 126 men were arrested for domestic violence in 2018. Activists also called for more severe punishments against the attackers. 14
葡萄牙在 2019年年初發生了一連串家暴兇殺案之後， 該國政府宣佈將 3月 7日定為家暴哀悼日。單在今年 1月 和 2月，葡萄牙就錄得 11宗家暴死亡案件，為過去 10年 最高。 2018年，該國有 126名男子因為家暴而被捕。倡 議者還要求政府加重對施暴者的懲罰。
Out of the Shadows
An index released by the Economist Intelligence Unit in January warned that 21 of 40 countries examined lacked legal protections for boys within their child rape laws. Titled Out of the Shadows: Shining light on the response to child sexual abuse and exploitation, the study also found that only 5 out of 40 countries collect prevalence data for boys related to child sexual exploitation. Countries such as Britain, Sweden and Canada provide the best environment for children in terms of legal protection, government commitment and social engagement; while China, Vietnam and Pakistan ranked lowest.
CANCER IN FOCUS 聚焦癌症 The latest news on cancer in Hong Kong and Macao. 在香港和澳門對抗癌症的最新消息。
Hong Kong’s struggling public health care sector recently received a funding injection as part of the 2019–2020 budget. During an announcement in February, Hong Kong Financial Secretary Paul Chan earmarked HK$5 billion in funding for investing in new technologies and upgrading critical medical equipment, such as PET scan devices. In addition, the government increased the Hospital Authority’s annual budget from HK$71.2 billion in 2018–2019 to HK$80.6 billion in 2019– 2020 – an uptick of more than 10 per cent. The announcement met criticism from medical practitioners who believed that the new equipment would not tackle the root of the problem: a severe manpower shortage. 長期苦苦掙扎的香港公營醫療系統最近從2019至20年度財政預算案中獲得大筆資金。 今年2月，財政司司長陳茂波宣佈預留50億元港幣，投入發展新技術和更新關鍵醫療設備， 比如正電子斷層掃描器（PET scan devices）。此外，政府還將醫院管理局的年度預算從 2018至19年度的712億元港幣提升到2019至20年度的806億元港幣，增幅超過10%。 不過，有關決定受到醫護人員批評，他們認為，新設備不能根治人手嚴重短缺的問題。
Optune, a non-invasive electrical therapy that treats glioblastoma multiforme (an
wearable device, Optune creates an electric field around brain tumours that aims
今年 1月，經濟學人智庫發佈了 一項調查範圍涵蓋 40個國家的指 數，顯示當中有 21個國家在其防 止性侵兒童的法律中並未為男孩 子提供足夠的保障，同時只有 17 個國家有收集關於男孩子被性 侵的數據。這份名為「走出陰 影：對兒童性虐和性剝削的應對 探討」的報告也指出， 40個國家 中，僅五國有收集男童遭受性剝 削的數據。諸如英國、瑞典、加 拿大等國透過法律保障、政府工 作和社會參與，為兒童提供了最 佳的生活環境；而中國、越南及 巴基斯坦則排名最低。
to disrupt the growth of cancer cells. Yielding promising results in patients in
aggressive form of brain cancer) has been introduced in Hong Kong. A portable
the US and elsewhere, the groundbreaking therapy has been used to treat four patients in Hong Kong since September last year. 針對多形性膠質母細胞瘤（GBM，一種惡性腦癌）的非入侵性電場療法Optune，已經被 引入香港。Optune是一種可穿戴的便攜儀器，可以在腦腫瘤周圍創造電場，以干擾癌細 胞的生長。這種創新療法在美國及其他地方已經取得積極的成果，而自去年9月至今，它 已被用於治療四名在香港的病人。
THE BIG SCREEN
In Macao, the government announced plans to introduce a lung cancer screening pilot programme for residents later this year. According to Kuok Cheong U, deputy director of the Health Bureau, the programme will use CT scans as the chosen method of detection. 澳門政府宣佈計劃在今年稍後引入肺癌篩查試驗計劃。澳門衛生局副局長郭昌宇表示， 該計劃將運用電腦斷層掃描（即俗稱的CT掃描）來為澳門居民做檢查。
T H E I N I T I AT I V E 環 球 倡 議
WORLD OF CHANGE 變革世界
Harnessing the power of visual storytelling to shed light on positive social and environmental initiatives around the world, FotoDocument is an arts education not-for-profit with global ambitions. Founded in 2012, the organisation runs an ethical photography agency, FotoAgency, which reinvests profits into FotoDocument’s arts education work. It also commissions photographers to produce photo essays, creates socially engaging visual stories for the public sector, and hosts workshops and competitions. One of FotoDocument’s main projects is Empowering Women Entrepreneurs Worldwide, a series of photo essays highlighting the work of Lendwithcare. The initiative, run by leading aid and development charity CARE International UK, features inspiring women entrepreneurs in five of the countries where the NGO operates: Pakistan, Ecuador, Zimbabwe, Philippines and Zambia.
FotoDocument是一個放眼世界的非牟利藝術教育組 織，它利用視覺敘事的力量，介紹世界各地具建設 性的社會和環境倡議項目。該組織成立於2012年， 一直營運著一家良心攝影社FotoAgency，這家攝影 社會把盈利投資在FotoDocument的藝術教育工作之 中。FotoDocument也會委託攝影師製作攝影專題， 創作介入社會的視覺故事，以及舉辦一些工作坊和比賽。 現時FotoDocument的一個主要項目是「為全球女 性企業家充權」（Empowering Women Entrepreneurs Worldwide），它是一系列講述Lendwithcare工作 的攝影專題。該項目由重要的支援和發展慈善機構 CARE International UK主理，重點介紹一些鼓舞人心 的女性企業家故事，而這些女性企業家均來自CARE International UK服務的五個國家，包括巴基斯坦、 厄瓜多爾、津巴布韋、菲律賓和贊比亞。
Ana Caroline de Lima
Learn more 詳情請看 fotodocument.org
T H E I N I T I AT I V E 環 球 倡 議
Lotus Flower, a charity working with women and girls affected by ISIS violence, is taking a hands-on approach to women's empowerment. Last fall, they recruited former professional British boxer Cathy Brown, who runs Boxology boxing academy in London, to launch Boxing Sisters across several refugee camps in northern Iraq. Offering a mix of weekly classes and professional training programmes, Boxing Sisters aims to help women relieve aggression, learn to defend themselves and potentially turn the sport into a career. “Boxing is not only just a great physical activity, it’s also really good for mental health,” Taban Shoresh, Lotus Flower founder, said in an interview with Grazia magazine. “These girls all have very traumatic stories to tell. It’s an opportunity to channel their emotions.”
慈善組織「蓮花」專門服務受伊斯蘭國（ISIS）暴力所 害的女性，它正「動手」為這些女性充權。去年秋天， 該團體招募了英國前職業拳擊手、倫敦Boxology拳擊學 院主理人Cathy Brown，在伊拉克北部的數個難民營開 設「拳擊姊妹」課程。該項目包括一系列週課和專業訓 練，目標是幫助女性避免受侵害、學習保衛自己，甚至 可能將這種運動發展成自己的事業。蓮花創辦人Taban Shoresh在接受英國雜誌Grazia magazine訪問時說： 「拳擊不只是一項很好的體育運動，還有益心理健康。 這些女孩都擁有痛苦難忘的經歷，這是一個讓她們可以 宣洩情緒的機會。」 Learn more 詳情請看 thelotusflower.org
T H E I N I T I AT I V E 環 球 倡 議
The Bail Project
The Bail Project
In the US, hundreds of thousands of legally innocent people are held in local jails for one simple reason: they can’t afford bail. Motivated to change this inequitable system, which requires an accused person to post money or property in exchange for temporary release while they await trial, former public defenders David Feige and Robin Steinberg launched The Bail Project in 2017. As a national extension of their earlier initiative, the Bronx Freedom Fund, the charity provides a revolving bail fund to support those who cannot afford to buy their own freedom. Currently operating out of Los Angeles, The Bail Project collaborated with award-winning director Kevan Funk last year to produce an eponymous short film that explores the impact of unaffordable bail on low-income communities. Looking ahead, the project plans to expand to 40 sites in high-need jurisdictions across the country and bail out an estimated 160,000 people over the next five years. “The ultimate goal is to put ourselves out of business by working with civil rights litigators, community organisers, and legislative councils to put an end to unaffordable bail bonds,” says Steinberg. “[We aim] to prove that cash bails do not work.”
在美國，數十萬在法律上並未被判罪 的人正被關在地方監獄中，只因為一 個簡單的理由：他們無法負擔保釋 金。為了改變這個不公的制度—— 被 控人要以金錢或其他財產換取等待審 訊前的暫時自由—— 前公設辯護人 David Feige和Robin Steinberg在2017 年發起了「 保釋計劃 」。他們成立了 慈善組織「布朗克斯自由基金」，將 初期的倡議推向全國，為沒有能力為 自己的自由買單的人提供循環保釋基 金支援。 「保釋計劃」目前以洛杉磯為基 地，他們去年與得獎導演Kevan Funk合 作，製作了一段與計劃同名的短片，探 討過高的保釋金對低收入社群的影響。 展望將來，該計劃打算拓展至美國40個 有較高保釋需求的司法管轄區，並在未 來五年保釋出大約16萬人。Steinberg 說：「計劃的終極目標是透過與人權律 師、社群組織者和立法議會攜手合作廢 除難以負擔的保釋金，令我們自己可以 功成身退。（我們想要）證明現金保釋 是沒有用的。」
Learn more 詳情請看 bailproject.org
T H E I N I T I AT I V E 環 球 倡 議
Girls A series of raw, intimate portraits by photographer Luo Yang, Girls aims to capture the many identities of contemporary Chinese women. As a woman herself, Yang’s perspective is honest and effective in depicting what she describes as the “unique and beautiful qualities” of her subjects. “The girls I depicted were independent and brave in their own ways, and I can see that they try to live and be true to themselves. This is what I've been trying to show in my photography: authenticity,” says Yang. “I'm not sure what questions my images might raise, but I hope viewers see a bit of themselves.” In 2019, Yang plans to continue her Girls series and exhibit in several cities across Asia.
女孩 攝影師羅洋通過一系列粗獷、私密的肖像照，表達了現 代中國女性的多重身份。羅洋本身也是女性，她的視角 忠實而有效地描繪了她所形容的攝影對象身上「獨特而 美麗的特質」。羅洋說：「我拍攝的女孩都有她們獨立 勇敢之處，我看到她們在努力生活，而且誠實面對自 己，這就是我所希望在作品中展現的東西：真我。我不 清楚我的作品會提出甚麼問題，但我希望看我作品的 人，也可以看到一點他們自己。」2019年，羅洋計劃在 亞洲的其他幾個城市延續她的《女孩》系列。
Learn more 詳情請看 luoyangphoto.com
THE PITCH 變革攻略
重 構 退 休
RE-INVENTING Priyanka Gothi, founder of senior employment programme Wise At Work, quizzed industry veteran Dr Alice Yuk about how to sustain a successful social enterprise. 樂齡就業項目Wise At Work創辦人Priyanka Gothi與行業專 家郁德芬博士對話，請教如何持續營運一間成功社企。
Words 文 Kate Springer | Photography 攝影 Anthony Kwan
riyanka Gothi’s mother worked as a teacher in India for 35 years. After being forced by her employer to retire at 60, she felt compelled to continue contributing to society but couldn’t find anyone to hire her for meaningful and challenging work. Watching her mother struggle, Gothi was inspired to help an entire population of senior citizens with the stamina, intellect and drive to pursue a second career after retirement. Soon after moving from India to Hong Kong in February 2017, the digital marketer launched Wise At Work, formerly Retired Not Out, a job-matching platform that connects companies with a huge talent pool of skilled retired professionals. Since launching, the platform has grown to include more than 1,000 applicants, who have been placed at 24
riyanka Gothi的母親在印度做了35年教師，60歲 時被僱主強迫退休，儘管之後她認為必須繼續貢 獻社會，但卻無法找到任何人聘請她做有意義且 具挑戰的工作。媽媽的掙扎啟發了Gothi，讓她決心幫助 銀髮族中所有仍然有心有力的人在退休之後開啟他們的 事業第二春。 出身數碼營銷的Priyanka在2017年2月從印度搬到香 港不久，就啟動了Wise At Work項目。這個項目的前身為 Retired Not Out，是一個將企業與大量退休專業人士聯繫 起來的職業配對平台。平台自啟動以來，已吸引了超過 1,000名申請者，他們被安排到AIA集團、Zegal和公平僱傭 中心等公司工作。此外，Gothi還為企業提供培訓課程，
Priyanka Gothi (left) and Dr Alice Yuk (right) discuss social enterprise strategies Priyanka Gothi (左) 與郁德芬博士 (右) 討論 社企經營策略
RETIREMENT companies such AIA Group, Zegal, and Fair Employment Agency. In addition, Gothi runs training programmes for corporates to drive age diversity and for seasoned professionals to add new skills to their repertoire and stay relevant and employable. To help Gothi navigate the world of social enterprises, we invited Dr Alice Yuk to join the conversation. A veteran in the industry, Dr Yuk is the president of Hong Kong General Chamber of Social Enterprises, the CEO of Ebenezer School and Home for the Visually Impaired, and a board member of a number of schools, NGOs, and government advisory committees. We’re sharing the conversation, which has been edited for brevity, as part of Ariana’s mission to inspire collaboration and social progress.
幫助他們推動員工年齡多元化，以及 讓資深專業人士可以拓展新技能，與 時並進，保持自己的受僱優勢。 為了幫助Gothi進一步發展她的 社會企業，我們請來郁德芬博士與 Gothi對話。社企老行尊郁德芬博士 是香港社會企業總會的主席，也是 心光盲人院暨學校的院長。她還同 時擔任多家學校、NGO和政府諮詢 委員會的顧問。我們在此分享二人 的對話，作為Ariana推動社會進步工 作的一部分。 ARIANA 2019
THE PITCH 變革攻略
Thank you so much for meeting with me today! I run a social enterprise platform called Wise At Work. It’s been about 18 months since we started. During that time, we’ve been able to build a community of experienced professionals over 50 who are in job-seeking mode but face a lot of ageism. If they retire at 60 and live until 90, that’s 30 years of work that they could lose if the social perspective doesn’t change.
非常感謝您今日和我見面！我經營的社企平台叫Wise At Work，已經運作了18個月。期間，我們建立了一個 以50歲以上的資深專業人士為主的社群，他們目前正在 求職，但面對著許多年齡歧視。如果他們在60歲退休， 並能活到90歲，他們就可能因為社會守舊的觀念而失去 30年的工作時間。
郁德芬 很高興和你見面，我非常喜歡你的工作。在香港經營社 博士 企其實是非常有挑戰性的，你必須在財務上能夠自給自
DR ALICE YUK
It’s so nice to meet you – I love what you’re doing. Operating a social enterprise in Hong Kong is actually very challenging. You have to have financial sustainability and balance a social mission. At the same time, we are working to educate consumers about social enterprises and why they should support them. As you said, operating a social enterprise isn’t straightforward because there’s no legal status for it in Hong Kong. You can either operate a non-profit, which is still charity, or a private for-profit company. But social enterprises sit in the middle. So would you recommend I convert to a charity? It’s hard here, because you have to have charity status if you want to get any sponsorship from foundations or the government. Over 80 per cent of all social enterprises in Hong Kong are actually registered charities as most government funds and foundations stipulate. Most operate under a mother organisation that’s a charity. So Cedar Workshop, for example – where we tailor-make training programmes for corporations, NGOs and public institutes – is a social enterprise under Ebenezer, a charity agency. That’s the trend. It's not the best way nor the healthiest way, but this is the case here.
Why do you think that is?
I think we lack an ecosystem of social investors. So a lot of people who aspire to run a social enterprise end up setting up a charity as the umbrella organisation. That way, they can have access to government support, such as grants and sponsorships.
足，並且要平衡你的社會使命。同時，我們還要教育消 費者有關社企的知識，以及他們為甚麼要支持社企。 PG
正如您所言，經營一家社企並不容易，因為社企在香港 並無明確的法律地位。你要不就經營一家非牟利機構， 這仍被歸類為慈善組織，要不就只能經營一家私人營利 公司。但社會企業正在這兩者之間，您會建議我轉做慈 善組織嗎？
獲得贊助，你就必須取得慈善組織的法定地位。香港 超過八成的社會企業都會註冊為慈善組織，因為大部 分的政府資金和基金會章程都有這樣的資助規定。這 些社企大部分都從屬於一個母組織，而這個母組織是 一個慈善機構。比如 Cedar Workshop ：我們專門設 立來為企業、 NGO 和公共機構提供培訓課程的社企， 就是在心光旗下的，而心光是一個慈善組織。大趨勢 就是這樣，這不是最好也不是最健康的做法，但這是 現實。 PG
想做社會企業的人最終只能設立慈善機構來做社企的保 護傘，從而得到政府的支持，比如撥款或者贊助。 PG
做慈善組織不代表你可以隨便花錢，對吧？你還是需要 有商業策略以及審慎決策，你的產品必須比市場上的其 他競爭產品更出色。
A lot of employers are openly ageist. No one even hides it! 許多僱主公然歧視高齡人士，毫不掩飾！ – Priyanka Gothi, Wise at Work
THE PITCH 變革攻略
I did actually apply for a few grants, but was told that I had to be a charity. So that’s always been on my mind...
There’s no harm in being registered as a charity. We have to face the reality. Just because you’re a charity doesn’t mean you can start spending frivolously, right? You will still have a business strategy and be very prudent. And your product has to be better than others in the market.
Right, and then people would get the tax benefit as well.
That’s correct. Also, there is a new form of financing. For example, a foundation or corporate will give you HK$1 million to buy a certain number of your products, which could be a training programme or a number of non-engaged youths successfully placed with a job. Then you have to prove your product works. In your case, perhaps you hold 100 training sessions for older people and show your results. But this type of foundation can only give money to charities.
something that we face every day – a lot of employers are openly ageist. No one even hides it! AY
Cedar is a medium for us to connect with potential employers. Essentially, we develop custom training programmes to suit the needs of corporations. We actually train visually impaired young professionals to run the programme, so that’s one way that we differentiate ourselves from other social enterprise training programmes.
And how do you successfully place visually impaired professionals?
Well, if I just call [a company] and ask them to employ visually impaired people, nine times out of 10, we will never hear back. We use Cedar Workshop as a tool to approach corporations, universities, health authorities, and even the government. Once we have worked together and established a relationship through Cedar, it’s easier to approach them.
Yeah, good point. I’d love to learn more about Cedar Workshop as well, and how you’re convincing organisations to hire people with disabilities. That’s
How do you select the organisations to reach out to?
I would say that international corporates are easier
或一家企業會出100萬元港幣買你的一些產品，可能是 培訓課程，可能是要你幫助一些雙失青少年成功找到工 作，這樣你就必須證明你的產品是有效的。根據你的情 況，也許你可以為高齡人士舉辦100次培訓，並展現你 的成果。不過，這種基金會只能向慈善機構提供資金。
人士，十有八九會石沉大海。我們以Cedar Workshop為 工具接觸企業、大學、衛生機構，甚至政府部門。一旦 我們合作過，並通過Cedar建立了聯繫，就比較容易接 觸他們了。 PG
有道理。我也希望瞭解Cedar Workshop的更多情況，以 及您如何說服機構聘用傷健人士。這是我們每天都要面 對的問題，許多僱主公然歧視高齡人士，毫不掩飾!
內容是按照企業的需求為它們量身訂做培訓項目。我們 會訓練有視力障礙的年輕專業人士來營運這些項目，這 也是我們在芸芸社企培訓項目中用來區別自己的方法。 28
業社會責任的文化，許多甚至已有在聘用傷健人士。其 次，我們也會接觸大學，尤其是與教育和社會服務有 關的科系，因為它們比較開明。不過，本地公司也在 急起直追。
BY THE NUMBERS 讀數 to approach because they already have a culture of corporate responsibility. Many already work with people with disabilities. Secondly, we approach universities, especially the education and social services departments, because they have a very open mindset. That said, local companies are catching up. PG
What types of businesses are you targeting?
We look for corporates that need a lot of manpower, such as hotels – the staff turnover is really high and they always need more people. Of course, not every job is senior or highly paid, but they need people in the back office, marketing, IT, registration, customer service calls... there are many roles. Overall, you can’t approach small business as successfully, because they’ll say the budget is too small or jobs are limited.
So one thing we focus on when we’re placing older professionals is fair salaries. Often, organisations will try to pay less than the market rate. How do you ensure that the rates are fair and competitive? One way we have approached this problem in the past is to place an employee on a probational salary for a
Hong Kong is home to a rapidly ageing population, caused by an increase in life expectancy and a decrease in birth rates. 香港的人口正在急速老齡化，成因主 要是人口壽命提高和出生率下降 。
The percentage of the city's population which is elderly 高齡人士佔香港總人口比例
The median age of the population by 2033; increasing from 38 in 2003 2033年香港人口年齡中位數（2003年為38歲）
The percentage of Hong Kong residents who will be 65 and older by 2064 2064年65歲或以上的香港人口比例 PG
它們的員工流失率非常高，而且總是需要更多人手。 當然，並非所有工作都是高級職位或者薪水很高，但它 們的後勤、營銷、IT、登記、客服電話等部門都需要人 手，工種很多元化。整體而言，找小型企業的成功率就 沒有那麼高，因為它們會說預算和工種都有限。
The average life expectancy for women in Hong Kong by 2066, an increase of 5.8 years. The average age for men will increase from 81.3 to 87.1 years 2066年香港女性平均壽命（現為87.3歲）；
我們在為高齡專業人士找工作的時候，一個主要的關 切點是公平薪酬。通常僱傭機構都會嘗試給出低於市 場的價錢，您怎樣保證求職者可以獲得公平和有競爭 力的薪酬？
The percentage that the city's birth rate
dropped between 1961 and 2016 出生率從1961年至2016年的下降幅度
THE PITCH 變革攻略
couple of months. If he or she does the job and they decide to confirm [their role], then we will renegotiate the salary. Overall, if you’re placing someone in a social work position and they are performing well, then the wage should be the same as other social workers.
experience isn’t directly valuable. We believe that many job skills are transferable, but it might not be possible to negotiate in that case. A positive, open mindset is important with employment training and matching.
Do you think that works for people who have already worked for 40 to 45 years of their life? Paying them the same as a university graduate, let’s just say, doesn’t reflect the wealth of experience.
Just like you have the SE [Social Enterprise] mark for accredited businesses, do you think it makes sense to reward organisations that are more inclusive with a mark of their own?
It depends. How much is his or her past experience going to contribute to the job? If this is a job any fresh graduate can handle, then you really can’t say the applicant deserves to be paid more if their past
Developing a method to recognise nonmainstream employees and encourage businesses to promote inclusion is a good idea. But perhaps it could be an annual recognition event instead of an accreditation system. An annual event is much more relaxing for companies, as they don’t have to spend as much time going through an assessment process. They just nominate employees or corporate programmes, attend the events, and that creates a sense of community.
Even though there’s no mandatory retirement age in Hong Kong, a lot of people have to leave their jobs after 60 because many organisations have fixed retirement ages. Without government support and in the absence of any legislation against age discrimination in Hong Kong, how can my social enterprise continue to support this community?
I think you’ve been very smart already. If you wait for the government, it will be years and years! But that said, I still think you need to collaborate with parts of the government, such as the Equal Opportunities Commission. Go and talk to them. Ask them to advocate for the elderly, build the ecosystem, encourage older people to come out and work. You also need to keep putting out good news stories – tell the media amazing stories about older workers, the inconsistent retirement policy, issues associated with a rapidly ageing population and how this will affect the GDP and the community.
READING MATERIAL 讀物 One of The Pitch’s previous mentors, Diana Wu David, recently published a book called Future Proof: Reinventing Work in an Age of Acceleration. The book approaches work from a humanistic and sustainable point of view, showing readers how to become more innovative, stay relevant and live a more entrepreneurial life in the face of rapidly changing industry landscapes. 上一期《社企攻略》的導師 Diana
Wu David最近出版了 Future Proof: Reinventing Work in an Age of Acceleration（暫譯：《永不過時： 在加速時代重構工作》）一書。該書 從可持續的觀點討論就業，告訴讀者 如何在行業環境迅速變化的年代，增 加競爭力、保持與時並進以及活出更 具創業精神的人生。
Learn more 詳情請看 dianawudavid.com/future-proof
RETIREMENT 101 退休 101
一個求職者去做一個社工職位，而他們表現良好， 那麼他的薪水就應該和其他社工一樣。 PG
您覺得這個方法對於已經工作了40到45年的求職者也 適用嗎？如果他們拿到的薪水和一個應屆大學畢業生 一樣，那就不能反映他們豐富經驗的價值所在。
Retiring in Hong Kong can be stressful. Some may be financially unprepared to leave the workforce, while others still want to contribute. Here’s what you need to know: 在香港，退休困擾著許多人。有些人或在財 政上未準備充足，無法離開職場，也有些人 希望繼續貢獻。這是你需要知道的 :
的工作帶來多少貢獻？如果這是任何一個初出茅廬 的畢業生都可以處理的工作，那麼你就不能說你的 申請人值得拿更高的薪水了，因為他們擁有的經驗 並非直接有益於這份工作。我們相信許多工作技能 都是相通的，但在上述那種情況下，就未必能夠要 求加薪了。積極和開放的心態對求職培訓和職業配 對來說很重要。 獲認證的社會企業會獲得一個社企標籤，您認為是 否應該也給更共融的機構一些獎勵？
In Hong Kong, there is no official retirement age but it’s common for private companies to ask employees to retire at 60. 香港沒有法定退休年齡，但私人公司通常要求員 工在60歲退休。 In 2015, the government raised the
retirement age for civil servants to 65. 2015年，政府將公務員的退休年齡提高至65歲。
融是一個好主意，但也許可以通過年度頒獎活動， 而非認證制度。年度頒獎對於企業來說更輕鬆，因 為它們不用花太多時間去通過評估程序。它們可以 提名僱員或企業項目來參加活動，這也能創造一種 社群感。
You can access your Mandatory Provident
香港沒有強制退休年齡，但許多人在60歲之後就必 須離開工作崗位，因為許多機構會有固定的退休年 齡。在沒有政府支持和反年齡歧視立法的情況下， 我的社企如何才能持續支援這個群體？
To maintain standard of living, experts
Fund (MPF), which accrues throughout your career, at the age of 65.
recommend that you save 13.6 per cent of
your salary in addition to MPF contributions throughout your career. 為了維持生活水平，專家建議人們在職期間，
等許多許多年！儘管如此，我仍然認為你要與政府的 某些部門合作，比如平等機會委員會。去跟他們談談 吧，讓他們為高齡人士發聲，建立一個生態體系，鼓 勵高齡人士出來求職。你還要不斷推出好故事，例如 告訴媒體高齡工作者的動人經歷，不一致的退休政 策，與急速老齡化社會有關的問題，以及它們會如何 影響香港的GDP和社會。
除強積金以外，將13.6%的薪水撥作儲蓄。 There are over 1.1 million people living in poverty in Hong Kong. Of them, more than 330,000 people are aged 65 or above. 香港有超過110萬人生活在貧困之中，其中超過 33萬人在65歲或以上。 The number of workers aged 60 and above has increased by 59 per cent over the last five years.
Learn more 詳情請看 wiseatwork.co; sechamber.hk; ebenezer.org.hk
IN FOCUS 聚焦
CHINESE MEDICINE WITHOUT BORDERS 無國界中醫
Established by young medical practitioners in Hong Kong, Chinese Medicine for All caters to the medical needs of underprivileged communities and promotes traditional Chinese medicine across Asia. 由香港年輕醫師創立的「全仁中醫」致力為弱勢社群提供 醫療服務，並在亞洲推廣傳統中醫藥。
Words 文 Cathy Lai
IN FOCUS 聚焦
n a wooden shed built on the beach of Infanta, a semi-rural town in the Philippines with about 70,000 residents, men and women lie on mattresses placed on the floor. They are here to receive traditional Chinese therapies such as acupuncture, cupping, and scraping. Others wait to pick up various forms of herbal medicine. Situated in one of the country’s most povertystricken areas, Infanta is the first project location of Chinese Medicine for All (CMA), a Hong Kong-based NGO established in 2009 to offer free Traditional Chinese Medicine (TCM) treatments in marginalised, underprivileged communities across Asia. Using the simple shed as a base, the CMA team handles as many as 100 cases each day, tending to ailments and injuries such as menstrual disorders, muscle pain and bone fractures. “As traditional Chinese doctors, we uphold the tradition of helping the poor and needy,” says Dr Vincent Lee, co-founder of CMA and registered Chinese medicine practitioner in Hong Kong. “Traditional Chinese medicine is highly affordable, effective, and easy-to-perform; it can be a great medical alternative for people living in less affluent places.”
SERVING THE UNDERPRIVILEGED Despite remarkable economic progress over the past decades, many of Asia’s developing countries still lag behind when it comes to healthcare, particularly in rural areas. Residents of remote towns and villages often can’t afford treatment, either due to financial constraints or a lack of accessible hospital facilities. In early 2008, Lee witnessed the impact of insufficient healthcare firsthand, when he led a group of undergraduate students from Hong Kong Baptist University (HKBU) on a cultural field trip to Infanta. “The government allocated very little medical resources to that area. The only medical facility nearby was a simple district hospital, with only one doctor on duty each day,” he recalls. “Poor and uninformed, people often neglect ailments such as muscle pain, coughing and digestive disorders, which could eventually develop into chronic diseases.” The idea to bring TCM to Infanta came after Lee learned about Integrated Community Development 34
Assistance Inc. (ICDAI), a local NGO that had been providing simple acupuncture therapy to residents and was keen to expand its services. For Lee, it was an opportunity to implement what he had long been considering. “My colleagues and I had always wanted to create a TCM version of Doctors Without Borders,” he explains. “Infanta and ICDAI seemed like the perfect platform to make it happen.” Back in Hong Kong, Lee and TCM doctors Charmaine Tsang and Dennis Au, both fellow alumni of the School of Chinese Medicine of HKBU, began reaching out to all registered TCM doctors and TCM departments of universities across Hong Kong. In May 2009, the trio established CMA, hosting the first official service trip to Infanta in August that same year. Since then, the NGO has been sending 15 TCM doctors and students to the town annually to volunteer on rotation. As the Infanta project matured, so did CMA. The organisation gradually began to build up a pool of 150 volunteer doctors and extended its services to remote areas of Thailand, Myanmar, Cambodia and India, working with local NGOs such as religious organisations, children’s homes, and medical centres. And in Hong Kong, they have treated domestic workers through the Mission for Migrant Workers, an NGO committed to improving the lives of migrant workers. Over the past decade, CMA has helped more than 20,000 people across Asia.
A LONG-TERM SOLUTION Although rigorous scientific evidence of TCM’s effectiveness is limited, its use in recent years has become widespread around the world. In some cases, TCM works well in combination with Western medicine (in treating schizophrenia, for instance). Treatments like acupuncture and cupping have been endorsed by athletes to relieve muscle spasms, while herbal remedies have been embraced by many as natural alternatives to treat mild to moderate illnesses. CMA does not intend to serve as a substitute for Western therapies but, Lee says, it often offers the only care its patients can access. “Since they have no other medical options, they follow our advice diligently, from
Marina Watt (left) and Diana Wu David (right) discuss how support platform 屈家妍（左） 和Diana Wu David（右）討論 如 何發展小產
“We can’t just offer some services and leave. We need to provide a long-term contribution.” 「我們不能只提供一些服務就離開， 我們要做長遠的貢獻。」 – Charmaine Tsang, co-founder of CMA 曾穎怡 全仁中醫聯合創辦人
菲律賓一個人口約七萬的 鄉郊小鎮Infanta的沙灘 上，有一座木棚屋，屋 內地板鋪滿床墊，上面躺著男男女 女。這些人正接受針灸、拔罐和刮 痧等傳統中醫治療，旁邊的人則等 著拿取中成藥或草藥藥方。 位於菲律賓最貧困地區之一的 Infanta，是非牟利機構「全仁中 醫」（CMA）的第一個義診服務 點。自2009年在香港成立以來，該 機構一直致力為亞洲各地的邊緣和 弱勢社群提供免費的傳統中醫藥治 療服務。在這座簡陋的木棚，全仁 中醫團隊每天診治的病患高達100名 病患，處理的病痛傷患包括月經失 調、肌肉痛楚和骨折等。 全仁中醫的聯合創辦人、香港註 冊中醫師李宇銘博士說：「身為中
醫，我們堅守扶助貧弱的傳統。傳 統中醫藥有著簡、便、效、廉的優 點，對於生活在比較不富裕地區的 人們而言，它可以是一個非常好的 醫療選擇。」
扶貧助弱 在過去幾十年，許多亞洲發展中國 家雖然在經濟方面已有長足進步， 但當中不少國家的醫療水平仍然落 後，尤其是在農村地區。在偏遠城 鎮和村落生活的居民，往往會因 為財政壓力或醫療設施不足而無法 求醫。 2008年初，李宇銘帶領一群香港 浸會大學本科生到訪Infanta考察當 地文化，其間親睹了醫療服務不足 的惡果。他回憶道：「當地政府撥
給這個地區的醫療資源很少，附近 唯一的醫療設施就是一間簡單的地 區醫院，裡面每天只有一名醫生當 值。因為貧窮和缺乏資訊，當地民 眾往往會忽視肌肉疼痛、咳嗽和消 化不良等小病痛，導致它們最終可 能演變成長期病患。」 李宇銘在Infanta接觸到非政府 組織ICDAI（Integrated Community Development Assistance Inc.）後， 便產生了將傳統中醫藥治療引入當 地的想法。多年來，ICDAI一直為 當地居民提供簡單的針灸治療，並 非常期待能夠拓展該服務。對於 李宇銘而言，這正是他實現夙願的 好機會。他解釋道：「我和同事 一直希望創辦中醫版的無國界醫 生，Infanta和ICDAI看來是讓我們達 成願望的絕佳平台。」 ARIANA 2019
IN FOCUS 聚焦
CMA trains ‘community acupuncturists’ in communities like Infanta
medication and diet, through to lifestyle and emotion management [such as stress and anger],” he explains. The works of CMA have generally enjoyed a positive response from communities, because TCM has been a widely accepted practice in these areas for the past 2,200 years. “They respect the practice,” says Lee, recalling the long lines of patients that often greet CMA’s doctors when they return to a location. The organisation is also working hard to make a lasting impact on the people it treats. “We don’t just want to spread TCM to different parts of Asia,” Tsang says. “We also want to involve rural villagers so that they can give back to their communities.” “It’s about improving their healthcare at large,” she continues. “We can’t just offer some services and leave. We need to provide a long-term contribution.” That solution has come in the form of a six-month educational programme launched in 2014, which trains ‘community acupuncturists’ in Infanta and Chaw Sane village, in Myanmar, by teaching manipulative therapies such as acupuncture, tui na massage, cupping and scraping. The programme tends to admit more female students, as it’s more likely for men to leave the villages in search of work, or in the case of Myanmar, join the army. To that end, Tsang believes it has also become an empowering tool for many female attendees. “People from the community seek help from [these community acupuncturists] due to their expertise, and that’s definitely a confidence booster.” Hosted by two Hong Kong TCM practitioners in each location, the programme has trained a total of 25 acupuncturists. While serving their communities, the newly appointed practitioners continue to receive support from CMA for the two years following their course, as well as undergoing exams and further training to strengthen their skills. “It’s impossible to teach [the students] everything about TCM in just half a year,” Tsang admits. “But the therapeutic skills they learn are cheap and convenient to perform and are very effective in curing common problems among rural people, such as muscle strains and other types of pain caused by the tough work they do.” Moving forward, Tsang says CMA plans to train more acupuncturists in impoverished and remote areas across Asia: “Teach a man to fish and you feed him for life.”
回港後，李宇銘和浸大中醫藥學 院的兩位校友——中醫師曾穎怡和歐 卓榮開始接觸全港的註冊中醫師， 以及各間大學的中醫藥學院。 2009年5月，他們三人成立了全 仁中醫，並在同年8月到Infanta展開 首次海外義診服務之旅。自此之後， 全仁中醫每年都會輪流派遣15名中醫 師和中醫學生到當地提供志願服務。 隨著Infanta項目發展成熟，全仁 中醫也不斷成長，並逐漸建立起一個 擁有150名義務醫師的網絡。他們亦 透過與宗教組織、兒童之家和醫療中 心等當地非政府組織合作，將其服務 拓展到泰國、緬甸、柬埔寨和印度的 偏遠地區。在香港，他們也通過致力 改善移工生活的非政府組織Mission for Migrant Workers為家庭傭工提供 服務。過去10年，全仁中醫已經在亞 洲幫助了超過20,000名貧困人士。
長期方案 儘管中醫藥效用的科學實證仍有爭 議，但近年中醫藥在全球已被廣泛 應用。在部分情況中，中西藥並用 療效很好（如在治療精神分裂症方 面）。針灸、拔罐等療法已經被運 動員用以紓緩肌肉痙攣，而草藥也 被很多人信奉為自然療法，可治療 輕微至中度不適。 李宇銘表示﹐全仁中醫並不以取 代西醫為目標，但他們提供的服務 往往成為當地病人唯一能夠獲得的 治療。他解釋道：「因為他們別無 選擇，所以他們會認真遵循我們的 醫囑，從藥物使用到飲食習慣，再 到生活方式和情緒管理（如處理壓 力和憤怒）。」李宇銘亦指出，由 於病人會完全地遵循醫囑，他們的 病情往往可得到紓緩。 全仁中醫在他們服務的地區廣受 好評，他們也感受到當地人對有著着 2,200年深厚歷史的中醫藥的信賴。 李宇銘說：「他們尊重中醫療法。」
他回憶起，全仁中醫的醫師每次回 到一個服務點時，都會有許多病人 排隊等待他們。 全仁中醫也正努力為他們的病人 帶來更長遠的影響。曾穎怡表示： 「我們不只是想把中醫藥帶到亞 洲各地，我們也希望使農村居民參 與其中，讓他們得以回饋自己的社 區。」她續說：「我們要改善當地 醫療保健的整體水平，就不能只提 供一些服務就離開，我們要做長遠 的貢獻。」 這個長期方案就是全仁中醫在 2014年推出的半年期「鄉村針灸 師」培訓計劃。該計劃為Infanta和 緬甸Chaw Sane村的青年提供針灸、 推拿、拔罐和刮痧等療法培訓。 培訓計劃傾向招收更多女學生， 因為男性有更大機率離開村莊工 作；在緬甸，當地的年輕男性則通 常會去參軍。曾穎怡認為，該項目 對於很多女學員而言是充權途徑， 「當地人會因為她們的技能而向她 們求助，這絕對有助提升她們的自 信。」 「鄉村針灸師」計劃在Infanta和 Chaw Sane兩地分別安排了兩名香港 中醫師主持培訓課程，至今合共訓練 了25名針灸師。新任針灸師在服務社 區的同時，亦會繼續獲得全仁中醫支 援兩年，並定期接受考核和進階培訓 課程，以提升他們的技能。 曾穎怡承認：「要在半年內教曉 （學員們）有關中醫的一切是不可 能的。不過，他們學會的療法簡便 廉宜，而且對治療農村地區常見的 問題也很有效，比如肌肉勞損和其 他因為辛勞而引起的痛症。」 曾穎怡還表示：「授人以魚不如 授人以漁。未來全仁中醫將繼續在 亞洲的貧困和偏遠地區培訓更多針 灸師。」 Learn more 詳情請看 cmedforall.org
HER VOICE 女聲
LASER FOCUS 激光焦點
Nobel Prize winner Dr Donna Strickland discusses her pathway to physics. 諾貝爾獎得主Donna Strickland博士討論她 的物理研究之路。
University of Waterloo
Words 文 Joanna Chiu
ast October, Canadian Dr Donna Strickland became the first woman in 55 years to win the Nobel Prize in Physics. Before her, the award has gone to just two other female laureates in the field: Maria Goeppert-Mayer in 1963 for her discovery of the nuclear shell model; and Marie Curie in 1903, along with her husband, for their work on radioactivity. Strickland, who is a professor of physics at the University of Waterloo in Canada, shared the prize with French scientist Gérard Mourou, whom she had worked with at the University of Rochester, New York, for the invention of “chirped pulse amplification” (CPA), a technique for generating high-intensity short-pulse lasers. Since its invention in the mid-1980s, CPA has led to the proliferation of a number of laser-based tools and has allowed doctors to perform millions of corrective laser eye surgeries every year. Before its conception, the medical use of lasers was limited because longer pulses generated heat that was dangerous to human tissue. We speak with Strickland about her journey, the scientific breakthrough and how her work could eventually enable new cancer treatments.
DR DONNA STRICKLAND
What has it been like for you since winning the Nobel, and how do you think the win will impact your work? Winning was a complete surprise. My calendar is filling up with invitations to speak. The Swedish embassy invited me for a dinner, and my own parliament is going to honour me. I had dinner with the Swedish king [Carl XVI Gustaf]. It’s quite a different life with this prize! It’s been busy, but hopefully I can find some time for my research. I want to develop new types of lasers so hopefully [the recognition] will bring more opportunities, funding and new collaborations.
年10月，加拿大學者Donna Strickland博士 成為了55年來首位獲得諾貝爾物理學獎的女 性。在她之前，只有兩位女性獲此物理界殊 榮：1963年，Maria Goeppert-Mayer憑著她的原子核殼 層模型發現而得獎；1903年，Marie Curie和丈夫因為他 們的放射性研究而一起獲獎。 在加拿大多倫多滑鐵盧大學擔任物理學教授的 Strickland，與法國科學家Gérard Mourou共同分享這屆 物理學獎。他們兩人在紐約的羅徹斯特大學合作，發明 了「啁啾脈衝放大」（CPA）技術，可以產生高強度超 短脈衝激光。 自上世紀80年代中發明以來，CPA已經衍生出多種 激光工具，讓醫生可以每年施行數百萬宗激光矯視手 術。在有關概念形成之前，激光的醫療用途非常有限， 因為較長的脈衝會產生熱力，而這對人體組織來說是危 險的。 我們訪問了Strickland，討論了她的科學突破之路， 以及她的工作最終可以怎樣帶來新的癌症治療方法。
DR DONNA STRICKLAND
You jokingly call yourself a “laser jock” in interviews. How did you get into the field? Why lasers? It’s something that goes back to my childhood. When I was younger, my parents brought the family to the Ontario Science Centre, and my dad pointed to a big laser on display. He said lasers would be the way of the future. Back in the 70s, it’s not like you saw lasers around often. We didn’t have laser pointers or checkout scanners at grocery stores. Lasers were a research tool.
獲得了諾貝爾獎之後，您的生活如何？這個獎項會怎樣 影響您的工作？ （獲獎）完全是意料之外的。我的日程現在排滿了演講邀 請。瑞典駐多倫多的大使館邀請過我出席晚宴，本地議 會也將授予我榮譽。我還跟瑞典的國王（卡爾十六世． 古斯塔夫）吃過飯。得獎之後的生活真的很不一樣！生 活變得很忙，但我希望可以騰出時間來繼續做研究。我 希望研發出新的激光，也期盼（這個獎）可以帶來更多 機會、資金和新的合作。
為甚麼做激光研究？這跟我的童年經歷有點關係。 小時候，我父母帶我們一家去多倫多的安大略科學中 心，我爸爸指向一部展出的大型鐳射機。他說，激光 會是未來之路。在1970年代，激光並不是常見事物。 我們沒有鐳射筆，雜貨店也沒有激光掃碼機。激光在 當時是一種研究工具。 （許多年之後）當我要決定大學本科讀甚麼專業 的時候，我看遍了本地大學，然後發現了麥瑪斯達 （McMaster University，一所位於安大略省漢咸美頓的 公立研究型大學）有一個工程物理學系，當中有四個 ARIANA 2019
HER VOICE 女聲
When [years later] I had to decide where to go for my undergraduate education, I looked through local universities and saw that McMaster [a public research university in Hamilton, Ontario] had a programme called Engineering Physics. It had four areas – including one about lasers – and I thought that seemed fun. The moment I read “lasers”, I had a gut reaction that it would be a good fit for me.
I think every field of work – period – has to be open to everybody. 我認為每一個領域都應該向 所有人開放，沒有例外。 – Dr Strickland
When did you start working on short-pulse lasers? While studying my PhD at the University of Rochester, I met Gérard Mourou [co-recipient of the Nobel Prize] and we started working together on lasers with short pulses – the project that would eventually lead to the Nobel. The ‘short pulse’ means the laser isn’t on for a long time, so you’re not heating materials [such as human tissue] up which can cause complications.
領域，其中一個是激光。我覺得這好像挺好玩的， 為甚麼不讀讀看呢？ 當我看到「鐳射」的那一刻， 我有一種直覺，那會很適合我。 A DS
Could these lasers play a role in cancer treatments in the future? Yes, there is cancer treatment research looking at the possible applications of these lasers. The energy of lasers currently used in hospitals is not high enough to penetrate parts of the body, so we will need to get higher energy beams to do that. It’s still in the proposal stage and there’s a lot of research to be done. If they succeed, that could lead to radiation treatments that aren’t possible now, for instance to treat brain cancer.
我在羅徹斯特大學讀博士（1989年畢業）時認識了 Gérard Mourou（諾貝爾物理學獎共同獲獎人）， 並開始一起研究短脈衝激光，而這個項目最終讓我 們得到了諾貝爾獎。「短脈衝」的意思是，激光 不會運行很長時間，所以不會將物質（比如人體組 織）加熱至可能產生傷害的程度。 未來的癌症治療也可能用到這些激光嗎？ 是的，有癌症治療研究正在探索這些激光的應用可 能。目前醫院所用的激光的能量不夠高，不能穿透身 體的某些部位，所以我們要找到更高能量的光束。 （但是）這個想法目前仍在提議階段，還有很多研究 工作要做。如果成功的話，就可以帶來現在還未可行 的放射性療法，例如用於治療腦癌。
Did you ever have any career setbacks? A
Well, I would say that one career setback occurred after my post-doc. I turned down offers to join the faculty of [different universities] because the man I wanted to marry [now husband Douglas Dykaar, a researcher] lived and worked in New Jersey. [In the intervening years], he’s followed me and took a job so that we could be together. So we’ve both taken turns putting family ahead of our careers. Why do you think it took so long for another woman to win the Nobel Prize in Physics? Over the years there has been bias, but the [Nobel] committee knows that there are women out there who
在我博士後之後有一次吧。我拒絕了（多所大學） 學院的工作邀請，因為我想嫁的人（我現在的丈夫、 物理學家Douglas Dykaar）在新澤西工作和生活。 （但中間幾年）他選擇了跟我走，並在這邊（多倫 多）找了工作，好讓我們可以一起生活。所以我們都 曾經將家庭放在事業的前面。
University of Waterloo
Dr Strickland in her laboratory Strickland博士在她的實驗室
are doing top-notch research. The thing that’s been happening in the last 15 years is that slowly people are becoming aware of bias and things are changing. A
的工作……科學領域中女性是比較少的，所以想到 男性比較容易。人們愈來愈意識到這個行業的障礙 （女性往往要承受其影響），而現實也正在改變。 關鍵是怎樣修正。
Why is fighting discrimination so important? A
I think every field of work – period – has to be open to everybody. We need to encourage everybody to figure out for themselves what they’re good at and encourage them to do it. Otherwise, we’re not using the resources we have on hand. The interview has been condensed for clarity.
為甚麼對抗歧視很重要？ 我認為每一個領域都應該向所有人開放，沒有例外。 我們要鼓勵所有人瞭解自己的長處，並鼓勵他們發展 這些長處，無論他們是怎樣的（性別、年齡、性取向等 等）。否則，我們就沒有善用資源。 以上是經過編輯的訪談記錄。
IN FOCUS 聚焦
CANCER BY THE NUMBERS 癌症數字 From mortality rates to research investment, statistics help make sense of cancer both at home and abroad. 我們從死亡率到投資金額等數據中探討癌症在本地和海外的趨勢。 Research 資料搜集 Chermaine Lee | Graphics 製圖 Fernando Chan
3 MOST COMMON CANCERS 全球三大最常見的癌症
LUNG 肺癌 #1 Globally 全球 (2018) #2 in Hong Kong 香港 (2016) #1 in Macao 澳門 (2016)
BREAST 乳癌 #2 Globally 全球 (2018) #3 in Hong Kong 香港 (2016) #3 in Macao 澳門 (2016)
COLORECTAL 大腸癌 #3 Globally 全球 (2018) #1 in Hong Kong 香港 (2016) #2 in Macao 澳門 (2016)
THE DEATH TOLL 死亡數字 Annual deaths from cancer, at home and abroad. 每年在本地和海外因癌症死亡的人數。
GLOBAL 全球 (2018): 9.55 MILLION OF 7.5 BILLION HONG KONG 香港 (2016): 14,209 OF 7.3 MILLION MACAO 澳門 (2016): 816 OF 612,167 42
AROUND THE WORLD 全球數字 The incidence rates of cancer per 100,000 people in developed countries and territories. 已發展國家和地區以每十萬人計的癌症發病率。
ISRAEL 以色列**: 223.6
UK 英國**: 319.2
MACAO 澳門*: 245
US 美國**: 352.2
JAPAN 日本**: 248
HONG KONG 香港*: 428.9
SINGAPORE 新加坡**: 248.9
AUSTRALIA 澳洲**: 468
SOUTH KOREA 南韓**: 313.5
* 2016 ** 2018
CANCER AT HOME 港澳癌症資料 Common cancers are on the rise in the SARs. 港澳常見癌症的病發率不斷上升。
HONG KONG 香港
1,068 1,745 1,810 0
251 138 122 69
Bronchus & Lung 支氣管和肺癌
2006 2016 4,000
Number of new cases 新個案數字
92 85 71
Prostate 前列腺癌 0
2006 2016 200
Number of new cases 新個案數字
IN FOCUS 聚焦
NEW DRUGS 新的藥物
CANCER SPENDING WORLDWIDE 全球癌症開支 The global market for cancer medicine is increasing 10-13 per cent a year. 全球癌症藥物市場按年增長10至13%。
US$200 BILLION* 2,000億美元
US$133 BILLION 1,330億美元
Cancer drugs released globally between 2012 and 2017. 於2012至2017年間推出的癌症藥物數字。
TOP RESEARCH HUBS 癌症研究樞紐 Which countries publish the most research papers related to cancer? 哪個國家出版的癌症研究報告最多？
GERMANY 德國 Total number of cancer research papers published between 2004 and 2013: 於2004至2013年出版的癌 症研究報告數字：
TOP 5 RISK FACTORS 癌症五大風險因素
Cigarettes have more than 4,000 chemicals including 70 carcinogens (cancer-causing substances). 香煙含有超過4,000種化學物質，包括70種致癌物質。
Exposure to high levels of hormones over time can cause cancer. Examples include menopausal hormone therapy, early menstruation, late menopause, and older pregnancies. 長時間接觸高濃度荷爾蒙可 引致癌症，如接受停經後荷 爾蒙治療、遲來的更年期和 高齡懷孕等等。
Alcohol releases toxic chemicals into the body and irritates organs and tissues, which could trigger DNA mutations. 酒精在人體中會釋出有毒化學物質，刺激 器官及組織，可引致基因突變。
STRESS 壓力 Stress can come from poor digestion, insufficient calories, emotions, environment, malnutrition, among others. 壓力源自消化不良、卡路里不足、 情緒、環境、營養不良等問題。
Our bodies turn sugar into glucose, which serves as the main source of fuel for cancers. 人體會轉化糖份為葡萄糖，是癌細胞的主要能量來源。
F E AT U R E 專 題 故 事
是 時 候 照 一 照了
An estimated 700 women will die of breast cancer in Hong Kong this year. The government is under mounting pressure to introduce a population-wide screening programme to improve early detection. But would it be the right move? 香港今年約有700名女性會死於乳癌，要求政府引入全民篩查， 以及早檢測出這種癌症的壓力日增。但這樣做對嗎？
Words 文 Hazel Knowles
anessa Lai was in her early 40s when she discovered an abnormality in her left breast in September 2015. After undergoing a biopsy, doctors delivered the terrible news: she had stage 1B breast cancer. In the two months that followed, the beauty consultant underwent a lumpectomy to remove the cancerous tissue, followed by four gruelling sessions of chemotherapy. Following her recovery, Lai applied for breast screenings at her local government hospital in Hong Kong. However, it wasn’t as easy to schedule a screening as she had expected. As a cancer survivor, Lai carries a higher than normal risk of developing further cancer due to the likelihood of a recurrence – something which can happen in 3-23 per cent of cases depending on the severity of cancer and treatment received. She believed that having regular mammograms would enable doctors to catch potential cancer early, when it was more treatable. A few weeks after registering for the service, Lai received a shocking note: “Even as a breast cancer survivor, I was told I would have to wait at least two years to get a mammogram at a government hospital,” Lai says. “The letter even suggested that if I wasn’t happy to wait, I should pay to go to private clinic.” Which is exactly what she did. To date, Lai has spent around HK$3,000 on breast cancer screenings, on top of HK$400,000 for her previous surgery and
015年9月，Vanessa Lai發現她的左邊乳房有異狀， 當時她才40出頭。做完活組織檢查之後，醫生告 訴她一個惡耗：她被確診患有1B期乳癌。兩個月 後，這名美容顧問接受了乳房腫瘤切除手術，以及四次 叫人死去活來的化療。 康復之後，Vanessa在她那一區的香港政府醫院申請 做乳房檢查。不過，預約檢查並沒有想像中那麼容易。 作為癌症康復者，Vanessa患癌的風險比常人高，因為 她可能會復發，而這個機率在3%到23%之間，視乎癌 症的嚴重程度和治療方法而不同。她相信，定期做乳房 X光造影檢查可以讓醫生及早發現潛在的癌症，而那時 治療會更有效。 登記預約該服務之後幾個星期，Vanessa收到一個通 知，令她非常震驚。「就算我是乳癌康復者，我也必須 等至少兩年，才能在政府醫院做乳房X光造影檢查。那 封信甚至建議，如果我不想等，我應該給錢去看私家 醫生。」Vanessa說。 而她正是這樣做了。到目前為止，Vanessa已經在乳 癌檢查上花了3,000元港幣，此前她已經在手術和治療 上花了40萬元。她的經歷對香港許多女性來講並不陌 生。一些專家認為，這反映了香港政府無法保護女性， 使她們免受不斷增加的乳癌威脅。
癌症來勢洶洶 香港癌症資料統計中心數據顯示，2016年有4,108名女 性被確診乳癌，702人死亡。這意味著，香港每天平均 有11名女性被確診乳癌。 ARIANA 2019
treatment. Her experience is a familiar one for many Hong Kong women. To some experts, it reflects the government’s failure to protect women from the increasing threat of breast cancer.
CANCER ON THE RISE Statistics from the Hong Kong Cancer Registry show that 4,108 women were diagnosed with breast cancer and 702 died in 2016. That means 11 women are diagnosed with cancer in Hong Kong every single day. Disturbingly, the figures reveal an upward trend, with the number of cases tripling over the last 20 years. One in every 16 women will find themselves battling breast cancer during their lifetime, making it the most common cancer and the third most deadly cancer among Hong Kong women. Although it is not known exactly why some people develop cancer and others do not, studies have identified certain factors such as lifestyle, genetics and hormones which increase a person’s risk of developing cancer in their lifetime. According to the Hong Kong Breast Cancer Foundation (HKBCF) around 5 per cent of breast cancer cases in the city are thought to be caused by genetics, more specifically, the BRCA1 and 2 gene mutations. The former is carried by actress Angelina Jolie and results in an 80 per cent chance of the carrier developing breast cancer in their lifetime. For women who do not carry these genes, diets rich in animal fat and dairy products are believed to increase risk, along with smoking, drinking alcohol and lack of exercise. With breast cancer, female hormones are also believed to play a role, which is why women who have greater exposure to hormones during their reproductive lifetime – such as those who do not have children, have fewer children, and those who start menstruation early or go through the menopause late – may be more at risk to breast cancer. A survey conducted by the Hong Kong Breast Cancer Registry last year has also found that high stress levels increase the risk of breast cancer by 240 per cent. According to Dr Polly Cheung Suk-yee, founder of HKBCF, the alarming increase in breast cancer cases in Hong Kong might be the result of industrialisation. 48
令人不安的是，數據還呈現出上升的趨勢：過去20 年，乳癌個案數字增加了兩倍有多。每16名女性中就 有一名會被確診乳癌，使之成為香港女性中最常見的癌 症，以及第三號癌症殺手。 雖然目前尚未釐清為甚麼有些人會患癌，而另一些 不會，但研究已經發現一些因素會增加人們患上癌症的 風險，比如生活習慣、基因和荷爾蒙。 香港乳癌基金會指出，本地大約5%的乳癌病例據稱 是由基因引起的，更準確來說，是BRCA1號和2號基因 的突變。前一種突變基因，女演員Angelina Jolie也有， 而有這種突變基因的人，有八成機率會患上乳癌。 至於沒有這些突變基因的女性，如果她們的飲食中 有大量動物脂肪和乳製品，也可能增加患癌風險。此 外，吸煙、飲酒和缺乏運動也是影響因素。女性荷爾 蒙對乳癌也有影響，這就是為甚麼在生殖年期接觸較 多荷爾蒙的女性，比如沒有生育、較少生育，以及較 早開始來月經或較遲開始更年期的女性，患上乳癌的 風險更高。 香港乳癌資料庫去年所做的一項調查發現，壓力大會 讓患乳癌風險增加240%。香港乳癌基金會創辦人張淑儀 醫生指出，香港乳癌病例的增加值得警惕，這可能是社會 工業化的結果。 張醫生說：「經濟改善了，人們更富有了，飲食習 慣也發生了改變，多了肉類和奶製品，人們飲酒更多， 而運動更少。女性也減少了生育、母乳餵哺，而多了工 作。這些因素都增加了罹患乳癌的風險。」 這也是全球關注的問題。美國癌症研究所指出，2018 年，全球有超過200萬宗新增乳癌個案，而2012年只有 170萬宗。隨著發病率增加，一些女性甚至在做過基因測 試之後，選擇接受預防性的乳房切除手術。 其中一個知名案例就是女演員Angelina Jolie。2013年 5月，37歲的她宣佈，她接受了雙乳切除和重建手術，因 為她發現自己有BRCA1突變基因，患上乳癌的風險高達 87%。Jolie的媽媽便是因為乳癌而去世，終年56歲。Jolie 在接受《紐約時報》訪問時解釋：「我決定要主動應 對，盡我所能將風險減至最低。」 像 Jolie 這樣的案例很少見，而且通常有家族乳癌 病史的女性才會被建議做基因測試，但世界衛生組織 也建議，資源充足國家的政府應該推行全民篩查，為 50 到 69 歲之間的女性提供定期的乳房 X 光造影檢查服 務。這類計劃已經至少在 34 個國家和地區推行，包括 台灣、南韓、日本、英國和澳洲，而其減少癌症致死 的成功率也相當高。 香港仍未躋身這個行列。特區政府並未推出全民篩 查計劃，而且，目前政府仍只建議被定義為高風險的女
LKS Faculty of Medicine, The University of Hong Kong
F E AT U R E 專 題 故 事
Professor Ava Kwong Hoi-wa performing a mastectomy at Hong Kong University 鄺靄慧教授在 香港大學施行乳 房切除手術
“The economy improved and people became wealthier, diets changed to include more meat and dairy products, people drank more alcohol and exercised less,” says Dr Cheung. “Women are having fewer children, breastfeeding less and working more. These are all things that heighten the risk of breast cancer.” It’s a global concern, too. According to the American Institute for Cancer Research, there were over 2 million new breast cancer cases worldwide in 2018 compared with 1.7 million in 2012. As the incidence rate rises, some women are even having preemptive mastectomies, following genetic testing. One such famous case was that of actress Angelina Jolie who, in May 2013 at the age of 37, announced she had undergone a double mastectomy and reconstructive surgery after discovering she carried the BRCA1 gene and had an 87 per cent lifetime risk of developing
性做年度篩查，比如有乳癌家族病史，或者有BRCA1號 和2號基因突變的女性。 不過，香港乳癌基金會指出，這個高風險定義只對 5%的乳癌病人適用，意思是，目前的政府指引剝奪了餘 下95%女性及早檢測乳癌的機會。 結果是，許多香港女性要麼通過NGO和慈善機構尋 求免費或受資助的檢查，要麼要去私家診所和醫院，以 800到3,600元港幣不等的價格做檢查。就算有買私人醫 療保險的女性，最終可能都要自己全額支付費用，因為 絕大部分的保單都只包癌症治療而不包預防性檢查。 香港乳癌基金會的張醫生表示，更令人憂慮的是， 「有些人選擇完全不檢查。」基金會是一個致力提高乳 房健康意識的非牟利機構，它會提供免費和受資助的檢 查，並支援癌症病人。因此，基金會與全港約四成的乳 癌病人都有聯繫。 她說：「我們的經驗是，85%（的病例）是女性偶然 發現乳房有腫塊，之後發現是癌症。這就是香港的診斷 ARIANA 2019
F E AT U R E 專 題 故 事
breast cancer. At the time, the actress, whose own mother had died of cancer aged 56, explained her decision in the New York Times saying: “I decided to be proactive and to minimise the risk as much as I could.” Cases like Jolie’s are rare – and genetic testing are only usually advised when a woman has a family history of breast cancer. For the general population, the World Health Organisation recommends that governments in well-resourced countries adopt population-wide screenings in the form of regular mammograms for women aged 50-69. Such programmes have already been implemented in at least 34 countries and regions, including Taiwan, South Korea, Japan, the UK and Australia, often with a good success rate in reducing cancer deaths. Hong Kong doesn’t feature on that list. The SAR does not have a screening programme and, currently, the government only recommends annual screening for women who are considered high risk, such as those with a family history of breast cancer or those carrying the BRCA1 and 2 gene mutations. However, according to the HKBCF, this high-risk definition applies to only 5 per cent of breast cancer patients which means that the current government guidelines deprive the remaining 95 per cent of women of the means of detecting cancer early. As a result, many women in Hong Kong either seek free and subsidised screening from NGOs and charities or pay between HK$800 and HK$3,600 for screenings at private clinics and hospitals. Even those with private health insurance may end up funding screening themselves, as although most policies cover treatment for cancer, not all cover preventive measures. More alarmingly, “some choose to go without,” says HKBCF’s Dr Cheung. The HKBCF is a nonprofit organisation dedicated to promoting breast health awareness and providing free and subsidised screening and support for cancer patients. As such, it comes into contact with around 40 per cent of all breast cancer cases in Hong Kong. “Our experience is that 85 per cent [of those cases] involve women incidentally discovering a lump that turns out to be cancer,” she says. “This is the way of diagnosis in Hong Kong, and it is far backwards compared to other developed cities. Only 6-8 per cent of cases are detected through mammograms. That is peanuts.” 50
方式，與其他發達地區相比，這遠遠落後。只有6%到 8%的案例是通過乳房X光造影檢查發現的。根本是滄 海一粟。」 張醫生認為這個數據完全不可接受，尤其是低收入 女性中的檢查率甚至更低。這些女性往往對乳癌沒甚 麼認識，她們也沒有錢和時間做X光造影檢查。 香港乳癌基金會2011年的一項研究發現，超過八成 低收入家庭的乳癌病人，確診前從未接受過乳房X光造 影檢查。研究還發現，越窮的女性，被確診晚期乳癌 的幾率更大。 張醫生說，數字本身已經說明很多問題。香港乳癌 基金會發現，大約24%的本地乳癌個案都是在較晚期 確診的，而在已經實行全民篩查的國家，這個比例只 有15%。 她說：「及早發現乳癌至關重要，而篩查可以發現 隱藏的癌症（在第零期和第一期的）。在早期，病人存 活率高達90%。超過60%的病人不需要做化療，而且只 需要做乳房腫瘤切除手術（只移除腫瘤和周邊組織）， 而不用做乳房切除手術。」 張醫生補充，相較之下，如果在第四期才發現， 平均五年存活率則只有20%，而10年存活率更只有10%。 「我們每年做大約4,000到5,000個乳房X光造影檢查， 但這個數字其實非常小，如果你知道香港有140萬名 超過40歲的女性，而她們應該每兩年接受一次檢查的 話。」
為了生存的檢 香港的情況很嚴峻，尤其是當那些有政府支持篩查計 劃的國家已看見成效。在台灣，一項研究發現，每兩 年做一次乳房X光造影檢查可在10年間將乳癌致死率 減少40%，以及將第二期或更晚期乳癌發病率減少近 30%。 那麼，為甚麼香港還沒有響應這個倡議呢？一些報 告指出乳房X光造影檢查含有輻射，質疑女性定期暴露 在這樣的輻射下是否安全。 不過張醫生指出，人們在乳房X光造影檢查過程中 接受到的輻射是很低劑量的，每次只有0.36毫西弗。她 說：「這是非常安全的。在香港，我們每年接受到的 背景輻射就有二到三毫西弗，也就是相當於一年做八 次乳房造影。我們還沒有看到任何因為乳房X光造影檢 查而致癌的報告。」 另一個香港政府長期用來推搪實施全民篩查的理由 是，缺乏本地數據支持。而西方國家和亞洲國家乳癌 發病率不同的事實，則進一步強化了需要更多本地數 據的這個說法。
It’s a statistic Dr Cheung finds unacceptable, especially as the screening rate is even lower among low-income women, who often lack awareness of breast cancer, as well as the time and money to undergo mammograms. A 2011 study by the HKBCF revealed that more than 80 per cent of breast cancer patients living in low-income households had never had a mammogram before diagnosis. It also found that poorer women were more likely to be diagnosed with advanced-stage breast cancer. Dr Cheung says the numbers speak for themselves. Around 24 per cent of breast cancer cases are diagnosed at an advanced stage, compared with 15 per cent in countries that have implemented population-wide screening, according to the HKBCF. “It is crucial to discover breast cancer early, and screening can detect hidden cancers [those at stages 0 and 1],” she says. “At an early stage, the survival rate is 90 per cent. More than 60 per cent of patients do not need chemotherapy and only need a lumpectomy [removal of cancer tumour and surrounding tissue] rather than a mastectomy.” In contrast, when discovered at stage 4, the average five-year survival rate is only 20 per cent, and just 10 per cent for 10 years, she adds. “We conduct about 4,000-5,000 mammograms a year. But this is a very small number when you consider there are 1.4 million women in Hong Kong over the age of 40 who should be receiving screenings every two years.”
WOMEN’S CANCERS IN HONG KONG 香港女性癌症數字
TESTING FOR SURVIVAL
It’s a dire picture, particularly when juxtaposed with countries where government-backed screening programmes appear to be effective. In Taiwan, a study found that biennial mammography screenings cut the incidence of breast cancer mortality by 40 per cent and reduced the cases of stage 2 and later cancer by nearly 30 per cent over a period of 10 years. Why, then, has Hong Kong not implemented the initiative? Some reports have raised fears over the amount of radiation exposure contained in mammograms and questioned whether it was safe for women to undergo exposure at this level on a regular basis.
The incidence of breast cancer has increased four-fold since the 1990s, while deaths have shot up by 150 per cent. 自 20世紀 90年代以來，乳癌的發病率增加至四倍，而死亡人數則增 加了 1.5倍。 BREAST CANCER 乳癌
CERVICAL CANCER 宮頸癌
100 New cases
Source: Hong Kong Cancer Registry
F E AT U R E 專 題 故 事
However, Dr Cheung points out that the dose of radiation received from a mammogram is very low at 0.36 millisieverts (mSv) per mammogram. “It is very safe. In Hong Kong, we are exposed to background radiation of 2-3 mSv a year – that’s like having eight mammograms a year,” she says. “We have not seen any reports of screening mammogram-induced cancer.” Another argument used consistently by the Hong Kong government against a population-wide screening programme is the lack of local data to support it, adding that differences in breast cancer incidences between Western countries and Asia has furthered the argument that more local studies were needed. “It was thought that women here would not have the same breast cancer rate as the Western population, but the Taiwan study offers solid data involving Chinese women and it is definitely something Hong Kong should be looking at,” says Dr Cheung. It is these statistics that the HKBCF used last year in a public policy submission urging the government to strengthen awareness and work with the private sector and NGOs to introduce screening in three phases: the first covering high-risk women; the second for low-income women; and a final phase of population-wide screening. Dr Cheung says the Hong Kong government’s Department of Health (DoH) – the body that oversees public healthcare policies in the city – acknowledged receipt of the submission but had not responded to their requests. It also declined a face-to-face or phone interview for this article. In a written response to our questions, however, a press spokesperson said that “the government attaches great importance to cancer prevention and current policy is grounded on fact, scientific evidence, and public interest.” The response also added that the Taiwanese data used to criticise Hong Kong has been misinterpreted by screening advocates, and the evidence reported is “far less robust” and possibly “misleading.” “From a scientific perspective, that particular Taiwan study does not add weight to the scientific debate of universal mammography screening programme,” said the statement. According to the DoH, population-wide mammography screening continues to be a subject 52
of controversy, and there is insufficient evidence to support its introduction in Hong Kong. “Increasing studies from the West reveal potential harm, such as false-positives, false negatives, over-diagnosis and potential complications arising from subsequent invasive investigations or treatment that may outweigh benefits.” Due to the absence of local data on breast screening, the DoH has commissioned a study by the University of Hong Kong that will investigate risk factors. This is due to be completed later this year and will be used to formulate a future plan for screening. In the meantime, the DoH advises any woman considering a mammogram for their own “personal protection” to seek advice from their doctor about the benefits and harms before going ahead. Professor Ava Kwong Hoi-wa – an expert in breast cancer genetics, chief of breast surgery at the Department of Surgery of the University of Hong Kong, and the founder of the Hong Kong Hereditary Breast Cancer Family Registry charity – is involved in the study. She believes it is right to adopt a cautious approach to screening, especially in the light of recent research. One such piece of research, a 2013 review by global independent medical research network Cochrane, analysed data from several studies and concluded that for every 2,000 women screened over a 10-year period, one was prevented from dying. Meanwhile 10 healthy subjects were treated unnecessarily and 200 suffered psychological stress as a result of false positive results. A false positive occurs when the mammogram picks up an abnormality which after further investigation turns out to be something other than a cancer, such as scar tissue or a calcium deposit. “After that Cochrane review came out, the whole world started to rethink screening, asking ‘Should we be screening everyone or just those at major risk?’” she says. “In a way, the government is being diligent in wanting to look more into screening.” “Japan and Korea would want their own data before making a decision. I think it would be wrong if the government was only looking at its own data and not looking at other countries data. But that is not the case. They are looking at all data. They want to make sure whatever they decide it is the right thing for Hong Kong.”
「普遍認為本地女性患乳癌的機率和西方不同，但台灣的 研究已提供了有關華人女性的翔實數據，而香港絕對應該參 考。」張醫生說。 去年，香港乳癌基金會就用這些數據提交了一份政策建 議，敦促政府加強意識，並與私營部門和 NGO 合作，分三 階段引入全民篩查：首先覆蓋高風險女性，然後是低收入女 性，最後實現全民篩查。 張醫生說，負責公共健康政策的香港衛生署確認收到意見 書，但尚未回覆他們的訴求。 衛生署也拒絕接受面談訪問或電話訪問。在回應我們提問 的一份書面回覆中，政府的一名發言人說：「政府重視預防癌 症，而目前政策是基於事實、科學證據和公共利益制定的。」 這份回覆還指出，篩查倡議者誤讀了被用於批評香港的台 灣數據，有關證據「遠沒有那麼有力」，甚至可能是「有誤 導性」。 政府聲明稱：「從科學角度看，這份台灣研究對全民乳房 X 光造影檢查計劃的科學辯論並無進益。」 衛生署表示，全民乳房X光造影檢查會繼續存在爭議，而 目前並無充分理據支持香港引入。「西方有越來越多研究指 出，連續的入侵性檢查或治療具潛在風險，包括假陽性報告、 假陰性報告、過度診斷和潛在併發症等，可能會弊大於利。」 由於沒有本地的乳房篩查數據，衛生署已經委託香港大 學進行一項關於風險因素的研究。這份研究將於今年稍後完 成，結果也將用於制訂未來的篩查政策。 同時，衛生署建議，任何出於「自我保護」而考慮做乳房 X 光造影檢查的女性，應該先諮詢醫生，在進行檢查前瞭解清 楚好處和壞處。 鄺靄慧教授是乳癌基因方面的專家，香港大學外科學系乳 腺外科主任，以及慈善組織香港遺傳性乳癌家族資料庫的創 辦人。她也參與了衛生署委託的港大研究。鄺教授認為，對 篩查持有謹慎態度是對的，尤其是基於最近的研究發現。 在這些研究當中，有一份是全球獨立醫療研究網絡 Cochrane 在 2013 年所做的。該組織分析了其他幾個研究的數 據，並得出結論：每 2,000 名在 10 年間接受過 X 光造影檢查的 女性，只有一名免於死亡。同時，有 10 人並未患病而接受了 不必要的治療，有 200 人因為假陽性結果而承受心理壓力。假 陽性結果是指， X 光造影檢查發現異常，但之後進一步檢查發 現那不是癌症——比如只是疤痕組織或鈣沉積。 她說：「 Cochrane 的研究結果發佈之後，全世界開始反 思 X 光造影檢查，並提出『我們應該讓所有人都接受檢查，還 是只讓那些高風險者做？』的疑問。在某種程度上，政府只 是在努力，希望對檢查瞭解更多。」 「日本和南韓希望在作出決定之前建立起自己的數據。我 認為，如果政府只看本地數據，而不看其他國家的數據，是 不對的。但情況不是這樣。他們全部數據都會看。他們希望 確保做出對香港來說最正確的決定。」
AROUND THE WORLD 環球概況 From Finland to Taiwan, we take a look at countries where screening programmes have contributed to a decline in deaths. 從芬蘭到台灣，我們來看看那些篩查 計劃導致死亡率下降的國家。
NEW ZEALAND 紐西蘭
DECREASE IN MORTALITY
22% 39% 41% 17% 41%
Source: Hong Kong Breast Screening Foundation
F E AT U R E 專 題 故 事
A BALANCED APPROACH There are logical reasons why the DoH wants local data: one being that breast cancer is known to vary by race and ethnicity. Professor Kwong points out that the medical community has already recognised there are differences between breast cancer incidences and women in the West and those in Asia, the latter being more likely to be diagnosed at an earlier age, with the median of diagnosis being 56 years compared to 62 in the United States and 60 in Australia. She says women in Asia also have denser breast tissue, which can affect the sensitivity of mammograms; dense tissue can look like an abnormality during screening and lead to false positives or false negatives. One study by the Institute of Radiology at the University of Prishtina, Kosovo, in 2009 found that the sensitivity of mammograms was reduced as the level of breast density increased, ranging from 82.2 per cent sensitivity for fatty breasts compared to 23.7 per cent for dense breasts. “As a breast cancer surgeon, of course, I want women to be diagnosed early but I can see both the positive and negative sides of population-wide screening,” says Professor Kwong. She says it is logical to wait for the study’s results, adding that even if the government decides populationwide screening is the way forward, it does not currently have the trained staff or resources to implement such a programme overnight – a successful screening programme will require diligent planning. In recent years, the government has increased its efforts to raise public awareness of breast cancer. But for those who have experienced cancer, like Vanessa Lai, these efforts are still lacking. Waiting lists for mammograms are too long and too many women still do not understand their risks or where to go for help, she says. While Lai knew how to perform self-examinations and caught her cancer early, others don’t have the same recovery story to tell. “I hope that will change. I hope the government will pay more attention to the issue of breast cancer and will consider population-wide screening. If it is caught early, the survival and recovery rate is much higher, and more women, like me, will have the chance of complete recovery.” 54
LKS Faculty of Medicine, The University of Hong Kong
衛生署想要本地數據是有理由的：其中 之一是，乳癌會因種族和民族而不同。 鄺教授指出，醫學界已經意識到，西方 和亞洲女性患乳癌的狀況有所不同，後 者更可能在較年輕時被確診，確診年齡 中位數是 52 歲，而在美國和澳洲分別是 62 歲和 60 歲。 她說，亞洲女性乳房組織也比較 密，而這可能影響乳房 X 光造影檢查的 敏感度。稠密的組織在造影的時候可能 被視為異常，從而導致假陽性或假陰性 的診斷。 位於科索沃的普里什蒂納大學放射 學中心的一項研究在 2009 年發現，乳 房 X 光造影檢查的敏感度會隨著乳房組 織密度的增加而下降，其對較多脂肪的 乳房組織敏感度達到 82.2% ，而對較厚 的乳房組織敏感度只有 23.7% 。 「作為乳癌外科手術醫生，我當然 希望女性可以及早診斷，但我也看到全 民篩查有好有壞。」鄺教授說。 她說，等待更多研究結果是合理 的，並指就算政府確定未來要落實全民 篩查，現在也沒有足夠受過訓練的專業 人士和資源可以在一夜之間將計劃付諸 實行——成功的篩查計劃必須基於周詳 的部署。 近年，政府已經更加努力提高公 眾對乳癌的認識。然而，對於 Vanessa Lai 這樣經歷過癌症的人而言，這些努 力仍然不夠。她說，乳房 X 光造影檢查 的輪候名單太長，太多女性仍然不瞭解 自己面對的風險，也不知道可以去哪 裡求助。 雖然 Vanessa 知道怎樣自己做檢 查，並及早發現了癌症，但其他人未 必有同樣的復康經歷。「我希望這會改 變。我希望政府可以更重視癌症問題， 並推行全民篩查。如果能及早發現腫 瘤，存活和康復的機率都會更高，而且 更多像我這樣的女性，可以有機會完全 康復。」 ARIANA 2019
F E AT U R E 專 題 故 事
SELF-EXAM 101 自行檢查 101
While the debate continues over breast cancer screening, the best weapon is awareness. 有關乳癌檢查的辯論仍會繼續，而最佳武器仍然是自覺。
The Department of Health recommends women of all ages take time
during daily activities, such as dressing and bathing, to learn how their
own breasts look and feel. Consult a doctor if you notice:
A change in size or shape of breast
Dimpling or puckering of the skin
D ischarge or bleeding from the nipple
Rash or redness around the nipple and change in nipple position
Any consistent pain or discomfort in one breast
A new lump, bump or thickening in one breast which
is different from the other
FIND HELP 尋求協助
Hong Kong Breast Cancer Foundation
Hong Kong Hereditary Breast Cancer Family Registry
The Family Planning Association of Hong Kong
A DRIVING FORCE 前行的力量
A survivor, a wife, a daughter. We trace the journeys of three women, each affected by cancer in their own way. ATUM/ 蘇杭街一號
Words 文 Kate Springer | Photography 攝影 Anthony Kwan
F E AT U R E 專 題 故 事
oris Leung is the archetypal Hong Kong career woman. She’s self-motivated and ambitious, conscientious and incredibly focused. So focused, in fact, that she rarely stops to take a breath. Or, at least, that’s how she used to be. “I loved to work. I didn’t marry, I have no children,” says Doris, as her father passes her a cup of healing peanut skin tea (thought to boost blood platelet counts). We’re in Leung’s family’s home in Tsuen Wan, where she has spent the last year battling breast cancer. “My lifestyle was all about taking care of my business – 24 hours a day, seven days a week. Even when I [went to bed], my brain couldn’t switch off.” For 16 years, Leung worked as an i-Cable news reporter, covering the plight of minorities in Hong Kong. Through her work, she gave a voice to the disenfranchised. Then in 2006, her mother developed brain cancer and their world changed. “I watched my mum become more impaired day after day. Finally, she became permanently disabled and had to use a wheelchair,” she recalls. “Getting around was challenging.” Leung researched barrier-free transport services but found the options underwhelming, typically costing three times more than a usual taxi and operating without insurance protection for riders. The absence of quality services motivated Doris to find a solution. While both Doris and her father cared for her mum, Doris worked double-time to bring the idea to life. “I hoped my mum’s life would be fulfilled after seeing Diamond Cab on the road,” says Doris. In 2011, she officially introduced the city’s first wheelchair-accessible taxis. Her mum joined the launch event to celebrate. “She was like a VIP,” recalls Doris with a smile. In June 2012, her mum passed away. Afterwards, Doris worked on Diamond Cab night and day. “The business was always on my mind – it was my baby,” says Doris. “I worried about drivers getting sick, losing advertising contracts, car maintenance ... I just felt this heavy responsibility on my shoulders and didn’t know how to seek help. Since I founded Diamond Cab, I was like a car without brakes.” While Doris worked around the clock, her health began to falter. In 2016, she was diagnosed 58
淑儀（Doris）是個典型的香港事業型女性： 她積極主動、雄心勃勃、勤勉認真且專心致 志。事實上，她專注到鮮有停下來喘息的空 間，至少，她以前習慣如此。 「我熱愛工作，我沒有結婚，也沒有小孩。」 Doris一邊說著，她父親一邊將一杯養生的花生衣水 （被認為有增加血小板的功效）遞給她。我們到訪 Doris位於荃灣的家中，這是她去年跟乳癌抗戰的地 方。「我的生活方式就是把時間全都放在事業上── 每週七天，每天二十四小時。即使我上到床上，腦袋 都沒法停止運作。」 16年來，Doris在有線電視台當新聞記者，報導香港 少數族裔的困境。通過她的工作，她為那些被剝奪公民 權的群體發聲。但在2006年，當她的母親患上腦癌，她 們的世界從此改變了。 「我看著媽媽每天不斷衰弱下去，最後，她變成永 久殘疾，需要使用輪椅。每次走動都困難重重。」她 回憶說。Doris 搜尋無障礙的交通服務，但選擇卻令人 失望，除了比坐的士普遍貴上至少三倍，乘客更沒有 保險保障。 缺乏有質素的服務驅使Doris找出一個解決方法。當 Doris和父親都要照顧母親的時候，Doris加倍工作，以 實現這個構想。她說：「我希望『鑽的』推出後，媽媽 的生活能更充實。」在2011年，她成功引入香港首架可 供輪椅上落的的士。她母親參與了發佈會。Doris 笑著憶 述：「她像個貴賓般。」 2012年6月，她的母親逝世。之後，Doris日以繼夜 地為鑽的勞心勞力。她說：「我時時刻刻都想著這個企 業，它是我的孩子。我會擔心司機生病、失去廣告合 約、車輛維修……我感覺到肩上的責任重重地壓下來， 但我不知要如何求助。在我成立鑽的後，我就似不能煞 停的車一般。」 當Doris日日如是地工作時，她的健康開始出現問題。 2016年，她被驗出右邊乳房長了良性腫瘤，而同一時 間，她遭受著頭痛和疲勞的煎熬，後來情況變得更糟。 「有一天我洗澡時，發現左邊的乳頭向下垂，我就知道 一定是乳房內部有問題，乳頭才會這樣收縮。」 Doris馬上預約超聲波和乳房X光造影檢查，隨之證 實了她的恐懼：她患上了乳癌。 Doris說道：「在完成檢查後，我終於意識到自己是 癌症病患者。但我沒感到恐慌，我早有心理準備，因為 我有些好友也曾患上過乳癌。」 在她的「乳癌姊妹」建議下，她約見了香港乳癌基 金會創辦人張淑儀醫生，她們在張醫生的診所見面。 正電子掃描和及後的活組織切片檢查顯示，她的癌症
with a benign tumour in her right breast, while also suffering from headaches and fatigue. Then things got worse. “One day while I was in the shower, I noticed that my left nipple was drooping. I knew that something must be happening inside the breast, to make the nipple contract.” Doris immediately booked an ultrasound and mammogram, which confirmed what she feared: she had breast cancer. “After the tests [it finally hit me] that I am a cancer patient. But I didn’t panic. I had some preparation because I have very good friends who have had breast cancer,” says Doris. At the advice of her ‘breast cancer sisters’, she scheduled an appointment with Dr Polly Cheung, founder of the Hong Kong Breast Cancer Foundation, at her clinic. A PET scan, followed by a biopsy, revealed that the cancer was already at stage 3, with one 9-centimetre-wide tumour in her left breast and multiple lumps in her left armpit. Since Doris had good health insurance, which she arranged herself, a breast cancer sister encouraged her to arrange chemotherapy at a private clinic as soon as possible, rather than wait for up to six weeks at a public facility. She did, but not before making another difficult decision: stepping down from Diamond Cab. “I knew I had to focus on my treatment. I knew I had to learn to let go,” she says. In the meantime, Doris found an acting CEO to take care of the company through her treatment regimen. Her oncologist prescribed six rounds of Taxol and Carboplatin injections – a common chemotherapy regimen usually given for localised breast cancers – across the next three months, with an aim to shrink the tumours and make it easier to operate. “I was really lucky,” says Doris. “After just one dosage, my nipple rebounded, and the breast softened again. I also didn’t have many side effects; just some itchy rashes on my skin.” The tumours’ density improved, as did Doris’s [white blood cell count. By all measures, the treatment was working. “Chemo doesn’t work on everyone. But in my case, it shrunk my main tumour [in her breast] and kept the cancer from spreading elsewhere in my body.” Toward the end of the regimen, Doris’s hair started
to fall out. She didn’t feel sad or ashamed. On the contrary, her new appearance sparked an idea to spread a message to women with cancer. “A lot of women are very upset about losing their hair. That seems like a sad way to look at it, to feel like you have to hide under a wig. I wanted to change perceptions,” says Doris. “My good friends and I came up with an idea to do a photo campaign, so that we could flip this notion: Bald isn’t ugly. Bald is beautiful.” A few local news agencies, including Ming Pao, covered the campaign, which depicts Doris and several friends proudly displaying their bald heads, with the Hong Kong skyline as a backdrop. “On the side of my head, you can see a tattoo. It says ‘let go’, which is a reference to Diamond Cab. I had to let go of the company to get healthy.” Following chemo, Doris had a mastectomy to remove the tumour in her breast, then another round of chemo to address remaining lumps in her armpit. There were some serious considerations regarding breast reconstruction surgery. In the end, Doris decided to undergo a full reconstruction. Doctors took muscle and fat from her lower abdomen and relocated it to her breast. “It’s a big surgery, lasting about four to six hours,” explains Doris. “But they connect the nerves and blood vessels, so you have feeling in your breast. It’s incredible.” The operation alone cost roughly HK$400,000 and, thankfully, was fully covered by her insurance. During her recovery, Doris couldn’t lift her arms, which made showering and getting dressed particularly challenging. After a few weeks of rehabilitation exercises her condition improved. “When I first got home from surgery, that’s when I cried the most. I imagined that I wouldn’t be able to lift up my arm for the rest of my life. It made me think of my mum, and how much she suffered.” Eventually, Doris regained her normal range of motion, but she started experiencing painful side effects, such as seroma – essentially water accumulation under her armpits. “It was like having a char siu bao stuck right here,” she says jokingly, pointing to her underarm. “After Dr Cheung drained it with a needle, she said, ‘Look, now it’s just a siu mai.’ It felt so much better.” ARIANA 2019
F E AT U R E 專 題 故 事
Although the first round of chemotherapy had slowed the growth rate of the remaining lumps in her armpits, the cancer was still in her lymph nodes. Doris prepared for a second round of chemo, this time with four injections of Adriamycin Cytoxan at two-to three-week intervals. She finished last April, followed almost immediately by 25 sessions of radiotherapy throughout May. “I was really worried that I’d be isolated,” she recalls. “I love interacting with people, talking to others. But I couldn’t go out much because it was too dangerous [due to the risk of infection]. It felt like a prison.” Doris found a healthy outlet through Facebook. She started documenting her journey on the platform, sharing informative, honest and often humorous posts. “No one really talks about breast cancer in depth... the best diet, surgery options, dialogues with doctors, insurance... I feel like I’m sharing something useful with others.” It resonated. Her “bald is beautiful” campaign, for example, garnered more than 200,000 views. While Doris found a productive way to channel her pentup energy, she crept closer to the finish line. In July 2018, she embarked on the last step in her treatment programme: oral chemotherapy. She took eight cycles in total – one every three weeks. It has been her most difficult treatment yet. “[The oral chemo] has been really hard for me. I developed hand-foot-syndrome [a side effect of chemo], so my feet are really red, dry and swollen,” she says, pulling down her sock to reveal a patch of flaky skin, so red it looks as if it’d be hot to touch. “Sometimes, I can’t go out without a walker to support me, because my feet hurt so much.” In February, Doris started her last round of oral chemo. And as her treatment comes to a close, she’s been reflecting on her journey. “I think it’s very meaningful to talk about my change,” says Doris. “I didn’t know how to stop before, but now I understand what’s really important.” To that end, she’s made a series of pivotal shifts in her lifestyle. Now, she follows a plant-heavy diet, eats less meat, eschews dairy (research shows that foods containing hormones, like dairy, are considered a cancer risk), tries to get at least eight hours of sleep per night, and has drastically reduced the amount of stress in her life. 60
已進入第三期，左邊乳房中有個九厘米闊的腫瘤，更 有數塊腫塊在她的左邊腋下。 因為Doris早前已自行購買了優質的健康保險，一 個乳癌姊妹鼓勵她盡快安排私家腫瘤科醫生做化療， 否則在公立醫院要排期最長六星期。她聽從了建議，但 她要為此做另一個艱難的決定：辭去在鑽的的職務。她 說：「我知道我要專注於治療上，我知道我要學會放 下。」 這時，Doris找到了一位代理行政總裁，在她接受治療 的時候打點公司事務。腫瘤科醫生開了六次泰素和卡鉑針 劑（局部乳癌的常見化療療程），旨在使腫瘤在三個月內 縮小，便於切除。 Doris說道：「我當時真的很幸運，使用一次劑量 後，我的乳頭就回彈了，乳房也變軟了，而且沒有出現 很多副作用，只是皮膚出了一些會發癢的疹子。」
“Bald is beautiful.” 「光頭就是美麗。」 – Doris Leung
當Doris的腫瘤密度減低後，她 的白血球數量亦隨之下降。從各個 角度看，這次化療是成功的。「化 療並不是對人人都有效，但在我的 情況來說，它縮小了我主要的（乳 房）腫瘤，避免了它擴散到身體的 其他部位。」 在療程的尾聲，Doris開始脫 髮，但她沒有傷心和難堪。相反， 她的新外表驅使她想傳播一個新的 訊息予患癌的女性。Doris說： 「很多女性會因為脫髮而感到非常 傷心，感覺必須把禿頭藏在假髮之 下，這種看法令人很難過。我和我 的好友想出了一個相片運動，希望
可以改變大家的固有看法：禿頭不 醜，禿頭是美麗的。」 數家本地的新聞媒體，包括《明 報》，都有報導這個運動，記錄了 Doris和數個朋友在香港天際的背景中 自豪地向鏡頭露出禿頭。「在我頭部 的側面有一個刺青，寫著『放下』， 指的便是鑽的，我要為我的健康放下 這間公司。」 在化療後，Doris做了乳房切除手 術，除去了乳房中的腫瘤，之後再 進行另一輪化療，去除剩餘在腋下 的腫塊。 在決定做乳房切割手術前，有很 多認真的問題需要思考。Doris要考
慮切除乳房後會否做乳房重建手術。 她最後選擇將小腹上的肌肉和脂肪移 植到乳房上。Doris解釋道：「那是 一個大手術，進行了四至六小時。但 他們會連接神經和血管，所以你會感 覺到自己的乳房，非常棒。」 淨手術費用差不多達40萬港 元，但幸好全數由保險支付。在 Doris康復期間，她無法舉起手臂， 令她洗澡更衣有困難，但經過數個 星期的復健練習後，她的情況有好 轉。「手術後剛回到家，我哭得最 厲害，我想像以後都無法再舉起手 臂，這令我想起我媽媽，她當時承 受了多大的痛苦。」
F E AT U R E 專 題 故 事
As our conversation draws to an end, she suddenly stands up and walks to the fridge, pulling out a bright green chayote (also known as Buddha’s Hand). “This is my spiritual support,” she says, cradling the gourd between her hands. “I rented a small plot on a little farm in Chuen Lung as a birthday gift for myself last year. It’s not very big, but it’s very valuable to me. When I am gardening, I feel so happy. I can feel the sunshine, birds chirping, fresh air... everything I missed out on for so long.” Gardening, she says, is now a non-negotiable appointment on her agenda. After more than a year of treatments, Doris was declared cancer-free in January 2019. This spring, she has reconnected with her business partners to restructure Diamond Cab and create a pathway for her to ease back into work. “I need to maintain these healthy pillars in my life,” says Doris. “This experience has been very meaningful for me. You don’t realise how important it is to take care of yourself, to take a rest... until it’s a matter of life and death.”
AN UNEXPECTED JOURNEY When Chelsea Wong met her husband Joshua for the first time on New Year's Eve in 2008, she had no idea what the future would hold. Though the pair didn’t start dating right away, they crossed paths again a few years later at their church and the rest, as they say, is history. “When he walks into a room, you can feel his energy, you feed off of it. He’s a talented musician and filmmaker who is so passionate about his work. But the most amazing thing about Joshua is that he cares about people so much. And that was really attractive to me,” she recalls with a smile, while petting their puppy in the couple’s Tin Hau apartment. After a year of dating, the couple married in 2013. Shortly after, Joshua’s health started to waver. To Joshua, it was nothing new: For more than a decade, he had been experiencing inexplicable physical ailments that went untreated despite consulting many specialists.
Doris at her urban farm in Chuen Lung Doris在她位於 川龍的小耕地上
“He would wake up in the morning and a different part of his body would be swollen. Doctors tested him for Lyme disease, gout, arthritis... He went to various experts and they all said he was fine. We didn’t know who to turn to.” A few years into the marriage, his condition deteriorated. He began experiencing debilitating headaches and a throbbing pressure behind his right eye. Joshua visited two ophthalmologists, one neurologist, and two optometrists – nothing worked. Last March, just as Joshua turned 40, the situation took a dire turn. “He turned to me one day and his eye was really swollen; it was bulging out,” recalls Chelsea. Alarmed, they booked an appointment at Dr Lauren Bramley and Partners, a private clinic in Central. The doctors ordered a CT scan, which revealed a 4-centimetre-wide tumour in his lacrimal gland (the tear duct). It was so big that it was pressing against his dura mater (the protective covering of the brain) and eating away at the bones around his eye and nose. The clinic transferred him to a specialist in Central, Dr Jane Yeung, who ordered an MRI to gather more information. Meanwhile, Joshua’s sister, also a doctor, sought out a second opinion in the public system. At the recommendation of Dr Yeung,
最後，Doris終於可以行動自 如，但她開始承受痛苦的後遺症， 如血清腫──在她腋下的積水。她 指著腋下，說笑道：「就好像有個 叉燒包卡在這裡。之後張醫生用針 放出那些水來，她說：『看，現在 只是燒賣了。』我感覺好多了。」 雖然第一輪的化療減慢了腋下 腫塊的增長，她的淋巴結中仍存 在腫塊。Doris準備開展第二輪化 療，這次每兩至三星期共注射四 次 AC 針。她在去年 4 月完成，但 緊接從 5月開始一個分 25 次的電療 療程。 她回憶道：「我那時很擔心會 變得很孤獨。我很喜歡跟人接觸， 與人談天，但我當時不可以外出， 怕會有危險（受到受染），像坐牢 般。」
the pair visited Prince of Wales Hospital in Sha Tin for a biopsy to determine whether the tumour was malignant or benign. Despite one in 10 million odds, Joshua was officially diagnosed with adenoid cystic carcinoma (ACC) in March. Though Joshua’s earlier issues, such as swelling and pain, didn’t have anything to do with ACC, the couple believes it was an early sign that his body was unbalanced and something deeper was going on. “I think we both kind of went numb when they told us. You hear ‘cancer,’ and there’s this disconnect,” Chelsea recalls. “It just wouldn’t register in our minds. Neither of us were emotional at the beginning. We just took action right away.” The couple turned to a good friend, Leora Caylor, who is an integrative oncology patient advocate and nutritional therapy consultant. “She’s really knowledgeable about cancer, so she was the first person we told. She helped us get into the mindset of taking control of the situation.” Caylor recommended various supplements, books, and dietary changes to get the couple on the right track. “We immediately changed his diet to keto (a low-carb, high-fat diet). It’s supposed to be highly beneficial for cancers in the head and brain.” In addition, Caylor
Doris找到健康的宣泄渠道 ──Facebook。她開始在這個平台 記錄她的抗病過程，分享了很多資 訊豐富、坦白和幽默的貼子。「從 來沒人很深入地討論過乳癌……最 好的餐單、手術的選擇、與醫生的 對談、保險……我覺得我在分享有 用的東西。」 她的聲音有迴響。Doris的「光 頭就是美麗」運動引來超過20萬 人閱讀。但當Doris找到一個有意 義的渠道去發揮她的力量時，她 距離死亡又近了一步。在2018年 7 月，她開始療程的最後一步：口服 化療。她總共服用了八個週期，三 星期一次，那是她經歷過的最痛苦 的療程。 「口服化療令我感到很辛苦，我 患上了手足症候群（化療的一種副
作用），我的腳又紅又乾又腫。」 她邊說邊褪去襪子，露出一處似乎 容易脫落的皮膚，紅得像在發熱。 「有時候，我一定要有人扶著才可 外出，因為腳實在太痛了。」 在2月，Doris開始了最後一輪口 服化療，隨著療程快將完結，她回 頭看整個過程，說道：「分享我的 改變是十分有意義的，我之前不知 如何停下來，現在我才知道甚麼是 重要的。」 她徹底改變了她的生活方式。 現在，她遵照一個以植物為主的餐 單飲食，少吃肉和避開奶製品（研 究顯示奶製品等含有激素的食品有 致癌風險），也嘗試每天睡上八個 小時，亦大量減少生活中的壓力。 在談話的尾聲，她突然站起 身，走到雪櫃中取出一個佛手瓜， ARIANA 2019
F E AT U R E 專 題 故 事
Joshua and Chelsea at their Tin Hau apartment Joshua與Chelsea 在他們位於天后的住所裡
recommended The Metabolic Approach to Cancer, a book that looks at the disease as a whole. “That book was really helpful for us to understand what cancer really is and why it happens.” While adjusting to a new reality at home, Chelsea received another shock: Just three weeks after Joshua’s diagnosis, her dad was diagnosed with prostate cancer. “The lowest point for me was the night my dad told me he was sick as well,” recalls Chelsea. “I was angry in my soul, at a really visceral level. I felt personally attacked. The two most important men in my life and I might lose them both?” But there was no time to grieve. A team of doctors encouraged Joshua to start his treatment path as soon as possible. ACC is usually unresponsive to chemotherapy, so Joshua would need to have surgery immediately, followed by high-dose radiation. At first, Joshua’s doctors planned to remove the entire eye orbit – including part of the nose, the whole eyeball and part of the dura, which protects the brain. This would leave Joshua deformed for the rest of his life. But the family questioned the decision: “Since he would have to get radiation after the surgery anyway [to kill remaining cancer cells], why did he have to lose the entire orbit? Why not remove the tumour only?” The doctors back-pedaled, agreeing to focus on the tumour and, within a few days, Joshua went into the eight-hour surgery. “It all felt so rushed, as if we had to make a decision right that second,” says Chelsea. “We wish we took some time and got second opinions. You want to trust your doctors, but that wasn’t the case for us.” The surgeons removed as much of the tumour as possible. In the process, they also had to remove the muscle that opens and closes the eyelid, leaving Joshua with double-vision in one eye. “He can still see, but it’s blurry so he wears a patch,” says Chelsea. “He’s one of the only people I know who could pull off a badass eye patch.” After the surgery, an oncologist within their team of doctors insisted that Joshua needed to undergo another surgery to remove the entire orbit as originally planned. The procedure, he said, would be the safest way to remove any margins and prevent the disease from spreading further.
兩手輕輕抱著，說道：「這是我的 心靈支柱，我在川龍一個小農場租 了一小塊耕地，作為去年的生日禮 物。那不是很大，但對我來說很有 價值。在種植時，我感到很快樂， 我感受到陽光、鳥語、清新的空 氣……所有我忽略了很久的東西。 」她說種植是日程中不可調配的項 目。 經歷了一年多的療程後，Doris 在2019年1月脫離癌症的糾纏。這個 春天，她重新聯絡上商業拍檔，重 整鑽的業務，慢慢回到工作。 Doris說：「我需要維持這些生 活中的健康支柱。這次經驗很有意 義，你不會意識到要好好照顧自己 和休息……直至生死關頭。」
驚人之旅 2008年的除夕夜，當Chelsea Wong邂逅丈夫Joshua時，她沒想 到未來會如何。雖然他倆沒有立即 約會，但數年後在教會中重遇，命 運再次交織，之後的事，如他們所 說，就是歷史了。 「當他走進房間的時候，你可 以感受到他的能量，你的能量亦會 隨之增長。他是一個才華橫溢的音 樂家和製片人，非常熱愛自己的工 作，但Joshua最捧的地方是，他真的 會關懷他人，這特質很吸引我。」 她笑著回憶，一邊在他們位於天后 的住所中撫摸著小狗。 拍拖一年後，兩人在2013年結 婚。但不久後，Joshua的健康開始 轉差。對Joshua來說，這並不是新 鮮事：超過10年以來，他一直承受 著令人費解的病痛，即使諮詢過不 同醫生，但仍然無法根治。 「他早上起床後，身體不同的部 位就會腫起來。醫生為他測試了萊 姆病、痛風、關節炎……他去看過 不同的專家，他們都說他沒事，我 們不知道要向誰求助。」 ARIANA 2019
F E AT U R E 專 題 故 事
“The communication between our [medical] teams wasn’t good. It was scary, and we didn’t feel supported,” Chelsea recalls. “He still had a drain in his head from the first surgery. He was sitting in the hospital room, just shivering from anxiety and stress. We were putting jackets and blankets on him, holding him. When they talked about taking out the whole side of his face… he was so devastated.” By then, the couple no longer trusted the doctors’ advice. Chelsea joined a Facebook group for patients and supporters of those with ACC, in search of more treatment options. This group proved to be an invaluable source of advice, information and support for the couple throughout the remainder of their journey. And it was in this informative group where they found the treatment that would eventually save Joshua’s life. “A lot of people suggested proton radiotherapy. It’s a very targeted beam of radiation [that goes straight into the affected tissue], which is exactly what you need for ACC,” says Chelsea. A member of the Facebook group recommended Dr Norbert Liebsch at General Hospital (MGH) in Boston, Massachusetts, as the foremost expert in the field. The couple raced to reach out, knowing this therapy could
步入婚姻數年後，他的情況愈加 惡化，出現偏頭痛和右眼後方抽痛的 症狀。Joshua去看了兩個眼科醫生、 一個神經科醫生和兩個視光師，仍然 沒法解決問題。 去年3月，Joshua剛踏入40歲， 情況急轉直下。Chelsea憶道：「一 天他面向我時，我看到他的眼睛腫 得非常厲害，眼球是凸出來的。」 驚慌之下，二人立即預約了在中環 的私家診所Dr Lauren Bramley and Partners。 醫生替他進行了電腦斷層掃描檢 查，掃描顯示出他的淚腺中有一個 四厘米寬的腫瘤，大得壓住了他的 硬腦膜（大腦的保護膜），同時在 侵蝕眼睛和鼻子旁的骨骼。 診所轉介他看在中環的專家楊珍 66
be a game changer. An assistant passed them to Dr Liebsch’s voicemail and they left a message. At 10pm Eastern time, that same day, the doctor called back and asked Joshua to send his reports. After reviewing the case, Dr Liebsch invited them to come to Boston. The couple flew to Boston where they stayed for three months. But before Joshua could start his therapy, yet another surprise was in store: “When Dr Liebsch performed an MRI of Joshua’s head, they discovered a piece of metal.” At first, the doctors expected to find something minute, like the tip of a needle. They scheduled a surgery, to be sure. Upon opening Joshua’s skull, Dr Liebsch found the tip of drill bit, which the couple says could only have come from the previous surgery in Hong Kong. Everyone was stunned. Joshua had two MRIs just weeks before. He was lucky to be alive: Introducing metal anywhere near an MRI machine, which harnesses magnetic fields that are 1,000 times the strength of a standard household magnet, has been known to cause serious accidents and deaths. Once switched on, the machine could have ripped the metal out of Joshua’s head. Despite the shock of this discovery, the surgery’s
珍醫生，她為Joshua做了一次磁力 共振掃描。與此同時，也是醫生的 Joshua妹妹亦在公共醫院尋求其他意 見。在楊醫生推薦下，兩人到訪了 沙田威爾斯親王醫院，做了活體組 織切片檢查，以確定腫瘤是陽性還 是陰性。 在千萬份之一的機率下，Joshua 在3月正式被確診腺樣囊狀癌。雖然 Joshua早期的症狀，如腫脹和疼痛， 跟腺樣囊狀癌無關，但他倆都認為這 是他身體失衡的早期跡象，預示更嚴 重的疾病正在形成。 Chelsea憶述：「最初他們跟我們 說時，我們都處於呆滯狀態。你聽到 『癌症』二字時，就脫線了，我們還 等不及腦袋作任何反應，便立即行 動起來。」
二人找了他們的好朋友Leora Caylor求助，她是綜合癌症病人的支 援者，也是一名營養治療顧問。 「她真的知道很多有關癌症的知 識，所以她是第一個我們通知的 人，她幫助我們瞭解如何控制情 況。」 Caylor推薦了不同的補充品、書 籍和飲食餐單，以助兩人對抗癌症。 「我們開始讓他嘗試生酮飲食（即低 碳水化合物和高脂的飲食），這對 治療他頭部和腦部的癌症應大有益 處。」除此之外，Caylor亦推薦閱讀 The Metabolic Approach to Cancer， 此書全面地分析了癌症。「這書真的 有助我們知道甚麼是癌症和為甚麼它 會出現。」 在家適應新的生活時，Chelsea
When Dr Liebsch performed an MRI of Joshua’s head, they discovered a piece of metal ... He was lucky to be alive: Introducing metal anywhere near an MRI machine ... could have ripped the metal out of Joshua’s head. Dr Liebsch為Joshua做頭部磁力共振掃描時，發現了一塊鐵...... 他幸運地活下來：在擁有一般磁鐵千倍磁力的磁力共振掃描器旁放上 任何鐵塊......鐵塊很可能會從Joshua的頭部中被吸出。
timing was a small blessing for the family. At the same time, Chelsea’s father was recovering from his own surgery in Saskatchewan, Canada, so the couple travelled there to be together while both men healed. The following week, the couple returned to Boston to finally start Joshua's proton radiotherapy. Across the next eight weeks, Joshua underwent 40 rounds of radiation to eliminate the remaining tumour. This method greatly reduces the unnecessary radiation to healthy tissues, bones and organs, thus reducing side effects.
接到第二個噩耗：在Joshua證實患上 癌症的三星期後，她爸爸也被確診 患上了前列腺癌。她回憶道：「我 最低潮的時候是爸爸告訴我他也病 了，我的內心極為憤怒，就像被直 接攻擊般。我是要失去這兩個在人 生中最重要的男人嗎？」 然而，她沒有時間傷感。醫生 們鼓勵Joshua盡快開始療程，化療一 般對腺樣囊狀癌沒效，所以Joshua要 立即接受手術，再接受高能量放射 線治療。 一開始時，Joshua的醫生打算移 除Joshua的整個眼眶，包括部份鼻 子、整個眼球和部份能保護腦部的 硬腦膜，這會導致Joshua終身毀容。 但家人質疑決定：「既然他術後要 接受放射線治療（以消除剩下的癌
While Joshua’s critical illness insurance covered his care in Hong Kong, it didn't make a dent in the notoriously expensive US medical system. The couple says they felt impossibly lucky, as countless people came out of the woodwork to bless, love, and support them. “It was really incredible. So many people helped us,” recalls Chelsea. “And, I mean, you put money away for a rainy day. This is a rainy day. It was a no brainer. This was the best shot we had.” While Joshua underwent radiation, Chelsea tried to establish her own routine in Boston. A professional
細胞），為甚麼要移除整個眼眶？ 何不只移除腫瘤？」 醫生們退讓一步，同意只移除 腫瘤，而在數日後，Joshua就接受 了長達八小時的手術。Chelsea說 道：「一切都進行得很快，好像我 們要那一刻立即做決定。早知道就 等一等，尋求其他意見。你會想相 信你的醫生，但這不適用於我們的 情況。」 醫生盡量移除了可移除的腫 瘤，在過程中，他們切除了Joshua 開合眼皮的肌肉，這意味著Joshua 的一隻眼睛會有複視。Chelsea說： 「他仍看得到，但很模糊，因此需 要要戴眼罩。他是我認識的人中， 唯一可以把粗野的眼罩戴得那麼有 型的人。」
手術後，醫生團隊中的腫瘤科醫 生堅持要Joshua做另一項手術，那就 是按照之前的計劃移除整個眼眶， 他說那是避免留有後患和防止擴散 的最安全方法。 憶起那天，Chelsea說：「我們 醫療團隊之間的溝通不暢，這使我 們覺得可怕，又缺乏支持。Joshua 在首次手術後頭部仍有出水的情 況，他坐在醫院病房時，因焦慮和 壓力而發抖。我們為他披上外套和 毛毯，並抱著他。當他們說到要移 除他整個側臉……他顯得極度震 驚。」 那一刻，兩人不再相信這些醫 生的建議。Chelsea加入了一個腺樣 囊狀癌患者和支援者的Facebook群 組，尋找更多的治療方法。這個群 ARIANA 2019
F E AT U R E 專 題 故 事
fitness instructor, she exercised frequently, taught barre (a fitness style that combines elements of ballet with Pilates, flexibility and cardio), and met up with friends whenever possible. “I realised that I needed to still be my own person and take care of myself; it was important for me to not to let it consume me and take over my life,” she says. “I had to figure things out. Sometimes, mostly at the beginning when we just got the diagnosis, I would schedule times to cry. I’d say, okay, that’s my time to grieve.” Joshua says the most powerful thing about having Chelsea by his side was that she never treated him as
組為二人在往後的旅程中提供了無數珍貴的建議、知識 和支持。在這個充滿資訊的群組中，他們終於找到最後 救了Joshua一命的治療方法。 Chelsea說：「很多人建議做質子放射治療。那是一 種非常聚焦的射線束（可直接滲透到受影響組織），而 這正正是腺樣囊狀癌患者需要的。」 Facebook群組中的一個成員推薦了波士頓麻省總醫院 的醫生Norbert Liebsch，他是此領域中第一流的專家。二 人知道該手術可能是救命的轉機後立即求助。一個助理 把他們轉駁到Dr Liebsch的留言信箱。同日，美國東部時 間下午10時，醫生回電，叫Joshua發病歷紀錄。看過他們 的情況後，Liebsch邀請二人到波士頓。
Joshua Wong during proton radiotherapy in Boston, Massachusetts Joshua Wong在波士頓進行質子放射治療
a cancer patient. She encouraged him to stay strong, both mentally and physically. He continued to cook for himself – if not both of them – managed his keto diet, and remained highly productive throughout his treatment regime. They continued to pursue life together, despite the difficult situation. “Chelsea saw me as a person who was going through a tough season but was still strong, and she empowered that part of me,” recalls Joshua. “I never felt weak because she never let me, despite allowing me to grieve or [feel down].” The couple found a strength in themselves, and in each other, through the experience. “Too often people see pain as a bad thing, when it’s actually an opportunity to persevere and grow. We weren’t going to let pain and sickness rule our lives, we wanted to maintain control of our choices and [chose to] cling to growth, over sickness,” says Josh. After finishing his radiation regime, Joshua and Chelsea had to wait six months for the results. In the meantime, they gathered a few friends and went skydiving – Joshua’s “F*** you to cancer,” says Chelsea. It was his way of expelling cancer, of refusing to let the disease dictate his life. After the bold finale, they flew to Los Angeles for a holiday and then returned to Hong Kong. Back home, Joshua maintained his keto diet and supplements, and dove back into his routine without skipping a beat. They were doing really well; their optimism and genuine love for life was obvious. But the undercurrent of anxiety – about health, diet, lifestyle choices – took a toll. And one day, it was just too much. “Cancer as a sickness is terrible, but the anxiety and fear that it induces can sometimes be worse,” recalls Joshua. “It wasn’t simply a case of me having a breakdown, but the culmination of constantly worrying about my health, diet, and whether or not my choices are feeding my sickness – or fighting it. These are the struggles that people who have battled, or are battling, cancer have to deal with.” The couple had been considering getting a dog for a while and, knowing they can be therapeutic, it felt like the perfect time. So Chelsea arranged a visit to an Animal Friends adoption day. “I wanted to change the focus from constantly thinking about health to caring
他倆飛到波士頓，停留了三個月。然而，在 Joshua開始治療前，又發生了件出乎意料的事： 「Dr Liebsch為Joshua做頭部磁力共振掃描時， 發現了一塊鐵。」 最初，醫生們以為是一件微小如針頭的東西，他們 做了手術去求證。打開了Joshua的頭顱後，Dr Liebsch 找到了鑿孔器的鑽頭，他們認為，這只可能來自之前 在香港做過的手術。所有人都很震驚：Joshua在數個 星期前才做過兩次磁力共振掃描。他幸運地活下來： 在擁有一般磁鐵千倍磁力的磁力共振掃描器旁放上任 何鐵塊，都可導致嚴重意外和死亡。一旦啟動了儀 器，鐵塊很可能會從Joshua的頭部中被吸出來。 雖然發現驚人，但手術的時間對他們家來說是個小 恩賜。在Joshua術後康復期間，Chelsea的爸爸剛在加拿大 的薩斯喀徹溫省做完手術，正在休養，夫婦二人於是一 同前往探望。 一星期後，二人回到波士頓，開始了質子放射治 療。八星期中，Joshua經歷了40次放射治療以移除剩餘 的腫瘤。這個治療方法大大減少了對健康組織、骨骼和 器官不必要的輻射，從而減少副作用。 雖然Joshua的危疾保險覆蓋在香港的治療，但遠遠 不足支付以昂貴出名的美國醫療系統。二人說他們感 到無比幸運，因為有無數意想不到的人現身來祝福、 關心和支持他們。 Chelsea憶述：「真的難以置信，有 很多人幫助我們。而且，我們未雨綢繆，儲錢以備不 時之需，而這就是用來應急的時刻。想都不用想，我 們就該為之一搏。」 當Joshua進行電療時，Chelsea嘗試在波士頓建立自己 的日常生活規律。作為一個專業健身教練，她常常做運 動，教barre（結合芭蕾舞、普拉提、柔軟運動和帶氧運 動元素的健身方式），也會盡量跟朋友見面。 她說：「我明白到我需要保持自立，要照顧自己。 尤為重要的是，我不可以讓治癌佔據我生活的全部，我 要自己想辦法處理。有時我會安排時間去哭，尤其是得 知他患癌的初期。我會跟自己說，好，這是我可傷感的 時間。」 Joshua說Chelsea在身邊最有力的支持是，她從不把 他當癌症病人般照料，她鼓勵他身心要堅強。他繼續為 他自己和為二人煮食，管理自己的生酮飲食規律，而且 在治癒期間仍不停創作。即使困難重重，他們仍繼續追 求生活。 Joshua憶述：「Chelsea看著我經歷最難的關頭， 卻依然堅定，令我也堅強起來。雖然她容許我傷心或 （沮喪），但我從未自覺軟弱，因為Chelsea從不許我 有如此感覺。」 ARIANA 2019
F E AT U R E 專 題 故 事
for a little puppy – I wanted to fill our lives with joy, happiness and a sense of calm,” she adds. The next day, they adopted Boston, who they named after that very important time in their lives. “She got a new life; we got a new life,” adds Chelsea. Throughout the experience, Chelsea and Joshua felt loved and supported by a community of friends, family and colleagues. Without that, they would have been lost. “I couldn’t have endured such a turbulent journey without Chelsea and our incredible community,” says Joshua. Chelsea echoes the sentiment. The support of these people, she says, got them through their most difficult days. “Our faith [as Christians] played a huge role, the community, the support... that was invaluable. We had a WhatsApp group prayer chat, where we could send updates and ask for specific prayers. Our community was our rock!” At every step of the journey, they shared updates on their feelings and treatments on social media, which Chelsea says also helped immensely. “We made a decision to share everything – the good and the bad,” says Chelsea. “Some days, I didn’t feel like pretending I was okay. All I wanted to do is scream and cry and yell. By being honest, I wanted others to know that it’s okay to feel that way. We wanted to let people see our real emotions and struggles; not just a highlight reel. There is no perfect way to handle this.” Finally, the wait was over. A few days before Christmas, Dr Liebsch called. The scan was clear. Joshua’s tumour was gone. He was cancer-free. “I didn’t realise that I’d been holding my breath for six months until I heard those words,” says Chelsea. “It was a really intense year. Two serious cancer diagnoses. My dad is thriving; Joshua is thriving. They both returned to ‘normal’ life, but with more focus, passion and a clearer perspective than ever. We’ve gone through this together and just feel a deeper connection [because of that].” As challenging as it was, cancer gave Joshua and Chelsea a totally new perspective. “You hear ‘cancer’ and either you fall into a pit or, all of a sudden, life becomes a priority. These are the things that matter. These are the things that don’t. Your focus is just much clearer.” She says they would even go through it all over again if they had the choice. “For us, the experience was 70
在這段經歷中，二人在對方身上找到力量。Joshua 說：「太多人視痛苦為負面的事，但這其實是堅持不 懈和成長的機會。我們沒有讓痛苦和疾病主宰我們的生 活，我們希望保持自決和選擇繼續在疾病中成長。」 完成電療後，Joshua和Chelsea要等六個月才知道結 果。那時，他們跟幾個朋友去玩了跳傘。Chelsea說，那 是Joshua向癌症說「去你的」的方式。那是Joshua驅逐癌 症和拒絕被癌症主宰人生的方式。 在這大膽的收尾之後，他們飛到洛杉磯度假，再回 香港。回家後，Joshua維持生酮飲食習慣，繼續服用補 充品，而且立即回到以往的生活方式。他們以往過得很 好：二人樂觀，且真正熱愛他們的生活。但對於健康、 飲食和生活方式選擇的潛在焦慮，還是敲響了警鐘。 有一天，他受不住了。 Joshua回憶道：「癌症作為疾病已足以煩人，但那隨 之產生的焦慮和恐懼更可怕。這不只是令我情緒崩潰， 更持續令我擔心健康、飲食，以及我的選擇是在加劇病 情，還是在對抗病情。這是曾經或正在對抗癌症的病人 需要處理的。」 兩夫妻一直都想養狗，當知道牠們有益於健康後， 更感到這是完美時機，所以Chelsea參加了「動物朋友」 舉辦的領養日。她說：「我希望我們可以從時刻專注健 康問題轉到關心小狗上。我想令我們的生活充滿喜悅、 快樂和平靜。」 第二天，他倆領養了小狗，命名為波士頓，記錄人 生那段極重要的時刻。Chelsea說：「她獲得了新生，我 們也一樣。」 在這段經歷中，Chelsea和Joshua感受到朋友、家人和 同事的愛和支持，否則二人會不知所措。Joshua說： 「沒有Chelsea和我們極捧的社群，我無法捱過這段波濤 洶湧的旅途。」 Chelsea也有同感，她說這些人的支持助他們度過了 人生最艱難的日子。「我們的（基督）信仰佔了很大 的角色，社群、援助……全都無比珍貴。我們開了個 WhatsApp祈禱群組，讓我們可分享進展消息和請求禱 告，我們所屬的群體是我們的依靠！」 在這段歷程的每一步，他們都在社交媒體上分享感 受和療程經過，Chelsea說這大大幫助了他們。「我們決 定分享所有事，不論好壞。有時，我不想裝作沒事，我 只想大叫和哭喊。通過誠實說出來，我希望其他人知道 我們有這樣的感覺是沒問題的，我希望人們看到我們真 實的情緒和困難，不只是選擇性真實，因為不存在完美 的處理方法。」 終於，等待結束了。聖誕的數天前，Dr Liebsch來 電，說掃描顯示Joshua的腫瘤已消失，他不再有癌症。
really positive. It brought us closer as a couple. It’s also changed how we approach self-care. Instead of waiting for that massage or vacation, we just do it now. You don’t know what will happen tomorrow. You just have no idea.”
EVERY DAY IS A BONUS Donning rainbow-hued sneakers, Diana Chow looks optimistic when we meet in Quarry Bay. Her mum, Li, has recently survived yet another complication with adenocarcinoma – a glandular cancer that the 73-year-old has been battling over the past three years. Diana says you would never know her mum has cancer. She’s always on the go, socialising, even staying up until midnight to watch shooting stars. “She won’t ever call herself an ‘old woman.’ Physically, yes, but mentally definitely not. Her mind is like that of a teenager. She still loves to go to Lan Kwai Fong on Halloween. She wants to try anything and everything. Maybe that’s why she is so strong. She really loves life.” It was on an evening in early December 2015 that the family realised something was wrong. “Suddenly, my mum said she was feeling strange and couldn’t balance,” recalls Diana. “It was like she lost her depth perception. Everyone thought it was a stroke.” That same night, the family took Li to Tseung Kwan O Hospital Accident & Emergency for a CT scan. And then came the news: a brain tumour. Doctors suspected she needed surgery, so they transferred her to Queen Elizabeth Hospital and put her on a waitlist for an MRI. “We had to wait a few days before she had the MRI scan,” she recalls. “The report confirmed the tumour [and] cerebral edema [excess water in the brain], which causes severe swelling and pressure on her brain. She needed surgery immediately.” Diana and her siblings were still processing the news. “No one in our family thought this could happen to my mum. She’s so healthy,” recalls Diana. “She did everything ‘right’ in life. She exercised, never smoke or drank, followed a vegetarian diet, and looked after herself. “I had at least a little bit of an idea of how to go forward because my father had larynx cancer and lung cancer
Chelsea說：「直至聽到那消息，我才發現我一直屏息 凝氣地度過這六個月，這真是嚴峻的一年：有兩人被確診 癌症。我爸爸正好轉，Joshua也在好轉，他們都回到『正 常』生活，但比以往更專注，更熱情，方向更清晰。我們 共同經歷風雨後，找到一個更深層次的連繫。」 雖然癌症是一個巨大的挑戰，但它同時給予了Joshua 和Chelsea一個全新的看法。「當你聽到『癌症』二字 時，你要不跌入谷底，要不就是在突然之間，學會把人 生的種種分清輕重緩急。這是重要的，這些不重要…… 你的重點變得清晰起來。」 她說如果可以重新選擇，他們願意再次經歷所有。 「對我們來說，這個經驗非常正面，它令我們夫妻更加 恩愛，亦改變我們照顧自己的方法。與其等待按摩或假 期，我們不如現在就照顧好自己，今日不知明日事，你 永遠不會知道明天會如何。」
每天都是賺來的 我們在鰂魚涌相見時，穿著彩色球鞋的周淑儀 （Diana Chow）看起來很樂觀。她的母親最近剛捱過 了又一個腺癌併發症，這名73歲的女士跟腺癌已搏 鬥了三年。 Diana說你不會看出她母親有癌症，因為她常常 走動，與人交際，甚至會去看流星直到深夜。 「她從不會叫自己做『老女人』。身體的確是，但 心理上絕對不是。她的想法仍和少女一樣，她愛在萬聖 節到蘭桂坊，想試這試那，可能這就是她那麼堅強的原 因，因為她真的熱愛生命。」 在2015年12月初的一個晚上，家人開始察覺到有些 異樣。Diana憶起：「我媽媽突然說她覺得不妥，平衡 不了，好像失去了距離感似的，大家都以為是中風。」 同一個晚上，家人帶了周媽媽到將軍澳醫院的急症 室做電腦斷層掃描，得來的消息是：她長了一個腦部腫 瘤。醫生懷疑她需要接受手術，便轉介她到伊利沙伯醫 院，排期做磁力共振掃描。 她說：「我們要多等幾天才做到磁力共振掃描，報 告結果證實有腫瘤和腦水腫，這令她腦部嚴重腫脹和受 壓，她要立即接受手術。」 Diana和她的兄弟姊妹當時仍在消化這消息。她憶 道：「我們家中沒有人會想到這會發生在我媽身上， 她一直都很健康。她人生甚麼都做『對』了：她常做運 動，不煙不酒，吃素又保養身體。」 「我大概知道要做甚麼，因為我爸爸之前患上喉 癌和肺癌。他其實曾三次患癌，最後死於慢性阻塞性 肺病（一種常見肺部疾病）。」 ARIANA 2019
F E AT U R E 專 題 故 事
“We felt like there was no hope. Like it was the end of the story.” 「我們好像沒了希望， 像是完了。」 – Diana Chow 周淑儀
before. He actually had cancer three times, but eventually died from chronic obstructive pulmonary disease [a common lung disease].” After the surgery, her mum recovered well, which filled Diana with hope. That feeling didn’t last long, however. During a subsequent PET scan just before Christmas, Li’s doctors discovered the cancer was already stage 4, and had spread from her lungs to her brain, bone, and the adrenal glands. “Luckily, because they took a sample of the tumour from the brain, they could test a first-generation targeted therapy [a type of drug that targets cancer’s specific genes and proteins],” says Diana. “They believed these drugs should work for her.” In the meantime, as her mum’s primary caregiver, Diana devoured every piece of research available. She also devised a strategic approach to care: Since doctors in the public sphere had limited time for discussion at each appointment, Diana consulted a private doctor to ensure she understood her mum’s situation and the options available to her. “We had the resources to do a mix of private and public care [but not solely private] – one MRI alone in private is HK$5,000-10,000,” says Diana. “This [scenario] led to a better communication between me and the HA doctors, who don’t really have much time, just 15 minutes. They might not tell you all your options – not because they don’t want to, but because they think you won’t understand.” After roughly two years of treatments, Li showed great progress. In some areas, such as her bones and glands, the medicine cured the cancer completely. Her brain and lung tumours shrunk until they were nearly invisible on a scan. All seemed under control. Diana says she felt like she could finally breathe, after much uncertainty and fear. 72
在手術後，母親康復得不錯， 令Diana充滿希望。然而，這感覺持 續不了多久：隨後在聖誕前的一個 正電子掃描中，醫生發現她的癌症 已發展至第四期，而且已從肺部擴 散到她的腦部、骨骼和腎上腺。 Diana說：「幸好，因為他們在 腦部腫瘤取了個樣本，可以用來測 試第一代標靶治療（一種針對癌症 特定基因和蛋白質的藥物）。他們 相信這些藥物會對她有效。」 同時，作為母親的主要照顧 者，Diana如飢似渴地細閱她找到 的所有研究。她亦構想了一個治療 計劃：由於公家醫生的時間很有 限，未能在每次會診都作詳細討 論，Diana便再諮詢一名私家醫生， 以確保自己完全瞭解母親的情況及 可選擇的治療方案。 Diana說：「我們有資源去做 私家和公家的混合治療（但無法只 做私家），因為在私家醫院，單是 磁力共振掃描已要付5,000至10,000 元。這使我和公家醫生的溝通更 好，因為他們沒很多時間，就只有 15分鐘。他們未必會告知你所有的 選擇，不是因為他們不想，而是覺 得說了你也不會明白。」 在接受了兩年左右的療程後， 周媽媽的情況大有好轉，有些部位 如骨骼和腎上腺的腫瘤，已因藥物 而徹底消除。她腦部和肺部的腫瘤 也縮小了很多，在掃描中近乎不 可見。 情況似乎終於穩定下來，Diana 坦言在諸多不安和恐懼後，她終於 感到能鬆一口氣。然而，在2017年 12月，磁力共振掃描顯示出周媽媽 的腦部腫瘤又再次長大，更糟糕 的是，醫生相信這腫瘤變得抗藥 了，他們需要重新找一個新的治療 方法。 Diana憶述：「我們都很驚慌， 醫生肯定了藥物不再有用，而腫瘤 一直在增大，非常活躍。」 ARIANA 2019
F E AT U R E 專 題 故 事
But in December 2017, an MRI scan revealed that Li's tumour in her brain had started growing again. Worse still, doctors believed it had become drug-resistant. They would have to find a new treatment strategy in order to save her mum. “We panicked,” recalls Diana. “The doctors were sure that the drugs wouldn’t be useful for her anymore; the tumour kept growing. It was really active.” In January 2018, Diana arranged for her mum to have high-dose radiotherapy. But Li’s brain started swelling three months after the treatments, and medical professionals weighed in with different views. One oncologist thought it was a recurring tumour and advised Diana to schedule brain surgery. Another doctor advised against it, saying that was just a side effect of radiotherapy, not the cancer. “They’re both good doctors. I believe they were both trying to help,” she says. “But they had different ideas and I was the middle of it. I’m the one making decisions for my mum. I was just so scared.” The doctors managed to control the swelling with steroids, so they waited, observed and, ultimately, avoided surgery. Diana felt a surge of relief. “I felt like my mum’s life was in my hands,” she recalls. “But every time we have to make a big decision, I try to distance myself from that [emotion]. I always try to understand what’s going on. In this way, while being a worried
在2018年1月，Diana安排母親 接受高劑量電療，但她的腦部在接 受治療的三個月後開始腫脹，專家 們都有不同見解：一個腫瘤科醫生 認為這是腫瘤復發的跡象，並建議 Diana安排母親做腦部手術，但另 一個醫生持反對意見，說這只是電 療的副作用，並非癌症。」 Diana說：「他們都是好醫生， 我相信他們都只想幫忙，但我卡在 不同的見解中間，卻要替媽媽做決 定，我很害怕。」 後來醫生以類固醇控制腫脹情 況，所以他們決定等待和觀察，最 74
daughter, I am able to [take care of my mother] in an objective manner. It helps me to stay rational.” Following radiotherapy on the brain, everything seemed under control again, until December when a CT scan revealed a new development: the cancer had spread to the pleura (the membrane that envelopes the lungs). Her doctors said it would be impossible to treat the lungs with radiotherapy and surgery, so Diana looked for alternatives. “That was really terrible news. Once it spread, it was very urgent. That first week, we saw one tumour, then two to three weeks later, there were four or five.” At one point, Li’s private oncologist advised her to go to the public hospital for chemotherapy. “It was as if he had given up on her. Maybe he didn’t have any more ideas,” says Diana. “That was the hardest time for us. We felt like there was really no hope. Like it was the end of the story. We didn’t know what to do. But we didn’t give up.” Diana knew her mum needed a biopsy in order to test for gene mutations that would be receptive to available targeted therapy drugs, but it would be a highrisk procedure due to the tumours’ proximity to the heart. Several doctors turned her away. “I kept trying, kept asking. And, luckily, I finally found Dr Wong Yik at Hong Kong Adventist Hospital in Tsuen Wan, who said yes. He said if my mom was willing,
後得以避免做手術，Diana頓時鬆 一口氣。她想起：「我覺得媽媽的 生命就在我手中，每次我要做重大 決定時，我都會嘗試遠離這情緒， 嘗試去瞭解情況，這樣我就可以同 時擔心媽媽，又可以客觀地照顧 她。這使我保持理性。」 在腦部電療之後，一切好像再 次穩定下來，直至去年12月，一次 電腦斷層掃描顯示癌症已擴散到胸 膜（包覆肺部的漿膜）。醫生說 沒可能再接受電療和手術，所以 Diana又得再尋找新的療法。 「那真是可怕的消息，一旦癌
症擴散，就變得很緊急。首週我們 看到一個腫瘤，兩三週之後，就有 四五個。」 當時周媽媽的私家腫瘤科醫生建 議她到公立醫院做化療，Diana說： 「他好像放棄了她似的，可能他已沒 有主意。那是我們最難捱的時刻， 我們好像沒了希望，像是完了。我們 不知如何是好，但我們沒有放棄。」 Diana知道母親要接受活體組織 切片檢查，測試基因突變，看看甚 麼標靶治療藥物有效，但因為腫瘤 位置接近心臟，風險很高，不少醫 生拒絕進行。
“She always tells me: ‘It’s OK. Every single day is a bonus.” 「她常跟我說：『沒事的，每一天都是賺來的。』」 – Diana Chow 周淑儀
then he’d try. I asked her: ‘Do you want to try or not? Do you want to keep going?’ This was her only hope.” Diana’s mum vowed to keep fighting. “She replied: ‘I will do whatever I can do to survive.’” After the biopsy procedure, Diana waited for the results, checking on the report every day. Then on Christmas Eve, she heard the news. “When I got the results, I was at a Scouts holiday party – I am a Scouts volunteer. The WhatsApp came from Dr Cindy Wong, the oncologist. It said my mum could take the third-generation targeted therapy drug [a drug designed for patients who have become drug-resistant to earlier generations]. I was in front of a lot of kids, and I just remember stumbling a little. It was just too touching. It was like a gift from God right before Christmas.” Diana’s mum started the new regime at Queen Elizabeth Hospital this January. It’s effective but
「我不斷嘗試和要求，幸好， 我找到了荃灣港安醫院的黃奕醫 生。他說如果媽媽願意，他會嘗 試。我問她：『你想不想試？你想 繼續嗎？』那是她唯一的希望。」 Diana的母親決心堅持抗癌。 「她說：『為了活下去，我甚麼也 肯做。』」 活體組織切片檢查後，Diana 要等待結果，她每天都看不同報 告，在平安夜，她等到了消息。 「我在一個童軍節日派對中 接到結果──我是一個童軍義 工。 WhatsApp 訊息來自腫瘤科醫
expensive, about HK$50,000 per month. For the first two months, Diana self-financed the drug. But in mid-February, the government approved the medicine’s inclusion in the Community Care Fund’s subsidy scheme. “If she doesn’t take it, my mum will die. Luckily, they will help with some of it. I still worry about the money, but I think I can solve it.” After 12 weeks of treatments, Li’s latest PET scan showed that the left lung tumour is now smaller and less active – a promising result. The family hopes that this third-generation drug has, at the very least, bought their mum some time for new drugs and treatment methods. “We feel hope. My mum wants to live longer, for sure, but if tomorrow is the day, she is okay with that. She lives every day to the fullest. She always tells me: ‘It’s OK. Every single day is a bonus.’”
生Cindy Wong，說媽媽可以服用 第三代標靶治療藥物（專為對上幾 代藥物有抗藥性的病人而設）。當 時我在很多小孩前，我記得我蹌踉 了一下，因為我太感動了，那就像 神在聖誕來臨前的禮物。」 今年一月，Diana的母親在伊 利沙伯醫院開始新的療程，十分有 效，但也非常昂貴，一個月要花上 五萬元。首兩個月，Diana都自資 購買藥物，而從 2 月中旬開始，政 府關愛基金批了藥物資助。「如果 沒有這些藥物，媽媽就活不了， 幸好這筆資助幫到我們。我仍然
在擔心金錢，但我覺得我會解決 到的。」 在12週的療程後，周媽媽最新 的正電子掃描顯示左邊肺部的腫瘤 縮小了，且不再那麼活躍，這是個 帶來希望的結果。家人都希望第三 代藥物至少可以為母親買些時間， 讓他們尋找新藥和治療方法。 「我們看到希望，媽媽的確想 活得更久，但如果明天就是那一 天，她也準備好了。她把每一天都 活到最充實，她常跟我說：『沒事 的，每一天都是賺來的。』」
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ANSWERS IN ANOMALIES
When it comes to cancer research, Rossa Chiu and her team of chemical pathologists have made their mark on the world stage with advancements in early cancer detection. 趙慧君和她的化學病理學家團隊帶著癌症早期檢測技術的新突破，登上了癌症研究的世界舞台。
Words 文 Christy Choi Photography 攝影 Anthony Kwan
very year, US$50 billion is spent globally on developing new cancer treatments and technologies. Despite the constant stream of advancements, the disease was still the second leading cause of death worldwide in 2018, claiming an estimated 9.6 million lives, according to the World Health Organisation. That’s equivalent to the entire population of Sweden. In Hong Kong, around 30 per cent of all deaths in the city are from cancer, according to statistics compiled by the Hong Kong Cancer Registry. While cancer remains a top concern, local researchers in the medical and life science fields are continuously working to advance prevention techniques, enhance treatments, improve access to drugs, collect data, as well as further our collective understanding of how cancer cells mutate and proliferate. As part of a global effort, Hong Kong’s top minds have been working with, and even outperforming, some of the most well-funded institutions in the field to tackle the complexities of cancer. Among them are Rossa Chiu, Dennis Lo and Allen Chan. This team of chemical pathology professors and DNA specialists at the Chinese University of Hong Kong (CUHK) have been at the forefront of clinical research that has huge potential to reduce cancer mortality rates through early detection.
A LIFE-SAVING SCREENING The Prince of Wales Hospital in Shatin is a warren; a maze of identical looking corridors, sanitised both in look and smell. This is where Chiu and her team have been developing a non-invasive technique called a liquid biopsy to detect early-stage nasopharyngeal cancer – a form of nose and throat cancer that’s rare amongst Westerners but common in Southern Chinese men. In fact, it’s the most common cancer occurring in Hong Kong males aged 20 to 44 years. The technique is much simpler than a traditional biopsy. Instead of extracting a tissue sample from the tumour using a large needle or an invasive surgery,
年全球在開發對抗癌症的 新療法和新技術上，開 支高達500億元美金。雖 然治療方法不斷進步，但根據世界 衛生組織的統計，癌症仍然是2018 年全球第二大殺手，奪去了大約960 萬人的性命，這相當於整個瑞典的 人口。 根據香港癌症資料統計中心的數 據，本地大約三成的死亡個案是由 癌症引起的。面對這一大長期的健 康威脅，香港的醫學和生命科學研 究者不斷努力，希望改進預防和治 療癌症的技術、普及癌症藥物、收 集疾病數據，並提升普羅大眾對於 癌細胞突變和繁殖的認知。 作為全球抗癌力量的一份子，香 港最優秀的研究者一直與該領域資 金最豐厚的機構合作，一同解開癌 症的奧秘；他們的表現甚至比這些 機構更好。 這些研究者中就包括趙慧君、盧 煜明和陳君賜。這個由香港中文大 學化學病理學教授和DNA專家組成 的團隊正站在臨床研究的前沿，而 他們的研究有極大潛質可以通過早 期檢測降低癌症的死亡率。
救命的篩查 位於沙田的威爾斯親王醫院就像一 個大雜院，看起來都一樣的走廊猶 如迷宮，外觀和氣味都很清潔。趙 慧君和她的團隊就是在這裡開發 了一種非入侵性的液體活組織切片 檢查技術，可以用來檢測早期鼻咽 癌，這種影響鼻子和咽喉的癌症對 西方人來說非常罕見，但在華南地 區的男性中卻很常見，更是香港20 至44歲的男性當中最常見的癌症。 這種技術比傳統的活組織檢查簡 ARIANA 2019
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a liquid biopsy requires a 10-millilitre blood sample. From there, researchers can test for DNA anomalies in plasma samples, identifying any possible fragment of DNA that points to the presence of nasopharyngeal cancer – even before it’s evident on a scan. As part of the landmark study, more than 20,000 ethnically Chinese men between 40 and 62 years of age underwent a simple blood test at the CUHK’s Department of Chemical Pathology between July 2013 and February 2016. By all accounts, the men seemed healthy, presenting no symptoms. But DNA markers in their blood told another story: 309 men showed potential factors for developing the disease. Of those, further testing revealed that 34 subjects had nasopharyngeal cancer, mostly stage 1 or 2. Early detection is critical when it comes to cancer diagnoses. Before the study, oncologists diagnosed 70 per cent of nasopharyngeal cases at stages 3 to 4 when patients present symptoms. But by that point, surgery, chemotherapy and radiation are less effective than they could have been. So far, the results of the CUHK study suggest that those who have a liquid biopsy will have a 10 times better survival rate than those who don’t for this specific type of cancer. That’s because, with the screening, doctors caught 70 per cent of cases at stages 1 and 2, when treatments are most viable.
AHEAD OF THE CURVE Considered the first large-scale study of liquid biopsy as an early diagnostic screening tool, the team’s research was published in one of the world’s most prestigious medical journals, the New England Journal of Medicine, and was later included as one of the journal’s 10 most noteworthy articles of 2017. In the midst of the study, in 2014, the three scientists established Cirina, a commercial company with labs in Hong Kong and San Francisco, to further develop blood-plasma tests and detect devastating diseases before symptoms emerge. The team remains at the forefront of early-detection research – way ahead of well-funded Silicon Valley companies that had been racing to develop the screening method. 78
“Silicon Valley can blow a billion dollars on this, but Hong Kong can actually beat them,” says Scott Edmunds, executive editor at Gigascience, the flagship publication of BGI, one of the world’s largest privatelyowned genetics research companies. Based in Shenzhen, it provides cancer screening and testing services to doctors in Hong Kong. “I wouldn’t be surprised if they got the Nobel Prize [for their work],” he adds. Edmunds is himself a former cancer researcher, who studied eye melanomas early on in his career. “[Grail, a health diagnostic company in Silicon Valley] had a billion dollars to spend on [liquid biopsy research] and [didn't get as far]. [Meanwhile] Rossa, and a few other people here in this tiny little [operation]… they’ve been
A researcher extracts blood plasma to screen DNA for anomalies 研究員抽取血漿樣本以檢測DNA是否有異常
早期檢測對於癌症診治至關重要。在這項研究之 前，腫瘤醫生確診的鼻咽癌個案中，有七成已經發展 到第三到第四期，當時病人已經出現明顯病徴。但到 那個時候，手術、化療和放射治療都沒那麼有效了。 到目前為止，中大研究的結果顯示，接受了液體活 組織檢查的鼻咽癌病人比未接受者的存活率高十倍。 這是因為，有了篩查之後，醫生可以捕捉到七成仍在 第一、二期的病患，而此時接受治療是最有效的。
單得多。液體活組織檢查毋須用大針管或者入侵性手 術從腫瘤中取出組織樣本，它只需要一支10毫升的血 液樣本就可以完成。抽了血之後，研究員會用血漿樣 本檢測是否有DNA異常，找出任何可能指向鼻咽癌的 DNA小塊。這種技術甚至可在掃描診斷出腫瘤前發現 癌症徵兆。 在2013年7月到2016年2月期間，超過20,000名40到 62歲的華人男性參與了這項標誌性研究，他們在香港 中文大學化學病理學系進行了簡單的血液抽檢。從各 方面來說，這些男性看起來都很健康，沒有任何病 徴，但他們血液中的DNA指標卻說出了不一樣的狀 況：其中309名男性有可能會患上鼻咽癌。這些男性接 受進一步檢查後，其中34人被發現患有鼻咽癌，主要 為第一或第二期。
液體活組織檢查是早期診斷篩查工具的首個大規模研 究，趙慧君團隊的研究成果已經在世界最知名醫學期 刊之一的《新英格蘭醫學期刊》上發表，之後被評為 該期刊2017年十大最具價值文章之一。 2014年，研究進行到中段，這三名科學家創立了 Cirina。這家商業公司在香港和三藩市都設有實驗室， 以進一步開發血漿檢測，以及在病徴浮面前發現致命 疾病的方法。團隊一直站競爭期檢測研究的前沿，遠 遠超越資金豐厚且一直在競爭開發篩查技術的矽谷研 究公司。 「矽谷可以投入十億元美金去做這件事，但香港 其實可以打敗他們。」期刊Gigascience執行編輯Scott Edmunds說。該期刊是世界上最大的私人基因研究公 司華大（BGI）的旗艦刊物。總部位於深圳的華大為香 港的醫生提供癌症篩查和檢測服務。「就算他們拿到 諾貝爾獎我也不會驚訝。」他說。 Edmunds自己早期也做過關於眼黑色素瘤的癌症研 究。「（矽谷健康診斷公司Grail）投入了十億元美金 （研究液體活組織檢查），卻沒有走到那麼前。同時 趙慧君以及這個小圈子裡面的其他一些人……他們是 世界上最先做到Grail一直想做的事的人，而且是以極 少的資金達成。」他補充道。 致力於開發早期癌症檢測工具的Grail，一直得到 諸如亞馬遜、比爾·蓋茨、百時美施貴寶（美國製藥公 司）、Illumina（領導市場的跨國基因研究公司）和騰 訊等機構提供資金。Cirina團隊的開創性研究推進了 Grail的目標，雙方在2017年攜手合作。 Edmunds說，趙慧君團隊的成就更為矚目之處是， 香港目前的人均研發經費只相當於北非國家的水平。 聯合國教科文組織的數據顯示，香港目前在科研上的 開支水平與摩洛哥和突尼西亞同等。然而，不同之處 是，香港每百萬人中的科研人員數目較高，達到3,312 名，而在突尼西亞，每百萬人中只有1,800名研究人 員，在摩洛哥則只有1,020名。 ARIANA 2019
F E AT U R E 專 題 故 事
the first players in the world to do what Grail has been trying to do, on a complete shoestring,” he adds. Aspiring to develop tools for early cancer detection, Grail has been funded by the likes of Amazon, Bill Gates, Bristol-Myers Squibb (an American pharmaceutical company), Illumina (a global genomics leader) and Tencent. The Cirina team’s groundbreaking study furthered Grail’s own objectives, and, in 2017, the two companies joined forces. What makes Chiu and her team’s work all the more impressive, Edmunds says, is that the city’s current research and development funding per capita is equal to that of North African countries. Data from UNESCO shows that Hong Kong’s current spending on research and development is on par with Morocco and Tunisia. The difference, however, is that the city has a higher concentration of researchers per million people: 3,312 researchers per million people, versus 1,800 per million in Tunisia, and 1,020 in Morocco. “The [Hong Kong] government has made this big show that they’re doubling the [research and development] budget [from 0.73 to 1.5 per cent of GDP],” Edmunds laments, referring to a November 2018 announcement by Chief Executive Carrie Lam. By comparison, Singapore spends around 3 per cent per capita, while South Korea leads the region with 4.3 per cent of GDP per capita.
「（香港）政府大張旗鼓，說 會倍增（科研）開支（從GDP的 0.73%增加到1.5%）。」Edmunds 對此感到歎惜。他所指的是2018年 11月特首林鄭月娥公佈的政策。與 之相比，新加坡的科研開支達到人 均GDP的3%，而地區領軍者南韓則 達到4.3%。
香港的重要嘗試 儘管經費相對短缺，香港的癌症研 究在過去數十年仍然作出了重要貢 獻。「我自己認為，在癌症管理方 面，香港的臨床試驗是做得特別好 的。」趙慧君說。 這背後有幾個原因。香港人口 密度高，研究員因而容易在短時間 內招募到大量病人。此外，香港病 80
歷完備，人口的基因構成也相對同 質。遺傳同質性通常可以讓研究更 加可信和堅實，因為干擾研究的差 異比較少。 差異，尤其是基因差異，可對 臨床研究產生很大的影響。舉例而 言，一個西班牙人和一個中國人， 對於同樣的治療方法反應未必一 樣，甚至癌症本身，在不同的人身 上顯現出來的方式也不同。鼻咽癌 往往就是這樣。 除了一個理想的人口數據池， 資深醫學研究者趙慧君、盧煜明 和陳君賜也是血漿早期檢測方面 的先驅。在開發液體活組織檢查 之前，盧煜明是第一個在孕婦血 液中發現胎兒 DNA流通的科學 家。這個發現讓醫生可以毋須用 針筒刺入子宮，就能針對唐氏綜
IMMUNOTHERAPY IN HONG KONG What if, instead of using radiation or chemicals to destroy cancer cells, you could train your immune system to fight off the disease? That’s the premise of immunotherapy. With theories dating to the late 1890s, the treatment regime essentially enables the immune system to identify and destroy cancer cells masquerading as healthy cells. As scientists acquire new technologies and a deeper understanding of genetics, immunotherapy has emerged as an active area for researchers in recent years. Currently, there are more than 40 new immunotherapy techniques being tested and developed worldwide, and one of the key researchers in the field is based in Hong Kong. For over a decade, Clinical Associate Professor Dr Thomas Yau, at the University of Hong Kong, and his team have been running clinical trials on immunotherapy drugs at Queen Mary and Prince of Wales hospitals. The research focuses on terminally ill patients
for whom traditional treatments like surgery, chemotherapy, and radiation have been minimally effective. So far, only a third of these patients have responded to treatments. But when it works, the results can be remarkable: “We have some patients who enrolled in clinical trials more than five years ago,” says Yau. “The disease completely disappeared.” To date, immunotherapy has proven most effective in late-stage melanoma of the skin, non-small cell lung cancer, kidney cancer, bladder cancer, head and neck cancers, and Hodgkin lymphoma. Without clinical trials such as Yau’s, it would be impossible to know if immunotherapy works. “We’ve seen immunotherapy try to replace chemotherapy in some diseases like lung cancer, so I think in the recent five years we’ve seen a lot of progress,” says Yau. “As many drug companies are investing in immunotherapy, I think the progress will be [even more] rapid [moving forward].”
進行免疫療法藥物的臨床測試。研究聚焦在末期 病人，傳統的治療手段如手術、化療和放射性療 法，對這些病人已經收效甚微。 到目前為止，接受測試的病人中，只有大約 三分之一對治療有反應。但療法一旦有效，成果 就相當顯著：「我們有些病人參加測試已經超過 五年了，他們的病完全好了。」邱宗祥說。 目前免疫療法被證實在治療末期皮膚黑色素瘤、 非小細胞肺癌、腎癌、膀胱癌、頭頸癌和霍奇金淋 巴癌方面最有效。如果沒有如邱宗祥所做的高質素 臨床測試，就不可能知道免疫療法的效用。 「免疫療法在對某些疾病的治療上正試圖取 代化療，例如肺癌，所以我認為，在最近五年， 我們已經看到了許多進展。隨著許多醫藥公司投 資免疫療法，我認為進展會更快。」邱宗祥說。
如果不用放射性療法或者化療就能摧毀癌細 胞，你會不會訓練自己的免疫系統去對抗這種疾 病？這就是免疫療法的前提。有關免疫療法的理 論早於 19世紀 90年代末就出現，療法的核心是讓 免疫系統識別和摧毀假裝成健康細胞的癌細胞。 隨著科學家掌握新技術和更深入地瞭解基 因，免疫療法在近年成為了研究熱點。目前，全 球各地有超過 40種新的免疫療法技術正被測試和 開發，而該領域的主要研究者之一就在香港。 過去十多年，香港大學臨床醫學副教授邱宗 祥和他的團隊一直在瑪麗醫院和威爾斯親王醫院
F E AT U R E 專 題 故 事
VALUABLE TRIALS IN HONG KONG While relatively short on funding, the cancer research sector in Hong Kong has contributed valuable insights over the past few decades. “Personally, I think in terms of cancer management, Hong Kong does particularly well [when it comes to] its clinical trials,” says Chiu. There are a few reasons for that. With Hong Kong’s highdensity population, it’s easier for researchers to recruit a larger number of patients within a short timeframe. In addition, the city keeps thorough patient medical records, and the population is relatively homogenous in its genetic makeup. Genetic homogeneity usually makes a study more reliable and robust, because it means less variation to interfere with the study. Variation, particularly when it comes to genetics, can strongly influence clinical studies. For example, someone from Spain won’t necessarily react in the same way to treatments as someone from China, and even cancer itself doesn’t present itself equally among people. That’s often the case with nasopharyngeal cancer. In addition to an ideal demographic pool, seasoned medical researchers Chiu, Lo and Chan are pioneers in the field of plasmablood early detection tests. Prior to the liquid biopsy, Dr Lo was the first scientist to discover the presence of circulating fetal DNA in a pregnant mother’s blood. This made it possible to
合症等疾病進行基因檢測。這種 非入侵性的測試現時在全球廣泛 應用。 他們將這項技術推展到癌症研 究。趙慧君說：「研究人員已經知 道，當癌症發展的時候，它的細胞 會死亡，然後把其基因釋放到血液 中。試想像血液就像一個垃圾桶， 裡面裝著死亡中的細胞的所有物 質，那我們現在拿一點血液樣本， 就可以探看可能指向癌症的異常 DNA。」
不斷變形的疾病 雖然全球已經在癌症研究和治療方 面投入了數以百億計美元的資金， 82
test for genetic conditions like Down Syndrome without inserting a needle into the womb. This non-invasive test is now employed widely around the world. They extrapolated this technique to cancer: “Researchers have realised that when a cancer grows, its cells will die and release its DNA into the blood,” says Chiu. “Imagine the blood is like a trash can of all the materials coming out of dying cells, we can now just take a blood sample and look for a glimpse of DNA abnormalities that might be suggestive of cancer.”
A SHAPESHIFTING DISEASE Despite the billions spent on cancer research and treatment globally, there is still no ‘cure’ for cancer. That’s because cancer is a difficult disease to treat, as it isn’t one disease. While the classic definition of cancer – the uncontrolled growth of cells in your body, caused by malfunctioning genes – still stands, it doesn’t really reflect the reality of it. How a cancer starts and spreads can be as varied as the background of its patients. Why do genes start mutating? Why does one person who is exposed to a carcinogen (cancercausing agent) develop cancer, while another does not? Every cancer manifests differently according, in part, to a person’s genetic profile.
The results of the CUHK study suggest that those who have a liquid biopsy will have a 10 times better survival rate than those who don’t. 中大研究的結果顯示，接受了液體 活組織檢查的鼻咽癌病人比未接受 者的存活率高十倍。
但目前仍未有「完全治癒」癌症的 方法。這是因為治療癌症非常困 難，它不是一種單一疾病。雖然癌 症的傳統定義仍然成立，即身體內 有基因失常而引致細胞不受控制地 生長，但這並未反映癌症的實況。 病人的背景不同，其癌症的發 生和擴散方式也會有差異。基因為 甚麼會開始突變呢？為甚麼一個接 觸了致癌物質的人會患癌，而另一 個不會？每種癌症都會因為病人的 基因檔案不同而以不一樣的方式 出現。 趙慧君問：「就算有針對特定 突變的最有效基因療法， 為甚麼它們的效力只能維持一年至 一年多？因為每個人的癌症都有點
“Even with the most powerful gene therapies targeting specific mutations, why do they only work for a year or a little over a year?” Chiu asks. “It’s because every single person’s cancer is a little bit different, so it’s very difficult to find a perfect match or exact treatment for every person.” This variance is why the one-size-fits-all traditional radiation and chemotherapy aren’t always successful, why researchers are constantly looking for alternative treatments, and why there’s a caveat to even the positive results of the team’s liquid biopsy. While these researchers have invented a new method for early detection of nasopharyngeal cancer, other tests need to be developed for the early detection of other cancers. It’s also too early to say whether it would be possible to detect any other forms of cancer this way. Looking ahead, the team's lab will continue to conduct clinical trials with an aim to improve the accuracy of the test, reduce its cost and eventually roll it out to the public. Currently, the group is also examining the potential of liquid biopsies to detect other forms of cancer in early stages and its efficacy on other populations. “[I] can’t share too much detail about our plans,” says Chiu. “Suffice it to say, as a researcher, one should aim to achieve community use of the tests.”
不一樣，所以很難為每個人找到一個完美的或者精確 的對應方法。」 這就是為甚麼均一標準的傳統放射治療和化療並 不總能成功，為甚麼研究員不斷在找其他治療方法， 以及為甚麼趙慧君團隊的液體活組織檢查得到了可靠 的結果，卻仍被質疑：雖然這些研究員發明了鼻咽癌 早期檢測的一種新方法，但也需要研發更多測試方式 來提早發現其他癌症。 液體活組織檢查是否能用於檢測其他癌症，目前 下結論仍為時尚早。展望未來，趙慧君團隊實驗室 會繼續進行臨床測試，目標是提高活組織檢查的準確 率、降低成本，並最終推廣到公眾應用。目前，團隊 正試驗用液體活組織檢查來檢測其他早期癌症，以及 該檢測方法對其他人群是否有效。 趙慧君說：「（我）不能透露計劃的太多細節， 只可以說，一名研究人員的目標，應該是令社會能夠 應用這些檢測方法。」
INCOMING SUPPORT 更多支援 Cancer doesn’t just affect a patient’s body; there’s a profound impact on the mind as well. Despite the mental toll, psychological care is rarely included as a key part of cancer treatment. This is where Hong Kong’s forthcoming Centre for Clinical Innovation and Discovery (CCID) and an Institute of Cancer Care (ICC) could make a difference for patients and caregivers. Led by University of Hong Kong's LKS Faculty of Medicine, the ambitious project will be the city’s first purpose-built cancer-specific research and service centre when it opens within Grantham Hospital in Wong Chuk Hang in 2024. While the CCID focuses on cutting-edge research, the ICC will focus on the psychosocial and psychological needs of patients, families and caregivers. “Most patients are psychologically resilient. It’s just 15-20 per cent that are in persistent distress,” says Dr Wendy Lam, an associate professor at HKU Med who will head the ICC. Those most susceptible tend to be patients with pre-existing coping problems, maladaptive coping mechanisms, as well as those lacking social support from friends and family. “Every cancer patient should have access to psychosocial care,” says Lam. “We see it as a human right.”
癌症當然不止影響病人的身體，它也強烈地衝擊著病人的心 靈，然而，心理關懷仍極少被納入作為癌症治療的一部份。 這正是即將成立的臨床創新及研發中心及癌症綜合關護研究所 可以改變的狀況。 該項目為香港首個專門癌症醫療中心，由香港大學李嘉誠 醫學院領導，並將於2024年開設在黃竹坑葛量洪醫院。臨床創 新及研發中心主要進行尖端科學研究，而癌症綜合關護研究所 則關注病人、家庭和照顧者的社會心理和心理需要。 「大部份病人的內心都很頑強，只有大約15%到20%會感 到持續受壓。」即將主理癌症綜合關護研究所的港大副教授藍 詠德博士說。最脆弱的病人通常之前就有處理壓力的問題，對 壓力適應不良，以及缺乏來自朋友和家人的社會支援。 「每個癌症病人都應該得到心理關懷。我們認為這是人 權。」藍詠德說。
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HEALTH ON THE HORIZON 醫療未來式
Asia’s future will be shaped by extreme living conditions, ageing populations, increasing wealth disparity and worsening air quality. But the region’s dynamic health tech sector is adapting to the momentous shifts ahead. 未來亞洲將面臨一系列挑戰：嚴峻的居住環境、人口老齡化、貧富差距擴大、空氣污染加劇。 不過，該區朝氣勃勃的健康科技產業正順應這些重大變化而演進。
Words 文 Anna Simpson | Illustrations 插畫 Lily Padula 84
ust one month after suffering a major stroke, 80-yearold Aki Nakamura is beginning to recover basic movements in the comfort of her Kyoto home. She wears a custom-built smart exoskeleton – a device that looks like sturdy body armour – steered by Amazon’s Alexa. It supports her spine and subtly assists her movements while her muscles regain their strength and response rates. As she grows stronger, Nakamura’s exoskeleton gradually allows her to carry more of her own weight. It also offsets her tendency to put more weight on her right hip, helping her develop a better alignment to avoid hip and back problems in years to come. Wang Li moved from rural Yunnan, in southwest China, to Shenzhen 15 years ago. Over the last decade, he has gained 40 kilograms – more than half his ideal body weight – a change he attributes to his sedentary lifestyle and a taste for fast food and sweets. Though he’s just 48 years old, predictive modelling shows his life expectancy to be less than 15 years. In accordance with his employer’s pro-health policies, Wang is currently on a mandatory behaviour optimisation plan, meaning he’s required to carry wearable sensors that continually record his heartbeat rate, dietary intake, exercise and sleep. The related app also offers regular tailored lifestyle recommendations and shares a monthly progress report with his manager. Cherry Lau lives in rural Sumatra, Indonesia. Her two children suffer from vitamin A deficiency, which stunts their growth. To help her kids, Lau subscribes to a personalised nutrition programme that uses internal sensors to track nutrients in their blood. The tiny biodegradable sensors are consumed daily as pills and excreted after transferring their readings to an app. Every two weeks, Lau receives a pack of customised powderbased supplements based on the readings, which she mixes into nutritional drinks for her kids. Pregnant with her third child, Lau is also able to perform gynaecological and embryonic health scans at home using a mobile app and a wearable device. Luckily for Lau, the textile manufacturer where she works covers her health insurance plan, so she can afford these technologies. Nakamura, Li and Lau are future fictions. But these health technologies are already taking shape today. As
年 80 歲的中村亞紀經歷嚴重中風才一個 月，便開始能夠在京都的家中舒適地做一 些基本動作。她穿著一件由 Amazon 智能 助理 Alexa 導航的特製智能動力服。這款看起來就像 一副堅固盔甲的設備，可以支撐她的脊椎，並精妙 地輔助她行動，好讓她的肌肉能夠慢慢恢復力量和 靈活起來。隨著亞紀的身體復原，動力服還可以讓 她逐步自行支撐體重，甚至能協助她調整姿勢，改 善她將重心傾側至右臀的傾向，避免她日後盤骨和 背部出現問題。 李望15年前從中國西南部省份雲南的農村地區搬到 了深圳。過去十年，他的體重增加了40公斤，超過了 他標準體重的一半，而他認為這是他運動不足，而且 喜歡吃快餐和甜品所致。雖然他只有48歲，但推算模 型估測他只剩下不到15年壽命。在李望任職公司的健 康政策要求下，他參加了一個強制行為改善計劃，也 就是說他必須佩戴隨身感應器，全天候記錄自己的心 跳、飲食、運動和睡眠。感應器的應用程式會不斷提 供為他量身訂造的生活方式建議，並每個月發送一份 進度報告給他的主管。 劉桃生活在印尼蘇門答臘的鄉村地區。她的兩個 孩子都有維他命 A 缺乏症，因而身體發育受阻。為了 幫助自己的孩子，她參加了一項個人化營養計劃。 此計劃利用一些內置感應器來追蹤他們血液裡的營養 成份，這種微型的可生物降解感應器就像小藥丸，用 家每天吞服後，感應器會將讀數輸送給相應的應用程 式，之後就會被排出體外。每兩周，劉桃就會收到一 份根據這些讀數特別訂製的營養粉，她會將粉末混入 營養飲料中給孩子喝。現正懷著第三胎的劉桃還可以 在家利用穿戴式儀器和流動應用程式，為自己做婦科 和胎兒掃描檢查。幸運的是，劉桃任職的紡織品生產 公司提供醫療保險，讓她可以負擔得起這些科技產品 的費用。 中村亞紀、李望和劉桃都只是虛構的未來世界人 物。不過，上述的健康科技如今已在成型中。隨著許 多極端生活狀況嚴重影響著公共健康，一些創新業務 也在亞洲的健康科技產業中興起。
挑戰極端 從人口和社會經濟狀況，到環境因素和營養潮流，個人 健康總會受到外圍大勢的影響。在亞洲，幾股勢力正構 成眼前的挑戰。 ARIANA 2019
F E AT U R E 專 題 故 事
a number of extreme conditions seriously affect public health, innovative practices are emerging across Asia’s health tech sector in response.
EDGING ON EXTREMES Personal health is always affected by larger forces at play, from demographics and socioeconomics to environmental factors and nutritional trends. In Asia, several forces currently present challenges ahead. There are demographic extremes: In China, Japan and Korea, severely ageing populations are faced with lagging geriatric care due to a shortage of young nurses. In Vietnam and India, hospitals are flooded with patients whose average age is under 30. Wealth gaps are growing profoundly wider, too, affecting the nature of health concerns. In Singapore, for instance, the average wealth per adult has risen significantly over the past 60 years to be among the highest in the world, but this has brought lifestylerelated diseases such as cancer and diabetes; meanwhile, infections and water-borne diseases claim lives in countries with poor sanitation, such as Cambodia and Indonesia. Rapid economic development poses further environmental health challenges. Nine of the 10 most polluted cities in the world are in northern India, and worsening air quality is leading to an increase in poor respiratory conditions across the region. Asia sees both ends of the scale in malnutrition, from undernourishment to obesity – two conditions that exist side by side in China. Access to healthcare also has its own discrepancies, with hospitals unable to cater to demand in heavily populated cities, and rural populations seeing sporadic health services, if any at all. Georgio Mosis spearheads digital transformation in healthcare as head of Innovative Technologies at AIA, a pan-Asian life insurance group headquartered in Hong Kong. He believes a key component of the solution to these issues – geriatric care, chronic disease management, lifestyle-induced diseases, and access to care – will be digital. “There’s insufficient time to train enough doctors and nurses to cater for everyone; we face a tremendous shortage. China has doubled its population within 86
one generation,” says Mosis. “[And so] the future healthcare workforce will be digitally enhanced: We will have digital nurses, their brains trained by humans, to help you manage what you need – diabetes, drug administration, rehabilitation….” Simply put, a robot might soon replace your family doctor, offering a whole range of services, from on-demand consultations and prescriptions to smart exoskeletons that can help with lost mobility and lifting. Currently, Japan is the leading developer of exoskeletons for healthcare, as it searches for ways to keep its ageing population in the workforce longer. Hajime Sato, CEO of health tech accelerator MEPLA Japan (an abbreviation for ‘medical platform’), also sees no cause for concern with the advancing role of technology in care, but for different reasons: “Currently, doctors and nurses cannot focus on treating patients because of messy and fragmented records and tasks. Tech will remove these inefficiencies, so that [medical staff] can give their hearts to the patient and their attention to medical research and developing equipment.” While they identify differing implications for the workforce, both Sato and Mosis foresee a transformation in healthcare services – a shift away from place-based care (such as hospitals and clinics) towards omnipresent health interventions, and a breakdown of the barriers between the different components of the medical industry today. This will affect the relationship between specialists and insurers, hospitals and pharmacies, caregivers and patients. Digitally led changes, they argue, will offer a more well-rounded, personalised health system available to all.
DOCTORS GO DIGITAL What would that look like in practice? For one, specialised healthcare would be available at home. Mosis offers an example from China, where hospitals commonly face overcrowding. Often, he says, patients stay too long while they recover from cardiac surgery, putting pressure on resources – or so it has been until recent years. In 2014, multinational technology company Philips China collaborated with Beijing University Hospital to test its Cardiovascular Family Care and
首先是人口問題：在中國、日本和南韓，由於年輕 護士短缺，嚴重老齡化的人口正面臨護老服務供不應求 的狀況。在越南和印度，醫院裡面則擠滿了30歲以下的 病人。 貧富差距也正在顯著擴大，影響著人們對醫療衛生 的關注。比如在新加坡，成年人人均財富在過去60年大 幅增加，達到世界最高水平，但這也帶來了與生活習慣 相關的疾病，例如癌症和糖尿病。同時，傳染病和經水 傳播的疾病正在衛生條件落後的國家奪去人們的性命， 比如柬埔寨和印尼。 高速的經濟發展也帶來了環境健康方面的更多挑 戰。全球首 10位污染嚴重的城市，九個集中在印度 北部。不斷惡化的空氣質素，讓該地區居民的呼吸 系統健康愈來愈差。在亞洲，營養不良和營養過剩 並存，而這兩個極端可以同時在中國看到。人們使 用醫療保健服務的權利也有差異：在人口密集的城 市，醫院供不應求，而農村人口亦只能獲得零星的 醫療服務。 Georgio Mosis是泛亞人壽保險集團友邦（AIA）的 創新科技主管，也是醫療保健數碼化的領頭人之一。他
相信，數碼科技是解決護老、慢性疾病管理、都市病和 醫療服務享用權等問題的關鍵。 Mosis 表示：「我們沒有充足的時間訓練足夠的 醫生和護士來照顧所有人，我們面對著嚴峻的短缺問 題。中國的人口在一代人的時間裡就翻了一倍，（因 此）未來的醫護勞動力將會透過數碼科技來提升：我 們將會有數碼護士，他們的頭腦由人來訓練，以協助 你管理生活所需，例如糖尿病（監控）、藥物管理、 復康治療……」簡而言之，你的家庭醫生可能很快 就會被一個機械人取代，後者將提供全方位的服務， 從按需診症、開藥，到幫助喪失行動和提重能力者的 智能體外骨骼。目前，日本在保健用體外骨骼開發方 面領先全球，因為該國正設法讓其老齡化的人口工作 久些。 日本醫療科技加速器MEPLA（「醫療平台」的簡寫） 的CEO佐藤創也認為，護理科技的發展沒甚麼值得擔憂 的，但他的理由有點不一樣：「現在，醫生和護士不能 專注照顧病人，因為病歷和工作非常混亂和零散。科技 可以去除這些不便之處，那麼（醫護人員）便可以全心 照顧病人，進行醫學研究和開發工具。」 ARIANA 2019
F E AT U R E 專 題 故 事
Rehabilitation Program, which enables hospitals to discharge stable patients early. “Essentially, the patient leaves the hospital with a medical IoT [Internet of Things] box containing a mobile monitoring system, a blood pressure monitor, scales and an app,” explains Mosis. “Not only does the app coach the patient to take their own readings and remind them to take pills, but it also relays the recorded data to a monitoring doctor.” If necessary, the patient can schedule a conference call with their doctor through the app, and the hospital will contact the patient immediately should they miss a reading. A free 30-day trial is available with partnering hospitals across China. A similar service is under incubation at Cyberport, a technology and digital startup hub on Hong Kong Island. TeamCare by Acesobee, a startup founded in 2013, can supplement or replace the role of a ward nurse with an online care plan that provides instructions for medication, diet and exercise. Besides Philips, the major players in this space are WeDoctor and Ping An Good Doctor, both Chineseowned. WeDoctor, the world’s largest health tech service provider, started in 2010 in Hangzhou, China. A few years later, Ping An, meaning ‘peace’ in Chinese, was established in 2014 in Shanghai. During its Hong Kong IPO last year, it raised US$1.2 billion. Ping An offers a one-stop, online-to-offline service provider. Put simply, the app provides a comprehensive set of healthcare services that transform the traditional in-patient process. Previously, patients would first visit a clinic, testing centre or hospital where a doctor would diagnose an illness and write a corresponding prescription. Then, they would pick up the prescription at a pharmacy. Today in China, patients can reach a diagnosis, purchase medicine and pursue a tailored health plan through the app – all as part of a commercial health insurance package. Hajime Sato sees Ping An as a leading example of an emerging trend in private micro-health insurance integrated with care: “Though the insurance industry and the healthcare industry have been independent until now, they will be fused as one industry in the future. One company will provide both insurance and healthcare services – as Ping An does.” When you need to see a specialist offline, Ping An enables users to book appointments through its 88
partner network. In China alone, this massive system comprises 50,000 doctors and 3,000 hospitals, as well as clinics and pharmacies. A long list of benefits includes a 24-hour service, consultations of no less than 15 minutes, online enquiries with no queues, medicine delivery within two hours (dependent on location), and personal digitised health records. Similarly, competitor WeDoctor connects 27 million monthly active users to more than 2,700 hospitals, 220,000 doctors and 15,000 pharmacies. In 2018, Ping An formed a joint venture company with Grab, a Singapore-based car-hailing app that offers rides, food delivery and payment services in cities across Asia. In 2019, the joint venture will develop partnerships with governments, hospitals and doctors to provide integrated and artificial intelligence-assisted online medical consultations, medicine delivery and appointment bookings – all paid for through GrabPay. The consolidation of a successful Chinese health service with a pan-Asian convenience app shows the potential for such services to scale up across much of East and Southeast Asia.
NEW AI SOLUTIONS Integrated, intelligent health services will generate unprecedented levels of information about the health of populations and the efficacy of treatments. For Sato, the data electronic health records generated from such services will be the key to quality, affordable treatment for the masses. “Until now, treatment was a kind of black box: no one could see the results of the treatment,” says Sato. “Now, we can see who is a good doctor and which medicines work. This can support the patient and the quality of the treatment.” The result, he predicts, will lead to the replacement of human doctors by artificial intelligence: “The AI doctor can digest great quantities of data rapidly to make a more accurate diagnosis,” he explains. “The process and the patient’s journey will be changed by data, and of course by AI combined with machine learning.” To that end, Georgio Mosis points to the crucial development of new smart sensors that can be worn or ingested. One biodegradable battery-free implant, developed by scientists at Stanford University in 2018,
雖然佐藤和 Mosis 對科技發展 會如何影響醫療保健服務行業的 勞動力持不同的看法，但他們都 預言行業將會朝一個方向變革： 從以地方為基礎的服務（比如醫 院和診所），轉為無處不在地介 入人們的健康狀況，而今天醫療 行業中不同領域之間的壁壘也會 被打破。這將影響醫生和保險公 司、醫院和藥房、照顧者與病人 之間的關係。他們認為，數碼變 革將給所有人提供更全面、更個 人化的健康體系。
醫生數碼化 實際上會是怎樣的呢？其中一樣 就是人們可在家中獲得專科醫療 診斷。 Mosis 舉了一個在中國發生 的例子：中國的醫院常常爆滿， 做完心臟手術的病人通常都會在 醫院住上很久，給病床資源帶來 壓力，但這種情況在數年前開始 有所改變。 2014年，跨國科技公司飛利浦 （中國）與北京大學醫院合作，測 試它的居家心血管護理及復康項 目，讓醫院可以早些讓情況已經穩 定的病人出院。 Mosis解釋道：「簡要而言，病 人出院的時候會帶上醫用的物聯網 盒子，裡面有一個流動監測系統、 一個血壓監測器、磅秤和一個應用 程式。該應用程式不僅會指導病人 自己測量讀數，提醒他們吃藥，還 會將記錄到的數字傳遞給監察病人 的醫生。」如果有需要，病人可以 通過應用程式預約醫生進行電話會 議，而如果有任何讀數缺失， 醫院就會立即致電病人。 全中國的夥伴醫院都可以參與該 系統的30日免費試用計劃。與之類 似的服務也正在香港的數碼科技創 新中心「數碼港」中孵化：2013年 成立的艾草蜂公司，推出了一項名 為「醫護通」（TeamCare）的移動 ARIANA 2019
F E AT U R E 專 題 故 事
monitors ‘pulse wave velocity’, or the flow of blood through an artery, to assess the vascular properties of patients at risk for cardiovascular disorders. The research team sees a wide range of potential applications, including transplant, reconstructive and cardiac surgery. Digestible sensors are on the rise, too. In 2017, Japanese company Otsuka gained FDA approval in the United States for the first ‘digital pill’, a device that tracks whether or not patients have taken their medication. The pill was developed for the drug Abilify and has been used to treat schizophrenia, bipolar disorder and depression. The sensor it contains – made of silicon, copper and magnesium – is no bigger than a grain of sand. When it comes into contact with stomach acid, it sends a signal to a patch. Currently, the patient can choose who accesses this data and revoke access at any time. Pregnancy monitoring is another high-growth area for health-tracking devices. Chinese company Extant Future has launched a wearable fetus monitor patch that captures data on movement and heart 90
護理站及護理計劃，它會向使用者提供用藥、飲食和運 動的指引，可以補足或者取代病房護士。 除了飛利浦，該領域的主要公司還有微醫集團和平 安好醫生，這兩家都是中國公司。微醫集團是全球最大 的健康科技服務供應商，2010年創立於杭州。2014年， 平安在上海成立，並於去年在香港上市，募得12億美元 資金。 平安提供一站式、線上到線下服務。簡單而言，這 個應用程式提供綜合性的保健服務，改變了傳統的看診 過程。過去，病人要先到診所、化驗所或醫院，讓醫生 診症，並獲得處方，才能去藥房取藥。 在今天的中國，病人可以通過應用程式來看病、買 藥和購買個人化的保健計劃，而這些都是一個商業醫療 保險套餐的一部份。佐藤創認為，平安是正在興起的 私人微醫保與護理服務結合的一個典型例子。「雖然 保險行業和保健產業到目前為止都是相互獨立的，但 未來它們會融為一體，一家公司會同時提供保險和 醫療服務，就像平安今天在做的那樣。」 倘若你要在現實生活中看醫生的話，平安也可讓你 通過其夥伴網絡辦理預約。單在中國，這個龐大的系統
rate, called Modoo. Rather than ultrasound, it uses a ‘passive monitoring’ system that combines a highly sensitive sensor with an intelligent algorithm, and so can be worn continuously. The app generates a motherfetus health archive and offers access to one-on-one consulting online. In remote areas, where medical access is limited, these sensors, combined with mobile connectivity, could hail a new era for healthcare. Indonesia, home to one of the highest rates of maternal mortality in Asia, is a case in point. The island nation of 268 million is the sixth largest market for smartphones in the world and has one of the fastest growing app markets. Currently, Indonesia’s largest healthcare operator Bundamedik is collaborating with Philips Healthcare and the Ministry of Health to address maternal mortality in rural areas. They are building a central Mobile Obstetrical Monitoring system to enable obstetricians and gynecologists to remotely monitor pregnant women by collecting data from physical examinations, performed at home or in local clinics, via a smartphone app. It’s not just Indonesia. Based in Vietnam, Beth Ann Lopez is the director of Public Affairs at mClinica – a Singapore-based startup providing healthcare data in Southeast Asia. She sees the rapid expansion of health tech through smartphones as a way of addressing inequality across the region. “If you can reach out to very large segments of the population, you can also target specific health needs. And large-scale access means you can prevent data biases and gain a more accurate picture of health problems across populations, to design better interventions.” Sato believes the potential for digital services at scale is also the key to affordability. “Just as the internet has made information accessible to everyone, so will healthcare be democratised. The ‘digital therapeutics’ – where patients are treated through online technologies rather than medication – will become cheaper in the future.” Rather than a pill to mute a mental health condition, the solution would be a behaviour change programme, drawing on psychotherapy techniques. Already, the US FDA has set regulation for software used as a medical device – abbreviated as SaMD.
裡就有50,000名醫生和3,000家醫院，此外還有診所和藥 房。長長的福利清單包括24小時服務、15分鐘或以上的 診症、在線零排隊查詢、兩小時內送藥到家（依地點而 定），還有個人健康電子紀錄。類似地，平安的競爭對 手微醫集團也將2,700萬名月活躍用戶，與超過2,700家醫 院、22萬名醫生和15,000家藥房相連。 2018年，平安與新加坡召車應用程式Grab組成合資 公司，進軍國際。現時，Grab在亞洲多個城市提供叫 車、送餐和支付服務。2019年，這間合資公司將與政 府、醫院和醫生合作，提供綜合性、人工智能支援的 網上診症、送藥和預約服務，所有相關支付都會通過 GrabPay完成。一家成功的中國健康服務企業和一個泛 亞便利程式的結合，展示了醫療科技產業在東亞和東南 亞擴張的潛力。
新人工智能方案 綜合性的智能健康服務將帶來空前數量的人口健康和治 療功效資訊。 對於佐藤而言，為大眾提供高質素而可負擔的醫療 服務的關鍵，正是從上述服務中產生的電子健康紀錄數 據。佐藤說：「直到目前為止，治療在某種程度上還是 黑箱作業：沒有人可以查看治療結果。但現在，我們可 以看到誰是好醫生，哪種藥有效。這對病人和提升治療 質素都有幫助。」 他預言，這個發展最終將使得真人醫生被人工智能 取代。他解釋道：「AI醫生可以迅速理解大量數據，從 而作出更準確的診斷。治療過程和病人的經歷會被數據 改變，也當然會被結合了機器學習的AI所改變。」 Mosis表示，現時業界已發展出穿戴式或攝取式的 新型智能感應器，這些重要發展成果有助發展醫療人工 智能。2018年，史丹福大學的科學家開發了一種可生物 降解的無電池植入器，它可以檢測人們的「脈波傳導速 度」，即血液通過動脈的流速，從而評估有心血管疾病 風險的病人的血管性能。該研究團隊認為這個發明有廣 泛的應用前景，包括在移植、重建和心臟手術方面。 可消化的感應器也在發展當中。2017年，日本公司 大塚製藥獲美國食品藥品監督管理局批准，推出美國 首種「數碼藥丸」，它可以用來追蹤病人有沒有服藥。 這個「數碼藥丸」是專門為藥物Abilify而開發的，此 藥用於治療精神分裂症、躁鬱症和抑鬱症。藥丸裡面 的感應器由矽、銅和鎂製成，大小和一粒沙差不多。 當藥丸與胃酸接觸的時候，就會發信號給穿戴式貼 片。目前，病人可以選擇誰有權接觸有關數據，也可 以隨時收回權利。 ARIANA 2019
F E AT U R E 專 題 故 事
DATA-DRIVEN DEVELOPMENTS Healthcare projections are a ripe area for innovation. In May 2018, Google published a paper in Nature, an international scientific journal, showing that predictive modelling based on electronic health records can result in more accurate diagnostics and life expectancy estimates. In Hong Kong, GemVCare combines analysis of your genetic make-up with lifestyle data to estimate the probability of developing diabetes. Its comprehensive testing programme DForesee Enlighten not only includes your genetic test result, but also provides a personalised recommendation and follow-up by healthcare professionals. Looking ahead, there are potential setbacks to having detailed records of your health online. You may be happy for your doctor to have access to your health history, but should your employer, too? According to Mosis, they soon will: “People get health insurance through companies, so companies want to reduce costs by improving the health of their employees. It’s the big P of Prevention! We are seeing
妊娠監測也是健康追蹤儀器的一 個高速發展領域。中國公司傳世未來 已經推出了一種名叫「萌動」的穿戴 式胎兒監測貼片，可以記錄胎兒運動 和心跳的數據。這種貼片使用的不是 超聲波，而是結合了高度敏感的感應 器和智能算法的「被動監測」系統， 因此能夠供孕婦長期穿戴。「萌動」 的應用程式可以製作母嬰健康檔案， 並提供一對一的網上諮詢服務。在醫 療服務有限的偏遠地區，這些連接了 流動網絡的感應器，可能帶來醫療保 健的新紀元。 印尼作為產婦死亡率最高的亞洲 國家之一，是一個關鍵案例。這個 擁有2.68億人口的島國是全球第六大 智能手機市場，也是應用程式發展 速度最高的市場之一。 目前，印尼最大的醫療保健集團 Bundamedik正與飛利浦醫療科技以 及衛生部合作，來應對鄉村地區的產 婦死亡問題。他們正創建一個中央管 92
many more preventative programmes emerging to prevent musculoskeletal disorders, mental health conditions, burnout and so on.” Indeed, there are many positive implications for a healthy workforce. In Japan, where the concept of karoshi (or ‘working to death’) is a recognised phenomenon, the cost of insufficient sleep (affecting productivity and decision-making) is estimated to be nearly 3 per cent of GDP. Employers are innovating to turn this around: one Japanese wedding planning company, Crazy.Inc, is awarding points to employees who get at least six hours of sleep a night, five days a week. But in the long term, how much access individuals should grant to those outside the medical profession is something that’s bound to spark debate. For instance, what if your employer can not only see your health data, but also use it to make predictions about your future? Might women face further discrimination at work based on family planning projections? As health apps improve the access of central services to individuals’ records, might individual access to other services actually be infringed? Currently regulation on
理的流動產科監測系統，透過一個智 能手機應用程式，讓婦產科醫生可以 收集孕婦在家或在診所進行的體檢數 據，從而遠距離監測孕婦。 這種趨勢不止在印尼發生。為東 南亞國家提供醫療健康數據的新加 坡初創企業mClinica，其常駐越南 的公共事務總監Beth Ann Lopez認 為，通過智能手機達成的健康科技 高速發展，是應對區內服務供應不 平等問題的一個解決方法。「如果 你可以接觸到非常大量的人口，你 就可以針對地滿足特定健康需要。 掌握大規模的數據也意味著你可以 防止數據偏差，對人口健康問題有 更準確的認識，從而設計更好的介 入方案。」 佐藤相信，大規模數碼服務的 潛力也是讓醫療服務變得可負擔的 關鍵。「就如互聯網讓資訊變得人 人可以取用一樣，醫療保健服務也 會全民化。所謂的『數碼療法』，
即病人通過網絡技術而非醫藥獲得 診治，會在將來變得更便宜。」 「數碼療法」並不仰賴藥物來 紓緩心理健康問題，它可利用配備 心理治療技術的軟件程式來改變病 人行為。目前美國FDA已經為用作 醫療設備的軟件設立規則，簡稱為 SaMD。
數據驅動發展 健康預測是一個成熟的創科領 域。2018年5月，Google在國際科 學期刊《自然》發表論文，指出 建基於電子健康紀錄數據的預測 模型可以帶來更準確的診斷和壽命 估算。 在香港，基琳健康公司 （GemVCare）可以將你的基因結構 分析和生活習慣數據整合，以推算你 患上糖尿病的機率。其綜合性檢測計 劃DForesee Enlighten除了提供你的
“There’s insufficient time to train enough doctors and nurses to cater for everyone; we face a tremendous shortage. China has doubled its population within one generation.” 「我們沒有充足的時間訓練足夠的醫生和護士來照顧所有 人：我們面對著嚴峻的短缺問題。中國的人口在一代人的 時間裡就翻了一倍。」 – Georgio Mosis
how health data is used lags far behind the innovations. Only four countries globally have a digital health policy – and none of them are in Asia. Digital health publication The Medical Futurist highlights the “considerable risk” of authoritarian regimes misusing patients’ online data. For instance, we might see a rise in paternalism, whereby a national health insurance holding could change patients’ premiums – and even their access to other services – based on continual surveillance of their lifestyle choices. Too many steaks or cigarettes, and your premium could rise while your eligibility for healthcare falls. A spectrum of possible implications is already
基因檢測結果，還會提供個人化的 建議，並有專業醫護人員跟進。 長遠來看，將你的詳細健康紀 錄放在網上，是可能有風險的。你 或許願意讓你的醫生獲得你的健康 歷史，但是否也願意讓你的僱主這 樣做呢？ Mosis認為，他們很快就會拿 到：「人們從自己的公司獲得醫療 保險，因此公司會希望通過改善員 工的健康來減少保費支出。這就是 預防的意義！我們看到很多預防性 的項目正在興起，比如預防肌肉和 骨骼疾病、心理健康狀況以及過勞 等問題的項目。」 健康的勞動力的確有很多好 處。在日本，「過勞死」（日語： 過労死）是一個顯著現象。睡眠不 足（影響生產力和決斷力）估計造 成了該國3% GDP的損失。僱主正 想方設法改變這種狀況：一家日本 婚慶公司Crazy.Inc正通過加分的形
emerging. At the relatively benign end, there’s mandatory use of behavioural change apps, such as quitgenius.com, which help you stop smoking by identifying what drives you to light up. At the other, there’s health-based discrimination, with increasingly selective access not only to healthcare, but to employment, travel destinations, financial credit, and even housing. As the health landscape changes, our digital records could affect every aspect of our day-to-day lives. We’re accustomed to the idea that our lifestyle choices affect our health; soon we might need to recognise that it works both ways. In the future, personal health might just become more and more of a public affair.
式，鼓勵員工每週最少五晚睡六小 時以上。 但長遠而言，容許非專業醫護 人員獲取多少個人健康資料，仍必 有爭論。舉例說：如果你的僱主不 僅可以看到你的健康數據，還可以 用這些數據來預測你的未來？女性 是否可能因為有關她們家庭計劃的 預測，而在工作上遭遇更多歧視？ 隨著健康應用程式提升了中央 服務對個人紀錄的獲取能力，個人 對其他服務的獲取權利會否被侵 犯？目前全球對健康數據的規管遠 遠落後於相關創新發展，只有四個 國家有數碼健康政策，而這些全 部都不是亞洲國家。數碼健康雜誌 The Medical Futurist指出，威權政 體有「相當風險」濫用網上的病人 數據。 一個例子是，我們可能會看到 更多家長式管治，一個國家醫療 保險控股集團靠監測病人的生活習
慣，就可以改變病人的保費，甚至 他們獲得其他服務的機會。吃太多 牛扒，抽太多煙，都可能導致你的 保費上升，同時令你獲得醫療保健 服務的資格被調低。 一系列可能的後果正在浮現。 它有相對良性的一端：強制人們 使用改變行為的應用程式，例如 QuitGenius.com。此程式可以通過 辨識你點煙的誘因來幫助你戒煙。 至於另一端，則有健康歧視。不僅 醫療保健服務的分配越來越有選擇 性，就連就業、旅行目的地、信貸 額度也是，甚至房屋亦然。 隨著醫療保健行業的生態改 變，我們的數碼紀錄將影響我們日 常生活的方方面面。我們已經習慣 了「生活方式影響健康」的概念， 很快，我們可能要認識到，反之亦 然。未來，個人健康將會日益成為 一項公共議題。
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PRICING OUT PATIENTS 病不起 Lengthy waits and rising costs have created a healthcare system in which only the affluent can access fast, effective treatment in the private sector. 漫長的等待和不斷上升的價格，讓醫療體系變得只有富人 才能在私營機構得到快速而有效的治療。
Words 文 Rachel Blundy | Photography 攝影 Anthony Kwan
ic Tinworth is a digital design consultant, trail runner and father. In the summer of 2018, the 44-year-old, who lives with his partner and two children in Mid-Levels, was diagnosed with glioblastoma multiforme (a highly aggressive form of brain cancer). After receiving the shocking news, Tinworth quickly sought treatment. He visited private Hong Kong Adventist Hospital for surgery and public Queen Mary Hospital for therapy, leaning on his health insurance to cover the lion’s share of his HK$1 million-plus medical bills. “The advantages of going private are immeasurable if you are covered by insurance,” says Tinworth. “It’s so much quicker and easier. Public hospitals are under-resourced and overburdened, but you save a lot of money.” During his ongoing recovery, Tinworth had to relearn to walk. After just seven months, he is already back running on Hong Kong’s trails, completing the 12-kilometre QNET Gurkha Trailblazer race in January this year. Tinworth considers himself lucky. For those without a health insurance plan, access to the same treatments so quickly might have been impossible in Hong Kong.
That has been the case for Pong*, an unemployed mother of two who has been fighting stage 4 lung cancer since November 2017. Without an insurance plan, she’s endured serious financial burdens to cover the cost of her treatments. “Neither my husband [who is also a cancer patient] nor I have any income. My children are still studying [so they can’t help],” says Pong. The family turned to the Community Care Fund, a financial assistance programme that supports those who fall outside the social safety net. In addition, they’ve raised money with help from the Apple Daily Charitable Foundation, the publication’s fundraising platform, which has helped cover some expenses. But it is still not enough. “The hospital didn’t schedule my first treatment until January [two months after the diagnosis]. By that time, I already couldn’t walk. My condition is very bad,” says Pong. After five months of targeted therapy and chemotherapy, Pong’s condition continues to deteriorate. “The doctors [at Queen Mary Hospital] said there was no medicine suitable for me and told me to go home.”
THE COST OF CANCER According to a 500-person survey released last July by Hong Kong-based Cancerinformation.com.hk’s Charity Foundation, the average cost for cancer treatment at the city’s public hospitals can easily exceed HK$270,000. That number doesn’t include targeted therapy or immunotherapy, as some of these treatments are not subsidised by the Hospital Authority (HA). As a comparison, private cancer care is estimated to cost HK$1.3 million on average. To put that into perspective, the city’s median wage was just HK$16,800 a month, or roughly HK$200,000 a year, in 2017. Furthermore, 11 per cent of survey respondents said they would have to sell their apartments to raise funds for their treatments, while 56 per cent said they had heard stories about fellow cancer patients forced to terminate therapies because they could no longer afford them. Legislative Assembly member Fernando Cheung Chiu-Hung says such situations are common in Hong Kong – and the root of the issue lies with the HA. As the statutory body managing all the
ic Tinworth是一名數碼設計 顧問、跑山愛好者 ，也是 一位父親。2018年夏天， 44歲且一家四口住在香港半山的他， 被確診患有多形性膠質母細胞瘤 （GBM，一種高度惡性的腦癌）。 噩耗襲來，Tinworth迅速求醫。 他在私家的港安醫院接受手術，之 後到公立的瑪麗醫院做治療，過百 萬港元的開銷則大部份依靠他的醫 療保險來支付。 Tinworth說：「如果你有保險， 去私家醫院好太多了。那裡快很 多，方便很多。公立醫院資源不足 而且負擔過重，但在那裡你可以省 下極多錢。」 復健期間， Tinworth 要重新 學習走路。僅僅七個月後，他已 經可以再次在香港的行山徑上奔 跑，並在今年 1月完成了 QNET Gurkha Trailblazer 的 12公里跑 山比賽。 Tinworth 覺得自己很幸 運。如果沒有醫療保險，在香港 幾乎不可能迅速地得到和他一樣 的治療。 龐姐*就是其中一個沒那麼幸運 的人。這名兩子之母沒有工作，她 從2017年11月開始一直與第四期肺 癌搏鬥。沒有保險的她，為治療癌 症而背上沉重的經濟負擔。「我丈 夫（也是癌症病人）和我都沒有工 作，我的小孩又還在上學（而不能 幫補家計）。」她說。 他們向關愛基金求助。這個經 濟援助計劃專門為未能得到社會安 全網保護的人提供支援。此外，他 們還通過蘋果日報慈善基金募捐。 可惜這些加起來仍不足夠。 「醫院到1月才安排我接受第一 次治療（那是確診的兩個月後）。 那時候我已經無法走路了，我的狀 況非常差。」龐姐說。在五個月的 標靶治療和化療之後，龐姐的狀況 持續惡化。「（瑪麗醫院的）醫生 說沒有藥適合我，讓我回家。」
癌症治療的代價 香港癌症資訊網去年7月發佈的 一項500人調查結果顯示，在香港公 立醫院治療癌症的平均開支動輒超 過27萬元港幣。而這還不包括標靶 治療和免疫治療，因為其中一些療 法不受醫院管理局（醫管局）的資 助。相比之下，在私家醫院的治療 平均開支高達130萬元港幣。這些價 格是甚麼概念？在香港，2017年的 薪酬中位數是每月16,800元港幣， 或大約每年20萬元港幣。 此外，調查參與者中有11%的人 表示，他們不得不賣掉自己住的房 子來支付治療費；56%的人表示他們 聽過其他癌症病人因為無法支付費 用而被迫中斷治療。 立法會議員張超雄說，這些狀況 在香港比比皆是，而問題的根源在 醫管局。作為管理全港公立醫院的 法定機構，醫管局要應對大量有不 同需要的病人，而其開支預算來自 政府有限的撥款。 「醫管局要講成本效益，也就是 說，他們要保證用有限的預算幫到盡 可能多的病人。」張超雄解釋道。他 同時指出，醫管局傾向優先處理較年 輕和康復機會較大的病人。「因為如 果一個病人是長者，（醫管局）會認 為就算治癒的機會大，回報也不高。 這是很殘酷的。」 政府已經採取一些措施，希望 減輕低收入住戶的經濟負擔。比 如，2018年推出的自願醫保計劃讓 受保的癌症病人在每個保險年度， 可以就非手術性的治療報銷高達八 萬元港幣，而每年的整體報銷上限 是42萬元港幣。 香港癌症資料統計中心總監、 臨床腫瘤科醫生黃錦洪預計，由於 人口老化，到2030年，香港的新增 確診癌症個案將上升30%到40%。 香港理工大學的一項研究指出， 未來20年內，香港居民每四人將有 ARIANA 2019
F E AT U R E 專 題 故 事
government hospitals and institutes in Hong Kong, the HA handles the vast and varied needs of patients while operating on a limited budget granted by the government. “HA values cost-effectiveness, meaning they need to make sure they can help as many people as possible with a limited budget,” Cheung explains, noting that the HA tends to prioritise younger and more hopeful patients. “[That’s] because when a patient is old, [the HA] thinks the return is insignificant, even when the treatment is hopeful. This is really cruel.” The government has taken some steps to alleviate the financial burden on low-income households. For instance, the Voluntary Healthcare Insurance Scheme programme, which launched in 2018, enables cancer patients to claim up to HK$80,000 per policy year for non-surgical cancer treatments and an overall limit of $420,000 in claims per year. Looking ahead, Hong Kong Cancer Registry Director Dr Wong Kam-hung, a clinical oncologist, has projected the number of new diagnosed cancer cases could rise 30 to 40 per cent by 2030 due to the city’s ageing population.
一人達到65歲或以上。由於癌症在 長者中最為常見，這個預測對香港 已經超負荷的公立醫院體系提出了 新的挑戰。 「隨著香港人口壽命延長和整體 老化，對醫療、福利和其他服務的 依賴也會增加。」理大活齡學院聯 席總監錢黃碧君2018年接受大學訪 問時如是說。
大排長龍 香港大約九成的病人在公立醫 院就診，但只有大約四成的醫護人 員在那裡工作。去年，醫管局旗下 所有的公立醫院裡面，合共只有大 約100名執業臨床腫瘤專科醫生。據 2018年香港英文報紙Standard的報 導，香港執業專科醫生協會成員龐 96
Within the next two decades, one in every four residents will be 65 or older, according to a Hong Kong Polytechnic University study. Since the incidence of cancer is most common in the elderly, this poses a challenge for the already overburdened public healthcare system. “As Hong Kong people are living longer and getting older, the chances of dependency on medical, welfare and other services will be greater,” said Teresa Tsien, co-director of the school's Institute of Active Ageing, in an interview with the university in 2018.
GET IN LINE The public system currently treats about 90 per cent of patients while only employing an estimated 40 per cent of the city’s doctors. There were an estimated 100 practicing clinical oncology specialists working under the HA in the entire city last year. This indicates a doctor-patient ratio of about 1 to 2,172, as Jeffrey Pong Chiu-fai of the Hong Kong Practicing Specialists Association told the Hong Kong Standard in 2018.
朝輝醫生說，這表示醫生和病人的 比例為1比2,172。 去年10月，在與癌症慈善團體、 立法會議員和公務員的會議上，政務 司司長張建宗承認，有關問題是一場 「硬仗」。他說：「我們注意到死亡 率和新增癌症個案數字都在上升， 主要是因為人口老化和生活方式的改 變。這種趨勢對於醫療體系和經濟發 展的不利影響不能低估。」 對於病人而言，這可能意味著候 診時間將更加漫長。2015年醫管局發 佈的數據顯示，在公立醫院，病人 可能要等候長達兩年半才能看到專 科醫生。會計師事務所KPMG在2016 年9月發佈的一份研究指出，2013 年，大腸癌病人在確診之後，平均 要等67天才能接受首次治療。至於 乳癌病人，則平均需要等候50天。
這幾乎是英國癌症病人平均等候時 間的一倍。這份研究同時指出，在 英國，2014至2015年，癌症病人在確 診之後，平均需要等候31日，即可 在公共醫療系統接受首次治療。 對於患上惡性腫瘤如胰臟癌的 病人而言，這樣的等候可能等於宣 佈死亡。至於其他病人，則可能在 治療時間、康復時間和整體壽命方 面受到重大影響。由於約診延誤， 在公立醫院治療癌症的病人很可能 要接受不同腫瘤科醫生的診治和諮 詢，而且未必能得到為他們量身訂 做的服務。 為了避免耽誤治療，財務上有能 力的病人會到私家醫院求診，但那 裡的費用可以是公立醫院的10倍或 20倍。相對公立醫院，私家醫院普 遍可以讓病人更快更高效率地約到
delay could be a death sentence. In other cases, it could significantly affect the patient’s length of treatment, recovery period and overall life expectancy. As well as contributing to appointment delays, this means cancer patients in public hospitals are likely to receive treatment and consultations with more than one oncologist during their illness, and may not receive particularly personalised service. To avoid delay, patients with the financial means will turn to private healthcare, where they’ll pay 10 or 20 times more for their treatments. By contrast to the public system, private hospitals generally provide a faster and more efficient treatment schedule with a dedicated physician. They also tend to provide more comfortable facilities, such as private or semi-private rooms with amenities including television and WiFi, and sometimes have more advanced cancer treating equipment. But despite the higher costs, the expertise of private hospital doctors is no different to those in the public system, according to Dr Stephen Yau, an oncologist at Premier Medical Centre. “There should be the same standards of treatment [from doctors],” he says. Rather, it is the medical service
Speaking at a meeting of cancer charities, lawmakers and civil servants in October last year, Chief Secretary for Hong Kong Matthew Cheung Kin-chung conceded the issue was an “uphill battle.” “We are mindful that both the high mortality rate and the number of new cancer cases are on the rise, mainly because of the ageing population and changes in lifestyle,” he said. “The adverse implications of this growing trend on the healthcare system and economic development should not be underrated.” For patients, it will likely result in even longer wait times. Data published in 2015 by the HA revealed that public hospital patients can wait up to 2.5 years to see a specialist. Back in 2013, colorectal cancer patients faced a 67-day wait on average between their diagnosis and first treatment, according to a study by auditing firm KPMG published in September 2016. For breast cancer patients, the wait was about 50 days. That’s nearly double the wait time in the UK, where cancer patients in the public system waited 31 days on average in 20142015, the same study showed. In cases where a patient is suffering from an aggressive tumour, such as pancreatic cancer, this
F E AT U R E 專 題 故 事
and treatment mode in the private system that might be regarded as “superior” to the public one, according to a 2015 study published in the Journal of the Chinese Medical Association comparing the referential significance of Hong Kong’s healthcare system to that of mainland China.
A ‘SCHIZOPHRENIC’ PRICING SYSTEM
Ultimately, Hong Kong remains a city of ‘haves and have nots’. Estimated costs of cancer treatment vary significantly depending on whether you go public or private. In the private sector, colorectal cancer patients could spend as much as HK$417,764 on treatments, including a colonoscopy and a colectomy, according to figures compiled by HSBC based on Hong Kong Adventist Hospital fees. The same treatment in a public hospital may only cost the patient about HK$200 depending on the convalescence time. Meanwhile, lung cancer patients at private Union Hospital may have to spend HK$136,050 for a lobectomy (removing a lobe from one of the lungs) plus HK$14,000 to HK$16,000 per month for targeted therapy drugs. In a public hospital, it would cost about HK$200 for the lobectomy, HK$80 for each round of chemotherapy or radiotherapy, and possible extra costs for certain publicly available targeted therapy drugs. “It’s a schizophrenic system,” says Dr Raymond Chang, a Hong Kong-born, New York-based cancer specialist and author of Beyond the Magic Bullet: The Anti-Cancer Cocktail. “There is no middle ground ... Private hospitals are very expensive – they can be as expensive as in the US. Doctors can charge whatever they like. If I’m a renowned medical practitioner, like some doctors in Central, then I can charge more. But if I’m a doctor in Kwun Tong, then I’ll probably charge a lot less.” While there is no specific data on how much patients in private hospitals might be ‘overpaying’ for their treatments, Chang says private facilities tend to suggest therapies that are not strictly necessary, adding to their overall cost. “It’s a common scenario,” he explains. “Patients have the idealistic view that doctors will not be making suggestions based on financial gain; but that is only the ARIANA 2019
case in the public sector. Of course [doctors] will deny it, but Hong Kong society is very commercial.” He says it reminds him of an old joke: If you ask your barber if you need a haircut, of course he’ll say yes. Private hospital doctors maintain they always work within the best interests of a patient. Dr Yau says “the majority” of private hospital doctors are following the same treatment guidelines as their counterparts in the public system. “I do not think [prescribing unnecessary treatments] is a big issue,” he says. “There should be the same standards of treatment across private and public hospitals. It is whatever is best for the patient.” In some cases, doctors suggest the most effective treatments but, in the end, the patient might not be able to afford it. “Twenty to 30 years ago, we didn’t discuss costs of treatment; we just prescribed what was appropriate,” Chang says. “Nowadays, we have to consider if the patient will [be able to] pay for it.”
THE DRUG FACTOR Aside from surgery, the cost of anti-cancer drugs can be a significant expense for patients in Hong Kong. Due to delays in making new drugs available in the public healthcare system, some patients resort to paying higher fees at more expensive private clinics. Across the city, both doctors and patient advocate groups are pushing for better access to timely, effective and affordable medications. In fact, it’s one of the government’s most pressing issues. According to a 2016 report by Hong Kong-based insurance company Swiss Re, the HA reviews about 10 to 20 drugs per quarter for all conditions, and approves just 40 per cent on average. It can take between 18 to 24 months for the authority to formally approve a drug, compared to just 60 days in Singapore, according to a 2013 study by the University of Hong Kong. “It’s all about money,” says Cheung. “As the HA is facing a big collective [the public], the [HA] often opts for cheaper medicine, and avoids using the most advanced and expensive medicines which are more effective and have fewer side effects.” But when it comes to cancer patients, this practice is problematic. Since cancer medicine typically develops
專責醫生面診。他們也會提供更舒適的設施， 比如私人或半私人病房，裡面配有電視、無線 網絡等設施。私家醫院有時也備有更先進的癌 症治療設備。 進匯醫務中心的腫瘤科醫生丘德芬說，雖然 私家醫院費用高昂，但醫生的專業能力與公立 醫院的並無不同。「（醫生的）治療標準應該 是一致的。」他說。不過，根據2015年一項發 佈在《中華醫學會雜誌》的香港與中國大陸醫 療體系研究指出，私家醫院提供的醫療服務和 治療方式被認為比公立醫院更「優秀」。
「精神分裂」的定價制度 講到底，香港仍然是一個貧富懸殊的城 市，在公立和私家醫院治療癌症的費用可以相 距極大。匯豐銀行根據港安醫院收費整理的數 據顯示，在私家醫院，大腸癌病人的治療費 用可能高達 417 , 764 元港幣，包括做大腸鏡檢 查和大腸切除手術。而在公立醫院，根據康復 時間的不同，同樣的治療收費只需要大約 200 元港幣。 在私家的仁安醫院，肺癌病人要為肺葉切 除手術支付136,050元港幣，之後的標靶治療藥 每個月要花費14,000到16,000元港幣。在公立 醫院，肺葉切除手術費大約是200元港幣，一輪 化療或放射性治療的費用是80港元，另外還可 能有一些開銷會用於公立醫院可以提供的標靶 治療藥。 生於香港、常居紐約的癌症專科醫生張毅生 說：「這是一個精神分裂的系統。」張毅生醫 生是Beyond the Magic Bullet: The Anti-Cancer Cocktail（暫譯：《超越靈丹妙藥：雞尾酒抗癌 法》）一書的作者。「沒有中間地帶……私家 醫院非常貴，它們的價格可以高達美國水平。 醫生想收多少錢都可以。如果我是一個有名的 醫生，比如某些在中環開診所的，我可以要價 更高。但如果我是一個在觀塘的醫生，我的收 費就可能要低很多。」 沒有具體數據說明私家醫院的病人可能 「多付」了多少費用，但張毅生醫生說，私家 醫院通常會建議不一定需要的治療，藉此提高 病人的整體費用。 他解釋道：「這很常見。在病人的理想中， 醫生不會根據收入來給治療建議，但其實只有公
BY THE NUMBERS 看數說話 When it comes to private versus public healthcare costs, there is no middle ground. At public hospitals, patients are typically charged an admission fee of HK$75 plus HK$120 per day, plus nominal drug fees. Surgeries and scans are usually included in the cost. However, private hospitals charge by the service. Here's an overview of fees: 私家醫院和公立醫院的收費之間沒有中間地帶。在公立醫院，病人通常要繳付75元港幣的 入院費、每日120元的住院費及少量藥費。手術和掃描的費用通常已包括在內。不過，私家 醫院則按服務收費。以下是其收費概覽：
PRIVATE CARE 私家服務
COLECTOMY (OPEN) 大腸切除術（開腹）
BREAST BIOPSY 乳腺活組織檢查
ONE ROUND OF RADIOTHERAPY 放射性治療（一輪）
ONE ROUND OF CHEMOTHERAPY 化療（一輪）
AVERAGE COSTS 平均收費
HK$24,000 HK$207,000 HK$136,000 HK$3,900 HK$3,400 – HK$5,000 HK$80,000 – HK$300,000 HK$40,000 – HK$50,000 HK$40,000 – HK$50,000 HK$850,000 – HK$3,600,000
F E AT U R E 專 題 故 事
at a faster rate and costs more than other drugs, Cheung says the HA often excludes expensive targeted therapies and immunotherapy from the subsidised system, categorising them as selfpaid medicines. “Our government is always trying to [decrease their] commitment, and let the citizens be responsible for their own needs,” he criticises. “They are like: If you have a problem, please look for a solution in the market, don’t come to me.” Cheung says that HA doctors may find it challenging to suggest expensive drugs to less affluent patients, even if the drugs could potentially be useful to cure their diseases. “Some doctors told me that they choose not to tell patients about expensive drugs because they don’t think patients can afford it,” he adds. Alex Lam, the chairman of campaign group Hong Kong Patients’ Voices (HKPV), says those with the financial flexibility will seek drugs within the private healthcare system, which increasingly makes them a ‘luxury’ only afforded by the well-off. “Drugs are accessible only when you have the necessary funds to pay for them,” he says. “Cancer drugs are expensive and new drugs will take a long time to get into Hong Kong.” Lam suggests that while there are some government subsidies available to patients who cannot afford certain drugs, in general, the current system means that many Hongkongers are priced out of the drugs market if they want to access the latest treatments. “The private hospitals are meant for middle-class and rich people, or those who are covered with medical insurance,” he says.
SOURCES OF SUPPORT 支援渠道 In the charitable sector, cancerinformation.com.hk has created a crowdfunding scheme with an aim to support the city’s most needy. Permanent residents who do not qualify for subsidies are eligible to apply. Last year in March, the government also announced the creation of the Voluntary Healthcare Insurance Scheme. It hopes the scheme will shift about 1.5 million Hongkongers into the private healthcare system. Participants may qualify for a tax break of HK$8,000 if they join the scheme. Average premiums for standard plans could be about HK$4,800; however, the scheme does not guarantee support for high-risk patients. 像癌症資訊網這樣的慈善機構已經建立了眾籌計劃，以支援香港最有需要的人。未合資格 獲得政府資助的香港永久居民都可以申請援助。 去年 3月，政府也宣佈建立自願醫保計劃，並希望該計劃可以將大約 150萬港人轉移到 私營醫療系統。計劃參加者可以獲得 8,000元港幣的免稅額。標準計劃的平均保費大約為
Learn more 詳情請看 cancerinformation.com.hk
立醫院的醫生是這樣……當然（醫 生）會否認，但香港社會真的非常 商業化。」他說這種現象讓他想起 一個老笑話：如果你問自己的理髮 師我需不需要剪頭髮，他是不會說 不需要的。 私家醫院的醫生堅稱他們總是為 了病人的最大利益著想。丘德芬醫 生說，私家醫院的「大部份」醫生 都遵循與他們在公立醫院的同行一 樣的治療指引。他說：「我不認為 （開具不必要的治療處方）是一個 很普遍的問題。私家和公立醫院的 治療標準應該是一樣的，都是做對 病人最好的決定。」 在一般情況下，醫生會提議最有 效的治療，但病人最終可能未必負 擔得起。張毅生醫生說：「二三十 年前，我們不會討論治療費用；我 們會給出我們認為最合適的處方。 現在我們要考慮病人能否支付。」
藥物因素 除了手術，抗癌藥也對香港的 病人構成一大開支。由於新藥遲遲 未能進入公立醫院系統，一些病人 只能到更加昂貴的私家診所買貴價 藥。香港的醫生和病人倡議組織都 在推動更加及時、有效和便宜的藥 物供應。 而這也是香港政府要處理的最 迫切問題之一。香港保險公司Swiss Re在2016年發表的一份報告指出， 醫管局每季會檢視10到20種藥， 平均只會批准其中大約四成投入使 用。香港大學2013年的一項研究指 出，醫管局正式批准一種藥物可以 花上18到24個月，而新加坡只需要 60日。 立法會議員張超雄說：「是錢的 問題。醫管局要面對公眾，它通常 會選擇比較便宜的藥物，並避免用 最先進和最昂貴的，即便後者比較 有效，而且副作用比較少。」
A BIG BUSINESS Cancer-fighting drugs are big business. Global spending on cancer medicines will exceed US$150 billion by 2020, marking an annual growth rate of 7.5 to 10.5 per cent through 2020, according to a report from healthcare information company IMS Health Holdings. There are no estimates for overall annual spending on cancer medicines in Hong Kong, but the 2016 KPMG report found cancer drug expenses per incidence of cancer patient across the public and private sector was US$7,210 (HK$56,569) in 2012. One course of cancer drugs can cost between HK$100,000 and HK$400,000, depending on whether a patient is treated by a public or private doctor, the same report found. Critics argue that Hong Kong is constricted by outdated laws, dictating that drugs should be pre-approved by both the US Food and Drug Administration (FDA) and the European Union before being approved here. Writing as a supervisor of the 2013 University of Hong Kong study, Professor Thach Thuan-Quoc, suggests that Hong Kong should update its regulations to authorise drugs if they are approved by just one international authority. Meanwhile, Premier Medical Centre’s Dr Yau suggests there is always “room for speeding up” the approval process, but suggests the delay is sometimes the fault of pharmaceutical companies rather than the Hong Kong government. “Most of the drugs are being tested outside of Hong Kong, so ultimately the timeline is being dictated by the drugs companies,” he says. By contrast, there is an “extremely light touch” approach in the private healthcare system, where pharmaceutical companies do not always require FDA approval to distribute their products in the city, the 2016 Swiss Re report details. The government has pledged to address the problem. In June last year, Secretary for Food and Health Professor Sophia Chan, said the HA promised to “facilitate patients’ early access to drug treatments” by “setting up ... risk sharing programmes for specific cancer drugs” with pharmaceutical companies.
然而，對於癌症病人而言，這種 做法很有問題。張超雄表示，抗癌 藥物通常發展速度比較快，而且價 錢比一般藥物貴，醫管局就常常把 貴價的標靶治療和免疫治療排除在 資助系統之外，而列為自費藥物。 「我們的政府總是在逃避責任，而 讓市民自己想辦法。他們的態度就 像是：如果你有問題，就去市場上 找解決辦法，不要來找我。」他批 評道。 張超雄說，醫管局轄下的醫生可 能會覺得很難向不那麼富裕的病人 建議用貴價的藥物，就算這種藥物 有可能治癒他們的病。「有些醫生 跟我說，他們選擇不告訴病人有貴 價藥，因為他們不認為病人負擔得 起。」他補充道。 香港病人政策連線主席林志釉 說，財務上有餘裕的病人會到私家醫 療機構買藥，使得這些藥物越發成為 有錢人才用得起的「奢侈品」。 他說：「只有在你夠錢的時候，你 才能得到藥物。抗癌藥物是昂貴 的，而且新藥要花很長時間才能進 入香港。」 林志釉指出，雖然政府有些資 助是給買不起某些特定藥物的病人 的，但整體來說，目前的體系意味 著很多香港人即使想獲得最先進的 治療，也會因為價錢的緣故而被排 除在市場之外。「私家醫院是為中 產和有錢人而設的，或者為那些有 醫療保險的人。」他說。
大生意 抗癌藥物是一盤大生意。醫療 資訊公司 IMS Health Holdings 的 一份報告指出，到 2020年，全球在 抗癌藥物上的支出將超過 1,500億 元美金，年度增長速率高達 7. 5%到 10. 5%。 香港每年在抗癌藥物上的支出並 無估算數據，但2016年KPMG的報
告指出，2012年公私立醫院的癌症 病人中，人均抗癌藥物開支是7,210 元美金（約56,569元港幣）。這份 報告也發現，一個療程的抗癌藥物 開銷可在10萬到40萬元港幣之間， 這取決於病人是在公立還是私家醫 院就診。 批評人士認為，香港受到落後 法例的窒礙，這些法例規定，藥物 要先在美國食品藥品監督管理局 （ FDA ）和歐盟取得許可，才能在 香港被批准使用。石國順教授指導 了香港大學於 2013年的研究，他認 為香港應該更新審批藥物的條例， 改為只要求獲得一個國際認可。 丘德芬醫生則指出，政府審批過 程總是「有空間加快」，但延誤有時 是製藥公司而非香港政府的問題。 「大部份藥物測試都是在香港 以外的地方進行的，所以引入進 度最終掌握在製藥公司手上。」他 說。相較之下， 2016年 Swiss Re 的 報告指出，在私營醫療系統，製 藥公司總是毋須獲得美國 FDA的批 准，就可以將藥帶到香港，有關做 法「極度寬鬆」。 政府已經承諾會處理這個問題。 去年6月，食物及衛生局局長陳肇始 說，醫管局已經承諾透過「為指定 的癌症藥物制定風險分擔計劃，幫 助病人及早獲得藥物治療」。 不過，她仍然保持審慎態度， 並補充說：「對於大部份新開發的 癌症治療藥物來說，其臨床有效 性、成本效益和對病人的實際好 處，還需要更多科學證據確認。」 至少在短期來看，香港人不太可能 看到重大的改變。
不斷上升的抗癌成本 在紐約的張毅生醫生相信，隨著 越來越多香港人要治療癌症，在政 府試圖提供資助的同時，公立醫院 的藥費和治療費也會上升。 ARIANA 2019
F E AT U R E 專 題 故 事
But she remained cautious, adding: “More scientific evidence is required to confirm the clinical efficacy and cost-effectiveness of most newly developed drugs for cancer treatment and the actual benefits to patients.” It’s unlikely that Hongkongers will see a significant change, at least in the short-term.
New York’s Chang believes that as more people seek cancer treatments in Hong Kong, the costs of drugs and treatment in public hospitals will increase as the government attempts to foot the bill. Simultaneously, he says, growing numbers of public hospital doctors will be lured by private hospitals, where they can work in relatively comfortable conditions. “This is the issue for the government to solve,” says Chang. One way of doing so, he says, would be to increase the official investment in cancer care at the city’s public hospitals. Currently, the government subsidises about 90 per cent of healthcare treatment costs, accounting for 17.5 per cent of its annual budget. Total healthcare expenditure reached HK$71.2 billion for the 2018-19 budget. Meanwhile the government announced an overall surplus of HK$138 billion in 2018. The government set about 40 per cent of that surplus aside for relief measures and invested a further 40 per cent to promote innovation and technological development. In 2017, Cheung proposed that the government establish “a life-saving drug fund” without financial thresholds that would allocate HK$20 billion to cover up to 10 years of medication for patients suffering from cancer and rare diseases. “Once you set up a separate budget for cancer and rare diseases, then it doesn’t have to compete with other needs,” he says. Lam of HKPV echoes Chang’s concerns. “We are seeing an increasing number of patients with little increase in public hospitals’ resources,” he says. “There is an imbalance of quantity and quality, and [Hong Kong] cannot achieve both.” Hongkongers are feeling the pinch. The latest statistics from the Hong Kong Federation of Insurers, released in 2017, showed that the number of those with private or group medical insurance policies rose to 4.4 million in 2016, compared with 4.1 million the previous year. 102
RISING CANCER COSTS
If their financial situation allows, many residents opt to pay more for their insurance premiums to be able to access private wards, rather than public centres. Premium health insurance, however, remains accessible only to the wealthy; Pacific Prime estimates the average annual cost of international health insurance in Hong Kong was roughly HK$98,00 (US$12,585) on average per year. For Lam, the future looks bleak for the average Hong Kong patient unless the government invests more in its public healthcare system: “The rise in cancer could mean escalation of healthcare costs and thus insurance premiums.” Which bring us back to two very different cancer experiences in Hong Kong. Over the coming months,
ELSEWHERE IN ASIA 環顧亞洲 How does Hong Kong stack up to neighbours like Taiwan and Singapore when it comes to cancer care? 在癌症治療方面，香港比起其亞洲鄰居，如台灣和新加坡，又做得如何？
Tinworth faces more chemotherapy, after which he will have MRI scans to ensure he is cancer-free. But he anticipates there could be further hurdles along the road to recovery. “Cancer is not something which completely disappears,” he says. “It is something you have to embrace as the new normal.” Pong, whose condition continues to escalate, says she has lost hope in the medical system – and any hope of recovery. “Due to the poor time management by the hospital, my treatments have been delayed,” she says. “I thought about seeing a private doctor, but it is so expensive. I have not made any appointments.”
他指出，與此同時，越來越多的公立醫院醫 生會被吸引到私家醫院，因為在那裡工作比較舒 服。「這些都是政府要解決的問題。」張毅生醫 生說。他認為，其中一個解決辦法是在公立醫院 增加對癌症治療的政府投入。 目前，政府資助大約九成的治療費用，有關 開支佔年度財政預算的17.5%。2018至19年度預算 中，醫療開支達到712億元港幣。同時，政府公佈 2018年的整體財政盈餘是1380億元港幣。四成的 盈餘會用於紓困措施，另外四成則會用於推動創 新和科技發展。 2017年，張超雄建議政府建立無財政門檻的 「蒲公英藥物基金」，撥出200億元港幣為癌症和 罕見病病人提供長達10年的藥物。「一旦你為癌 症和罕見病另設預算，就毋須與其他開支需求競 爭。」他說。 香港病人政策連線的林志釉所見略同。他說： 「我們看到病人越來越多，但公立醫院的資源增 加很少。無論是數量還是質素上都存在不平衡， 而（香港）無法兩者兼得。」 香港人已經感到捉襟見肘了。香港保險業聯 會2017年發佈的最新數據顯示，2016年，有個人 或團體醫療保險的人數已經上升到440萬，而前一 年，這個數字只有410萬。 如果財政狀況允許，許多人會選擇支付更多保 費，以確保將來能入住私家病房而非公立醫院。 不過，高保費的醫療保險目前仍然只有富人能夠負 擔。Pacific Prime推算，在香港，國際醫療保險計 劃年均保費為98,000元港幣（約12,585元美金）。 林志釉認為，除非政府向公立醫療系統投入更 多資源，否則普通香港病人的未來只會更糟糕。 「癌症的增加意味著醫療開支和保費的上升。」 這讓我們再次回到在香港患癌的兩種不同遭 遇：未來幾個月，Tinworth還要做幾輪化療，之 後他要做磁力共振掃描，以確保癌細胞已經被徹 底清除。不過，他估計未來康復路上還有很多障 礙。「癌症不會完全消失，你要把癌症當成新常 態。」他說。 情況仍在不斷惡化的龐姐則說，她已經對醫療 系統和康復不抱任何希望。「因為醫院把時間管理 得很差，我的治療已經被延誤。我想過看私家醫 生，但太貴了，我還沒有做任何預約。」她說。
Additional reporting by Cathy Lai
Cathy Lai 補充報導
*Name has been changed to protect identity.
Hong Kong’s public health system is closest to that of Taiwan. Since 1995, about 99.5 per cent of Taiwanese residents have been covered by the national health insurance scheme, meaning they have free access to cancer diagnosis and treatments. About 80 per cent of Taiwanese cancer patients are treated in public hospitals, but they can face lengthy wait times. Private healthcare is also very expensive. Meanwhile, in Singapore, all residents contribute about 10 per cent of their monthly income to a compulsory medical savings scheme called Medisave. When residents get sick, the government subsidises up to 80 per cent of the public hospital bill, while the patient is responsible for covering the remaining 20 per cent. The government has a special scheme, the Medication Assistance Fund, for Singaporeans who cannot afford to pay the subsidised bill. 香港的公立醫療體系與台灣的最相近。從 1995年開始，大約 99.5%的台灣居民都已經加入了全民健康保險計劃，這意味著他們 可以獲得免費的癌症診斷和治療。大約 80%的台灣癌症病人都在公 立醫院就診，但候診時間可以很長。台灣的私營醫療也非常貴。 而在新加坡，所有居民要把月收入的大約 10%投入一個名為 Medisave 的強制保健儲蓄計劃。新加坡居民患病的時候，政府會 資助多達 80%的公立醫院費用，而病人只需要支付餘下的 20%。政 府另設有一個特別的藥物援助基金計劃（ Medication Assistance Fund），以幫助無能力支付餘下帳單的新加坡人。
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THE CANNABIS CONUNDRUM 大麻難題 For many advocates, medical marijuana is the next frontier in cancer treatment. But in Asia, a lack of legislation and research thwarts access. 對於許多倡議者而言，醫用大麻是癌症治療的下一個前沿領域， 但在亞洲，法例和研究的不足成為了取用大麻的障礙。
Words 文 Amruta Byatnal | Graphics 製圖 Fernando Chan
F E AT U R E 專 題 故 事
n Kuala Lumpur, Malaysia, a 29-year-old man was recently sentenced to death for selling cannabis oil to cancer patients. In the courtrooms of Thailand, lawmakers made a decision to legalise medical marijuana. In a laboratory in Australia, naturopaths and oncologists are conducting a major study on the effectiveness of liquid cannabis in the treatment of brain tumours. Medical marijuana has entered mainstream discourse in recent years. But while many Western countries are aligned with regards to its efficacy, its adoption in Asia has been more complicated. Caught in a complex maze of limitations, the psychoactive plant is colliding with legal, religious, scientific and economic factors that have restricted its wider adoption, casting lingering doubts on its acceptance as a medical palliative, let alone a cure. Proponents of the drug’s medicinal properties argue that cannabis is a vital tool when it comes to cancer care and treatment; some oncologists prescribe cannabinoids – the chemical compounds that naturally occur in cannabis – to manage the side effects of chemotherapy, such as pain, nausea and anxiety. Of the 113 cannabinoids secreted by the cannabis flower, the most commonly discussed compounds are tetrahydrocannabinol (THC), the principal psychoactive ingredient of cannabis, and cannabidiol (CBD). THC is known to prevent nausea, vomiting and loss of appetite caused by chemotherapy, while CBD alleviates pain. Cannabis has also been successfully used to treat and alleviate the symptoms of Parkinson’s, epilepsy, and multiple sclerosis. Doctors typically recommend ingesting cannabis oils containing a combination of compounds, rather than smoking it, as the effects last longer. Cannabis oils have enjoyed widespread support since the production and distribution of Rick Simpson Oil (RSO), the brainchild of a Canadian medical marijuana activist of the same name. Simpson created the oils – which are similar in structure to full extract cannabis oils, or FECO – in 2003 after he was diagnosed with a form of skin cancer known as basal cell carcinoma. When he applied an ointment containing high levels of THC extracted from the cannabis indica strain to the affected area, Simpson reported himself cured. 106
來西亞吉隆坡，一名29歲 的男子因出售大麻油給癌 症病人而在近日被判處死 刑；在泰國的法庭上，議員們決定 將醫用大麻合法化；在澳洲的一個 實驗室裡，自然療法醫生和腫瘤科 醫生正進行一項重要研究，探討液 體大麻治療腦腫瘤的效用。 近年，醫用大麻已經進入了主流 討論。雖然許多西方國家已經在醫 用大麻的功效上取得共識，但它在 亞洲的應用問題更為複雜。這種精 神致幻型植物受困於該地區錯綜複 雜的種種限制，與法律、宗教、科 學和經濟因素都有衝突。這些因素 使大麻難以更廣泛地應用在醫學範 疇，例如對在紓緩治療可否使用大 麻上至今仍然爭論不休，更別提作 為一種治療藥物了。 倡導者認為，大麻對於癌症治療 和護理有重要作用。有些腫瘤科醫 生會開具大麻素處方，即大麻中含 有的天然化學成分，以控制化療的 副作用，比如疼痛、作嘔和焦慮。 大麻花中含有的113種大麻素 中，最常被討論的是四氫大麻酚 （THC），即大麻的主要致幻元 素，以及大麻二酚（CBD）。THC 已知可防止因化療引起的噁心、嘔吐 和喪失食慾，而CBD則可以減輕痛 楚。大麻也已經成功被用於治療和緩 和柏金遜症、癲癇和多發性硬化症。 醫生們一般會建議服用含有某種成份 組合的大麻油，而不是燃點吸食，因 為前者可讓藥效更持久。 自從里克辛普森油（RSO）開 始生產和發售，大麻油至今已經獲 得廣泛的支持。RSO是加拿大一名 大麻醫用倡議者里克辛普森（Rick Simpson）的主意，產品也以他的名 字命名。辛普森被確診患有基底細 胞癌（一種皮膚癌）之後，在2003 年開發出這些油膏產品，其結構與 「全萃取大麻油」（FECO）相近。
辛普森將含有從印度大麻中提取的 高純度四氫大麻酚的藥膏，塗在自 己患病的皮膚上，之後自稱痊癒。 目前沒有數據證明大麻在減少 癌症病人噁心、嘔吐和喪失食慾 方面的成效如何，最近在《臨床 腫瘤學雜誌》（Journal of Clinical Oncology）上發佈的一份美國腫 瘤科醫生調查指出，「（該國）八 成的腫瘤科醫生曾經與病人討論過 醫用大麻，而近半建議在臨床上應 用。不過，只有不到三成的人確實 認為自己有充份的知識可以作做出 這樣的建議。」 另一群醫生則堅信，像THC和 CBD這樣的大麻素可以讓腫瘤變 小，而且應該在確診早期引入，成 為癌症治療的一部份。澳洲恩帝芙 天然醫藥學院的一個團隊正在對確 診膠質母細胞瘤（一種非常具侵襲 性的腦腫瘤）的病人做有關測試。 然而，在這些醫學行動的周圍， 一張法律和科學的大網正在阻擋大 麻被更廣泛地用於治療亞洲的癌症 病人。馬來西亞覺醒社（Malaysia Awareness Society, MASA）的成員 Yuuki Setsuna說：「癌症病人正在 等待，而且已經準備好接受醫用 大麻。是國家（的法律）在拖慢進 程。」
在馬來西亞反思大麻 Ashfaq*從未想過自己有一天會 使用大麻。這名生活在吉隆坡的42 歲電工去年被確診患有血癌。當他 得悉自己的病已經發展到第三期， 他感到絕望。 開始化療之後，Ashfaq想方設法 減輕自己的身心痛楚。他一個患有 地中海貧血（一種因血紅蛋白製造 異常而引發的血液病）的朋友用過 大麻來減輕疲乏，並建議Ashfaq不 妨一試。
HOW DOES IT WORK? 它是怎樣起效的？ Here’s how cannabinoids bind with our cells to create biological responses. 大麻素如何與我們的細胞結合並引起生物反應？
Cannabinoids, such as THC and CBD, are the chemical compounds in marijuana. 大麻素，比如THC和CBD， 是大麻含有的化學物質。
Once ingested or inhaled, cannabinoids bind with naturally occurring cannabinoid receptors in our body. This stimulates our endocannabinoid system, which controls physiological processes like appetite, pain sensation, and mood. 大麻素一旦透過攝食或吸入進入人體，便會 與我們體內的天然大麻素受體結合，並會刺 激內源性大麻素系統。這個系統控制我們的 食慾、痛感及情緒等生理反應。
The plant has wide therapeutic potential, thought to reduce inflammation, depression, arthritis, epilepsy, and more. Some scientists believe this process can also help to reduce tumour growth and kill cancer cells. 大麻植物被認為具有廣泛的治療潛力，包括減輕炎症、 抑鬱症、關節炎、癲癇等症狀。有科學家認為，大麻植 物有助於抑制腫瘤生長並殺死癌細胞。
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While no figures exist to prove how effectively marijuana reduces nausea, vomiting and loss of appetite in cancer patients, a recent survey of American oncologists published by the Journal of Clinical Oncology states that “80 per cent of the [country’s] oncologists had discussed medical marijuana with patients and nearly half recommended use of the agent clinically. And yet, less than 30 per cent actually consider themselves knowledgeable enough to make such recommendations.” Another cohort of doctors strongly believe that cannabinoids like THC and CBD can actually reduce the size of tumours and should be an integral part of cancer treatment earlier on in the diagnosis, and a team at Endeavour College of Natural Health in Australia is currently in the process of testing this on patients diagnosed with glioblastoma multiforme (GBM), a highly aggressive form of brain tumour. But surrounding these medical approaches, a web of legal and scientific challenges is stalling the wider adoption of cannabis as a resource for cancer patients in Asia. As Yuuki Setsuna, an advocate at the Malaysia Awareness Society (MASA), puts it: “People with cancer are waiting and are ready for medical marijuana. It is the [laws in] countries that are slowing things down.”
RETHINKING CANNABIS IN MALAYSIA Ashfaq* never thought he would try cannabis. The 42-year-old electrician, who lives in Kuala Lumpur, was diagnosed with leukemia last year; when he learned that his disease had progressed to stage 3, he felt hopeless. After he started chemotherapy, Ashfaq looked for ways to alleviate his physical and emotional pain. A friend suffering from thalassemia (a blood disorder caused by abnormal hemoglobin production) had used cannabis to reduce fatigue and suggested Ashfaq give it a try. After some initial skepticism, Ashfaq began smoking marijuana and ingesting cannabis oil last May. “The first time I used [marijuana], the smell was so strong. I couldn’t bear it. But I got used to it. Whenever I go for chemotherapy, it seems like I’m losing a bit more of myself. The cannabis helps in dealing with the pain and nausea,” he says. But then Ashfaq lost access. In August 2018, authorities sentenced his supplier, Muhammad Lukman Mohamad, to death for possessing, processing, and distributing marijuana in the form of oils. Lukman admitted to selling cannabis but claimed that his clients were cancer patients who were using it for medicinal purposes. “I tried to get it through other channels, but it’s hard to find a reliable person in Malaysia,” Ashfaq says. That’s because selling cannabis in any form has long been punishable by death in Malaysia (although the policy is currently under government review). According to Lukman’s lawyer, Farhan Maaruf, the reason for 108
經過初期的懷疑之後，Ashfaq從去年5月開始吸食大 麻和服用大麻油。「第一次用的時候，味道非常強烈， 我不能忍受。但我慢慢習慣了。每次我去化療，就像失去 多一點自己。大麻可以幫我減輕痛楚和噁心。」他說。 不過，很快Ashfaq就拿不到大麻了。2018年8月， 當局將他的供應商Muhammad Lukman Mohamad判處死 刑，罪名是持有、製造和分銷大麻油。Lukman承認出 售大麻，但指出他的客戶都是癌症病人，他們用大麻是 出於醫療目的。 「我試過從其他渠道購買，但在馬來西亞很難找到 可靠的人。」Ashfaq說。 這是因為，在馬來西亞，出售任何形式的大麻一向 都會被判處死刑（雖然目前政府正在檢討這一政策）。 Lukman的律師Farhan Maaruf說，嚴刑峻法背後的部份 原因是宗教。馬來西亞大約六成人口是穆斯林，而伊斯 蘭教對所有可令人陶醉興奮的物質都持保守態度。 Lukman的死刑判決在馬來西亞引起強烈反響：馬 來西亞覺醒社一直為Lukman發聲，而一群靠他供應大 麻來減輕苦楚的病人也請願要求釋放Lukman。時至今 日，超過70,000人已經聯署了請願書，使得馬來西亞政 府必須重新檢視此案。 2018年10月，馬來西亞政府宣佈計劃終止死刑。 目前，所有死刑判決都被暫停執行，包括Lukman的判 決。馬來西亞政府也承諾會重新檢視大麻在本地科研、 教育和醫療中的應用。 馬來西亞覺醒社的Setsuna相信，將小規模的藥物 走私，與謀殺、叛國和向國王宣戰等罪行一概而論是 「過時且過分的做法」。她也堅信，大麻醫用應該被 全面合法化。 她解釋道：「大部份馬來西亞人都知道，大麻在其 他國家被廣泛用於醫療。大麻素的好處也已經廣為人 知。Lukman的案件證明，當人們生病，而且現代醫藥 無法治癒他們的時候，他們會去尋找其他解決辦法。 遲早會有更多馬來西亞人要去找其他治療辦法，部份 （情況嚴重的）也會嘗試大麻。」 這意味著，這些人要通過非法渠道獲取大麻，或者 完全放棄馬來西亞的醫療系統，但這並非大多數人能 夠負擔的選擇，Setsuna說。有財力的人可能會去鄰國 泰國。 2018年12月，泰國成為亞洲第二個將醫用大麻合法 化的國家，緊隨在2018年11月作此決定的南韓。根據泰 國對其毒品條例的修訂，大麻不再被列為第五類致幻毒 品（即「任何可以引起生理或心理反應的化學品或物 品」）。現在，在醫生的管制下，大麻可以被用於醫療 研究和治療。
探索新療法 在馬來西亞和泰國等國與自身的法律纏鬥之際， 澳洲的研究人員已經開始挑戰該領域最燙手的一個問 題：醫用大麻可以治療癌症嗎？ 2015年，澳洲布里斯本的自然療法醫生Janet Schloss 與知名的神經科醫生Charlie Teo在澳洲結合醫學協會的 研討會上見面之後，便開始萌生該想法。 三年之後，2018年11月，Schloss開始了第二期臨床 試驗，以研究大麻對惡性腦腫瘤，特別是膠質母細胞瘤 的療效。早期研究已經指出，大麻能夠減輕症狀和副作 用，但這項特別測試將探索大麻作為標準化療、放射性 治療和手術的輔助療法的效用。 Schloss說：「在醫用大麻已經合法化的國家，腫瘤 科醫生可以開大麻處方給化療病人，用來減輕他們的噁
the draconian law is, in part, due to religion. Roughly 60 per cent of the population identifies as Muslim, a religion that takes a conservative view of intoxicating substances. The harsh sentence sparked a sharp reaction in the country: MASA has been advocating on Lukman’s behalf, and a group of patients who found relief through cannabis he supplied started a petition calling for his freedom. To date, more than 70,000 people have signed the petition, prompting the Malaysian government to review the case. In October 2018, the government announced plans to end capital punishment. There is currently a moratorium on all death sentences, including Muhammad Lukman’s, in the interim. The Malaysian government has also promised to re-examine the use of cannabis in the context of local research, education, and medication. Setsuna of MASA believes that equating small-scale drug trafficking with crimes such as murder, treason, and waging war against the king is
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an “outdated and extreme step.” She is also of the firm belief that medical marijuana should be fully legalised. “Most Malaysians understand that cannabis is widely used as medicine in other countries. There is a lot of awareness of the benefits from cannabinoids,” she explains. “Lukman’s case is proof that when people fall sick and modern medicine seems to fail, they will look for alternatives. Sooner or later more Malaysians are going to try to find [alternative] cures. Some [in dire situations] will try cannabis.” That might mean seeking out cannabis through illegal means or turning away from Malaysia’s medical system altogether – but that’s a move not many people can afford, says Setsuna. Those with financial flexibility might turn to neighbouring Thailand. In December 2018, Thailand became only the second country in Asia to legalise medical marijuana after South Korea legalised it in November 2018. According to a new amendment in Thailand’s Narcotics Act, the drug is no longer considered to be Category 5 narcotic (ie “any form of chemicals or substances which... causes physiological or mental effects”). Cannabis can now be used for the purpose of medical research and care under the control of medical practitioners.
心和痛楚，但不能用於治療癌症。」 她在恩帝芙天然醫藥學院與Teo及其 團隊一起進行的研究，目標正是改變 這一現狀。 該項隨機測試將試驗者和受試驗 者都保持「雙盲」狀態，在測試中， 試驗者會開具兩種不同比例的THC 和CBD給82名癌症病人，每名病人 將接受長達12個星期的治療。研究 結束時，研究人員會對比兩組病人 的狀況，看看不同的藥物組成有甚麼 不同效果。研究中將不使用任何安 慰劑，也就是說兩組病人都不會接受 同樣的假測試以控制主觀偏向。作為 替代，研究會包含一組回溯性對照 組，也就是一組受監測的、沒有使用 該兩種藥物組合的癌症病人。 110
EXPLORING NEW THERAPIES While countries like Malaysia and Thailand grapple with its legality, researchers in Australia have begun testing one of the sector’s most burning questions: Can medical cannabis treat cancer? Dr Janet Schloss, a naturopath in Brisbane, Australia, first began entertaining the idea in 2015 after meeting renowned neurologist Dr Charlie Teo at the Australasian Integrative Medicine Association (AIMA) conference. Three years later, in November 2018, Schloss launched a phase 2 clinical trial to investigate the effects of cannabis on malignant brain tumours, specifically glioblastoma multiforme. Earlier studies had investigated the drug’s ability to reduce symptoms and side effects, but this particular trial explores cannabis’ performance as a companion treatment to standard chemotherapy, radiation, and surgery. “Oncologists can prescribe cannabis for chemotherapy, nausea and pain in countries where medical marijuana is legal, but not for the cancer itself,” says Dr Schloss. Her research, conducted at the Endeavour College of Natural Health in collaboration with Dr Teo and his team, aims to change that.
截至 2019年 3月， 82名病人中的 80人已開始了測試。在 12周治療之 後，病人可以選擇自費繼續使用大 麻。研究團隊會與病人的醫療團隊 合作，繼續每月監測病人情況，為 期最長兩年。如果成功， Schloss 會開始另一個研究測試，以確定在 癌症治療週期中，引入大麻素的最 佳時機。 Schloss 說：「（醫用大麻）對 處於癌症早期的病人比對晚期病人 更好。」另一樣她要研究的東西是 劑量，即哪種比例最有效。「我 們也會監測是只用 THC或 CBD，還 是兩者混合（更有效），以及對於 每一種癌症最有效的比例組合是甚 麼。這需要很多研究。」
未竟之路 用於癌症治療的大麻研究差距， 反映了不同國家和文化的開放程度 差異。在德國、以色列、英國和澳洲 正進行大麻和癌症試驗的同時，其他 國家，比如美國、瑞士和荷蘭，正聚 焦於症狀學和紓緩療法的研究。到 目前為止，探索大麻抑制腫瘤生長和 「治療癌症」功效的研究很少。 因此，研究人員很難得到關於 通用劑量和處方，以及統一規管的 共識。這也意味著，癌症病人的選 擇受限於他所在的國家：在德國， 一個患有多發性硬化症的病人比在 馬來西亞的病人有更多止痛藥物的 選擇。
AROUND THE WORLD 環球應用 Designed as a double-blind, randomised trial, the trial administers two different ratios of THC and CBD to 82 cancer patients, with each patient receiving treatment for a 12-week period. At the end of the study, the researchers will compare the two groups and see whether the drug compounds have had any effects. There is no placebo, meaning neither group has been given an identical dummy treatment to control for bias. Instead, the study’s design incorporates what is called a retrospective control group: a group of monitored cancer patients who are not administered the combination. As of March 2019, 80 of the 82 patients have started the trial. After their 12-week course of treatments, the patients may choose to continue using cannabis at their own cost. The research team will continue to monitor patients each month in conjunction with their standard medical team for up to two years. If successful, Schloss will then begin another research trial to pinpoint the optimal stage to incorporate cannabinoids within the cancer treatment cycle.
即便在大麻研究較為常見的國家，醫藥界的 許多人也傾向於不討論大麻和癌症。由於沒有 普遍的認可，研究員和醫生對於推廣大麻作為 治療癌症藥物都保持質疑態度。其中一名美國 腫瘤科醫生拒絕受訪，並表示：「我認為在這 方面還有很多疑問未解。」 雖然在過去一千年，關於大麻的消遣和治 療使用著述豐富，但其對於大腦和人體神經系 統的全部影響仍然未明。大麻長期被用作致幻 興奮劑，而這種使用方式包含的生理和心理風 險，相關紀錄比較完備，但在醫療領域的臨床 研究則遠沒有那麼清晰。 醫用大麻的問題分為兩部份。首先是用大 麻來代替常用的癌症治療方法，比如化療、放 射性治療或者手術。美國癌症協會已經警告過 病人不要依賴大麻作為唯一的治療方法，逃避 或延誤傳統的治療，因為這可能導致嚴重的健 康問題。
Where is medical marijuana legal? 醫用大麻在哪裡已經合法？
ARGENTINA 阿根廷 AUSTRALIA 澳洲 AUSTRIA 奧地利* BELGIUM 比利時* BERMUDA 百慕大 BRAZIL 巴西** CANADA 加拿大 CHILE 智利 COLOMBIA 哥倫比亞 CROATIA 克羅地亞 CYPRUS 塞浦路斯 CZECH REPUBLIC 捷克 DENMARK 丹麥 ESTONIA 愛沙尼亞 GEORGIA 格魯吉亞 GERMANY 德國 GREECE 希臘 ISRAEL 以色列 ITALY 意大利 JAMAICA 牙買加
LUXEMBOURG 盧森堡 MALTA 馬爾他 NETHERLANDS 荷蘭 NEW ZEALAND 紐西蘭 PERU 秘魯 POLAND 波蘭 PORTUGAL 葡萄牙 SAN MARINO 聖馬力諾 SLOVENIA 斯洛文尼亞* SPAIN 西班牙* SOUTH AFRICA 南非 SWITZERLAND 瑞士 THAILAND 泰國 TURKEY 土耳其* UNITED KINGDOM 英國*** UNITED STATES 美國**** URUGUAY 烏拉圭 VANUATU 瓦努阿圖 ZIMBABWE 津巴布韋 * Cannabis-derived drugs or products 大麻製藥及製品
** Sativex plant-based mouth spray only 只限 Sativex植物製口腔噴霧 *** Only in severe cases (MS and chemotherapy) 只限嚴重個案使用（多發性硬化症和化療）
**** (Legal in 33 states and the District of Columbia) illegal at federal level （在33州及哥倫比亞特區合法） 在聯邦層面仍然非法
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“[Medical marijuana] may be better for people who are less progressed than those who are further along in the disease,” Dr Schloss says. The other thing she’ll look at will be dosage – what type of ratio works most effectively. “We’ll also monitor whether it’s just THC or CBD or their combination [to produce results], and what kind of combination works for each particular type of cancer. That’s where a lot of research is still needed.”
UNANSWERED QUESTIONS The gaps in cannabis research for cancer treatments reflect the varying degrees of openness across countries and cultures. While Germany, Israel, Australia and the UK are currently running trials on cannabis and cancer, others, such as the United States, Switzerland and the Netherlands, have focused their trials on symptomatology and palliative care. Fewer studies thus far have explored the plant’s ability to inhibit tumour growth or “treat cancer.” Because of that, it’s difficult for researchers to reach a general consensus on a universal dosage regime and prescription, and for unified regulations to follow. It also means that as a cancer patient your options are defined and limited by the country that you are in – a multiple sclerosis patient in Germany might have access to more types of pain reduction alternatives than those in Malaysia. Even in countries where research is more common, many in the medical field tend to shy away from discussing cannabis and cancer. Due to the lack of universal recognition, researchers and practitioners are skeptical about appearing as ambassadors for cannabis as a cure. When invited for an interview, one American oncologist declined, responding: “I believe that there are still too many unanswered questions on this topic.” Despite a wealth of literature on the recreational and therapeutic use of the herb throughout millennia, the full extent of its effects on the brain and the body’s nervous system remains unknown. The physical and psychological risks involved in its prolonged use as a psychoactive “high” are relatively well documented, but clinical investigations in the medical setting are less clear-cut. When it comes to medical marijuana, the issues are two-fold. The first concerns the use of cannabis as a replacement for commonly accepted cancer treatments 112
such as chemotherapy, radiation, or surgery; the American Cancer Society has warned against patients “relying on marijuana alone as treatment while avoiding or delaying conventional medical care” as it could lead to “serious health consequences.” The second concerns the potential toxic side effects of the drug, especially in patients with undiagnosed or underlying mental health issues. Paradoxically, many believe that cannabis wards off depression, anxiety disorders, and insomnia. Others view it as a trigger for these very diseases; it is also known to cause paranoia, delusions, disorientation, tachycardia, dry mouth, diminished concentration and motor skills, and increased dependency. In an age when the drug’s potency has exploded as a result of specialised farming and intensive cultivation, these are factors that cannot be ignored. In the absence of clear-cut guidance, patients may turn to unchecked channels. For instance, home remedies or faith healers, neither of which are regulated, provide an array of services like supplying cannabis oil and recommending allied therapies (such as homeopathy), often advertising in online forums such as Facebook. On social media, a number of groups act as resources on the use of CBD and THC in conjunction with chemotherapy, providing unfounded claims and promises of a cure. “There’s a lot of information out there, but there’s no concrete evidence to say what the right type of ratio for this [or that] type of disease is, because each cancer is its own disease,” says Dr Schloss. With few legitimate resources, people are then susceptible to bad information. “Doctors need training, so they know what they are dealing with.” The chemical constitution of cannabis is highly complex, as is the drug’s varied effects on individuals. Until quite recently, marijuana was generally considered to be a drug that people smoked, often with tobacco, a highly carcinogenic substance that causes lung cancer and emphysema. Cannabis smoked pure doesn’t fare much better. But with the introduction of vaporisers, oils, edibles, tinctures, and sprays, credible alternatives now exist that are safer and more palatable for both the mind and body. And perhaps one of the most under-appreciated aspects in this debate is the fact that many patients believe medical marijuana
Additional reporting by Oliver Clasper
* Name has been changed due to potential legal action.
* 基 於潛在法律訴訟，受訪者名字已被更改。
Researchers in Israel experiment with medical marijuana
offers them what they value most when it comes to their illness and treatment: control. Even for the converted, however – from doctors to advocates – it is hard to be sure of how effective the drug really is. “Those who claim they have been cured by cannabis... I don’t know how much of that’s true,” says Kitty Chopaka, a medical marijuana advocate at Highland, a Thai organisation that fought for the change in legislation through public awareness and education. “Legalisation and regulation would mean that these drugs are used the right way [with a prescribed dosage tailored to each case].” With or without legislation, many cancer patients in the region haven’t lost hope. “Even though chemotherapy is supposed to be the ultimate remedy, I hope the day comes when everyone can choose to opt for marijuana along with it,” says Ashfaq. “While we wait for the law to catch up, I wonder if suffering so much when there are ways to reduce the pain is worth it.”
另一個關注點是大麻的潛在毒性副作用風險，尤其 是對於尚未確診或本身就有心理健康問題的病人而言。 矛盾地，許多人相信大麻可以驅走抑鬱、焦慮和失眠。 其他人則認為大麻正正是這些疾病的誘因。大麻也已知 可以引起妄想、幻覺、迷惑、心跳過速、口乾舌燥、注 意力和活動力下降，以及增加依賴等。當處在大麻的效 力在專業化種植和密集耕作下大爆發的時代，這些因素 是不能被忽略的。 在缺乏清晰的指引下，病人可能會轉向一些未經審 查檢定的渠道，比如家庭秘方或者信仰治療。這兩者 都是不受規管的，但可以提供大量的服務，比如提供 大麻油或者建議聯合治療（如順勢療法），而這些服 務往往可以在 Facebook等網絡平台上賣廣告。 在社交媒體上，許多群組可以提供與化療一同使 用的CBD和THC資源，它們可能作出一些失實的聲稱 或治癒承諾。「坊間充斥著許多資料，但沒有具體證 據說明對於這種或那種疾病而言，怎樣的比例才是對 的，因為每種癌症都不一樣。」Schloss說。由於合法的 資源不足，人們往往易受錯誤信息的影響。「醫生需 要訓練，這樣他們才能知道他們在處理的是甚麼。」 大麻的化學組成非常複雜，它在不同個體身上產生 的多種效用亦然。直到近前，大麻一直被廣泛視為人 們點燃吸食的一種毒品，通常和煙草一同吸食，而後 者是可能導致肺癌和肺氣腫的高度致癌物。單單吸食 大麻也沒有好到哪裡去。但隨著霧化器、精油、食用 物、酊劑和噴霧的引入，對於身心而言，現在都有了 更安全和可口的可靠選項。而在這場大辯論中，其中 一個最被忽視的面向是，許多病人相信醫用大麻可以 在他們患病期間給他們帶來最重要的東西：自決。 就算對已經接受大麻的人而言，無論是醫生還是倡 議者，目前仍然很難確定大麻究竟多有效。「那些自 稱被大麻治好了的人……我不知道有多可信。」 Kitty Chopaka說。她是泰國醫用大麻倡議組織 Highland的成 員，該組織致力通過提升公眾意識和教育來推動醫用 大麻合法化。「立法規管就意味人們會以正確的方式 （針對每一個病人的狀況開具處方）使用這些藥。」 無論有沒有相關法例，亞洲的許多癌症病人仍然抱 有希望。 Ashfaq說：「就算化療是最終手段，我希望 終有一天每個人都可以選擇同時使用大麻。當我們等 待法律跟上的時候，我也會困惑，現在明明有辦法可 以減輕痛楚，那吃的這些苦是不是值得呢？」
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LOSING MY MOTHER 喪母之痛 Our journey to find a cure for terminal brain cancer and how everything that could go wrong, did. 在我們尋找晚期腦癌療法的路途上， 一切可能出錯的地方都出錯了。
Words 文 Mariana César de Sá Photos 攝影 Yankov Wong
t was a Sunday morning. I watched our last sunrise while lying next to her on a hospital bed. Her oxygen levels plummeted, her heart rate slowed, and her breathing softened. Half an hour later, our doctor declared the time of death: 7.35am. Just a week ago, we thought she was making progress. But then, last Thursday, she fell into a deep coma. Her arms and legs had become unresponsive. Then the death rattle started – a gurgling sound that erupted from deep within her throat. Our doctor at the University Hospital in Macao told us there were three possibilities for the sudden change in her condition: 1. Tumour progression 2. Bleeding 3. Infection. Following a scan, we had the answer. I sat with two sets of scans in front of me: one from 8 February 2019, the other from 21 December 2018. Her two tumours had merged, consuming her entire brain and rendering all three ventricles completely “obliterated”, according to our doctor. In addition, there was heavy bleeding. Our doctor told my brother and I that she had days left, and encouraged us to make her as comfortable as possible. We ceased medication, both the hospital’s and our own stash. We called our relatives and told them this was the end. Within a few hours, all of them had started arriving the hospital. That night, she was administered morphine intravenously, to relieve any pain she may have been feeling. On Saturday evening, we watched her heart rate jump from 70 bpm to 145 bpm. Our doctor explained: “During the last few hours, the heart works very hard, pumping as much and as fast as it can before it crashes.” Throughout the night, I lay next to her. My brother was on the sofa and her caretaker held onto her feet, which were covered in purple and black patches due to a lack of oxygen and circulation. In that last hour before she left us, her oxygen levels were undetectable. Her heart rate dropped to 50, 40, 30 bpm... then her breathing stopped. Her eyes opened slightly, then rolled back. Her body released and relaxed. My brother and I looked at each other, raw and broken. It’s impossible to adequately describe that
是一個星期天的早上。我躺 在病床上的她身邊，看了我 倆最後一次同看的日出。她的血氧 水平暴跌，心跳放緩，呼吸越來越 弱。半個小時之後，我們的醫生宣 佈死亡時間：早上7點35分。 不過一個星期前，我們還以為她 有好轉，但那之後，上個星期四， 她陷入深度昏迷。她的手臂和雙腿 失去知覺。而後臨終喉鳴出現── 她的喉嚨深處發出咕嚕聲。我們在 澳門科大醫院的醫生說，她的狀況 可能有三個突變方向：一、腫瘤變 大；二、出血；三、感染。 不久後，我們就得到了答案。 我面前放了兩份掃描結果，一份來 自2019年2月8日，另一份來自2018 年12月21日。我們的醫生說，她的 兩個腫瘤合併了，吞噬了她整個腦 部，並讓三個腦室完全「消失」。 此外，還有嚴重的出血。 醫生告訴我哥哥和我，她還有幾 日時間，並鼓勵我們讓她盡可能過 得舒服。我們停止了用藥，醫院的 和我們私藏的，都停了。 我們打電話給親戚，告訴他們， 她快要不行了。幾個小時之內，親 戚們陸續抵達醫院。那夜，她接受 了嗎啡靜脈注射，以減輕痛楚。 星期六傍晚，我們看著她的心跳 從每分鐘70次上升到145次。我們的 醫生解釋道：「在最後幾個小時， 心臟會非常奮力工作，在癱瘓前盡 可能多而快地跳動。」 那一整晚，我都躺在她身邊。 我哥哥躺在沙發上，她的看護員則 緊握著她的腳。由於缺氧和循環不 暢，她的腳上佈滿瘀青。 在她離開我們前的最後一個小 時，她的血氧量低到無法檢測。她 的心跳跌到每分鐘50、40、30…… 之後她的呼吸停了。她的眼睛微微 張開，然後翻白。她的身體徹底放 鬆，如釋重負了。
我和哥哥看著彼此，悲痛，破 碎。那種感覺難以言喻。一言不發 地，我們按下了紅色的呼叫按鈕。 我們的醫生很冷靜地做了心電圖， 那是宣佈一個人死亡前的標準程 序。然後他說出了那些話。 沒有人幫我們準備過。沒有人幫 我們準備過面對自己母親的死亡。
大掩飾 我們的姨婆驚慌地打電話來： 「你媽媽怎麼了？她怎麼樣了？她 在哪裡？」 「你在說甚麼？」我說，我不 知道她在擔心甚麼。那通電話來得 毫無先兆，而當時我正在葡萄牙度 假。我一整個早上都沒有聽到關於 媽媽的任何消息。 「她被颱風打中了！」姨婆聲音 顫抖地說。 我掛上電話，便打給我阿姨。她 所知不多，但她確認我媽媽沒有聽 電話。他們趕去她在澳門的家，路 上要努力穿過由倒塌的大樹和被淹 的街道構成的迷宮。 2017年8月23日，颱風「天鴿」 吹襲澳門，我們客廳的落地玻璃窗 被吹破，我媽媽整個人被向後推 倒。她撞到了頭，並失去知覺。當 她的朋友終於趕到時，他們發現她 躺在床上，身下是一大灘血泊。 他們將她送到鏡湖醫院。那裡的 醫生確定她有腦震盪，那是對腦部 的嚴重傷害。 意外後的幾個月裡，媽媽身上出 現了多種後遺症：頭痛、失憶、迷 糊、暈眩、疲倦。醫生說這是正常 的，會隨著時間推移而消失。我們 當時並不知道，這些可能是一種凶 險得多的疾病的症狀：多形性膠質 母細胞瘤（GBM），這是世界上最 惡性的腦癌。 媽媽與這些被認為只是暫時的後 ARIANA 2019
F E AT U R E 專 題 故 事
feeling. Without exchanging a word, we pressed the red call button. Our doctor calmly performed an electrocardiogram – standard protocol to pronounce someone dead – and then said those words. Nobody prepared us for this. Nobody prepared us for the death of our mother.
THE GREAT COVER UP My grandaunt had called me in panic: “What happened to your mum? How is she? Where is she?” “What are you talking about?” I replied, confused by her worried tone. The call came unexpectedly, while I was on holiday in Portugal. I hadn’t heard from my mum all morning. “She was hit by the typhoon!” My grandaunt bleated. I hung up and called my mother’s sister. She didn’t know much, but she confirmed that my mum wasn’t answering her phone. They rushed to her house in Macao, trying to navigate the labyrinth of fallen trees and flooded streets. Typhoon Hato, which hit Macao on 23 August 2017, had shattered the floor-to-ceiling window in our living room and thrust Mum backwards. She hit her head and was knocked unconscious. When her friends finally arrived, they found her in bed, lying in a pool of blood. They rushed her to Kiang Wu Hospital, where doctors confirmed she had a concussion – severe trauma to the brain. For a few months after the accident, Mum developed several side effects: headaches, loss of memory, confusion, dizziness, and fatigue. The doctors said it was normal; it would pass with
遺症一起生活了幾個月。她一度看起來有 所好轉，我們也以為她的一切都會重回正 軌，但2018年8月，一切都偏離了。 一次在銀河酒店的家庭聚會中，她幾 乎整個下午都在酒店泳池旁邊的一間小屋 裡睡覺。她看起來昏昏沉沉，迷迷糊糊， 這一點都不像她。 她一度茫然地對著我的伴侶說：「我 應該在Mariana還是個孩子的時候就帶她來 這裡。」但在我小時候，銀河酒店還不存 在……那一刻，我們覺得有點不對勁。 那個禮拜，我帶媽媽去香港看了一名 普通科醫生，那名醫生也將她的症狀歸因 116
time. Little did we know, these were also symptoms of a much more malicious disease: glioblastoma multiforme (GBM), the most aggressive form of brain cancer. Mum lived with these supposedly temporary side effects for the next few months. At one point, she seemed to improve, and we thought she was back on track. But in August 2018, things veered off course. During a family outing at Galaxy hotel, she spent much of the afternoon sleeping in a cabana near the resort’s wave pool. She seemed lethargic, confused – nothing like herself. At one point, she turned to my partner, dazed, and said: “I should have brought Mariana here when she was a child.” But Galaxy didn’t exist when I was a child... At that moment, we knew something was wrong. That week, I took Mum to a general practitioner in Hong Kong who again attributed her symptoms to the concussion. Dissatisfied, I took her to my naturopath. He noticed that one side of her lip was slightly lower than the other – possibly a sign of a minor stroke. He recommended an MRI as soon as possible. We returned to Macao and scheduled an MRI at Kiang Wu Hospital. Mum emerged from the examination room, more confused than ever. A few hours later, a nurse called us in. As the doctor reviewed the scans, her jaw dropped. It wasn’t a stroke after all; it was a tumour. A big one. “What?!” my mum exclaimed. “A tumour? Me? Are you joking? Impossible.” At first, we didn’t believe it. After all, plenty of our friends have been misdiagnosed in Macao. This must be another such case. We left the hospital, making plans to go to Hong Kong for a
於腦震盪。不滿意的我又帶她去見了我的 自然療法醫生。他留意到，她的嘴唇一邊 比另外一邊稍微低一些，這可能是輕度中 風的症狀。他建議我盡快帶她去做磁力共 振掃描（MRI）。 我們回到澳門，在鏡湖醫院預約做 MRI。媽媽從掃描室出來的時候，似乎比 以前更加迷糊。幾個小時之後，一名護士 喚我們進去。醫生講述掃描結果時，媽媽 大驚失色。那終歸不是中風，而是腫瘤， 一個大腫瘤。 「甚麼？！」我媽媽驚呼。「腫瘤？ 我？你是開玩笑嗎？這不可能。」
一開始，我們都不相信。畢竟我們在 澳門的很多朋友都曾經被誤診過。媽媽這 次肯定也是。我們離開了醫院，打算去 香港再做一次「正確的」檢查。回家的路 上，媽媽坐在車子前座，一言不發，茫然 不解，試圖打些電話。 第二天，我們坐船去了香港。24小時之 內，媽媽的迷糊更加嚴重。在坐船途中， 她一度問道：「的士甚麼時候到香港？」 我們入住了香港養和醫院。媽媽在 做另一次MRI的時候，我打電話給朋友 Alice，她的丈夫在2017年因為多形性膠質 母細胞瘤而去世了。
‘proper’ diagnosis. My mum sat in the front seat of the car on the way home, silent, confused, trying to make some calls. The next day, we took the ferry to Hong Kong. Within 24 hours, Mum’s confusion became increasingly obvious. At one point on the ferry journey, she asked: “When is the taxi arriving in Hong Kong?” We checked into Hong Kong Sanatorium & Hospital. While my mum had another MRI, I called my friend Alice, whose husband passed away in 2017 from GBM. While on the phone outside the MRI examination room, I received a text from our general practitioner, Dr Lee: “Need urgent surgery tonite. High grade malignancy.” Missed calls followed. Then another text: “We are preparing. Needs ICU after surgery.” Another missed call. I read these messages to Alice. “Don’t let them bully you into immediate surgery,” she said, suggesting we see the scans first, get a second opinion and then decide. Alice recommended Dr Chang, a renowned alternative oncologist based in New York. Within the next 12 hours, I had emailed him and registered Mum as one of his patients but we didn’t have time to thoroughly consult him. It was all so rushed. One hour later, Dr Ho*, a Hong Kong-based neurosurgeon who consults at Sanatorium, called us into an office to share the prognosis: “12 to 15 months.” I can’t remember much about what we discussed next. He assured us that surgery was the right choice, and it needed to happen as soon as possible. After fruitless calls for second opinions, we scheduled the surgery the next day, fearful of delaying it too long. I spent the night in the hospital with Mum. While she slept,
在 MRI 檢查室外打電話的時候，我 收到我們家庭醫生李俊傑發來的訊息： 「今晚需要做緊急手術。高度惡性。」 我沒有聽接下來的電話。緊接著又一條 信息：「我們在準備。手術之後要入深 切治療部（ ICU ）。」又一個電話沒有 接。 我將這些訊息讀給 Alice 聽。「別讓 他們逼著你立即做手術。」她說。她建 議我們先看掃描結果，再拿另一個獨立 意見，然後才做決定。 Alice 推薦了張 毅生醫生，他是在紐約的知名腫瘤科醫 生。在此後的 12 小時內，我給張毅生醫
I sat on the floor outside her room working on my computer. Earlier that day, Alice had given me one piece of simple but invaluable advice: Record everything. Organise all the scans, blood reports, everything, and organise them by date – you’re going to need it. Those reports became my bible for the next six months. I spent the rest of the night researching doctors and making calls – I was shaking. I called doctors from prestigious universities and hospitals in the US with glioblastoma experience. To my surprise, everyone was happy to talk to me – they expressed more emotion over the phone than our neurosurgeons ever did in Hong Kong.
FRIDAY, 10 AUGUST 2018 The next morning, we prepared for surgery. Mum was aware that the doctors had to remove something from her brain – but she didn’t know that she might only have 12–15 months left to live. She didn’t know she had glioblastoma multiforme. My brother and I made a difficult decision to wait until after the surgery to tell her. We were scared: How do you tell anyone, let alone your mother, that she only has months left to live? That there is no cure for her cancer? Would she give up hope and stop fighting? A few hours before the surgery, Dr Ho came by and stuck fiducial markers – used to help with MRI navigation – across Mum’s forehead. Curious, she wanted to see what she looked like, so my brother and I supported her while she walked to the bathroom mirror. We took a few photos together, photos that we will forever cherish. She was still herself then – confused, but still our beautiful, compassionate and determined Mum.
生發了電郵，並幫我媽媽登記做了他的 病人，但我們沒有足夠時間認真地諮詢 他的意見。一切都非常匆忙。 一個小時後，養和醫院的顧問、神經 外科醫生何醫生*將我叫進一個辦公室， 並告訴我他的估計：「還有 12 到 15 個月 吧。」 我不太記得接下來我們討論了甚麼。 他向我們保證，手術是正確的選擇， 但要盡快。我們試圖打電話問另一個意 見，但沒有結果。之後，我們決定翌日 做手術， 因為擔心拖得太久。 那晚我留在醫院陪媽媽。她睡覺的時
候，我坐在她房間外的地板上，敲著自 己的電腦。那天較早時候， Alice 給了我 一個簡單但重要的建議：記錄一切。安 排好一切掃描、驗血，一切都按日期排 好，你一定會用得到的。此後六個月， 那些報告成為了我的聖經。 那晚餘下的時間，我都在搜索醫生 和打電話。我一直在發抖。我打給在美 國知名大學和醫院有治療多形性膠質母 細胞瘤經驗的醫生。意外的是，人人都 樂於和我交談，他們在電話裡表達的感 情，比在香港的任何一個神經外科醫生 都要多。 ARIANA 2019
F E AT U R E 專 題 故 事
Mum was in the operating theatre with two neurosurgeons for six hours. I was terrified but hopeful. At 7.41pm, I received a text from our GP, who was our main point of contact at Sanatorium: “OT finished, smooth, mum in recovery.” He added that our main neurosurgeon had removed about 80 per cent of the tumour, though later, Dr Leong*, the assisting neurosurgeon, said only about 50–60 per cent had been removed. The doctors’ inconsistency alarmed us. We rushed to see her in the ICU, where her head was wrapped in white bandages. With her eyes wide open, she muttered something we couldn’t understand. She looked scared. The next day, Dr Leong assured us the surgery had gone well and drew a picture of the tumour that had been excised. Then he said something unexpected: “six to eight months.” That was half the time we’d heard just yesterday. Over the next few hours, Mum’s condition faltered. Dr Leong ordered a CT scan and promised they would continue monitoring her. On Sunday, her haemoglobin levels dropped, which meant she needed a blood transfusion. She was unresponsive and yet the doctors seemed blasé. Why weren’t they concerned? I emailed Dr Chang in New York at 11.29am (11.29pm his time) with the blood reports, operation record and scans. At 11.37am, he replied. He had reviewed the reports and was free to discuss. This was one of the things I grew to really appreciate about Dr Chang. Even though he was based in New York, he responded to my questions quicker than any of our Hong Kong-based doctors. After reviewing the report, he said it looked like a “botched surgery” due to a lot of bleeding. He was surprised that our surgeons hadn’t mentioned it. I was more than surprised; I was livid. On Monday, we confronted Dr Leong, who said that while removing the tumour, something had looked “really abnormal.” But he didn’t mention the bleeding. He ordered another CT scan. I emailed the reports to Dr Chang. “Scan confirms what I suspected from earlier,” he replied. “She had extensive bleeding into the brain as part of the surgery, as well as fluid accumulation.” He said that if her condition persisted, “here [in the US], we usually perform a shunt.” That was the first time I’d heard this word. 118
2018年8月10日，星期五 第二天早上，我們準備做手術。 媽媽知道，醫生必須從她腦中移除一 些東西，但她不知道自己可能只剩12 到15個月可活。她不知道自己患上了 多形性膠質母細胞瘤。 我和哥哥做了一個艱難的決定， 那就是等到手術之後才跟媽媽坦白 一切。我們很害怕：你怎麼跟任何一 個人說，她的生命只剩下幾個月？而 她的癌症無藥可救？更不必說那是你 媽媽了。她會不會因此而絕望和放 棄搏鬥？ 手術前幾個小時，何醫生在媽媽 的前額上貼上定位標記，那是用來幫 助MRI定位的。媽媽好奇地想知道自 己的模樣，於是我和哥哥扶她去洗手 間的鏡子前。我們一起拍了幾張我們 將永世珍藏的照片。她那時候還有自 我意識，雖然迷糊，但仍然是我們美 麗、慈悲和意志堅定的媽媽。 媽媽和兩名神經外科醫生在手術 室裡待了六個小時。我很擔心，但也 滿懷希望。晚上7點41分，我收到家 庭醫生的短訊，他是我們在養和的主 要聯絡人：「OT完成，順利，媽媽 在康復。」他還說，主刀的神經外 科醫生移除了大約八成的腫瘤，但 之後，助理手術的神經外科醫生梁醫 生*說，只有五六成的腫瘤被移除。 醫生們的說法不一讓我們警覺。 我們趕去ICU見她，她的頭上纏 著白色繃帶。她睜圓了眼睛，咕噥了 一些我們不明白的話。她看起來驚 駭不已。 第二天，梁醫生向我們保證，手 術很順利，並畫了一幅圖，展示被切 除的腫瘤。隨後他說了一句我們意想 不到的話：「六到八個月吧。」這 比我們昨天才聽到的少了一半。 之後幾個小時，媽媽的狀況變 壞。梁醫生指示照電腦掃描（CT）， 並保證會繼續監察媽媽的狀況。 星期日，她的血紅蛋白水平下跌，
這意味著她需要輸血。她反應遲 鈍，但醫生們看起來無動於衷。他 們為甚麼不緊張？ 我在早上11點29分（紐約時間晚 上11點29分）發電郵給在紐約的張毅 生醫生，並附上媽媽的血液報告、手 術紀錄和掃描結果。11點37分，他回 覆了。他看了報告，而且表示有時間 可以討論。這是其中一件我非常感激 張毅生醫生的事。雖然他在紐約，但 他回覆我問題的速度比所有在香港的 醫生都快。 看過報告之後，他說，那看起來 像是一次「拙劣的手術」，因為出血 量很大。他很驚訝我們的醫生完全沒 有提到這一點。我不只是驚訝，我簡 直震怒。 星期一，我們直接去找梁醫生， 他說，雖然腫瘤被移除了，但有些東 西看起來「很不正常」。但他沒有提 到出血。他指示多做一次CT掃描。 我再次將報告電郵給張毅生醫生。 「掃描確證了我之前的懷疑。她 有大面積出血，部份是手術的原因， 還有累積的體液。」他回覆道。他說 如果狀況持續，「在這裡（美國）我 們通常會做分流。」 那是我第一次聽到那個詞。
併發大亂 8月14日，我們在香港的醫生將 媽媽轉移到觀察病房。他們再次指 示做CT掃描。這個時候，她已經無 法說話，她的心跳跌到最低每分鐘 40下。 醫生們說媽媽有腦積水，也就 是大腦內有過量的液體積聚，造 成壓力。他們試圖做腦室外引流 （EVD），這是尋找最佳腦壓的暫 時辦法。一開始，那似乎是有效的。 他們開始綁住媽媽的手腕，防 止她拉扯EVD或者餵食的導管。那 是那幾個月裡面最讓我痛苦的事之 一。每個早上，我去醫院探望她的
CHAOS AND COMPLICATIONS On 14 August, our Hong Kong doctors moved Mum to the observation bay. They ordered another CT scan. By this time, she couldn’t speak, and her heart rate dropped to as low as 40 bpm. The doctors said Mum had developed hydrocephalus, a condition where excess fluid builds up in the brain and causes pressure. They tried an External Ventricular Drain (EVD) – a temporary solution to find the optimum brain pressure – and, at first, it seemed to work. By this time, they had started putting restraints on her wrists to keep her from pulling out the EVD or feeding tube. That was one of the most painful things for me during those few months. Every morning when I arrived to see her, I’d take off the restraints. I hated them. Mum finally looked calmer. She regained some movement and started talking, albeit softly. A few days later, she was quietly singing, “On Top of the World” by the Carpenters with her best friend. She wore a big white shower cap that protected the EVD and covered her partially shaved head. Her face looked less bloated, though her right eye remained halfway shut due to post-surgery swelling. One week after the EVD implant, things were stable and our doctor suggested that they transition into the permanent solution, a non-adjustable shunt (a device that enables fluids to move more easily throughout the body, relieving pressure). We agreed. They implanted the shunt on 26 August. It didn’t go well. Her response levels dropped and, within four days, she looked distressed – her face cramped up, her hand raised to her head, as if to indicate pain. That’s when I sought out yet another opinion. Yankov Wong, a friend and photographer, suggested we reach out to Dr Derek Wong, one of the best neurosurgeons in Hong Kong. Together with my brother and my partner, we met Dr Wong at a Starbucks. We showed him all the scans and the reports. He suggested using a variable (adjustable) shunt, which would give the doctors more flexibility should they need to change the pressure settings. We suggested this to Dr Ho at Sanatorium. He disagreed at first, before changing his mind just before surgery – he even thanked us for the suggestion. They implanted an adjustable shunt, but something
Mum on her 60th birthday 媽媽60歲生日
時候，我都會鬆開那些束縛索帶。 我討厭它們。 媽媽終於看來平靜了一點。她 恢復了一些活動能力，也開始講 話，雖然聲量很小。幾日之後，她 和她最好的朋友一起小聲地唱歌， 唱 Carpenters 的《 On Top of the World 》。她頭上戴著一頂大大的 白色浴帽，用來保護 EVD 的導管， 同時遮住部份被剃光了的頭髮。 她的臉看起來沒有那麼浮腫了， 但她的右眼還是因為手術後的腫脹而 半閉著。EVD植入一個星期之後， 情況穩定下來，我們的醫生建議轉向 永久的解決方案，即不可調整的分流 （這種儀器可以讓液體在身體內流 動得更順暢，從而減壓）。我們同 意了。
他們在 8月 26日植入分流，但 效果不好。她的反應水平下跌， 四日之內，她變得非常痛苦── 臉龐抽搐，她把手抬到頭上，似 乎是想指出痛的地方。 我在那時再去尋找獨立意見。 我的攝影師朋友 Yankov Wong 建 議我們找黃秉康醫生，那是香港最 出名的神經外科醫生之一。我哥哥 和我的伴侶陪著我在一家星巴克和 黃秉康醫生見了面。我們給他看了 所有的掃描和報告，他建議我們用 可調整的分流，這可以讓醫生更靈 活地去調整壓力水平。 我們將這個建議帶給了養和醫 院的何醫生。他一開始不同意， 稍後在手術前忽然改變主意，他 甚至感謝我們提出了這個建議。 ARIANA 2019
F E AT U R E 專 題 故 事
wasn’t right. She was borderline comatose. Wasn’t Mum singing just a few days ago? Days passed and her status remained poor. Dr Ho thought the shunt might be malfunctioning, and told us he wanted to replace it with a new one. We asked Dr Wong’s opinion. He believed we should revert to an EVD until we had a clear picture of the situation. At this point, I was calling him almost every day – on his way to work, on his way home… Dr Wong felt so much like a friend to me that I started calling him Derek. Together with Dr Chang, they became my rock. While all this was happening, our doctors at Sanatorium insisted that we begin radiation treatments as soon as possible. Again, Dr Chang in New York offered conflicting advice. He said it was too premature and potentially dangerous, given her unstable condition – her brain was trying to recover from multiple surgeries. In the end, we didn’t proceed with radiation because it seemed too risky. Between the urgency of her case and the opposing medical opinions, the complexities took an emotional toll on us. Dr Ho replaced the shunt with an EVD on 31 August. The next day, it drained 170ml of fluid from her brain. Strength returned to her hands. She gripped ours tightly, while crying and grunting in pain. She hadn’t been able to speak for days. As the days progressed, her condition remained the same – no major improvements, and she still seemed to be suffering. Dr Chang suggested that she might be experiencing ‘negative pressure’ – uncommon but possible. In that scenario, the doctors would need to manually adjust the pressure of the EVD to below 0 (optimum brain pressure is 8). Our Hong Kong doctors disagreed. Instead, they performed a lumbar puncture in an attempt to confirm her intracranial pressure – they said that the brain and spinal canal usually have the same pressure. The results were wildly different, and they ran out of ideas. That night, Dr Ho sat down with my brother and I. He told us Mum’s brain was no longer “compliant” (meaning, unable to adapt to changes in blood volume, which causes pressure to accumulate). He advised us to prepare ourselves for the worst-case scenario. At that point, we confronted Dr Ho about the first surgery: “Something went wrong, didn’t it?” “Yes,” he responded, without further explanation. That night, we fired our neurosurgeons and contacted Dr Dawson Fong, a neurosurgeon who my brother had consulted for a second opinion before the first surgery. We called at 8pm; he arrived by 10pm. You know that scene in the movies when Superman walks into the room and everyone stops? It felt like that with Dr Fong. The only thing missing was his cape. 120
9 August 2018: MRI scan taken before surgery 2018年8月9日：手術前的磁力共振掃描
He confidently took over the case, bombarding the nurses’ station with questions. Suddenly, we had hope again. Within 12 hours, he discovered the issue. The EVD system was completely blocked. How could both of our neurosurgeons have missed this? He unblocked it and, once the cerebrospinal fluid (CSF) began to drain, Mum could speak again. It turned out she had negative hydrocephalus, just as Dr Chang, thousands of miles away in New York, had said days earlier. Over the next few days, Dr Fong adjusted the pressure slowly to coax her brain back to compliance. Just when we felt we were in the clear, she developed another complication called pneumocephalus (when air gets trapped in the cranial cavity). Dr Fong sat on a chair at the nurses’ station, while I sat next to him on the window ledge. He was astonished. How could there be so many obstacles? Resolving the pneumocephalus became our new priority. A week and a half later, Hong Kong was hit by Typhoon Mangkhut, a Signal 10 and the most intense storm ever recorded in the city. My brother and I watched as the wind uprooted trees, battered nearby buildings, and tossed deck chairs past our window. We moved Mum’s bed away from the glass, then placed headphones in her ears and played her favourite tracks by Norah Jones and Tracy Chapman to mask the sound of the wind. Since her typhoon accident in 2017, thunderstorms and heavy rain made her panic.
21 December 2018: MRI scan showing new tumour
8 February 2019: MRI scan showing tumour progression and bleeding
他們植入了一個可調整的分流裝置， 但還是有點不對勁。她依舊處於昏迷的邊 緣。媽媽不是幾天前才在唱歌嘛？日子一 天天過去，她的狀況還是沒有改善。何醫 生認為分流裝置可能有故障，並告訴我們 他想換個新的。 我們問了黃秉康醫生的意見。他認為 我們應該轉回用 EVD ，直到我們更瞭解 媽媽的狀況。那個時候我幾乎每天都打電 話給他，在他上班的路上，在他回家的路 上……黃秉康醫生就像我的一個朋友，我 開始直呼其名 Derek 。他和張毅生醫生成 為了我的定海神針。 這一切正在發生的時候，養和的醫生 堅持我們要盡快讓媽媽接受放射性治療。 在紐約的張毅生醫生再一次提出相反的 建議。他說，現在做太早，而且可能有危 險，因為她狀態太虛弱，她的大腦正在試 圖從多次手術中恢復過來。 最終我們沒有做放射性治療，因為風 險太大了。身陷在媽媽的危急狀況和相悖 的醫療建議之間，這複雜的處境使我們身 心俱疲。 8月31日，何醫生將分流換回了EVD。
第二天，有170毫升的液體從媽媽的腦部排 出。她的雙手恢復有力。她緊緊地抓著我 們的手，痛苦地哭著咕噥著。她已經很多 天無法講話。日子過去，她狀況依舊，沒 有任何大改善，她看起來仍然痛苦。 張毅生醫生認為她可能正在承受「負 壓」，這不常見，但是有可能的。在那種 情況下，醫生要人工調整 EVD的壓力水平 到負數（最佳腦壓是 8）。 我們在香港的醫生不同意。他們幫媽媽 做了腰椎穿刺，試圖確定她的顱內壓。他 們說，大腦和腰椎的壓力通常是一樣的。 但結果非常不同，他們不知如何是好。 那晚，何醫生與我和哥哥一起坐下來 談。他告訴我們，媽媽的大腦不再「應 答」（也就是無法因應血量改變而調整， 從而導致壓力增加）。他建議我們做好最 壞情況的準備。 到了那刻，我們就第一次手術向他提 出質疑：「出了問題，不是嗎？」 「是的。」他說，但沒有進一步解釋。 那晚，我們炒了我們的神經外科醫生，並 聯絡了另一名神經外科醫生方道生。第一 次手術之前，我哥哥曾經聯絡過他諮詢獨
立意見。我們在晚上8點打電話，他晚上10 點就到了。 你記得電影裡面超人走進房間，人人 都停下來的畫面嗎？方道生醫生進來的時 候就像那樣，只差一件披肩。 他充滿自信地接了媽媽的病歷，到護士 站連珠炮發地問了一大堆問題。忽然之間， 我們再次燃起希望。12個小時之內，他就發 現了問題。EVD系統被堵住了。我們的兩 個神經外科醫生怎麼會遺漏這一點？ 方道生醫生疏通了導管，腦脊液一流 出來的時候，媽媽就能說話了。原來一如 遠在紐約的張毅生醫生數日前所料般，她 真的有負腦積水。爾後幾日，方道生醫 生慢慢調整壓力，引導媽媽的大腦恢復反 應。 就在我們以為重新出現曙光之際，媽 媽出現了另一種併發症，氣腦（即空氣困 在顱腔內）。方道生醫生在護士站的一張 椅子上坐下來，我坐在他身旁的窗邊。他 很驚訝，怎麼會有這麼多阻滯？ 解決氣腦成了我們的新重點。一個半 星期之後，香港受到十號颱風「山竹」吹 襲，那是香港歷史上帶來最大風暴潮的颱 ARIANA 2019
F E AT U R E 專 題 故 事
THE ROAD FORWARD
On 24 September, Dr Fong successfully implanted a variable shunt at the correct pressure. In a period of seven weeks, our beautiful mother had endured six operations: one to remove her tumour, the rest to combat complications. She had no more hair, no strength in her legs. She was on a feeding tube and had lost over 10 kilogrammes – she was bedridden. We lost so much time. But we were finally back on track, focusing on the cancer. Now we had to plan our next moves. Dr Chang coincidentally passed through Hong Kong, so we met at a coffee shop where he drew a circle on a notebook and divided it into four sections: conventional, immune, metabolic and epigenetic. He pointed to the circle and explained that these are the four essential approaches to cancer treatment. Conventional methods include standard care treatments – surgery, radiation and chemotherapy – while immune methods cover treatments that strengthen and work with a patient’s immune system to fight cancer, such as immunotherapy, T-cell therapy and dendritic cell vaccines. Metabolic refers to lifestyle changes designed to affect a person’s metabolism, such as diet changes that starve cancer of glucose, its main source of fuel. Lastly, epigenetics refers to the use of drugs and techniques to alter DNA abnormalities or expressions. If we wanted a chance at beating this disease, we needed to harness medicine and therapies across these segments. The hospital could only offer chemotherapy, radiation and immunotherapy. The rest was up to us. At this stage, radiation was still too dangerous for Mum because the ongoing complications from surgery had caused significant mental impairment. We hoped that we could reconsider it in due time. Following a biopsy, we also ruled out chemotherapy because Mum’s tumour showed a negative presence of an important biomarker called MGMT methylation. Essentially, without the methylation, the cancer cells would repair themselves after chemotherapy. All this time, we still hadn’t had the conversation with her. We were waiting, hoping that she would soon regain the cognitive ability to digest the news.
We soon moved from the Sanatorium observation bay to a private room where Mum needed round-theclock assistance and monitoring – she still didn’t seem to understand what was going on around her. We hired two 12-hour private shift nurses so we’d know she was in safe hands around the clock, since the nurses at Sanatorium only checked on her every few hours. Mum started daily speech therapy and physiotherapy, which seemed to help. She was still on a feeding tube but could interact with us more. As I watched her fight to regain strength, I simply couldn’t make any sense of how and why this had happened. My mother had always been the healthiest person in the family. Just last year, she learned how to make kombucha and had dozens of ‘scoby’ cultures in the fridge (the yeast compound used to aid fermentation). Whenever a guest would come to the house, she would offer them kombucha instead of water.
I thought about the days when she would wake up before sunrise to cook me lunch to take to school. They were different every day, usually a fusion of Chinese and Portuguese cuisines. Her food was so popular, I shared it with my school mates, so Mum started making extra in the morning to ensure I had enough to eat. These memories flashed through my mind as I shopped for organic produce in the mornings. A few weeks ago, I had put her on vegan ketogenic diet, which research has linked to slowed growth of some types of tumours, particularly of the brain. Since she was still on a feeding tube, I prepared vegetable juices and soups, adding MCT oils (medium-chain triglyceride), which enhance ketone production (a type of acid the body produces when starved of carbs, which is said to deprive cancer cells of the glucose they need to grow). On 23 October, she was finally able to eat a cucumber – her first solid food in a long time. Meal time wasn’t easy. She would choke at times, and there were good days and bad days. Sometimes it would take 20 minutes to feed her one meal, other times four hours. Once, when we were alone, I apologised to her. I felt sorry that I wasn’t a great chef like her. She whispered that she would eat anything I made her. I hugged her tightly. I didn’t want to let go. She worked so hard in physical therapy to get better. By the end of October, she could walk with our help. She was smiling and posing for photos, and her hair started growing back, though uneven due to the various surgeries. On 2 November, we scheduled a haircut for her. For me, the haircut symbolised things were returning to normal and it was time to go home. We scheduled an MRI that week to measure the tumour before returning to Macao. Following the scan, our oncologist approached us with a smile on his face. The tumour had changed shape and looked slightly smaller. He said to keep doing whatever we were doing. It was a moment of victory. We didn’t know what, but something was working.
風。我和哥哥看著大風將樹木連根拔 起，重擊附近的建築，並將椅子向我 們的窗戶摔過來。 我們把媽媽的床從玻璃窗邊移 開，然後給她戴上耳機，並給她播 放她最喜歡的Norah Jones和Tracy Chapman的歌，以遮蓋窗外的狂風 呼嘯。自2017年她在颱風中出意外， 風暴和大雨都會讓她很害怕。
前路茫茫 9月24日，方道生醫生成功地植 入正確壓力水平的可調整分流裝置。 七個星期之間，我們漂亮的媽媽接受 了六次手術，一次是移除腫瘤，其餘 都是為了對抗併發症。 她的頭髮都掉光了，雙腿也毫無 力氣。她要依靠餵食導管，體重掉了 超過10公斤。她只能躺在病床上。我 們失去了太多時間。 不過，我們終於重回正軌，可 以專心對抗癌症。現在我們要計劃 未來的行動。張毅生醫生也正好在 這個時候途經香港。我們於是相約 在一間咖啡店見面。他在筆記本上 畫了一個圈，之後分成四個部份： 傳統、免疫、代謝和表徵遺傳。他 指著那個圈並解釋道，這是癌症的 四種主要療法。傳統療法包括標 準的癌症治療手段：手術、放射性 治療和化療；而免疫系統療法包括 加強和調整病人免疫系統以抗擊癌 症的方法，比如免疫療法、 T 細胞 療法和樹突狀細胞疫苗。代謝療法 則會透過調整生活方式來影響一個 人的新陳代謝，比如改變飲食習 慣，不給癌細胞供應它的能量來 源葡萄糖。最後，表徵遺傳療法指 運用藥物和技術去改變 DNA 異常 和表達。 如果我們希望有機會打敗癌症， 我們就要運用這四類藥物和療法。醫 院只能提供化療、放射性療法和免疫 療法，其餘的都要靠我們自己去找。
在這個階段，放射性療法對媽 媽來說太危險了，因為手術後不斷 出現的併發症已經引起了嚴重的精 神傷害。我們希望可以在適當的時 候再考慮這個選項。一次活組織切 片檢查之後，我們也排除了化療的 選擇，因為她腫瘤內的MGMT基因 啟動子被檢驗為未甲基化。沒有甲 基化，腫瘤細胞就會在化療後自行 修復。 這麼長時間以來，我們都無法 跟媽媽討論。我們在等，希望她很 快會恢復意識，並能夠消化連串的 消息。
小小勝利 我們從養和的觀察病房轉到私家 病房，在那裡，媽媽可以得到24小 時看護和監察，而她似乎還未知道 自己發生了甚麼事。我們請了兩名 私家護士，12小時輪班一次，以全 日照顧媽媽，這樣我們才放心，因 為養和的護士每幾個小時才會查看 媽媽一次。 媽媽開始接受每日言語治療和物 理治療，這些看起來都有幫助。她 仍然要依靠餵食導管，但可以和我 們有更多互動。 當我看著她奮力恢復力量的時 候，我完全不能理解這一切都是怎 麼發生的，以及為甚麼會發生。我 的媽媽總是家中最健康的人。就在 去年，她學會了做紅茶菌，並在我 們的冰箱裡培育了幾打紅茶菌母 （用於幫助發酵的酵母組合）。無 論何時家裡來了客人，她都會奉上 紅茶菌，而不是白開水。 我想起她天未亮就起床，給我 煮健康午餐帶回學校的日子。餐盒 內的食物日日不同，通常都融合了 中國菜和葡國菜。她的食物很受歡 迎，我會和我的同學分享，所以媽 媽早上會特別多做一些，以保證我 有足夠的飯菜。 ARIANA 2019
F E AT U R E 專 題 故 事
NOW OR NEVER For GBM patients, it’s common to start treatments as quickly as possible – there is usually no time for trial and error, so most patients try everything to see what works. That was the case with Mum, too. From October through February, our artillery consisted of Escozine, maitake D-Fraction, botanical medicine, vitamin B12, sodium phenylbutyrate, Digest Basic, silymarin Complex, NAC, EGCG, probiotics, curcumin, Brain Memory, Lypo Gold, Valcyte, mebendazole, grape seed extract, vitamin ADK, fish oil, artemisia Annua, RU486, coEnzyme Q10, metformin hydrochloride (extended release), phosphatidylserine, montelukast, lysine, Organo PSP, liposomal Glutathione, arnica, melatonin, triple Magnesium, chloroquine and temozolomide. At one point, she was taking more than 25 drugs a day – some targeted her tumour, specifically, while others supported her immune system, reduced inflammation, blocked or activated major pathways, and so forth. Many of these drugs and supplements weren’t yet approved by the Department of Health so I could only get them in the US, Europe, or India. I travelled to the US, collecting drugs and supplements, and enlisted the help of friends and family, too. Late one evening, I remember looking at all these bottles of pills and supplements, stacked up in my temporary apartment in Happy Valley, and breaking into tears. Despite our tragic circumstances, I felt thankful. I thought of how lucky we were, to be able to afford the medication and to be surrounded by people who love my mum, who were willing to do anything to help us. Our little celebration was cut short by an ever-growing pile of unpaid bills from Sanatorium. Every week, we received a HK$100–200,000 bill from the hospital. Though Mum had the best AIA insurance plan, we could only seek reimbursement after paying up front. When AIA payments took weeks to arrive, things started to get tight. One of the plan’s pre-conditions stated that AIA would pay hospital expenses directly if they were told seven days in advance that you would be admitted to the hospital. For urgent and unpredictable situations, like Mum’s, this policy offered no flexibility. Despite hours fighting with AIA on the phone, we continued paying out of pocket and waited for reimbursements. 124
在我早上購買有機食品的時候， 這些記憶紛至沓來。幾個星期之 前，我開始給她生酮素食。有研究 指出，這種飲食可以減慢某些腫瘤 的生長，尤其是腦部的。 由於她還要靠餵食導管，我準備 了蔬菜汁和湯，裡面混入MCT 油 （中鏈三酸甘油脂油），以加強酮 的產生（酮是身體缺乏碳水化合物 時產生的酸，據稱可以使癌細胞無 法攝入它生長所需的葡萄糖）。 10月23日，她終於能吃黃瓜， 那是很長時間以來她第一次吃固體 食物。進食並不容易，她嗆了好 幾次。有些日子好些，有些日子差 些。有時20分鐘能吃完，有時要四 個小時。 有一次，我倆獨處時，我向她道 歉。我很抱歉，我不像她那麼會做 飯，她小聲說，我做甚麼她都吃。 我緊緊地擁抱了她。我不想放手。 她很努力做物理治療。到10月 底，她可以在我們的協助下走路 了。她會微笑和擺姿勢拍照，她的 頭髮也開始重新長出來，雖然因為 多次手術而疏密不一。11月2日，我 們幫她剪頭髮。對我來說，這意味 著一切開始恢復正常，很快就可以 回家了。 那個禮拜，我們給她安排了一次 MRI 檢查，在返回澳門之前確定一 下腫瘤的狀況。掃描之後，我們的 腫瘤科醫生走過來時面帶微笑。腫 瘤形狀變了，看起來變小了。他說 我們在做的措施，就繼續做吧。 那是勝利的一刻。我們不知道具 體是甚麼，但有些東西確在起作用。
現在或永不 多形性膠質母細胞瘤病人大多都 會盡快展開治療，因為沒有時間去 試驗或者犯錯。所以大部份病人都 會試盡一切可能有效的辦法。我們 媽媽也是如此。
從 10月到 2月，我們的「炮隊」 包括 Escozine 、舞茸 D-fraction 、 植物藥、維他命 B12、苯丁酸鈉、 Digest Basic 、水飛薊素複合物、 N -乙半胱氨酸、表沒食子兒茶素 沒食子酸酯、益生菌、薑黃素、 Brain Memory 、 Lypo Gold 、 纈更昔洛韋片、甲苯咪唑、葡萄籽 提取物、維他命 ADK 、魚油、青蒿 素、美服培酮、輔酶 Q10、鹽酸二 甲雙胍、磷脂絲氨酸、孟魯司特、 離氨酸、 Organo PSP 、穀胱甘、 山金車、褪黑激素、三重鎂、氯喹 和帝盟多。 她一度每日要吃超過 25種藥， 一些是特別針對腫瘤的，其他則 是用於支撐她的免疫系統，減少感 染，阻斷或者活化主要通路等等。 這些藥和補充劑中有不少尚未 得到香港衛生署的批准，所以我只 能從美國、歐洲和印度購買。我親 自去美國買藥和補充劑，或藉助家 人和朋友幫忙。 記得有一個傍晚，我望著這些 堆在我跑馬地的臨時家中的藥瓶， 忍不住哭起來。即便身處悲慘景 況之中，我仍然心懷感激。我想 到我們是多麼的幸運，可以買得起 這些藥，身邊也環繞著愛我媽媽 的人，而這些人願意為幫助我們做 任何事。 我們小小的慶祝被養和不斷發 來的未付賬單打斷了。每個禮拜， 我們都從醫院收到要價 10 萬到 20 萬元港幣的帳單。雖然媽媽買了 AIA 最好的保險，我們只可能先付 後報銷，但 AIA 的保金要幾個禮拜 才能到帳，我們的財政開始變得 緊張。 保險計劃中的一個前提條件 是，如果 AIA 被提前七日告知你要 入院，他們就會直接支付醫藥費給 醫院。然而，對於媽媽這種緊急和 不可預測的狀況，這條條款毫無靈 活度可言。儘管在電話裡和 AIA 爭
We planned to move her back to Macao anyway but, soon, we would have had no other choice. When we finally left Sanatorium hospital on 9 November, three months after Mum’s first surgery, I had an outstanding bill of HK$1.3 million. The hospital blacklisted me until I could pay. That afternoon, my partner picked us up at Sanatorium to drive us back to Macao. My mum was in a wheelchair, so we helped her slide into the front seat. She was confused about the drive at first, but as we crossed the Hong Kong–Macao–Zhuhai Bridge, she calmed down. At one point, she put her hand on my partner’s, who was holding the gear stick – she seemed at peace. Two connected hands, the hands of the two people I love most in this world. We arrived at our apartment to find my brother and two helpers, now caretakers, waiting for us – my brother had spent the week tirelessly preparing the flat for Mum. He padded every corner and added support rails. He even removed all the carpets to prevent slipping. It was perfect. By 12.30am that night, she was sleeping in her own bed, with her own bedsheets and pillows. Home had never felt so good.
THE ROLLERCOASTER BEGINS Towards the end of that first week, Mum seemed to regain some control of her body. By 14 November, she could blow her nose, wash her hands and eat a whole meal. We were so proud of her progress. But then, something changed. One morning, she began staring blankly, eyes wide open. She couldn’t respond. We thought it was an issue with the shunt, so we took her to the ER for another CT scan. We sent the photos of Dr Fong, our neurosurgeon, who said everything looked normal. We went home. Maybe it was the medicine? We stopped all of her drugs but things remained unchanged. We returned to Hong Kong, this time to Baptist Hospital where Dr Derek and Dr Fong both practiced. The hospital administered blood tests, an electroencephalogram (EEG), which measures electrical activity in the brain, and an MRI – all in the same afternoon. Despite all of the activity, Mum seemed sleepy and unaware of her surroundings.
取了幾個小時，我們還是要自己先 付錢，並等待保險公司報銷。 我們反正是計劃將媽媽帶回澳 門的，但很快，我們就別無選擇。 我們在11月9日離開養和醫院，也就 是媽媽接受手術的三個月後，我收 到一張130萬元港幣的帳單。直到我 付清費用之前，養和都會將我的名 字記在黑名單上。 11月9日，我的伴侶來養和接 我們，並開車送我們回澳門。媽媽 坐在輪椅上，我們幫她移入車的前 座。她對於車程一開始感到困惑， 但當我們通過港珠澳大橋的時候， 她開始冷靜下來。 她一度把手放在我伴侶的手 上，而當時他正握著變速桿。她似 乎很平靜。這個世界上我最愛的兩 個人，牽著對方的手。 我們回到家後，我哥哥和兩名 工人（現在他們要負責照顧媽媽） 正等著我們。過去一個禮拜，我 哥哥不眠不休地為媽媽改裝這個 單位。他在每個角落都加了軟墊 和支撐欄杆。他甚至移走了所有的 地毯，以防止媽媽滑倒。一切都很 完美。 那夜凌晨12點半，媽媽在床上 睡覺，躺在自己的床單和枕頭上。 家的感覺從未這樣良好。
變幻莫測 第一週的尾聲，媽媽似乎開始能 夠控制自己的身體。到了11月14日， 她可以擤鼻子、洗手和吃完一整頓 飯。我們對她的進展感到自豪。 但之後變化來了。有一天早上， 她變得目光呆滯，眼睛睜得大大 的。她毫無反應。我們以為是分流 裝置的問題，於是帶她去急症室做 CT掃描。我們把掃描結果發給我們 的神經外科醫生方道生，但他說一 切看起來都很正常。 我們回家了。可能是藥的問
題？我們給她停了所有藥，但甚麼 改變都沒有。 我們回到香港，這次是去浸會 醫院，黃秉康醫生和方道生醫生都 在那裡工作。醫院在同日下午給媽 媽驗了血，做了腦電圖還有MRI。 雖然做了一連串的檢查，但媽媽還 是昏昏欲睡，對周圍沒有反應。 我們很快知道為甚麼：她的腦 子裡長出了另一個腫瘤，就在她的 第三腦室下面。這第二個腫瘤位於 中腦，也就是控制意識的部位。她 的腦電圖結果也確認她有腦病。 這看起來完全不可思議。我們 不是兩週前才做了MRI嗎？進一步 檢查之後，方道生醫生的結論是， 較早時候的掃描不可讀且不可靠， 因為媽媽在掃描機器裡面移動了。 此後兩晚我們都在浸會醫院， 只有我和媽媽。和她一起的時間很 珍貴，雖然很忙，但彌足珍貴。星 期五，我帶著她回澳門家，滿身 疲憊。 我已經好幾個星期沒有好好睡 過覺。我和哥哥輪流在夜裡陪伴媽 媽，每幾個小時就幫她轉身，以防 止褥瘡。現在她有了第二個腫瘤， 我知道我們要趕快行動。我們不斷 搜索關於新藥的資訊，以及諮詢醫 生和臨床研究人員。 11月25日，我電郵張毅生醫 生，標題是「最強武器」。我問他 當下可以推薦的最強藥物是甚麼。 他給了我三個選擇：美服培酮、癌 思停和樹突狀細胞疫苗。我們排除 了疫苗，因為要人幫手打，而這種 疫苗在港澳都沒有。我們要帶媽媽 飛去德國接受注射，但對於現在的 她來說，坐飛機太危險了。 我們選擇了癌思停。許多病人 和家屬都很怕這種藥，因為這常被 稱作「最後一招」。但那就是我們 的最後一招了。 由於癌思停要由醫生做靜脈注 射，我們需要在澳門找一個腫瘤 ARIANA 2019
F E AT U R E 專 題 故 事
We soon learned why: She had another tumour growing in her brain, right below her third ventricle. This second tumour was located in the midbrain, the part of the brain that controls consciousness. Her EEG results also confirmed she had encephalopathy, the medical term for brain damage. It seemed impossible. Hadn’t we just taken an MRI scan two weeks before? After closer inspection, Dr Fong concluded that the earlier scan was unreadable and shaky, because Mum had been moving in the machine. We spent the next two nights at Baptist, just her and me. It was precious to have time alone with her – busy, but precious. On Friday, I took her home to Macao, shattered from exhaustion. I had not slept well in weeks. My brother and I took turns by her side throughout the night, turning her every few hours so that she wouldn’t get bed sores. And now that she had a second tumour, I knew we had to act quickly. We were constantly researching new drugs and talking to doctors and clinical researchers. On 25 November, I sent Dr Chang an email entitled “Strongest Weapon,” asking him to recommend the most potent drugs for Mum. He gave me three options: RU-486, Avastin and the dendritic cell vaccine.
科醫生。一開始，我們考慮去公立 醫院，因為我們可以靠在紐約的張 毅生醫生指導，但最快的預約都要 等一個月。媽媽可能沒有一個月可 以等。 我們轉而選擇了科大醫院。我 在那裡認識了鄭彥銘醫生，他是一 名腫瘤科醫生兼研究者。我向他講 述了最新情況。我對他知識的豐厚 程度感到驚訝。我詳細敘述了媽媽 在用的多種藥物，而他每一種都認 識，並知道它們對於多形性膠質母 細胞瘤的效用。他說，病人面對絕 症的時候，甚麼都要試，只要藥物 不會傷害她，我們就要繼續。 12月17日，鄭彥銘醫生第一次看 我媽媽，並開始為她注射癌思停。 126
We ruled out the dendritic cell vaccine, because it has to be administered in person and isn’t available in Hong Kong or Macao. We would have had to fly Mum to Germany but it was simply too risky to put her on a plane at that stage. We settled on Avastin. Many patients and families are fearful of Avastin, because it’s often referred to as the ‘worst-case-scenario’ drug. But this was our worstcase-scenario. Since Avastin has to be administered intravenously by a physician, we needed a local oncologist in Macao. At first, we considered frequenting the public hospital since we had Dr Chang to guide us from New York, but the next available appointment was a month later. She might not have a month. Instead, we chose MUST Hospital. I met with Dr Gregory Cheng, an oncologist and researcher, and brought him up to speed. I was taken aback by his depth of knowledge. I recounted the various medications she was taking, and he recognised every single drug as well as its potential use for GBM. He said when patients face a terminal disease, you need to try everything and, as long as the medications didn’t hurt her, we could continue.
他親自推她進入治療室，之前沒有 醫生這樣做過。 然而，媽媽的狀況很不好。她 在早上沒有醒來，一直睡到治療結 束。注射完成之後，我們回家，幾 日之後才再去醫院。
充滿光明的聖誕節 從我童年開始，每年聖誕節，媽 媽都會舉辦盛大的派對。朋友和親 戚會來到我們家中，享用她的拿手 好菜咖喱大蝦。她會把家裝飾得漂 漂亮亮，而且總會找人扮成聖誕老 人，在午夜12點開始派禮物。 我們心裡明白，這將是媽媽最 後一個聖誕節了。我希望給她辦個
派對。我們想，就算她只是在房間 裡睡著，她也許還能聽出朋友們的 聲音，或者聞到食物的香味。 這不過是我們一廂情願。12月 21日，媽媽又做了MRI檢查，發現 第二個腫瘤變大了。那一天，科大 醫院成了我們的新家。我們的醫生 說，媽媽只剩下幾日時間。腫瘤現 在的位置特別危險，可以在一瞬間 中止她的呼吸系統運作。 我們當晚簽了一張「不施行心肺 復甦術」的表格。幾日之內，媽媽 又要再次依靠餵食導管，而且整日 昏睡。12月23日，我和阿姨們開始 計劃之後要做的事。我們去了澳門 唯一的殯儀館，選了一口棺材，並 瞭解儀式的安排。
‘ELECTROSMOG’: AN INVISIBLE KILLER? 電磁污染：隱形殺手？ Dr Susan Jamieson, a Hong Kong-based integrative physician who specialises in the effects of electromagnetic fields [EMF] on the body, shares her insights. 專門研究電磁場如何影響人體的香港綜合內科醫生 Susan Jamieson分享她的見解。 Words 文 Chermaine Lee ARIANA: What’s ‘electrosmog'?
subtly organising millions of intricate biochemical
DR SUSAN JAMIESON: ‘Electrosmog’ is a term
and physiological reactions every second. Since
used to describe the insidious effects of radiation
our cells are constantly regenerating, DNA needs
from the electronic devices that surround us. As we
to copy itself. Perfect replication is essential –
can’t see or feel this radiation, it’s hard to believe it’s
anything that causes ‘mistakes’ can lead to cancer.
Disruption of the sensitive ‘calcium gates’ on every cell wall is also potentially dangerous.
A: How is it harmful?
Normally, these ‘gates’ maintain the barrier
SJ: There is increasing evidence from clinical
function of a cell, ensuring that only nutrients enter.
trials that electromagnetic radiation from Wi-Fi,
Disruption makes cells ‘leaky’, allowing toxins to
mobile phones and computers is detrimental to
enter so cells can’t communicate properly.
human health. EMF were classified by the World Health Organisation as a type 2B carcinogen
A: Have there been any studies to support this?
[possibly carcinogenic to humans] in 2011, which
SJ: Yes, several. In 2012, a group of doctors
means that it’s already known to be a factor that can
analysed over 1,000 brain cancer cases, looking
at the association of brain tumours with mobile phones and cordless phones. Their calculations
A: How does EMF interfere with our bodies?
revealed that the use of a mobile phone resulted
SJ: DNA, our genetically inherited blueprint,
in a significantly greater incidence for brain
determines every detail about us. We believe
tumours on the side of the head where the person
that DNA acts like the conductor in an orchestra,
holds the phone.
DR SUSAN JAMIESON：電磁污染是指我們身邊的
生組織定義為2B致癌物，也就是說它是一種已知能誘 發癌症的因素。 A：電磁場怎麼影響我們的身體？
F E AT U R E 專 題 故 事
On 17 December, Dr Cheng saw my mum for the first time and began administering Avastin. He wheeled her into the treatment room himself – no doctor had ever done that before. Mum, however, was not in a good place. She hadn’t woken up that morning and slept through the treatment. After the Avastin infusion, we went home, only to return a few days later.
CHRISTMAS FILLED WITH LIGHT Every year since my childhood, Mum would throw big Christmas parties. Friends and family would descend on our home to enjoy her famous prawn curry. She made the house look beautiful and always enlisted someone to dress up as Santa to distribute gifts when the clock struck midnight. We knew in our hearts this would be her last Christmas, and I wanted to throw a party for her. We thought, even if she was sleeping, she might recognise her friends’ voices or smell the food. It was wishful thinking. On 21 December, she had another MRI scan which revealed that the second tumour had grown. That day, MUST Hospital became our new home. Our doctor told us we had days left. The tumour was now in a particularly precarious position – it could switch off her respiratory system in an instant.
雖然媽媽不能再睜開眼睛或講 話，但她看起來還是很美。她的頭 髮是動人的銀白色，她的皮膚有光 澤。由於她不能吞嚥，我們又回到 給她餵果汁、煲湯的狀態，並將她 所有的藥和補充品搗碎，通過導管 餵給她。 12月24日，我拍了一段我們在 一起的影片。她眼睛閉著，一個字 都說不出來，但她的手握住我的 手，十指緊扣。 作為家中的長女，媽媽總是覺 得對別人要有所擔當，過節或過生 日的時候，她總是會把大家召集起 128
We signed a DNR (do not resuscitate) form that night. Within a few days, she was back on a feeding tube and asleep most of the day. On 23 December, my aunts and I began planning the next steps. We visited Macao’s only funeral home, chose a coffin and learned about arrangements. Although she couldn’t open her eyes or talk anymore, Mum looked beautiful. Her hair was a stunning shade of silver and her skin was glowing. We were back to juicing, making soups, and crushing all the medicine and supplements into the feeding tube since she couldn’t swallow. On 24 December, I took a video of us together. Her eyes were closed, and she couldn’t mutter a word, but her hand found mine and we interlocked fingers. Growing up as the oldest child, Mum always felt responsible for others and she would bring everyone together to celebrate holidays or birthdays. She would go out of her way to help her family, friends, strangers... anyone in need. She had the kindest soul, and everyone in her orbit knew this about her. So now it was our turn to bring the party to Mum, inviting friends and family to her hospital room on Christmas. She couldn’t open her eyes, but we knew from research that her hearing would be the last sense to go. We arranged a small Christmas tree and lights, just as she would have done at home.
來一起慶祝。她會主動幫助家人、 朋友、陌生人……任何有需要的 人。她有最善良的靈魂，而她身邊 所有人都知道這一點。 因此，現在輪到我們這樣做 了。我們要將派對帶到媽媽跟前， 邀請朋友和親戚來到她的病房過聖 誕。她不能睜開眼睛，但我們從研 究報告中知道，她的聽覺會是最後 消失的知覺。我們安排了小小的聖 誕樹和燈飾，就像她在家裡會做的 那樣。 12月25日，我給媽媽穿上去年 她穿過的紅色聖誕禮服，大約20人
來到了她的病房。有晚餐、音樂和 許多愛。我哥哥幾度感覺到媽媽知 道身邊在發生甚麼事。他輕輕打開 她右眼，而那時，我們知道她能看 見。她的瞳孔左右轉動，看著身邊 各人的模樣。這簡直不可思議。她 看起來很快樂，就像被光解救了 一樣。 我們完全不知道她原來還看得 見。如果我哥哥沒有打開她的眼 睛，我們就永遠不會知道她原來一 直在黑暗中掙扎。我們的醫生為甚 麼沒有考慮到這一點？ 三天之後，陽光普照，天空湛
On 25 December, I dressed Mum in the red Christmas dress she had worn the year prior and we welcomed close to 20 people in her hospital room. There was dinner, music, and so much love. At some point, my brother sensed that Mum was aware of what was happening around her. He gently opened her right eye and when he did, we realised that she could see! Her pupil moved from side to side, absorbing the sight of the people around her. It was incredible. She looked happy, as if she had been liberated by the light. We had no idea that she could still see. If my brother hadn’t opened her eye, we would have never known that she was struggling in darkness. Why didn’t our doctors consider this?
Three days later, the sun was shining, the sky was blue and a slight breeze rustled the trees. I was eager to take Mum out of the hospital, even if just for five minutes. We wheeled her down to a small patch of grass by the carpark and stayed there, just soaking up the sun. I stood quietly, taking her in. My beautiful mum, how did this happen? Just a few months ago, we were making dumplings together for your birthday. My mum had worked tirelessly her whole life. She sold insurance, bread machines, and did all sorts of odd jobs over the years to support us. At the end of this year, 2019, she was finally going to retire. Why didn’t she have a little bit more time to enjoy the life she worked so hard to build?
Mum's 60th birthday party with her two children 媽媽和兩個孩子在她的60歲生日派對上
F E AT U R E 專 題 故 事
The next day was my birthday, the last one I’d get to spend with her. I sometimes wish I were religious – maybe then I would believe that she was going to a better place, an everlasting life void of suffering, where we would be reunited one day. But I’m not. What will remain with me are her memories, words, love, strength, kindness, her beauty and her ashes – which sit next to me in an urn as I write this story.
A MOTHER’S STRENGTH And so we waited. We expected her to leave us any day. But she didn’t. On 4 January, Dr Cheng asked to meet. He had been researching new treatment options and wanted to discuss. He presented a few research papers about cancer drugs that had successfully targeted tumours in the CSF. If the drugs could pass through the blood-brain barrier, responsible for making GBM so deadly, then could it work? We started pomalidomide on 7 January. Then our Spooky2 device – a modern version of the Rife machine, which was invented by American microbiologist Royal Raymond Rife in the early 20th century – came in the mail. The machine outputs high sound frequencies, some of which purport to kill cancer-causing microbes and return diseased cells to normal, without harming the patient. Within a few days, we started a second drug called valganciclovir (an antiviral drug) which was used in a Swedish study. The researchers hypothesised that GBM was triggered by viruses – and that valganciclovir could extend the life span of patients. This bottle of 60 anti-viral tablets cost HK$26,000 and was not covered by insurance. Then we started one more drug, Tagrisso, usually used for lung cancer – there had been a few reported cases where it crossed the blood-brain barrier. We gave Mum this new trifecta cocktail and, within a few days, she showed slight signs of improvement. She was smiling, albeit with her eyes closed. She looked peaceful, and that was enough for us. But then a few days later, she started shaking. Her arm would twitch spontaneously, so violently at times 130
that she accidentally hit her own head and we had to hold down her arms. One week later, she started biting her teddy bear, squeezing her eyes and clenching her fists – she was obviously distressed. “What’s wrong? Where does it hurt?” I asked her. Of course, she couldn’t answer. We decided to pause the pomalidomide and try to identify the cause. A month earlier, we thought she had days left. But here she was, still fighting. On 29 January, I flew to New York to pick up more medicine. While there, I met with Dr Chang. He couldn’t hide his surprise that she was still holding on. The day after I got back to Macao, she pulled out her feeding tube. As bad as this was, it was also a good sign. It meant she had regained some strength. Still, her shaking worsened by the day, and she soon developed an infection in her right eye. Her status was slowly deteriorating and, at first, we couldn’t understand why. That’s when she fell into a deep coma and our doctor discovered that the two tumours had merged together. This was the end.
ALWAYS ON MY MIND The night before she passed, I whispered in her ear that it was okay to stop fighting, to let go – we would take care of each other, we would make her proud. There were so many things I wanted to tell her. That we would celebrate her life, that we’d never forget her, that we’d keep her ashes at her beautiful home, her favourite place in the world… but I couldn’t say any of this. It was too difficult, too real. Instead, I lay next to her and held her all night. I wanted to be as close as physically possible. On 10 February, at 7.35am, Mum passed away. A void lodged itself deep in my gut, my lungs, my bones. I felt numb, cold, defeated and withdrawn. That same morning, we had to pull ourselves together for the arrangements. Until a loved one dies, one rarely has cause to consider the complicated logistics and bureaucracy around death. In Macao, before a person can be cremated in Zhuhai (Macao does not have its own crematorium, forcing family
藍，清風輕搖樹枝。我急著帶媽媽 離開醫院，哪怕只有五分鐘。我們 推著她到樓下停車場旁邊的一塊小 草地上，停在那裡曬太陽。我靜靜 站著，擁著她。我美麗的媽媽， 這一切怎麼會發生？只不過幾個月 之前，我們還在為你的生日一起包 餃子。 媽媽一生都在不知疲倦地工 作。她賣保險、賣麵包機、做各種 散工供養我們。她本來打算在2019 年年尾退休。為甚麼她不能有一丁 點兒時間，享受一下她那麼辛勤工 作所換來的生活？ 第二天是我的生日，也是我最 後一個和媽媽一起過的生日。我有 時希望我是有宗教信仰的人，也許 那樣我就能相信，媽媽是去一個更 好的地方，一個沒有苦痛的永生， 而我們終將在那裡重遇。 但我沒有。留給我的是關於她 的記憶、她說的話、她的愛、她的 力量、她的善良、她的美麗和她的 骨灰，在我寫這篇文章的時候，它 們就在我身旁的罈子裡。
母親的力量 我們等。我們想著，她隨時 會走。 但她沒有。 1月4日，鄭彥銘醫生要求見 面。他一直在研究一些新的治療方 法，並希望和我們討論。他給我們 看了幾份癌症藥物研究的論文，這 些藥物都能成功地對準腦脊液中的 腫瘤。如果這些藥可以通過血腦屏 障（多形式膠質母細胞瘤致命的原 因），那麼它是否會有效呢？ 1月7日，我們開始用泊馬度胺。 然後我們的頻率治療機Spooky2快遞 到了。這部機器是美國微生物學家 Royal Raymond Rife在20世紀初期發 明的頻率機的現代版本。它會發出 高頻聲波，部份據稱可以殺死癌症
帶來的微生物，並讓染病細胞恢復 正常，同時不傷害病人。 幾日之後，我們開始用第二種 藥，名叫纈更昔洛韋，一種抗病 毒藥物。這種藥曾被用於瑞典的一 項研究中。研究員假定，多形式 膠質母細胞瘤是由病毒引起的， 而這種藥可以延長病人的壽命。 這種藥一瓶 60 片，要價 26 , 000 元 港幣，而且保險不包。隨後我們 還用了一種藥，泰格莎。這種藥 常被用於治療肺癌，而且有幾個 個案報告稱它可以穿過血腦屏障。 我們給媽媽安排了這種三合一 雞尾酒療法。幾日之後，她有輕微 好轉的跡象。她開始微笑，雖然眼 睛還是閉著。她看起來很平靜，這 對我們來說已經足夠了。但幾日之 後，她開始發抖。她的手臂會不由 自主地扭曲，有時非常厲害，以至 於她會自己打到自己的頭，而我們 必須把她的手臂壓住。 一個星期之後，她開始咬她的 泰迪熊玩偶，擠自己的眼睛，和 緊握雙拳。她很明顯感覺痛苦。 「哪裡不對？哪裡痛？」我問她。 當然，她無法回答。我們決定暫 停用泊馬度胺，並試圖找出原因。 一個月之前，我們以為她只剩 下幾日時間。可是現在她還在， 還在努力對抗癌症。 1 月 29 日，我 飛去紐約拿藥。在那裡，我見了 張毅生醫生。他無法掩飾他對於 媽媽仍然在堅持的驚訝。 回到澳門之後的那天，媽媽拔 走了自己的餵食導管。就算這件 事本身很差，但仍然是個好徵兆。 這意味著她恢復了一點力氣。不 過，她顫抖得愈來愈厲害，而且 右眼很快受到感染。她的狀況正 在慢慢惡化，而一開始我們不明 所以。 就在這時，她陷入深度昏迷。 我們的醫生發現，兩個腫瘤已 合併在一起。這就是盡頭了。
常在我心 媽媽去世前一晚，我在她耳邊 輕輕說，不堅持是可以的，放棄 是可以的，我們會照顧彼此，我 們會讓她引以為傲。 我有那麼多話想跟她說。我想 說我們會頌揚她的生命，我們會 對她永誌不忘，我們會將她的骨 灰保存在她美麗的家中，那是她 在世界上最喜歡的地方……但我 甚麼都說不出口。太難了，太真 實了。我躺在她身邊，一整晚抱 著她。我希望挨著她，越近越好。 2月 10日，上午 7點 35分，媽 媽走了。我的四肢百骸被一種巨 大的空虛佔據。我感到麻木、冰 冷、挫敗和無言。 也是在那個早上，我們需要齊 心合力處理媽媽的身後事。在摯 愛的人離世之前，一個人很少會 主動去考慮關於死亡的複雜安排 和官僚程序。由於澳門沒有自己 的火葬場，家屬和朋友不得不過 境處理，因此在遺體被送去珠海 火化之前，人們必須先在澳門做 一個小型儀式。在儀式上，遺體 會被放在後室裡的一個兼作「床 鋪」的金屬輪床上，而前來參加 儀式的人會聚集在前廳。願意的 話，人們可以在兩個房間之間穿 梭，告別遺體。 媽媽去世六天之後，我們舉行 了這個儀式，這是最早可以辦到 的時間了。依照慣例，媽媽的遺 體被保存在冰冷的、有厚重金屬 趟門的診療室裡，感覺就像一個 凍肉櫃。那天看到她時，我震驚不 已，她看起來完全不像她。她那 麼蒼白、那麼瘦，就像一個陌生 人。我心煩意亂，用帶著前來參 加儀式的一塊白紗蓋著她的臉。 我關掉了房間裡的白色光管，點 起蠟燭。我不想任何人記住我漂 亮的媽媽現在的這個樣子。 ARIANA 2019
F E AT U R E 專 題 故 事
members and friends to make the journey across the border), it is mandatory to hold a small ceremony. At the event, the body of the deceased is placed on a metal gurney, which doubles as a ‘bed’, and kept in a back room, while the gathering takes place in the foyer. People can move between the two rooms and say their last goodbyes, if they wish to do so. We held this ceremony six days after her passing – there was no availability beforehand. As is customary, Mum’s body was kept in a cold, clinical room with heavy metal sliding doors; it felt like a meat locker. Seeing her that day was a shock – she didn’t look like herself. She looked too pale, too skinny, like a stranger. I was so disturbed that I covered her face with a white veil, which I had carried with me for the ceremony. I turned off the room’s white fluorescent lights and lit candles instead. I didn’t want anyone to remember my beautiful mother like that.
After the ceremony and cremation, we celebrated her life at home with family and friends. We were able to bring her ashes home in time for the party – it felt good to have her there with us. I like to think that she was enveloped by the love that filled the room; that she would have liked everyone’s colourful clothes as well as the live band’s renditions of her favourite songs. The sky was grey that day and it was colder than anyone had expected, but the event felt like a total contrast. It was warm and bright, decorated with a jungle of flowers and photos in every corner. I believe this would have made her happy. Our friend Yankov Wong joined us to photograph the event. It was comforting to have him there. He had played a important role in our journey. Before we knew Mum was sick, he photographed her last birthday. Later, at one of our lowest points, he had introduced me to Dr Derek Wong who had suggested the adjustable shunt and EVD that saved her life back in August. Now, Yankov was by our side yet again, capturing the final chapter. Unexpectedly, our Macao oncologist, Dr Cheng surprised us with an appearance at the celebration. He held my arms, looked into my eyes, and said: “Your mum did not want to go, she did not want to go.” It’s been seven weeks since we lost her, and there is not a moment where she isn’t on my mind – I feel guilty when I’m away from home because that’s where she is, and I long to be with her. I’ve been going through her old photo albums, letters and journals, saddened that I’m just now learning so much about her past when she is no longer here to answer my questions. I never knew she was such an avid writer, jotting down her thoughts, quotes and even poems on corners of scrap paper or on the back side of photographs. I never realised just how much she loved flowers either, until I stumbled upon hundreds of newspaper clippings about flower arrangements that she’d been collecting since the early 1990s. I feel heavy with sorrow when I think about all the time we wasted at the beginning, spending weeks dealing with complications instead of treating the cancer. The most valuable thing we have is time – and I’m only now realising it. Looking back, we don’t know if she ever really knew what she had. We never had a chance to explain and we never told her there was no cure. Perhaps this was for the best. Perhaps this way, she didn’t have to face the cruel reality that she was leaving us – her family, her friends, her home, and this world. *Name has been changed.
儀式和火化之後，我們和親人 朋友在家中紀念媽媽。我們正好 趕得及把她的骨灰帶回來參加聚 會。有她和我們一起，感覺比較 好。我喜歡幻想著她被房間中充 盈的愛包裹著，她喜歡大家穿著 五顏六色的衣服，有樂隊在現場 演奏她最喜歡的歌曲。那天的天 空是灰色的，氣溫比大家預想的 都要低，但紀念儀式的氣氛則完 全相反，溫暖而明亮，房間的每 個角落都擺放了鮮花和照片。我 相信這會讓媽媽開心。 我們的朋友 Yankov Wong 那天 也過來幫我們拍照。有他在，讓 我感覺欣慰。我們走來的這一路 上，他意外地扮演了一個重要角 色。在我們知道媽媽患病之前， 他拍攝了媽媽最後一次的生日聚 會。之後，在我們困在最低潮的
時候，他給我們介紹了黃秉康醫 生，後者建議我們做可變調整分 流和 EVF ，而這在 8月時挽救了媽 媽的生命。現在 Yankov 又再次到 我們身邊，記下這最後一章。 意外地，我們在澳門的腫瘤科 醫生鄭彥銘也出現在紀念會上。 他抓著我的雙臂，望著我的雙眼 說：「你媽媽不想走，她不想 走。」 我們已經失去她七個星期了， 但她無時無刻在我的腦海中；我 離開家的時候會感覺內疚，因為 她在那裡，而我渴望和她在一起。 我翻看她舊時的相冊、信件和 日記，直到今日才瞭解媽媽的過 去，而媽媽已經無法回答我的任 何問題，我為此感到傷心。我從 不知道她那麼熱愛寫作，她會用 廢紙的角落甚至在相片的背後，
記下自己的想法、看到的名言， 甚至詩句。我從不知道她那麼愛 花，直到我偶然翻出數百份關於 插花的剪報，那都是她從 90年代 初開始收集的。 一想到我們一開始浪費的時 間，數以週計地處理併發症而非 癌症，我就感到既悲傷又沉重。 我們最寶貴的東西就是時間，而 我到現在才明白。 回顧過去，我們不知道她是否 有一刻確知自己的病。我們從未 有機會向她解釋，我們從未告訴 她這是不治之症。也許這樣是最 好的。也許這樣，她就毋須面對 自己要離開我們——她的家人、 她的朋友、她的家和這個世界—— 的殘酷現實。 *名字經過更改
F E AT U R E 專 題 故 事
DEMYSTIFYING DEATH 「 死 」得 明 白 The emerging ‘death positive’ movement has brought together people from all around the world to discuss grief, fear, and mortality. 正在興起的「正向死亡」運動讓世界各地的人走在一起， 一同討論悲痛、恐懼與死亡。
Words 文 Tanja Wessels | Photography 攝影 Anthony Kwan
lithe woman with long blond hair hands me a small piece of paper. “It’s your death sentence,” she smiles, blue eyes alight with energy. I follow her into a tepee and join a group of women seated on the floor in a circle and unfold my paper. A horrible disease, ovarian cancer. Outside, other women are asking to join the session, which is already at full capacity. I am attending a death cafe session at the annual Garden Gathering, a women-only three-day spiritual retreat on Cheung Chau island that offers wellness, yoga and healing workshops. Leading the ‘cafe’ is Christin Ament, an American doctor who flew in for the event. Ament is also a death doula – a person who assists in the dying process, much like a midwife or doula in the birthing process. She asks us to lie down and begins a guided ‘death meditation.’ “Imagine every limb ‘shutting down,’ or, better yet, ‘dying,’” Ament instructs us. She’s drawing from a Buddhist philosophy that encourages awareness about death, resulting in greater mindfulness in life. Another exercise follows. Taking turns, the group places their hands on the heart of each participant, who has her eyes closed, and guides her towards Ament.
名體態輕盈、留著一頭金色長髮的女人遞給 我一張小紙片。「這是你的死亡判決。」 我跟著她走進一個圓錐形帳篷，加入了一群在地上坐成 一圈的女人，並打開了我的紙片。上面寫著一種可怕 的疾病，卵巢癌。外面還有其他女人要求加入，但已經 滿員了。 我正在參加一年一度Garden Gathering的集會「死 亡咖啡館」。Garden Gathering是一個在長洲舉行、 為期三天的靈修聚會，只限女性參加，聚會期間會有 健身、瑜伽和療癒工作坊。帶領死亡咖啡館集會的是 Christin Ament，她是一名美國醫生，這次特地飛來香 港參與活動。Ament也是一名「死亡導樂」，她會在 人們步向死亡時提供協助，就像助產士或陪產員協助 孕婦分娩一樣。 她讓我們躺下，然後開始引導我們做「死亡冥想」。 「想像你的四肢逐漸『停運』，如果能想像『垂死』更 好。」Ament指引我們。她正引用提升死亡意識的佛家 思想，促使我們對生命更有知覺。 之後是另一項儀式。每個參與者都要輪流閉上眼 睛，讓其他組員把手放在她的心口上，引領她走向 Ament 。死亡導樂會給這名女性一支蠟燭，並將她帶 到外面。在那裡，那名參與者會燒掉她的「死亡判 決」，也就是節目開始前她獲發的那張小紙條，而紙 ARIANA 2019
F E AT U R E 專 題 故 事
The death doula hands the woman a candle and leads her outside. Here, the participant burns her ‘death sentence’ – the sheet of paper she was given at the start of the session – the fictitious diseases ‘dispelled’ into thin air. Back inside the tepee, a smiling Ament looks around the group, patiently waiting for someone to chip at the silence that has descended. This part of the session – the final one – is perhaps the hardest. It’s also the main purpose of a death cafe: to share stories about death, and our experience of it. After a few minutes, a woman speaks about a recent loss. It’s the ice-breaker Ament was expecting. Suddenly, a cascade of grief and relief is unleashed. More people – strangers, really – voice their pain, echoing one another. Tears come fast, as do the stories: the pain of watching loved ones pass away, the paralysing shock of losing a child, the need to reconcile before it's too late. For Ament, such meetings are the first step towards shifting perspectives on death. “Death has historically been accompanied by fear, grief and avoidance,” she says. “The purpose is to demystify it, so that we can become more accepting and aware, and even plan, how
we wish to die and, subsequently, how we wish to live. In doing so, we will hopefully remove the fear around ‘The End.’”
上所寫著的那個虛構的疾病也會在空氣之中「煙消 雲散」。 回到帳篷後，微笑著的Ament環視組員，耐心地等 某個人打破寂靜。這個最後的環節可能是最困難的， 也是舉辦死亡咖啡館的主要目的：分享關於死亡的故 事和我們的經驗。 幾分鐘之後，一名女性說起了自己最近喪親的經 歷。她正是Ament一直期待的破冰者。忽然之間，一 股悲傷和釋懷洶湧而出。儘管彼此素不相識，越來越 多人開始訴說自己的痛苦，並引起共鳴。 淚水來得很快，故事也是：目睹心愛之人死去的揪 心；失去孩子的痛徹心扉；對父母離世的懼怕；有些 話再也來不及說的悲痛。 對於Ament而言，這些聚會是改變人們對死亡看法 的第一步。她說：「死亡在歷史上一直伴隨著恐懼、 悲傷和迴避。我們的目的是讓死亡不再神秘，這樣我 們便可以更好地接受和瞭解，甚至計劃我們想要的死 亡，接著計劃我們想過的人生。我們希望這樣做可以 消除人們對『終結』的恐懼。」
A GLOBAL MOVEMENT Anxiety, fear and even fascination with death are nothing new. It wasn’t until 15 years ago, however, that the first ‘death cafe society’ – a gathering to discuss death – was thought to have been established. Behind the concept was Jon Underwood, a business strategist (and a Buddhist) with a penchant for contemplating the philosophical questions of mortality. Influenced by the so-called cafe mortels, a series of events started in 2004 by Swiss sociologist Bernard Crettaz that sought to break the “tyrannical secrecy” surrounding the topic of death, Underwood held the first death cafe in an east London basement in 2011. Underwood wanted to create a taboo-free environment where people could “drink tea, eat cake and discuss death.” Today, the concept has spawned a global movement, reaching some 64 countries and, to date, over 7,600
關於死亡的焦慮、恐懼甚至幻想並不是甚麼新鮮事， 但據稱第一個「死亡咖啡館協會」在 15 年前才成 立，以舉辦討論死亡的集會。推動這個概念的是 Joe Underwood ，他是一名商人，也是一個佛教徒，嗜 好是研究關於死亡的哲學問題。 瑞士社會學家 Bernard Crettaz 從 2004 年開始組織 了一系列名為「死亡咖啡館」（ Cafe Mortels ）的活 動，試圖打破圍繞死亡話題的「暴君式神秘」。受此 影響， Underwood 在 2011 年於倫敦東部的一個地下 室裡，舉辦了首次死亡咖啡館（ death cafe ）。他希 望創造出一個零禁忌的環境，讓人們可以「喝茶、吃 蛋糕和討論死亡」。 這個概念至今已經演變成一個全球運動，進入了 64 個國家，累計舉行了超過 7 , 600 次聚會。典型的死 亡咖啡館聚會形式是討論小組，而 Ament 帶領的冥想 是為 Garden Gathering 特別設計的。 對於很多人而言，死亡咖啡館只是所謂「正向死亡」
gatherings. The typical format is that of a discussion group, whereas Ament’s meditation-style session was specifically tailored for the Garden Gathering. For many, death cafes are just one element – and the entry point – to the so-called death positive movement, a social and philosophical approach to mortality that, in recent years, has spread from London and Los Angeles to major cities in Asia, including Hong Kong.
DRINK TEA, EAT CAKE, DISCUSS DEATH The death positive movement made its first entrance in Hong Kong about five years ago thanks to end-oflife activist Carmen Yau. After 10 years of working at Families of SMA Charitable Trust, an NGO for people with muscular dystrophy (a condition she too suffers from), Yau was emotionally drained. “I was torn up from watching patients die,” she recalls. “It was breaking my heart. I decided to move in another direction.” An online search led her to discover the death cafe franchise. The informal approach of the gatherings – drinking tea and talking about
運動的一個元素和起點。後者是一套面向人生有限的 社會和哲學方法，並在最近幾年從倫敦和洛杉磯向亞 洲的主要城市蔓延，當中包括香港。
喝茶，吃蛋糕，討論死亡 正向死亡運動大約在五年前登陸香港，而這多虧了善終 倡議者游家敏的引入。在脊髓肌肉萎縮症慈善基金工 作十年之後，同樣受此病症困擾的游家敏已精疲力竭。 她回憶道：「在我目睹病患死亡時，我的心都碎 了。我決定要向另一個方向發展。」 一次網絡搜索讓她發現了死亡咖啡館。這種一邊 喝茶一邊討論死亡的非正式聚會方式引起了她的共 鳴。當她聯絡網站，並提出要將這個概念引入香港的 時候，她湊巧發現，死亡咖啡館的兩名美國成員將到 港參加「當代社會喪親與哀傷國際會議」。這個活動 每三年舉辦一次，旨在讓死亡學的學者、專家及頂尖 醫護人員交流知識；他們還會在香港大學主持一次死 亡咖啡館，作為這次研討會的一個環節。
death – resonated with Yau. When she contacted the website about bringing the concept to Hong Kong, she learned that, coincidentally, two of its US members would be in town to take part in the International Conference on Grief and Bereavement in Contemporary Society (a triennial knowledge-exchange for scholars, leading healthcare professionals and experts in Thanatology, the scientific study of death and associated practices), and host a death cafe session at Hong Kong University as part of the conference. Alongside university staff and NGOs, Yau helped organise Hong Kong’s first death cafe in June 2014, with around 30 participants. Since then, more than 10 death cafes have taken place in various locations around Hong Kong, including art centres, book shops, and coffee shops. Over time a number of individuals have taken up the initiative, including a group of students. For instance, 21-year-old Chuk Ka Lok, a Chinese University of Hong Kong student who goes by Louis, and a group of peers organise death cafes at the Stay Within Bookspace in Chai Wan.
游家敏和大學職員、 NGO 一起，在 2014 年 6 月組 織了香港第一次死亡咖啡館，當時大約有 30 名參加 者。此後，已經有超過 10 次死亡咖啡館活動在香港的 不同地方舉行，包括藝術中心、書店、咖啡店；其間 也有人加入這個倡議行動，包括一群學生。 一個例子是 21 歲的香港中文大學學生祝嘉樂。 他和一班同儕在柴灣的義守書社組織了死亡咖啡館 活動。 祝嘉樂說：「在華人社會，我們不能『講死』， 但這個運動讓我們可以撕掉它的污名。」他同時嘆 息，向最親的人表達心聲往往更難。「我仍然不能告 訴我的父母我正在主持死亡咖啡館。我會這樣講：我 只是在搞一個咖啡館。」 這個聚會的參加者大部份年齡在 31 到 50 歲之間， 而他們多是直接受到死亡影響的人，比如護士、紓緩 治療工作者、照顧者、患有末期病症的人，以及已經 步入人生最後階段的人。 祝嘉樂說：「我們留意到，香港人是通過患病和 住院來瞭解和學習死亡的，但我們希望拓寬關於生 ARIANA 2019
F E AT U R E 專 題 故 事
AN ECO-FRIENDLY ENDING 綠色善終 From low-waste funeral options to biodegradable cardboard coffins, Hong Kongbased eco-funeral provider Forget-Thee-Not offers end of life options for a healthier environment. 為了保護環境，香港綠色殯儀公司「毋忘愛」提供 各種環保的殯儀服務選擇，包括低耗葬禮和可生物 降解紙皮棺材。 Dr. Fan Ning, a surgeon and an environmentalist, is the chairman of Hong Kong-based eco-funeral
provider Forget-Thee-Not, which offers progressive
advice and support for the bereaved, including low-
waste funeral options, personalised cardboard coffins and organ donation. The company also provides
advice and support for the living, from financial advice to family relationship management.
“Having a choice in facing death is very important.
It also demonstrates a kind of autonomy. Meaningful things can be done by the family, even towards the end, such as fulfilling a loved one’s final wish, or
accomplishing a task that they want to do together, rebuilding a relationship, resolving conflicts, finding the friends or relatives they want to engage with
before they lose consciousness,” he says. “It’s about
how you bring joy and reduce loneliness towards the end.”
外科醫生兼環保人士范寧是香港綠色殯儀公司「毋忘愛」的 主席。這家公司為喪親者提供進步的建議和支援，包括低耗 葬禮服務、個人化紙皮棺材和器官捐贈。公司還會為生者提 供包括財務建議和處理家庭關係的支援服務。 他說：「面對死亡，能夠選擇是很重要的。這也是一種 自主的表現。即使面對生命盡頭，家人也可以做有意義的 事，比如完成摯愛的遺願，或者完成他們曾經想一起做的 事，又或重建一段關係、解決一些矛盾，在失去意識之前找 自己的朋友和親戚重聚。這事關你面對人生終結時，如何帶 來快樂和驅走孤獨。」
Learn more 詳情請看 www.forgettheenot.org.hk 138
“In Chinese society, we cannot talk about death. But the movement has allowed me to remove the stigma from it,” says Lok, lamenting the caveat that it’s always more challenging to open up to those closest to you. “I still cannot tell my parents I am hosting a death cafe. I’m just hosting a cafe – I’ll put it that way.” The gatherings consist largely of people aged 31-50. Participants tend to be those who are directly affected by death, such as nurses, palliative care workers, caretakers, people with terminal illnesses, and those in the last stages of their lives. “We observed that Hong Kong people understand and learn about death through sickness and in hospitals, but we want to broaden the story and perspective on life and death,” says Lok. “So we collected some books on war, poverty, mental illness, animals and also the environment, as these topics also offer another way to approach the subject.” The students hope what they discuss during the cafes will stay with the attendees beyond the gatherings. “We share suggestions on how to initiate the conversation at home, with friends and in the workplace,” he adds. “[Hopefully] this will help people to be open-minded, listen to their peers’ ideas and share their feelings. To have a supportive conversation about life and death. Death can create meaning, and death can create bonding.”
EMBRACING DEATH IN ASIA In addition to death cafes, a number of Hong Kong organisations have tailored the death positive movement to engage local audiences through art, music and performance. “I have friends and peers who are running the Death Bookshelf, collecting books related to death,” Yau says. “And [Hong Kong] also hosted Asia’s first Death Festival.” Or, as it’s best known, DEAtHFEST, an event created by Arnold Leung, a registered social worker and fellow in Thanatology. The inaugural festival took place over three days at the Hong Kong Polytechnic University in June 2015, and included 72 workshops spanning sculpture, painting, dance, drama and Chinese painting, with
死的故事和看法。因此我們搜集 了關於戰爭、貧困、心理疾病、 動物和環境的書籍，因為這些題 目可以給我們另一個角度去靠近 死亡。」 祝嘉樂希望，他們在死亡咖啡 館內討論的事可以長留在參加者心 中。他說：「我們會分享在家中、 與朋友和在工作場所開始討論死亡 的方法。（我們希望）這會讓人們 變得更加開明，能夠聆聽同伴的想 法和分享自己的感受，並互相扶 持地就生與死議題展開對話。死亡 可以創造意義，死亡也可以創造 聯結。」
在亞洲擁抱死亡 除了死亡咖啡館，一些香港組織也 通過藝術、音樂和表演，讓本地觀 眾可以參與正向死亡運動。 「我有朋友和同儕正在做『死 亡書架』，他們會搜集關於死亡的 書籍；（香港）也舉辦了亞洲第一 個死亡節。」游家敏說。這個名為 DEAtHFEST的活動，創辦人是註冊 社工、死亡學研究者梁梓敦。 首次死亡節於2015年6月在香港 理工大學舉辦了三日，其間舉行了 72個工作坊，包括雕塑、繪畫、舞 蹈、戲劇和中國畫，有超過30名藝 術家參與。系列講座的題目包括紓 緩治療、喪親及預設醫療指示（一 份有法律效力的文件，列明一個人 在無法自行做決定的時候希望獲得 怎樣的醫療護理）。 梁梓敦：「死亡節在香港推廣生 死教育。我正嘗試讓死亡變得更加 有趣，這就是我將藝術引入討論之 中的原因。」 死亡節中的一個表演節目是 《一屋寶貝》。這個得獎的本地音 樂劇探討生命、死亡和愛。梁梓敦 說，表演鼓勵觀眾更深入地思考死 亡，並因而更敢於討論死亡。 ARIANA 2019
F E AT U R E 專 題 故 事
over 30 artists involved. A series of lectures included topics such as palliative care, bereavement and advance directives (a legal document that outlines a person’s preferred healthcare treatments if they can no longer make decisions for themselves). “DEAtHFEST promotes life and death education in Hong Kong,” Leung explains. “I am trying to make death more interesting. That’s why I bring the arts into the conversation.” For example, the festival featured an awardwinning local musical called The Passage Beyond, a collaboration between Hong Kong Sinfonietta and Actors’ Family, which tells a story about life, death and love. The performance encouraged audiences to think more deeply about death and, consequently, be more open to discussing it, says Leung. 140
“In Hong Kong, many elderly have their funeral preparations in place, but their children refuse to talk to them about it. The elderly can feel confused about this,” says Leung. The proximity to death enables senior citizens to envisage the end of their lives with more immediacy, according to Leung, whereas “youth are generally distant from death. Thinking about it is too scary for them.” In 2018, DEAtHFEST expanded to Kuala Lumpur, Malaysia – taking place in a funeral parlor. Leung’s long-term vision is to have annual events and to take the festival beyond Asia, but finding sponsorship can be challenging. The next edition, funding dependent, will happen in either Taiwan or Singapore, where Leung has tapped into the local death positive community.
at DEAtHFEST 死亡節舞蹈表演
Taiwan, in particular, seems ripe for a festival of this kind. Leung says that the country has been a pioneer in the promotion of life and death education. In the 1990s, Taiwanese scholars returning from the US, where the concept of ‘death education’ has been in development for nearly 40 years, brought the scholastic approach home with them. “In the US and Europe, we can talk about death studies, but in Chinese culture, we talk about ‘life and death’ education. We all know Chinese people don’t like to talk about death, so why did the Taiwanese begin this conversation in the 1990s? Natural disasters, from earthquakes to typhoons, triggered the need to think about death.” Similarly, Hong Kong’s rising interest in the subject relates to societal issues, says Leung. “Hong Kong, much like Singapore, has a rapidly ageing population. This leads people to consider better and more peaceful ways to die and seek alternatives to cold hospital environments. Society is pushing for more conversations around death.”
THE POWER OF CONVERSATION A French author based in Japan, Syv Bruzeau penned Standing Naked in Front of You, a personal narrative about surviving cancer and fibromyalgia (musculoskeletal pain accompanied by fatigue, memory and mood issues). The book tackles taboo subjects like suicide, depression, and the myth of perfect health. Last year, the author travelled to Hong Kong to partake in the Garden Gathering. She heard about Ament’s death cafe and, already familiar with the concept, was curious to experience one in person. “It was a powerful, liberating experience,” she recalls. “My ‘death sentence’ was a type of cancer I actually had a few years ago, so the whole exercise of dying, healing and recovering had a very special meaning to me. “Being able to talk openly frees us from the weight of it. Death becomes less dark and fearful, more like a natural aspect of life. The whole experience is a reflection on both death and life, and that’s highly valuable.” Hong Kong journalist Leila Chan echoes the importance of talking about death. Chan, who has authored several books on ageing and palliative care, has been reporting on end of life care in Hong Kong over the past eight years.
「在香港，許多老人家都已經做了身後事的準備， 但他們的孩子不願意和他們談這件事，老人家會覺得 很困擾。」梁梓敦說。與死亡接近會讓長者更迫切地 想像自己生命終結的情形，而「年輕一輩一般距離死 亡很遠，這讓他們非常害怕去想這件事。」 2018年，死亡節拓展到了馬來西亞吉隆坡，舉行地 點是當地的一個殯儀館。梁梓敦的長遠目標是將死亡 節辦成年度活動，並帶到亞洲各地。不過，尋找贊助 人並不容易。下一個死亡節將於台灣或新加坡舉辦， 視乎資金來源而定，現時梁梓敦已接觸了當地的正向 死亡運動社群。 台灣看起來特別適合舉辦這樣的活動。梁梓敦說， 當地在推廣生死教育方面一直走在前沿。在90年代， 從美國回台的學者就將有關的學術框架帶回了家鄉，而 在當時的美國，死亡教育的概念已經發展了接近40年。 「在美國和歐洲，我們可以討論死亡研究，但在華 人文化中，我們講的是『生死教育』。我們都知道華 人不喜歡討論死亡，那麼台灣人為甚麼會在90年代就 開始討論呢？天災，從地震到颱風，都觸發了思考死 亡的需要。」 同樣地，梁梓敦認為香港對死亡議題的興趣不斷增 長，也與社會因素有關。「香港就像新加坡，人口在 急速老齡化。這讓人們思考更多『好死』的方法，以 尋求在其他地方安眠，而非在冷冰冰的醫院裡去世。 社會正在推動更多有關死亡的討論。」
對話的力量 旅日法國作家Syv Bruzeau在她戰勝了癌症和纖維肌痛 症（伴隨乏力、記憶力和情緒問題的肌肉骨骼痛病症） 後，寫了Standing Naked in Front of You（暫譯：《裸 體站在你面前》）一書自述經歷。這本書挑戰了關於自 殺和抑鬱等禁忌議題，以及完美健康的迷思。 去年，Bruzeau來港參加了Garden Gathering。她聽 說了Ament的死亡咖啡館，熟悉這個概念的她很好奇， 想親自一試。 她回憶道：「那是一次震憾的、解放的體驗。我的 『死亡判決』是一種癌症，而我數年前的確患有這種 癌症，所以整個死亡、治療和復原的體驗對我來說都 有特別的意義。」 「可以公開地討論死亡，讓我們如釋重負。死亡變 得不那麼黑暗和可怕，反而更像是生命的自然部份。 整個體驗是對死和生的反思，而這非常寶貴。」 香港記者陳曉蕾也同意討論死亡的重要性。陳曉蕾 已經寫了幾本有關衰老及紓緩治療的書，過去八年也一 直在報導香港的臨終關懷服務。 ARIANA 2019
F E AT U R E 專 題 故 事
DEATH AND THE DOULA 死亡和導樂 What is a death doula? We speak with Christin Ament, a US-based integrative health practitioner and death doula, about her role in helping people navigate life and death. 「死亡導樂」是甚麼？我們和 Christin Ament（美國整合健康醫生、死亡導樂） 討論了她在幫助人們探索生死時的角色。
ARIANA: How would you describe a death doula?
A: What is the typical experience like?
She sits with the family in vigil, providing emotional, spiritual, and
combing their hair, washing their face, cleaning them up, and giving
physical support – whatever is necessary at the time.
them a bath with anointing oils. Other tasks might include preparing
CHRISTIN AMENT: A death doula is there to help a person pass.
CA: A doula does anything from swabbing their patient’s mouth to
and washing the body and sometimes laying flowers on the person, A: Is there an accrediting body for this profession?
CA: There’s no medical board that certifies. However, there are organisations such as the International End of Life Doula Association
performing a final blessing, and aiding in grief work after the death happens. A doula also attends to all the needs of the family, whether that’s
(INELDA), founded in 2015, that provide training and a certification
prayer, cooking meals, or sitting and talking to somebody in need.
process. This establishes a professional standard for the field.
Then some take it to another level, performing reiki or healing touch [therapy to restore and balance energy] to prepare the body and the
A: Do doulas typically have medical backgrounds?
soul to transition.
people. Because of that, I am able to practice in hospitals,
A: What’s your personal approach?
CA: I am a medical person, but typically doulas are not medical
CA: Personally, talking to the person or having specific music is an
administering medication and so on.
integral part. I will sing to them, and hold their hand, or gently tell
CHRISTIN AMENT: 死亡導樂旨在幫助
些花，做最後的禱告，和協助病人死後的 A: 這個職業是否有專業的認可機構？
Learn more 詳情請看 sacredtransitionsintegrativehealing.com 142
them it is okay to pass.
“We should start talking about it at the dinner table,” she says. “There is so much to think about when it comes to options.” Those options can range from choosing a place to be buried or cremated to refusing treatment altogether, financial challenges, hospice care, and organ donation. When it comes to organ donation, Hong Kong has one of the lowest rates in the world, with only 5.8 donors for every million people in the city, according to a 2016 LEGCO report. That would suggest a total of 42 donors in a city with a daily organ transplant wait list of over 2,000 patients. These are the types of decisions that Chan helps families tackle in her workshops on end-of-life care. “When participants discuss death planning seriously, they realise there are a lot of things [to prepare] that they had not imagined before. Before the workshop, they thought they were very decisive and could just keep everything simple.” Chan’s workshops enable participants to break down the decision-making process, understand the complications, and exchange views with their families. Some participants have expressed interest in attending annual workshops to explore changes in their perspectives and talk more with their loved ones. Clinical psychologist Ginette Cheung, who provides bereavement counselling, agrees that communication is invaluable particularly when it comes to emotions, such as anger, guilt, and grief. “The dying process is a lonely journey. No one exactly understands how the patients feel and what he or she is experiencing” she says. “Many people avoid discussing end of life matters because of fear – of separation, of uncertainty, of being forgotten.” The death positive movement seeks to take the most human of life experiences – death – and bring it out of the cold shadows, into the light of the living. From death meditation in a tepee to cafe meetups around the world, more and more people are talking about death – bringing them closer to loved ones and more accepting of the inevitability of mortality. “We should prepare ourselves for death, so that we are able to live more fully, with more gratitude, ease and less fear and regret,” Bruzeau says. “Death can be beautiful and peaceful.”
We should rehearse our death, so that we are able to live more fully... 我們應該預演自己的 死亡，這樣我們才能活得 更加圓滿。 – Syv Bruzeau, author of Standing
Naked in Front of You 《裸體站在你面前》作者
她說：「我們應該從在飯桌上開始討論。講到選 擇，有太多需要考慮的了。」這些選擇包括土葬或火化 地點，以及是否完全拒絕治療，還有財務上的難關、安 寧療護和器官捐贈等。談到器官捐贈，香港是全球最低 捐贈率的地區之一，2016年一份立法會報告指出，每 100萬人中只有5.8個捐贈者。這也意味著，香港每日有 超過2000名病人在輪候器官，但捐贈者卻只有42名。 陳曉蕾在她的臨終關懷工作坊中幫助參加的家庭討 論這些選擇。「當參加者嚴肅地討論死亡規劃的時候， 他們會發現有很多事要準備，而且都是之前想都沒有想 過的。在工作坊之前，他們以為自己會很果斷，可以簡 單處理一切。」 陳曉蕾的工作坊讓參加者拆分決策過程，瞭解其中 的複雜問題，並與自己的家人交換意見。有參加者亦表 示希望每年都能參加工作坊，探索自己的觀點變化，並 與自己所愛的人繼續討論。 提供喪親諮詢服務的臨床心理學家張貝芝認同在處 理諸如憤怒、內疚和悲傷等情緒時，交流尤為重要。她 說：「垂死過程是一趟孤獨的旅程。沒有人能夠完全明 白病人的感覺，以及他們正在經歷甚麼。許多人會避免 討論死亡，因為怕分離，怕不確定，怕被遺忘。」 正向死亡運動旨在將人人必經之死亡從冰冷的陰影 裡帶到生活的光明中。從在一個帳篷中的死亡冥想，到 全球各地的死亡咖啡館聚會，越來越多人正在探討死 亡，這讓他們與自己的摯愛更加親近，也變得更能接受 生命有限的必然。 「我們應該讓自己準備好去面對死亡，這樣我們才 能活得更加圓滿，更加感恩，更加輕鬆，更少恐懼和悔 恨。」Bruzeau說。「死亡可以美麗而安詳。」 ARIANA 2019
F E AT U R E 專 題 故 事
Dying with Dignity 死得有尊嚴 We explore the status of euthanasia and assisted suicide in Hong Kong and around the world. 安樂死及輔助自殺在香港及世界各地的情況。 Words 文 Chermaine Lee
he conversation around euthanasia and
life, for instance, by administering a lethal
assisted suicide in Hong Kong started
injection of drugs. Whereas, in the case
in 2003, when quadriplegic Hongkonger
of assisted suicide, a doctor intentionally
Tang Siu-pun wrote to former Chief
provides drugs, but the patient administers
Executive Tung Chee-hwa, asking to end
his own life in dignity. “Time has become
In Asia, no countries have legalised
港關於安樂死及輔助自殺的討論始於 2003年 ， 當 年 四 肢 癱 瘓 的 鄧 紹 斌
meaningless for me. I look at the clock
euthanasia or physician-assisted suicide
ticking second after second every single
so far. However, it’s legal to withhold life
day and what am I waiting for? It’s just the
support in many countries and cities,
moment when death comes,” he wrote.
including Hong Kong, South Korea and
India, as long as the patient requests it and
for a dignified death but, sadly, saw little
the doctor agrees it’s in their best interest.
progress before passing away in 2012.
If the patient is not in a condition to make
Referring to the act of intentionally ending
a decision, then relatives may propose
a life, usually due to suffering or terminal
withdrawing life support. And for those
illness, the terms ‘euthanasia‘ and ‘assisted
without any immediate family, the final
suicide‘ are often used interchangeably,
decision rests with the doctor.
Tang spent his remaining years fighting
however, there is a distinction. Euthanasia
In Hong Kong, only physicians can
(meaning ‘good death‘ in Greek) sees a
withdraw life support, otherwise it’s
physician take action to end a patient’s
considered murder. Assisting others to
HISTORY OF ASSISTED SUICIDE AND EUTHANASIA 輔助自殺與安樂死的歷史
Uruguay becomes first country to legalise euthanasia 烏拉圭成為世界上第一個 將安樂死合法化的國家
Switzerland begins allowing assisted suicide 瑞士開始允許輔助自殺
Britain passes the Suicide Act, punishing anyone who helps another person commit suicide with up to 14 years in prison
Colombia legalises euthanasia, however a contradictory law punishes doctors with a six months to three years in prison for enabling ‘mercy killings’
英國通過自殺法案，任何人幫助 他人自殺，都可能面臨長達14年 的監禁刑罰
哥倫比亞安樂死合法化，不過該國同時存在一 條矛盾的法律，用來懲罰實施「無痛死亡」 的醫生，他們可被判入獄六個月到三年
Eight states in the US pass ‘Right to Die’ bills 美國八個州份通過 「死亡權利」法案
The World Federation of Right to Die Societies forms 世界死亡權利聯盟成立
The Netherlands legalises euthanasia and assisted suicide 荷蘭安樂死和輔 助自殺合法化
I want patients to have the choice to live or die. 我希望病人可以有權 選擇生死。 – Carmen Yau, end-of-life activist 游家敏，善終倡議者
end their life is illegal and perpetrators are
subject to up to 14 years of imprisonment.
Carmen Yau, an activist for patient
autonomy says the debate in Hong Kong
revolves around medical professional ethics.
Many doctors and nurses dedicate their
careers to saving lives, not ending them.
“I want patients to have the choice to live or
die,” says Yau. Instead, she says there is an
“imbalanced relationship between patients,
family members and doctors.”
Around the world, Switzerland has one of
the most relaxed policies when it comes
to end-of-life medical decisions. The country
allows foreigners to arrange assisted suicides,
drawing more than 200 ‘suicide tourists’ per
year via government-approved organisations like Dignitas. However, they must demonstrate that they have a terminal illness, unendurable disability or unbearable pain.
比利時成為唯一一個 允許未成年人安樂死 的國家
澳洲維多利亞州準備 將絕症病人輔助自殺 合法化
Colombia revisits law, introducing new protocol and safeguards for doctors
Quebec adopts physicianassisted suicide 魁北克接納醫生 輔助自殺
Belgium becomes the only country to authorise euthanasia of minors
Victoria, Australia, is set to legalize assisted suicide for terminally ill patients
Germany legalises assisted suicide in extreme cases, though contradictory laws remain 德國將極端情況下的輔助 自殺合法化，雖然與之矛 盾的法律仍然有效
LOCAL VOICES 本地之聲
A COMMUNITY BATTLE 社群之戰 We ask doctors, industry professionals and cancer survivors in Hong Kong and Macao to shed light on often overlooked aspects of the disease. 我們向香港和澳門的醫生、專業人士和癌症康復者請教了他們的心得。
Words 文 Cathy Lai, Christy Choi and Jamie Ha | Photography 攝影 Anthony Kwan
-Hong Kong 香港-
BEHIND THE SCENES An oncology resident at Prince of Wales Hospital, Dr David Johnson explains how doctors make decisions: “As a health care provider, we are balancing the benefits and risks of our treatments. From clinical experience and research we know that some patients may be at risk of major complications and, in such cases, treatments such as surgery and chemotherapy may not be suitable for them. This does not mean that we have given up on the patient. It means that we have taken the patient’s quality of life as a higher priority. “The patient should always weigh the pros and cons of each treatment [ie is it curative or palliative]. The benefits may not actually be that significant, and this should always been seen in the context of the known side effects [in case they could be life-threatening].”
Hong Kong’s public hospitals are often backed up with months-long waits for care. Clement Chan, chairman of the Cancer Patient Alliance and a leukaemia survivor, offers a solution: “We believe there should be more cooperation between public and private providers. With incentives from the government, the private sector could offer a discount for initial tests to ease the burden on the healthcare system and ensure a quicker diagnosis. “If private hospital doctors can run the preliminary tests first, public hospital doctors can provide a second opinion, then pick up the case. This way, you’ll have the scans and the diagnosis completed, and a doctor’s second opinion within 14 days.”
「作為醫療服務提供者，我們要平衡治療方法的好處和風險。透 過臨床經驗和研究，我們知道有些病人發生嚴重併發症的風險更 大，而在這種情況下，諸如手術或者化療的治療手段就可能不適 合他們了。這並不意味著我們放棄了病人。這代表我們更加重視 病人的生活質素 。」 「病人應該經常衡量每一項治療的利弊（比如，那是治愈 性的，還是紓緩性的）。這些好處實際上可能不太顯著，而這應 該被理解為已知的副作用（如果它們可能威脅生命）。」 146
「我們認為，公私營醫療服務提供者之間應該有更多合作。倘若 政府能夠提供誘因，私營服務提供者便可以向病人提供初步診斷 折扣優惠，以減輕醫療系統的負擔，並確保更快的診斷。」 「如果私家醫院醫生可以先做初步測試，公立醫院醫生便可以 提供第二意見，然後接收病症。這樣你就可以在14天內完成掃描 和診斷，並獲得另一名醫生的意見。」
PREVENTATIVE CARE In 2018, the government announced plans to vaccinate 11and 12-year-old girls against the Human Papillomavirus (HPV), the leading cause of cervical cancer. The Karen Leung Foundation, which raises awareness about gynaecological cancers, has identified gaps in the policy. Executive Director Katharina Reimer explains: “What’s lacking is the coverage for the older girls … from 13 to 25. It’s also not [administered to] boys. There are now more and more studies showing that HPV causes a variety of maledominated cancers, such as throat, oropharyngeal, anal and tongue cancers. One of our doctors who works with the foundation always reminds us that people aren’t just having vaginal sex. There’s oral sex and anal sex to consider, too. Ultimately, 70 per cent of throat cancers and 90 per cent of anal cancers are HPV-related – both types of cancer are on the rise in both sexes.”
預防保健 2018年，特首林鄭月娥宣佈，香港會給11歲和12歲的女孩接種人 類乳頭瘤病毒（HPV）疫苗。這種病毒是子宮頸癌的主要元兇之 一。致力提升人們對婦科癌症認識的梁愷昍婦癌基金會認為政策 仍有漏洞。基金會執行董事Katharina Reimer解釋道： 「現時缺乏的是對較大年紀的女孩的保護……即13歲到25歲的群 體。政策也沒有（顧及到）男孩。越來越多研究顯示，HPV可以 引起多種主要發生在男性身上的癌症，比如喉癌、口咽癌、肛門 癌和舌癌。」 「我們的其中一位合作醫生總是提醒我們，人們不僅僅通過 陰道性交。我們還要考慮到口交和肛交。70%的喉癌和90%的肛 門癌都與HPV有關，而患這兩種癌症的男女病人數都有上升。」
SUPPORT SYSTEMS Harriet Stuart-Clarke, a general Practitioner at Central Health, shares advice on how to make life easier for cancer patients: “It should be up to the person with cancer to decide how much or little they want friends, family and their work to know. Patients may feel that all they do is talk about cancer, so it may be a relief for them to talk about the latest TV programme, politics or even what nail colour they’ll choose at their next manicure. Just because they have been diagnosed with cancer, it doesn’t change who they are. “It’s natural to want to help a friend or family member going through a tough time. It’s helpful to be aware that a person having cancer treatments may experience changes in their sense of taste and smell, and they may have a sore mouth or sensitive skin, so be mindful when you bring gifts or food. Practical help – like childcare during hospitals stays or meals – is also an effective way to show support. To coordinate efforts with a group, Meal Train (www.mealtrain.com) can help you to stay organised.”
支援體系 診所Central Health的普通科醫生Harriet Stuart-Clarke向希望幫 助癌症病人的朋友、家人和同事分享她的建議： 「讓朋友、家人和同事知道多少，應該由癌症患者本人來決定。 病人可能會覺得，身邊人整天都在講癌症，所以講講最近的電視 節目、政治事件，甚至是下一次美甲想選甚麼顏色的指甲油，對 於病人來講可能都是一種寬慰，因為病人被診斷患癌不代表他們 就失去了自己。」 「想幫助朋友或家人渡過難關是很自然的。正在接受癌症治 療的病人，味覺和嗅覺都可能發生變化，他們也可能會口腔發 炎，或者皮膚敏感。瞭解這些都是有用的，當你送禮物或帶食物 給他們時，都應該注意。實際的幫助，比如在他們住院的時候幫 他們帶孩子，或者給他們做飯，也是有效的支持方式。和Meal Train （www.mealtrain.com）一起安排一下你要做的事，會讓你 更加井井有條。」 ARIANA 2019
LOCAL VOICES 本地之聲
MYTHS AND MISCONCEPTIONS Dr Gregory Cheng, an oncologist at the Macau University of Science and Technology hospital, debunks common misconceptions: “The most common myth is that cancer cannot be cured. Nowadays, some cancers such as leukaemia and lymphoma are potentially curable, even in late stages. Another common misunderstanding is that chemotherapy is very bad for the body, making patients worse. Actually, chemotherapy is still very useful for certain types of cancer. The side effects, such as severe nausea, vomiting, and the risk of infection can be controlled nowadays. “One other misconception is about pain medication. People tend to think they should avoid strong pain medications for fear of dependence or addictions. Some cancer patients will avoid taking any pain medication unless the pain becomes absolutely intolerable. At that stage, they would usually require high doses of very powerful medications to control the pain; whereas, smaller regular doses would provide better pain control.”
Macao resident Ricardo César de Sá, a caregiver for his mother with glioblastoma multiforme, shares his thoughts on what families should know during the treatment process: “Families should educate themselves: What is the prognosis of the disease? What are the treatment options and side effects? Which innovative new treatments have shown promise? The patient and family should read up as much as they can to make an informed decision with their doctors. Get several second opinions and ask for the success rate of each potential treatment. “Friends and family should know that the situation may or may not improve, and the current diagnosis might change in an instant. Cancer is a very unpredictable disease and, despite the best standard of care, it might not be curable. There are good days and bad days during treatment, and it’s no easy ride.”
「最常見的迷思是癌症是治不好的。現在，部份癌症比如血 癌和淋巴癌，就算發展到比較晚期的階段，也是有可能治愈 的。另一個常見的誤解就是，化療對身體非常不好，會讓病 人的情況更差。實際上，化療對於某些癌症仍然非常有效， 而其副作用，比如嚴重的噁心、嘔吐，以及感染的風險，現 在也是可控的。」 「另一個誤解與止痛藥有關。人們往往認為他們應該避免 用較重的止痛藥，因為擔心會依賴或上癮。一些癌症病人會避 免吃任何止痛藥，直到疼痛變得完全不可忍受為止。到那個時 候，他們通常都要用高劑量、超強藥效的止痛藥去控制痛楚， 然而，較小劑量有規律地用藥止痛，效果會更好。」
「家人們應要自我教育：這種病之後會怎麼發展？有甚麼治 療選擇？它們的副作用是甚麼？有甚麼創新而有希望的療 法？病人和家屬要閱讀盡可能多的資料，從而和醫生一起作 出有充分依據的選擇。多找幾個獨立意見，並記得詢問每一 種可能療法的成功率。」 「朋友和家人要知道，眼前的狀況可能會也可能不會 變好，而當下的診斷也許在瞬息之間就會發生改變。癌症是 非常難以預料的病症，即便有最高水準的治療，也可能治不 好。治療過程中有起有落，而絕無坦途。」
保持冷靜 現年59歲的邵惠芬於2014年接受了乳房切除手術和化療。 同年，她參與創辦了癌症病人支援組織「開心樂園協會」。 現在她已經完全康復。
「有好的開始非常重要。首先，你應該至少諮詢兩至三個醫 生，讓更多專業人士分析你的病症。有些醫生可能會勸你做 手術，因為他們希望做更多生意，但其他醫生可能會建議你 採取溫和一些的治療方法。此外，如果一個醫生對你的狀況 非常悲觀，那可能會扼殺你（對抗癌症）的意志。這就是為 甚麼你不能只聽一個醫生的話。」 「第一次諮詢醫生的時候，應該讓你的家人陪伴你，因為 如果你太緊張，也許會無法消化醫生提供的所有專業意見。但 看完醫生之後，病人和家屬都要保持冷靜，這樣才能瞭解和詢 問所有他們應該知道的事。癌症可以影響整個家庭，如果一個 人失控，整個家庭都會受影響。」
rdo ua Ed
“It’s important to have a good start. First, you should consult at least two to three doctors to let more professionals analyse your disease. Sometimes, the doctors may talk you into doing surgery because they want more business, but other doctors may suggest a milder approach. Moreover, if a doctor is very negative about your situation, this may kill your will [to fight cancer]. That’s why you cannot just listen to one doctor. “You should also bring your family members to the first consultation, because when you get too nervous, you may not be able to digest all the professional opinions. But at the end of the day, both the patients and their family members have to stay calm, so that they can learn and ask about everything they should know. Cancer can impact the whole family; if one person loses control, the whole family can be affected.”
Michelle Sio, 59, underwent a mastectomy and chemotherapy in 2014. That same year, she co-founded a cancer support group called Association of Happy Paradise. Sio is now cancer-free.
PERSPECTIVES ON PAIN Lei Kam Cheng was diagnosed with stage 4 breast cancer about six years ago. The doctor predicted that Cheng had around 2.5 years to live. She subsequently underwent chemotherapy, electrotherapy, and targeted therapy to suppress the disease. Today, she is in the first stage of recovery. “When I was having chemotherapy, the doctor told me not to touch anything with a chemical composition because my body was full of ‘poisons’. I could not use detergents or shower gels with fragrances. I could not touch seafood, because if their shells cut my hands it could cause inflammation. “To keep my spirits up, my doctor often told me not to treat myself like a cancer patient. I am 73 now. My body will decline inevitably, so I take [cancer] as a process of ageing. Of course there will be pain, but who hasn’t been through pain in life?”
關於痛苦的看法 大約六年前，李錦菁被確診患第四期乳癌。當時，癌症已擴 散到她的胸骨，醫生預言她只能再活兩年半。她隨後接受了 化療和電療，然後轉用標靶療法。今天，她正進入第一個康 復期。 「在我接受化療的時候，醫生告訴我不要碰任何含有化學物 質的東西，因為我全身都是『毒素』。我不能用清潔劑或者 有香味的沐浴露。我不能碰海鮮，因為如果被牠們的殼割傷 手，就可能引發炎症。」 「為了讓我不要情緒低落，我的醫生常常叫我不要當自 己是癌症病人。我現在73歲了，我的身體無可避免會走下 坡，所以我當（癌症）是一種老化的過程。當然會有痛楚， 但誰的人生沒有痛楚呢？」
THROUGH THE LENS 眾鏡透視
A DAY IN THE LIFE 命裡的一天
Poetry 詩 Nashua Gallagher | Photography 攝影 Jess Yu Translation 翻譯 Arthur Ng Through the Lens champions creativity and collaboration. In this recurring series, we invite a poet and a photographer to capture Hong Kong from new perspectives. 眾鏡透視旨在促進創意與合作。在這個定期的專欄裡， 我們會邀請一名詩人及一名攝影師以全新的角度捕捉香港。
MORNING Salt pan to Tai Pan, Backs bent to shuck barnacles, Tease out a leather shine, Carts pushed by folk weathered through the political shutter-speed Of refuge, enclave, port town. People came, from the sea, over marshland, then from planes. Built with granite, neon, concrete. Bodies now contort to walk a straight line, where coolies once ran vertical, lithe. Sampans, then junks, then ocean liners, Buildings set afire at night, spilling technicolour onto ancient waters, but at dawn gentle, lapping, quiet. Close your eyes, stick out your tongue, taste the briney preserve passed down by many suns. This is lion rock spirit.
晨光 從鹽田到大班， 躬身刮光馬牙， 磨出一塊亮滑皮革， 滄桑者推著車 在政策眨動的快門間 駛過避難所、飛地、港鎮。 而人們來了，跨海越澤， 然後是客機降落，搭建起崗岩 霓虹、石屎；至今 身軀從苦力輕盈昂步處 捲曲地走出一條直線來。 舢舨，帆船，到遠航大輪， 大樓點起了火光，流溢滿夜間， 繽紛地攝進古老的海水中， 卻於黎明間柔和、平順、寧靜。 請閉起你的雙眼，只用舌尖， 細嚐這流經歲月的 陽光裡傳接下來的腥鹹。 ——這正是獅子山之魂 ARIANA 2019
THROUGH THE LENS 眾鏡透視
NOON Woman sits gargoyled, joining the neighbourhood choral of lunchtime gossip. Pause to tear grilled meat over her styrofoam box, biting into words and rice, equanimous, amidst the bustle of moving office shapes, the wet market melodies of fruit hawkers. Her toddler charge, slumbers in a pushchair, each breath an earnest hot release from rosy, balloon cheeks. Up the hill a sign mandates a ‘sitting out area’ where pigeons and the elderly duly comply. They flock, both in colours of muted blues and purples and greys, bring a stillness to the city, Like balm to soothe the lion’s belly.
正午 女人僵坐如一隻雨漏鬼，投身 鄰友間和唱著的午飯 八卦時光。擱下對烤肉的撕扯 在她的發泡膠飯盒外，咀嚼 混合字詞與飯粒、一副安然， 置身於寫字樓人事的匆匆變遷中， 街市水果販的旋律間。 她那襁褓中的孩童，酣睡了 嬰兒車內，每道氣息 從紅潤與鼓腮的臉上 綻放出真摰的熾熱。 在山上一塊標示宣告的 「休憩場所」，鴿子 與長者安分地遵從指引。他們 擠擁於此，融入色彩中 ——默言的藍紫灰 寄城市一份靜瑟， 香皂般撫揉著獅子的肚皮。
THROUGH THE LENS 眾鏡透視
AFTERNOON From the 59th floor, pen following figure eights of the black kites outside, They soar, regal, take long sweeping surveys of the world. All is quiet for us. Far below, pile driving and construction debris puff from building sites, trams amble, their strained calls losing voice as higher and higher we ascend – human sacrifices moved through the circulatory system of the building’s lifts. The birds and I are joined in captivity by men in cages. They trawl the epidermis of the beast, cleaning windows inside an eerie bygone peace, as the wind jostles, and pulleys quiver, they sit, nonplussed, travelling the outlines of the skyline that gilds sleeping rocks come nighttime.
午夕 自五十九層高，筆尖緊隨著 外頭盤旋八字的黑鳶 一同飛升，莊嚴地無遺了 瞰察的這個世界—— 致吾輩之萬籟俱寂。 底下遠處，有一堆行車與建築 工地裡飛揚的殘渣， 徐行的叮叮；它們透支 吶喊出的沙啞愈發尖銳 我們晉升 人們殉沉 跌宕在大廈電梯的 循環系統裡。鳥群與我 被人帶進了囚籠。 他們搜括野獸的 表皮，在怪異恐怖的昔日太平中 擦抹窗口，而當大風飛撞， 滑輪顫抖之際，他們坐下，不知所措， 遊過 鍍淺睡獅子山入夜的 金色的天際線輪廓。
THROUGH THE LENS 眾鏡透視
EVENING Thousands of bodies confined to a metal tube, carving personal space in a digital realm, despite standing shoulder to shoulder, a few spill out at every station, the weary calm briefly unsettled Each waiting for the beep of the Doors to signify – satisfaction, reprieve, a hot meal, perhaps Or just the television screen. To shower, then bed when night bleeds into the early hours. And then, to wake, to do it all again, and again, again, rub from eyes, the salty sediment spun from sleep, rise together to raise the beast. This too, is lion rock spirit.
傍晚 百萬個身軀塞滿了金屬試管， 在數碼王國中割讓著私人空間， 儘管站得肩貼肩， 每站月台上溢走些許的， 是疲憊的默言在微騷 按捺至車門訊號響動間 標記出的—— 滿足、緩解， 溫飽，也許吧 或者僅剩電視熒幕。 淋一淋浴，接著躺下 就隨夜晚流逝至凌晨。 然後是醒來，周而復始， 無窮，無盡，去揉淨眼睛， 那睡眠間織出的鹹垢， 一同站起來高抬這座野獸。 這也，是獅子山精神呢！
About the Contributors 關於貢獻者
Hong Kong-raised poet Nashua Gallagher is the founding director of Peel Street Poetry and the author of All the Words A Stage. Published in 2018, Gallagher’s debut poetry collection explores topics such as coming-of-age in Hong Kong, motherhood, relationships and identity. 在香港長大的詩人Nashua Gallagher 是卑利街詩會創會總監。她在2018年 出版了首本個人詩集《All the Words A Stage》，探索了在香港長大成人、 成為母親、關係及身分等題材。
Learn more 詳情請看 adashofnash.com
Born and raised in Hong Kong, post80s photographer Jess Yu is driven by human connection and curiosity. She captures candid street scenes and surreal aerial shots, reflecting the many sides of Hong Kong. 在香港土生土長的80後攝影師Jess Yu 受到人與人之間的聯繫及好奇心驅 使，常常捕捉樸實的街道景致及 超現實的高空影像，從而反映香港 的不同面貌。
Learn more 詳情請看 facebook.com/coloursinmylife; Instagram: @colours_in_my_life
Where to Find Us 哪裡可以找到我們 Ariana is available at more than 500 locations across Hong Kong, including hotels, restaurants, coffee shops, NGOs, schools, and more. Here are some of our distribution points. 您可以在全港 500 多個地點找到 Ariana， 包括酒店、餐廳、咖啡店、NGO、學校等。 以下是我們的分發點。
Kennedy Town 堅尼地城
Dorsett Regency Hotel The Harbour School The Hive Winstons Coffee
Hong Kong University 香港大學
Artisan Room/COBO House BlackSalt Tavern Café Malacca Ethos Hotel Jen Médecins Sans Frontières Salt & Barrel The University of Hong Kong
Sai Ying Pun 西營盤 Feather & Bone Locofama Polygon Cafe Potato Head theDesk The Winery Winstons Coffee
Sheung Wan 上環 Barista Jam Brew Bros Coffee Classified FRITES Grassroots Pantry Lan Kwai Fong at Kau Fong Hotel Man Mo Dim Sum
Mojo Nomad Central Ten Feet Tall The Hive The Cupping Room The Women's Foundation University of Toronto Why50
Central 中環 Arcane Ayuthaiya Balance Health Bao Bei Beefbar HK Bistecca Bookazine Landmark Prince's Building Central, Lyndhurst Terrace Central and One Exchange Square Central Canossa Hospital (Caritas) Central Health Medical Practice CIAK - In The Kitchen City Hall Public Library Concept Creations Ltd Dr Susan Jamieson Integrative Medical Practice Duddell's Feather & Bone Fineprint Fringe Club Hazel & Hershey Hong Kong Central Library Hong Kong Childhealth Foundation Integrated Medical Institute (IMI) KALE
Ladies Recreation Club L Place Le Velo Life Clinic LGB LUPA Mandarin Oriental Mettā Mother’s Choice On Dining Kitchen & Lounge Oolaa ParkwayHealth Medical Centre PhysioCentral Pier 7 Café & Bar PMQ Prestige Medical Skin & Laser Centre SEVVA Stamford American School Starbucks Jardine House, Century Square, Bank of China Tower, CITIC Tower, Baskerville House, Prosperity Tower, The Skyscraper Center, Man Yee Building, Exchange Square Podium, IFC Mall Staunton's Group Tai Kwun The American Club The Chariot Club Ltd The Hive The Hong Kong Bankers Club Tivo Topiary Urban Bakery Works Wagyu Watermark
Pacific Place Island Shangri-La Starbucks The Continental theDesk The Kinder Clinic The Murray VEDA Women’s Commission
Wan Chai 灣仔 22 Ships caffè HABITŪ Dorsett Hotel Grand Hyatt Hong Kong Council of Social Service Hong Kong Shue Yan University Kapok Le Garçon Saigon Pici TED’s Lookout The Butchers Club The Coffee Academics The Dynasty Club The Hive The Hong Kong Academy for Performing Arts The Pawn
Happy Valley 跑馬地 Cucus Feather & Bone French International School Hong Kong Happy Alley Coffee Bar Hong Kong Adventist Hospital
Admiralty 金鐘 BRICK LANE Cafe Sai Cafe Cova HK Paediatric Orthopaedics & Scoliosis Center JW Marriott Ovolo Central Plat du Jour
Causeway Bay 銅鑼灣 18 Grams Bookazine Times Square Cafe Corridor caffè HABITŪ Divine Medical Centre Elephant Grounds La Station
Mansons Lot Medifast (Hong Kong) Ltd Mulan Spa OASIS Medical Centre PathLab Medical Laboratories Ltd Royal Hong Kong Yacht Club Spaces The Coffee Academics theDesk World Trade Centre Club
North Point 北角 Brew Note Coffee Roaster Hong Kong Shue Yan University North Point Public Library Oxfam Hong Kong The Big Bite
Quarry Bay 鰂魚涌 ESF Head Office Espresso Alchemy FRITES Mr & Mrs Fox Nutsy Coffee Bar The Butchers Club
Taikoo 太古 caffè HABITŪ EAST Hotel Greyhound Cafe sensory ZERO Starbucks The Night Market
Chai Wan 柴灣 AO Vertical Art Space Starbucks Technological and Higher Education Institute of Hong Kong
Shek O 石澳 Cococabana Lu Lu’s Cafe Shek O Golf and Country Club
Stanley 赤柱 La Biosthetique Paris Mijas Spanish Restaurant Starbucks The Boathouse
Repulse Bay 淺水灣 Amalfitana Classified Limewood Spices The Coffee Academics The Lily Clubhouse The Ocean The Repulse Bay Arcade The Repulse Bay Club The Verandah Tri Balinese Restaurant
Deep Water Bay 深水灣 Fairway Grill The American Club, Country Club The Hong Kong Country Club
Wong Chuk Hang 黃竹坑
Africa Coffee & Tea Hong Kong Anti-Cancer Society MUM Veggie Cafe Ovolo Southside sensory ZERO Singapore International School Southside Family Health Centre
Aberdeen 香港仔 Aberdeen Marina Club Canadian International School of Hong Kong South Island School (ESF) The Hive
Pok Fu Lam 薄扶林 Kellett School Recharge Starbucks West Island School (ESF)
The Peak 太平山 German Swiss International School (GSIS) Starbucks The Peak Lookout
Discovery Bay 愉景灣 22° North Auberge Hotel Discovery College (ESF) Island Health Family Practice
Morton’s Pacificare Medical Centre The Butchers Club The Langham The Mariners’ Club YMCA Hong Kong
Jordan 佐敦 Eaton Hotel Eaton Workshop Hotel Stage Justice Centre Kowloon Cricket Club Otic Hearing & Speech Centre (Main branch) United Services Recreation Club
Mong Kok 旺角
The Hong Kong Polytechnic University
Cordis Hotel Dorsett Hotel Fa Yuen Street Public Library Hong Kong Family Link Mental Health Advocacy Association Hong Kong Human Rights Commission Knockbox Coffee Company La Scala Mum’s Not Home PathFinders Starbucks TAP: The Ale Project
Tsim Sha Tsui 尖沙咀
Ho Man Tin 何文田
Tung Chung 東涌 Novotel Citygate Hong Kong Starbucks YMCA of Hong Kong Christian College
Mui Wo 梅窩 VIBE Bookstore
Hung Hom 紅磡
18 Grams Aqua Bostonian Seafood & Grill Restaurant caffè HABITŪ Hong Kong Workers’ Health Centre Hutong Hyatt Regency InterContinental Hong Kong Marco Polo Hongkong Hotel
Asian Human Rights Commission Association Concerning Sexual Violence Against Women King George V School (ESF) Kowloon Public Library The Open University of Hong Kong Tung Wah College, King’s Park Campus
Kwai Chung 葵涌
Sai Kung 西貢
South Kwai Chung Public Library The Mariners’ Club
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LAST WORD 流芳之語
CALM AND COMPASSION 冷 的 手 ，熱 的 心
A World War II Flying Tigers nurse and educator, Rebecca Chan was one of the most influential medics in Hong Kong history. 二戰飛虎隊護士、護理學教師陳可慰，是香港歷史上最具影響力的醫護人員之一。
Words 文 Jamie Ha | Illustrations 插畫 Lauren Crow
The sound of explosions ricocheted across Hong Kong as the Imperial Japanese Army attacked in December 1941. This was the Battle of Hong Kong, one of the first military actions of World War II in the Pacific region. By the end of the year, Kai Tak Airport had been raided, Lei Yue Mun Fort bombed, and civilian facilities destroyed. The violence escalated on Christmas Day, when Japanese troops burst into the wards of St Stephen’s College – temporarily serving as a hospital – and attacked wounded soldiers and medical staff. Those who survived the carnage, which would later become known as the St Stephen’s College massacre, were rushed to Queen Mary Hospital. Among the nurses attending to victims was Rebecca Chan. Fresh out of nursing school, 21-year-old Chan witnessed harrowing scenes that night. While critically injured victims poured into the ward, a doctor amputated a fellow nurse’s leg. Chan, one of the best students in her year, assisted the surgery with calm and compassion amidst the chaos. That same competence guided the young nurse throughout her career, leading Chan to become one of the most influential nurses in Hong Kong history.
A MEDICAL LEGACY Chan was born on 27 June 1920 in Guangzhou. She was the daughter of Lee Sun Chau, one of the first female doctors to practice western medicine in China, and her father Po-Yin Chan had participated in the 1911 Chinese Revolution to overthrow China’s last imperial
1941年12月，日本皇軍進攻香港，滿 城盡是爆炸巨響。這就是「香港保衛 戰」，二戰中太平洋地區最先爆發的 軍事行動之一。當時，啟德機場遭到 空襲，鯉魚門炮台被轟炸，民用設施 也受到破壞。 聖誕節當日，暴行升級，日軍 闖入聖士提反書院的病房（當時這 間學校被臨時徵用為軍醫院），並 攻擊大量傷兵和醫護人員，這次行 動後來被稱為「聖士提反書院大屠 殺」。在這次大屠殺中生還的人， 都被緊急送到瑪麗醫院。 當晚照顧受害者的護士中，有一 人叫陳可慰。她當時21歲，剛從護士 學校畢業，就目睹了當晚可怕的景 象：重傷者湧入病房，一名護士同事 的腿要被截除。作為同屆學生中的佼 佼者，陳可慰仁心不移、臨危不亂 地協助醫生完成了那次手術。 這樣的能力在陳可慰的職業生涯 中一直引導著她，讓她成為香港最 受敬重的護士之一。
醫護傳奇 1920年6月27日，陳可慰在廣州出 生。她的母親周理信是中國最早的 女西醫之一，父親陳步賢則參加了 1911年推翻滿清皇朝、建立中華民 國的辛亥革命，之後在1920年代成 為廣州的參議員。 ARIANA 2019
LAST WORD 流芳之語
dynasty and establish the Republic of China, before becoming senator of Guangzhou in the 1920s. As the fighting cliques of China’s Warlords Era stirred turmoil across the country, Lee emigrated to Hong Kong with a three-month-old Chan in tow. Growing up across the border, Chan would spend an “unusual childhood with [her] medically trained mother in the nurses’ quarters of a hospital” as recounted in Piloted to Serve, a 2012 biography co-authored by Deborah Chung, one of Chan’s two daughters. Though a gifted student, Chan didn’t attend university or pursue a career as a doctor, like her mother. “[My mother] volunteered to forsake her university education and go into nursing, which provided a salary but no degree,” explains Chung. “That way, the family could fund the university education of her younger brother.”
FLYING INTO DANGER Chan graduated from nursing training at Queen Mary Hospital just as the Japanese army invaded Hong Kong. While the Battle of Hong Kong raged on – resulting in an occupation of three years and eight months – Chan escaped to Chongqing, in southwest China. The following years would be among the most formative of Chan’s life. In the mainland, she learned about the Flying Tigers, the first group of volunteer American fighter pilots in history. Led by Captain Claire Lee Chennault, the squadron consisted of fighters from the US Army, Navy and Marine Corps who fought alongside the Chinese against Japanese forces. Awed by their mission, Chan relocated to Kunming, in Yunnan province, in early 1942 to aid the pilots as a nurse, becoming one of the first four Chinese women to work alongside the Flying Tigers. At the beginning of 1943, she started flying with the China National Aviation Corporation (CNAC) after the Flying Tigers squadron was absorbed by the US Army. With CNAC, she served as a nurse-stewardess on flights over the Hump – the eastern end of the Himalayan mountains between Chongqing and Kolkata, India, used by the allies for military air transport to China after Japan had cut off the Burma Road. The flights were dangerous, due to ill-equipped propeller airplanes unsuitable to fly at the heights required by the route. Chan completed some 50 missions, 162
在中國軍閥混戰之際，周理信 帶著才三個月大的陳可慰來到香 港。在陳可慰與次女鍾端玲合寫、 於2012年出版的自傳《飛虎戰．駝 峰險．亂世情》中，陳可慰談到她 「不一樣的童年」，是在醫院護士 宿舍中與受過醫學訓練的母親一起 度過的。 儘管陳可慰是一個很有天賦的學 生，但她並沒有上過大學，也沒有追 隨她母親的步伐成為一名醫生。 鍾 端玲解釋道：「（我的母親）自願放 棄大學教育，去當有薪金但沒有學位 的護士，是為了可以資助她的弟弟 上大學。」
飛向危難 陳可慰後剛好在日軍入侵香港的時候 完成瑪麗醫院的護理培訓。隨著香港 保衛戰酣鬥蔓延，並以日軍三年零八 個月的佔領告終，陳可慰最終逃到了 中國西南部的重慶。 接下來的數年，是奠定陳可慰人 生走向的關鍵時期。她在中國大陸得 悉了史上第一個美國志願空軍團「飛 虎隊」的事蹟。這支空軍中隊由美 軍上尉陳納德帶領，隊中來自美國陸 軍、海軍和海軍陸戰隊的飛行員和中 國軍隊並肩作戰，對抗日軍。 帶著對飛虎隊的崇敬，陳可慰在 1942年初轉到雲南昆明，以護士的身 分支援飛行員，成為與飛虎隊並肩工 作的首四位中國女性之一。1943年伊 始，因為飛虎隊被收編進美軍，她轉 到了中國航空公司，擔任「駝峰航 線」的空中護士。此航線需要飛越重 慶和印度加爾各答之間，位於喜馬拉 雅山脈東部邊沿的「駝峰」。在日本 切斷滇緬公路之後，盟軍就只能靠這 條航路空運戰略物資到中國。 飛這條航線非常危險，因為當時 他們所用的螺旋槳飛機設備差，並不 適合飛至航線要求的飛行高度。陳可 慰完成了大約50次飛行任務，冒著生
risking her life to save hundreds of others. “[I] treasured the opportunity to defend China, to witness the bravery and dedication of the US airmen and medical doctors,” Chan recounts in Piloted to Serve. “Among my numerous flights across the Hump, one of them was the most dangerous... the plane suddenly swayed wildly. The pilot [later] told me that it was because a Japanese military plane was following us, and we had to dodge by flying between the mountain peaks.” After gaining experience with CNAC in Kolkata, Chan later transferred to Shanghai Longhua Airport and rose to become a head nurse. It was during this time that Chan met her husband, Leslie Wah-Leung Chung. A member of the Hong Kong Volunteer Defence Corps, Chung served as a gunner – soldiers responsible for maintaining weaponry and supplying the frontline with ammunition – and shared the same ideals of freedom, altruism and service. They married in Kolkata in 1945 and spent 64 years together.
命危險拯救了數百人。她在自傳中寫 道：「我很珍惜這個機會，可以保衛 中國，並見證美國空軍和醫生的勇敢 與獻身精神。」 「在我多次飛越『駝峰』的任務 中，有一次最為危險……飛機忽然猛 烈搖晃。機師（之後）告訴我，那是 因為有一架日本軍機跟著我們，我們 不得不在山峰之間閃躲飛行。」 在加爾各答服務「駝峰航線」一 段時間之後，陳可慰被調到上海龍 華機場工作，並晉升為中國航空公司 的護士長。她在這時邂逅了她後來 的丈夫鍾華亮。鍾華亮當時是香港 義勇防衛軍的一名炮手，負責維護武 器和給前線支援彈藥。他和陳可慰一 樣，信奉自由、無私和服務的價值。 他們於1945年在加爾各答結婚，之後 廝守64年。
LEADING BY EXAMPLE
In the decades following the war, Chan returned to Hong Kong and continued her hospital work. In 1958, Chan was elected as president of the Hong Kong Association of Nurses and Midwives, having previously served on its executive committee. She was the association’s president for the next three years, introducing a number of pivotal changes for the industry in Hong Kong. Under her leadership, all nurses learned technical English training, with an aim to broaden their skills and career opportunities. By 1963, she became a Sister Tutor (nursing instructor) for the government of Hong Kong and that same year was chosen by the Tung Wah Group of Hospitals – the oldest and largest charitable organisation in the city – to be the first nurse sent to study at the College of Nursing in Melbourne, Australia. Following the training trip, Chan was promoted to Sister Tutor-in-Charge, managing the group’s nursing school and mentoring young students. In 1967, Chan began advocating for equal pay in the nursing profession. At the time, female nurses habitually received lower salaries and fewer benefits than their male counterparts. Her efforts laid the
戰後，陳可慰回港定居，並繼續在 醫護界工作數十年。1958年，她當 選為香港護士產科士聯會主席，此 前她已擔任該會的理事。 她在擔任該會主席的三年間， 為香港的護理業帶來了數個關鍵的 改變。在她的領導下，所有護士都 要接受技術英語訓練，以拓展她們 的技能和就業機會。 1963年，陳可慰成為香港政府 的護士教師，同年獲香港最大型、 歷史最悠久的慈善機構東華三院選 中，成為首批被送往澳洲墨爾本護 士學院進修的護士之一。學成歸來 後，她在1964年被東華三院提拔為 該機構護士學校的總教師，負責管 理學校和指導年輕學生。 1967年，陳可慰開始倡議男女護 士同工同酬。那時候，女護士的薪酬 和福利慣常地比同職級的男護士少。 陳可慰的努力為政府在1971年發表的 護士統一薪級表奠下了基礎，促進了 護士業同工同酬的進步發展。 ARIANA 2019
LAST WORD 流芳之語
“She trained and inspired a generation of nurses in the city.” 「她培育並啟發了 香港一整代的護 理人員。」 – Deborah Chung 鍾端玲
foundation for the government to construct a new salary scale in 1971, aiding the progression towards equal pay in the nursing industry. She retired in 1975 at the age of 55 and, that same year, emigrated to Toronto with her husband. “She lived a quiet life, never drawing much attention to her achievements,” says Chung. In 2011, her daughter applied to the US Army for recognition of Chan’s contribution in WWII. As a result, Chan was awarded multiple military medals and honours towards the end of her life, leaving her daughter Deborah to accept them in her honour. “[My mum] was very humble about her role in serving as a nurse with the Flying Tigers and downplayed her contribution in Hong Kong,” says Chung. “She trained and inspired a generation of nurses in the city.” And those who followed, too. 164
陳可慰於1975年55歲時退休， 其後與丈夫移居多倫多。「她生活 低調，從不炫耀自己的成就。」鍾 端玲說。2011年，陳可慰的女兒代 表她向美國陸軍部申請認可她在二 戰時的貢獻。結果，陳可慰在去世 前不久獲得了數枚勛章和數項榮 譽，並最終由她女兒代領。 鍾端玲說：「（我的母親）對於 她曾服務飛虎隊一事一直保持非常 謙遜的態度，並淡化自己的貢獻。 她培育並啟發了香港一整代的護理 人員。」
AIAspiration Machine Momentum Technology Teamwork Digitalisation Determination 尚乘集團是香港領先的綜合金融機構集團和亞洲第一的獨立投資銀行， 也專注於提供企業保險解決方案以及企業資產管理服務。尚乘透過我 們獨有的尚乘蜘蛛網生態圈（AMTD SpiderNet） ，致力成為「超級聯 絡人」來服務和打通中港兩地及寰球資本與資源。尚乘也是港資金融 機構裡唯一一家被世界經濟論壇選為全球戰略合作夥伴，彰顯我們對 香港及全球金融業的貢獻及影響力。尚乘成立了專注社會公益事業的 尚乘基金會，旨在培育全球人才、扶貧助學和支持弱勢群體。