[SAMPLE READING] Three Cancers in Ten Months : When Doctor Becomes Caregiver

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Dr. K. Azlan

More Praise for Dr. K. Azlan and Three Cancers in Ten Months “Author demonstrated the importance of patient and love during the difficult time . . . We all can learn from this book” — Dr Sabariah J (Head of Emergency Medicine Services, Malaysia) Acute Myeloid Leukaemia Survivor “As close as you can come to living it without the pain, Invaluable !”

— Amy Gillis MD. Canada Family Physician, Dalhousie University, Halifax, Nova Scotia, Canada “ Both my mother and aunt had cancer. Guides written in this book are useful for family members and organizations dealing with it.”

— Mr A. Yazid (Registered Paramedic) Breast Cancers Caregiver “A must read for caregivers with loved ones diagnosed with cancer” — Rohit Kumar MD. Canada Anesthesiologists & Lecturer, University of Toronto, Canada

Praise for Dr. K. Azlan and Three Cancers in Ten Months

Letter of Commendation from:

Secretary General Ministry of Health Malaysia, Dato’ Seri’ Dr. Chen Chaw Min Director General Ministry of Health Malaysia, Datuk Dr. Noor Hisham Abdullah

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Three Cancers in Ten Months When Doctor Becomes Caregiver

by

Dr. K. Azlan

Copyright Š 2017 by Azlan Kamalludin All rights reserved.

This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

Although every precaution has been taken to verify the accuracy of the information contained herein, the author and publisher assume no responsibility for any errors or omissions. No liability is assumed for damages that may result from the use of information contained within.

This book is not intended as a substitute for the medical advice of an attending physicians. The reader should regularly consult their attending physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention.

Ordering Information: Quantity sales. Special discounts are available on quantity purchases by corporations, associations, and others. For details, contact the publisher at the address: Three Cancers in Ten Months, No 52, 2nd Floor, Kompleks Perniagaan Sultan Abdul Hamid, Persiaran Sultan Abdul Hamid 3, 05050 Alor Setar, Kedah Darulaman.

Malaysia.

First Printing, 2017 Paper back edition: ISBN 978-967-15014-0-5 Hard cover edition: ISBN 978-967-15014-1-2 eBook edition: eISBN 978-967-15014-2-9 www.drkazlan.com Book layout by www.ebooklaunch.com Cover Design by https://99designs.com (Bikelindo V. Rouco)

This book is dedicated to my family: My lovely mother, Aminah, The angels who kept me motivated, my daughters, Balqis, Sara, and Hawa My father, my father-in-law, and my wife —the cancers changed us for the better.

Table of Contents Why This Book Was Written ...................................... 1 Chapter 1: I Am a Physician, Yet I Am Not Prepared .. 7 Chapter 2: Three Cancers in Ten Months ................. 13 Chapter 3: The Pain of Biopsy................................... 39 Chapter 4: An Abundance of Information ................. 59 Chapter 5: Let’s Gear Up as Patients!......................... 73 Chapter 6: Paper Trails . . . Let’s Make It Right ........ 91 Chapter 7: Our Battle with Chemotherapy .............. 103 Chapter 8: Creating Time for your Loved One and Yourself ............................................................. 121 Chapter 9: Please Understand Us, the Caregivers ..... 137 Chapter 10: Resentment and Acceptance of Supplements ............................................................ 153 Chapter 11: Palliative and Stage IV Do Not Mean Giving Up ............................................................... 165 Chapter 12: Things I Needed from Friends ............. 173 Chapter 13: Our Life after the Three Cancers.......... 187 Chapter 14: Last Thoughts on Cancer ..................... 201

Why This Book Was Written “Life is not a bed of roses.” —Anonymous My name is Azlan Kamalludin (pronounced AxLand). I am a doctor, an Emergency Physician and the Head of the Emergency Department in a small district in Malaysia.

Within a ten-month period, I dealt with three close relatives who had cancer. All three were diagnosed with a different type of cancer, at different staging, requiring different investigation tools, different treatment plans, and with different progressions and prognoses.

The first was my father-in-law. This gentle and kind person, who never once raised his voice, was diagnosed with Multiple Myeloma, a type of blood cancer, four weeks after his retirement. Within about two months, my father was diagnosed with prostate cancer, followed by my wife being diagnosed with Hodgkin’s Lymphoma about eight months later.

My father-in-law, who lived with my wife, my daughters, and myself, passed away after six months.

When he was diagnosed, we did not even realize that during his illness my wife already had cancer spreading around her heart.

When I was writing this book, my loved ones were and are still battling cancer and post-chemotherapy discomfort. I am currently waiting for my father’s blood 1

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results to be ready in a few days. This will tell us whether we need to proceed with another bone scan or not. The blood tests and blood scans will also tell us of the progression of the disease. My wife, on the other hand, still complains of tingling pains on her feet caused by one of her chemotherapy sessions completed months ago. On top of this, her knee pain occasionally puts her on the edge after a long walk, a rare side effect of chemotherapy.

I imagine you are reading this book because someone in your life has been diagnosed with cancer. Maybe it is you, one of your loved ones, your neighbour, or a co-worker. I wish I could say “I understand your pain,” or “I know what you are going through . . .” But the truth of the matter is that no one will understand what you are going through. I have gone through tough times, am still dealing with cancer of my loved ones, and yet I find it impossible to describe or compare the suffering of cancer patients and their families. It is simply because the circumstances, surrounding support systems, cancer progression, treatment, and many more factors are unique to individual cancer patients and their caregivers. We can only share and learn from each other.

During this turmoil, I realized that most of the things I learned in medical school and during my practice did not prepare me to be a caregiver. I could not answer most of the questions asked by my family members. I did not even know some of the answers to my own questions. I was surrounded by guilt, bitterness, worry, and self-blaming. Is this the end of 2

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their lives and my happiness? Am I going to lose my loved ones?

Honestly, at times I felt I was being treated unfairly in life. There I was, a physician, and I still needed to learn every step of the way how to deal with these illnesses. It was really hard handling the turmoil and it triggered a sense of despair and a temptation to give up.

It also did not help when people said to my wife, “Thank God your husband is a doctor,” as though that would solve all problems automatically. I remember a specific time when I considered quitting my practice, selling all I own, and focusing on my children and wife’s welfare while doing a part-time job. Facing these circumstances was the longest and loneliest journey anybody should ever have to go through.

After my wife finished her chemotherapy and was in remission, I wrote a short post in my Facebook account.

Hi, Survivors, I am an emergency physician in Malaysia. Early in January 2014, my loved one was diagnosed with Hodgkin’s Lymphoma IIIB. It was the toughest news to all of us. Since then she has had a bone marrow biopsy, 3 PET scans, CT Scan, ward admissions, 12 sessions of chemotherapy, 80+ blood draws, 30+ subcutaneous filgrastim injections, countless sleepless nights, side-effect after side-effect of chemotherapy (lung fibrosis, fever), and much more. The physical pain she endured was severe, not to mention the psychological pain. I’m so proud of her ability to swim through all these. My wife, 3

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our three girls, and I have gone through tough times. We are happy to see that her latest PET scan was normal . . . She is a survivor.

I thank God for this second chance.

I thank the hematologist, Dr. Liew Hong Keng, and other health personnel involved.

I thank all of our relatives and friends for your continuing support.

I thank this AWESOME group for keeping our spirits up.

Cancer has changed us, and we hope we can close that door and open a new one. To others, please DON’T GIVE UP . . .

Dr. Azlan Kamalludin To my surprise, it was shared dozens of times and I had numerous comments. Most of them were surprised at the disclosure I made and many more kept asking how we dealt with it. Since then, more phone calls, emails, instant messages, and other social media applications flooded into my social media account.

Questions upon questions were asked on my wife’s initial symptoms; how we got to know it was cancer; dealing with treatment; suggestions and inspirational stories were posted.

I remember one stranger contacting me via Facebook messenger and wanting to meet me in person.

After several messages back and forth, I decided to meet him. We met at the Kuala Lumpur International Airport and I was shocked to hear what he had to say.

He has a son with rare nodes enlargement and 4

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respiratory symptoms, which were still being investigated at that time. He heard the doctor mention the word cancer as one of the possible diagnoses. He had an anxiety attack at that time and started asking around about how to deal with the issue. Someone suggested my name after reading my Facebook post regarding my wife. We spoke for a couple of hours and I was glad to say that I have helped him in whatever small way I could because I received messages from him thanking me for my suggestions on steps needed to deal with his pain.

All I am seeking to do here is to share my experiences in handling my loved ones’ cancer. The issues that we faced and handled, involving dealing with visitors, unwanted verbal comments, how to be a good supporter, and how to not to miss out on the important things of life if your loved one is diagnosed with a terminal disease?. I even included a chapter on how we dealt with news of our next-door neighbor’s daughter being diagnosed with spine cancer—how we reacted and the help we had to offer based on our experiences.

Some contents in this book will touch on personal aspects that even my close ones do not know. I will include them so that you will understand that these things can and will happen to others under such circumstances. I need to share these unique experiences to reach out to others, empathizing with them, helping them understand their pain, and hoping to provide guidance.

I will try my best to share our journey and offer you methods and concepts that have helped us, even amid such arduous trials and heartbreaking tragedy.

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Cancer has changed us. It changed me from a physician into a caregiver. I have learned and developed ways to cope with these trials and tribulations. But then, I am blessed by having these people in my life and will continue caring for them as best as I can.

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Chapter 1

I Am a Physician, Yet I Am Not Prepared “We have to prepare for the worst, and the worst is war.”

—Bernard Kouchner I am the first doctor in my family. Even at an early age in primary school, I always knew I wanted to become a doctor. It was a dream that inspired me to great heights during my school life. The feeling, I want to help people, had always been a fixture in my heart.

Friends and teachers somehow knew what I wanted. At the end of every school term, when my yearbooks were signed by my friends, a vast majority encouraged me to pursue my aspiration. When I completed my higher local education with distinction, I received a government scholarship and was accepted to enter a medical school at Dalhousie University, Halifax, Nova Scotia, Canada.

In Canada, I spent a total of six years before completing my medical degree. During these times, I was posted to multiple departments and worked with wonderful people. The passion for wanting to help 7

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never faded. In retrospect, I realized something odd.

For some reason or other, I always ended up in the cancer ward dealing with cancer-related disciplines. For example, during my General Medicine posting, I was in the hematology ward caring for and reviewing patients with blood cancer. During my Pediatric posting, I was sent to the Pediatric Oncology ward to gain further knowledge.

Priceless memories I gained will never be forgotten.

I remember one occasion where I spent time having lunch with my patient and his mother. I even had a chance to shave my patient’s head prior to his chemotherapy regimen for his aggressive lung cancer. I watched one terminally ill patient with gallbladder cancer take her last breath.

During my neurosurgery rotations, I ended up observing lots of brain cancer patients (in operating theatres and clinics). Even my elective posting was on Palliative Care Medicine with one of the greatest teachers, Doctor P. Macintyre.

We made home visits, adjusted morphine pump doses, improved patient mobility, and a lot more.

During those times in Canada, I also helped with procedures in the hematology ward to diagnose patients’ blood cancer disorders. I did bone marrow biopsies, lumbar punctures, and other procedures.

These recurrent exposures to cancer patients continued in Malaysia. During my internship, in my medical posting I was placed in the Hematology day care ward. Most interns spent two weeks in these noncompulsory assignments; I spent a whole four weeks.

During a pediatric attachment, I was in the Pediatric 8

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Oncology ward. Even during my post-graduate training, the same trend continued. Due to these multiple ward assignments and exposure, I started to feel I had a lot of experience in helping cancer patients.

I thought I was someone above average in knowing and dealing with cancer. I used to brag that “I understood what my patients went through.” I was so naïve.

For more than five years I was an emergency physician in a hospital in one of the northern states in Peninsular Malaysia. I was at the so-called “peak of my career.” I have a wonderful wife to whom I was then married for eight years. We were blessed with three beautiful daughters. We bought a nice property right opposite the hospital. I walked to work and it only took me seven minutes from door to door. Even during emergency calls, I could walk from my house and arrive in front of my department’s door even before hanging up the phone. I felt like I excelled in my medical career and my family life.

Even in the emergency department, we would see patients with cancer. Quite frequently patients presented with signs and symptoms suggestive of cancer, requiring admission or urgent referrals as outpatients to find answers. We also saw patients diagnosed with cancer come to our department with complications of the illness itself or from the treatment given. I was blessed that I could frequently pin down the diagnosis of cancer on patients who were presented to the emergency department.

After a short time seeing and examining a patient, plus reviewing some basic blood work, I was usually able to diagnose which patients had cancer. Even 9

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though I was unable to exactly specify the type of cancer, at least the initial impression was enough to be further pursued by the medical team in the ward.

During my clinical and teaching rounds, when we had patients with cancer I always said to my team of medical officers and interns, “We must understand how each patient feels and don’t forget the caregiver.” Again, the phrase arrogantly came from my “I understand how they feel” mentality.

Once, when my family and I were in the hospital area, a bald toddler boy in a wheelchair pushed by a woman who I assumed was his mother, went into the cafeteria. The boy had an IV line attached to his right arm. He was wearing a colorful facial mask. Even an untrained person would have noticed that the boy had lost a lot of weight. His mother looked exhausted and as they passed by our table, my wife said sadly, “I can’t imagine what the mother is feeling now.”

I answered, “It’s tough. I worked in a similar ward last time; I can understand how tired the mother really is. She must be strong if they want to get through this.

They must be compliant with the treatment protocols.

Sometimes, I just do not understand why certain patients refuse to go through an operation or certain treatment plans.”

Then I continued on about why I was so disappointed with certain people who only sought treatment or a medical opinion after the symptoms appeared.

They waited months before their first visit to a physician.

“I can’t understand why people ignore pain and only seek treatment after a few months. By that time, 10

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the cancer would have spread and the treatment plan gets very complicated. I even had a mother who would only bring her cancer-afflicted child who had fever in the morning after 5:00 p.m. just because the husband was working until then. Don’t even get me started on patients delaying their CT scans, missing their blood tests during treatment over simple excuses like no transportation, forgetting, and such.”

I was arrogantly expressing my exasperations. I remember a few times when I sounded my frustrations to the husband of a sick wife with ovarian cancer. She had decided to take traditional medications on top of hospital-prescribed drugs. I thought I knew everything about every single cancer patient and their caregivers.

Now I humbly admit that the words “I understand” or “We understand” and all those comments were made merely from an egotistical, naïve belief that I had enough experience dealing with cancer patients and my direct contacts with cancer caregivers. Never would I have thought of my family, but I was to be tested soon enough. It was about to restructure my whole belief about dealing with cancer patients and their caregivers.

During my journey in dealing with three cancers in ten months in my own family, the majority of my socalled knowledge and experience with cancer did not really matter. It did not help me have peace in my heart. It did not help my family to sail through this journey smoothly. Cancer gave us hard times and took enormous effort from the beginning in understanding and dealing with it.

Even to this day, whenever people say to my family, “Luckily Azlan is a doctor and he can look after 11

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you . . .” I answer back, “I am a physician and yet I am not prepared; imagine others with no medical background.”

I have changed from assuming I knew everything medically regarding cancer into a caregiver. These are the experiences I wish to share with you.

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Chapter 2

Three Cancers in Ten Months “Family is not an important thing, it’s everything.”

—Michael J. Fox I first met my wife when I was working at a parttime job in a bookstore owned by my uncle. I had just completed two years of studies that prepared me for university admission. The results would tell me either I was accepted into a national medical university or into Dalhousie University, Canada.

The bookstore was considered small compared to other well established ones. During my free time, I would sit at the counter near where my soon-to-be wife sat. She was a cashier in the store. We talked, made jokes, and quite frequently had lunch together. After about two months, I fell for her. We started dating and we felt strongly about each other. Two months later, I received a letter that I was accepted into the medical faculty at Dalhousie University. The whole study would take five to six years and it was fully sponsored by the Malaysian government.

I spent six years in Halifax, Nova Scotia, Canada.

It was literally halfway around the world. We spoke on the phone almost on a weekly basis. We wrote to each 13

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other (she wrote much more than I did). We rarely emailed each other due to her shift duty and the fact that during those days owning a personal computer was not cheap. Throughout those six years, I only came back to Malaysia every two years for about four months.

Our relatives and close friends could not believe after only four months of getting to know each other, meeting only every two years for six years, we were able to remain close and committed to each other. I finally got back from Canada with a medical degree. We got married before I started my internship.

We were blessed with three beautiful daughters and our life continued to grow and we are one happy, fun family. We supported each other, dealt with any problems together.

The first Cancer revealed He was my father-in-law. He was born in an emotionally deprived family and was brought up under the care of his father, stepbrother, and stepmother. He was denied formal education, causing him to be illiterate. If he were to question or cause any problem, he would be physically and psychologically abused. He never talked much regarding his traumatic past.

Because of those long years of suffering, he could commiserate with any misery of others. He had a gentle soul. He never raised his voice in anger and was unobtrusive, calm, and silent. Youngsters loved him because of his ever-ready smile and support for their creative needs. He would spend hours helping teenagers repair their bikes, football nets, and other cherished items.

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