In Our Own Words A collection of writing by people living with cancer
The Write with Us project grew out of a series of conversations held in 2011 between former cancer patient and writer Katherine Hughes, Dr Ian Lewis of Tenovus and Karen Lewis of the University of Glamorgan. Katherine had been diagnosed with breast cancer in 2006 and underwent a vigorous treatment plan that left her traumatised and in chronic pain. Following treatment, she tried to put her life together again, reengaging with friends and hobbies; singing, walking, and photography. It was not until she started to write about her experiences, and reflect upon the impact of cancer upon her life, that she really started to recover emotionally. Katherine had seen first hand the powerful effect that expressive writing could have upon the emotional wellbeing of people living with cancer, and so she worked with Karen Lewis and Tenovus to develop and pilot a creative writing programme that became known as Write with Us. The programme consisted initially of six evening sessions, facilitated by Karen and Katherine, bringing together a small group of people who had two things in common: they were all living with a diagnosis of cancer and they all wanted to write. These six sessions were just the beginning for this group, as they still continue to meet regularly on an informal basis and are enjoying supporting each other to develop their writing. This book contains some of the work they have produced. The Write with Us programme, including the production of this book, was funded by Tenovus as part of a suite of creative activities the charity is developing, which includes their Sing with Us choirs across Wales, walking groups, and art and pottery projects. Karen Lewis & Katherine Hughes Write with Us Facilitators September 2012
write with us
Contents Page Diagnosis by Malachy
Lymphoedema by Shirley
Cracen: My Demon by Katherine
At home as usual by Shirley
Fallout by Ailsa
Love by Malachy
Keeping things normal by Leeane
A mother’s diary by Ailsa
The place I’m in by Katherine
Mr. C by Leeane
The Struggle by Andrew
My wall of isolation by Liz
Diagnosis I didn’t want to look I didn’t want to view The different scenarios That could come into view There lying there Upon the bed Daring me to open them To run around Inside my head To cause chaos To cause dread Once released outside The box No control to take The knocks The knives are Blunt The wounds not Deep Just deep enough To cause me pain That I can live with And get up again The loss of blood Not too great The blood congeals The scars don’t Heal The space where fear Normally resides Is empty now No tourniquet can stop The flow No Compromise Malachy
Lymphoedema I knew it could happen, but then I forgot Until someone pointed it out My arm was quite swollen, my fingers as well Lymphoedema, there could be no doubt Just a year and a half down the line it had been So I should have been much more prepared The clinic provided both mitten and sleeve And my worries were openly aired The lymphatic system now needs to be drained And some things I had to be shown Exercise, massage and special skin care But now I do daily alone In spite of reluctant acceptance of this As these garments have to compress In helping the lymphâ€™s circulatory flow Now part of my life, I confess With a few broken nails and quite a bruised chin Through stretching the sleeve up my arm Now fully aware of new hazards ahead Could actually do me more harm Not wearing my rings, did upset me the most But I have an alternative hand So when in glad-rags, my mittenâ€™s removed Revealing my gold wedding band. Shirley
can I be of
‘Cracen’ : my demon Cracen once knocked at my door, A dark shadow with a hidden face, An intruder, taken in by apathy and ignorance, An imposter, undetected and unchallenged. Great fears arise when others knock – Has he returned in another guise? How can I be rid of him? Katherine
Kraken is a Norse sea monster
At home as usual 22nd February 2012
At home as usual 22 February 2012 To my Cancer I don’t want to address you as I would normally when writing a letter, as Dear Cancer, because I don’t feel like being polite. In fact, I would have preferred to have ignored your arrival in my life, altogether. But you had such an effect, and influenced my very actions and thoughts to such a degree, I have decided reluctantly, after all, to acknowledge your existence. Due to the totally unexpected way you crept up on me, and having given me such a dreadful shock, you can’t really expect me to think kindly of you. You arrived out of the blue and had such a devastating effect on my hopes and expectations of 2010. The year was completely spoilt. I decided to give you a name and thought very long and hard about what I would call you,
since I don’t wish to confuse you with a friend, because that to me you will never be, I am going to call you Martha. I have never known anybody by that name, in fact, the only time I have heard the name, has been in connection with Martha’s Vineyard, an island off the coast of America. Now a vineyard makes me think of vines, which remind me of you, because you can both become unruly. In fact, you can grow positively out of control, spreading out, like fingers, with flexible stems, climbing and twining then clinging onto whatever they come up against. Like you Martha, they don’t let go. You have an invasive habit, where nothing prevents your intended path of direction, except what I had done to me when you forced me to
undergo surgery, chemotherapy and radiotherapy. Martha, have you the faintest idea of the damage you have done? You nearly ruined my life, you’ve disfigured my body, you were responsible for lowering my resistance to infection, I’ve been reduced to tears so many times I’ve lost count, even in front of strangers and that’s embarrassing. I’ve been forced to endure the indignity of exposing my body to both men and women, and a photographer no less. I’ve never been one to go in for that sort of thing and I didn’t even get to keep the photograph, it’s kept for all and sundry to look at. I lost my hair, and it was so cold at night. All in all Martha, I have so much to blame you for.
like showers of meteorites zooming towards earth. I know if I’d been you I’d have been quite terrified, but don’t get the idea that I’m feeling sympathetic towards you, I’m not, I have had plenty of my own problems because of you. You’ve taught me a lot Martha, and as a result of your visit, I have decided not to take anything for granted. At least I feel I can cope with anything now. But Martha, please let your visit be the first and last. Your un-welcoming host, Shirley. .
In spite of holding no affection for you whatsoever, I know we’ve been through a lot, I mean, you’ve had many attempts on your life, having a scalpel so near to you must have been extremely frightening. I hope you were sufficiently scared Martha, not to put yourself through that again. That wasn’t even the end of it though, because any little tell tale reminders that you had been with me, were slowly poisoned with chemotherapy. That must have been too awful for words. Then to make absolutely sure you didn’t want to come back, fierce beams of high energy radiation were then aimed at you,
Fall-out It came away in my hand. I carefully placed it in a clear plastic bag that had recently housed a Marie Claire magazine - the big version, not the handbag size. It was already half full of hair. If I’d just let it fall out, the house would have been covered in a fine carpet of highlighted locks and it would have played havoc with the Hoover. In fact, it probably would have killed it. It was hard to believe that my big, thick mop would desert me, but it did. Rather than stay on the settee, absent-mindedly pulling my hair out, I decided to paint the hall, to keep my hands busy and distract myself. As advised, I’d been gradually cutting it shorter to help me get used to the impending loss. I started at Pre-diagnosis Long, then it was Pre-surgery Shoulder Length and finally Pre-chemo Long Bob. I then dispensed with all hairdressers’ services for the foreseeable future, along with shampoo, conditioner, serums, brushes, hair bobbles and straighteners. It’s very strange anticipating your own baldness, I couldn’t imagine it. I hoped I would be the one woman to defy science, but deep down I knew that wasn’t going to happen. There was a growing sense of grief as the date loomed and fall-out began exactly as predicted. After all the waiting, I just wanted to get it over and done with, like pulling a plaster off quickly. It began, I got upset, it passed. The next big hurdle was the loss of my eyelashes and eyebrows, which disappeared soundlessly a few months later, by which time, I was too ill to care. I started to look Chemo Ill, but not ill
like people expect â€“ grey and skinny, I was more round, shiny and hairless. The steroid bloat and menopausal flush made me look really quite healthy, strange, but healthy. A public visual declaration of my illness. New life has now returned to my head. Fresh, soft hair has taken me beyond the look of someone recovering from cancer. My previously empty scalp now houses a hair-cut again - the pixie look I was never brave enough to have before. As it grows a little bit more every day, so I start to relax and look forward to a future. However it looks. Ailsa
it would have played
havoc with the
Love You met your match When you picked on me You random killer You heartless thing You strike so swift So sure in yourself You will always win On the day you Showed your hand You never took Command of me You never left me On my knees gasping Unable to breathe You never got inside My head To run around To cause chaos To cause dread You never left me Asking the question Why? That question has Been asked There was one wall You could never Break down One heart you could Never tear apart That has already been done By a force bigger And stronger than You
you never got INSIDE
You insignificant thing Take your turn at the Back of the queue For I am consumed with Grief for a love I will never ever let go Of Malachy
Keeping Things Normal My cancer diagnosis changed my life forever, It changed me physically, mentally, and emotionally. I was about to embark on a journey into the unknown. I decided I wasnâ€™t going to tell anyone just yet, as I had to keep things normal and be strong for the sake of the family. I got myself a stunning short blonde wig, which I loved, as it reminded me of how I wore my hair in my early twenties. I felt so young. And I felt so normal. Wearing my wig, I knew I had cancer, but to the outside world I just looked like my youthful self. I got great pleasure from people telling me how marvellous I looked! I would start the day very much as I always had, up first to lay the table for breakfast. As soon as everyone had gone out, the wig would come off and be placed neatly on top of a large cream vase, its home when not in use; close enough to grab if an unexpected visitor knocked. Some days were hard, the tiredness, the sickness, the lack of appetite, and being too exhausted to speak to anyone. But I somehow got through. Two years on Iâ€™m very much back to normal and I needed this normality to prove and show
myself that I had won. I needed to show that I could turn up at work like I used to, cover for others when they were sick or missing, and be proud of doing a good job. My determination in getting my life back on track, was recently recognised at work, with an award for’ Outstanding Contribution.’ My prize will be to attend the Queen’s Royal Jubilee Garden Party. So on Tuesday May 22nd 2012 I will be a guest at the party at Buckingham Palace, on the second anniversary of the day my treatment started. Leeane
A Mother’s diary Tuesday 29th I can’t write much, got to put the light out soon as up early tomorrow. These appointments come round so quickly and they’re all first thing. We’ve got to be there by 8.30am. No matter which way you go, the traffic is dreadful so we’ll need to leave in plenty of time. It’s funny how quickly it’s all become so normal. The room is designed like a standard ward but with chairs instead of beds. Long thin windows show little slices of outside life, which is all a world away from our reality. We’re in a routine now, a cycle of clinic, blood tests and appointments. I drive her there and keep her company as they slide the canula into her hand and pump her full of the drugs that, God willing, will make sure the cancer has gone. She usually sits in the same chair, with me on one side and the nurse on the other. They can only administer the chemo in her left arm - so we all know our place now. I knit, she reads. She brings a pile of magazines as she can’t concentrate on books these days. We have a cup of tea from the trolley or buy a newspaper, occasionally we play the quiz set by the staff. And then it’s over and back home to wait for the dark cloud that comes with these terribly toxic drugs. We’ve got a little routine going now; I come the day before clinic and stay for about two weeks, until she starts to come out the other side. I bring things to do but nothing noisy so I don’t disturb her sleep. The only markers in our day are the meals I cook and the pills she takes. That’s how the summer has passed and become autumn. I put a brave, positive face on for her but it feels like it will never end. I wish I could do it for her. Right, that’s enough for tonight, better go to sleep and by this time tomorrow, we’ll have crossed another one off the list. We’ll get there. We have to, we have no choice. Ailsa
itâ€™s all become
The place I’m in I’ve been sitting in my cluttered office, with the computer pinging in e-mails, the fax spewing out unwanted messages, the pressure of working against the clock, the intensity of the next deadline. I’m oppressed by it all: the inadequate light, the cramped and overheated space. I feel jaded, fatigued, and worn down by my chronic pain. I need to escape. I have just been out for a walk around the Castle in Caerphilly. In winter I come here most days, sometimes skirting the whole perimeter on the east side, sometimes cutting through the park along the fringes of the moat to the west. Today it’s cold and dreary, snow hovering, drizzly. Not the sort of day that would draw people from their snug homes on a desultory Sunday afternoon. As I turn from the high street into the castle park I feel a sense of liberation. I can breathe. I can shrug off the burdens of the day just for a few moments and contemplate, alone with my senses and thoughts. I am tired, cold and in pain. But I’m here, just for this brief interlude, in a place that I chose to be.
I sense the mist on my face, inside my glasses â€“ its dampness moistening my skin and allowing the subtle breeze to brush away the effects of the central heating. I feel my lungs taking in the damp January air. I observe the swans gliding gracefully over the water, heads held high, webbed feet following languidly behind, whilst their cygnets explore the depths of the moat. I watch the geese and the ducks clambering ungainly onto the banks, beaks targeting small handfuls of stale bread, bickering at each other, and returning replete to their floating home. The mist enhances the contentment of the scene, giving it a sense of timelessness and innocence. I absorb the memory. The feast of tranquillity has restored me and I am ready to return to the routine of the day. Katherine
Mr. C, How dare you, how dare you come into my life and turn my world upside down! You weren’t invited, or welcome, but seeing as you invaded my privacy, it’s time for a few home truths. You may have thought you had the upper hand. You probably did in the beginning, as you turned me into an emotional wreck. I was a 45 year old woman, finding comfort in the arms of my ageing mother. How brave and strong she was for me, when she had already lost one daughter. I bet she cried many a tear when she was on her own. And then, my 2 teenage daughters… the hardest thing I have ever had to do was to say those words, “I have breast cancer’, and to see the tears in their eyes and the anguish in their faces. For that I will never forgive you. When my husband said to me, “you can’t go leaving me now”, I knew things had to change. My mind was made up. I wasn’t going anywhere. So the battle began. I needed all my strength for the fight ahead. I decided then, that you would never have the upper hand, and I was going to win. So don’t ever think about coming back...EVER. Good bye Leeane
The struggle You are always at the back of my mind Always staring at me in the mirror. You steal friends from me, great friends But you won’t ever take me. You may sometimes make an appearance You won’t always be friendly You can always count on one thing You will never be welcome. You have possibly been here for most of my life You have been with me through all the bad times And just because of all this you think you’re welcome. Just let me tell you this, you are not. You are always going to be an insect that claws away You have always lived in my head Trying to get into my mind to take over But you won’t ever do that you will never stop me from living my own life. Andrew
leaving me now
you can’t go
My wall of isolation I know pain has closed my mind for a while now. It is not physical pain. It is emotional pain. I have built a wall around myself. Family and friends have tried to come through my wall, but it protects me from my pain and grief. All these emotions belong to me and I am not ready to share them. I do not wish to hurt or offend, but the wall is up high and safe. I have spent a lot of time recently within my wall. I am beginning to feel ready to look beyond it. I chose not to isolate myself any longer. Tenovus, the cancer charity, has offered me new opportunities to venture outside of my wall. And I have taken them. Counselling, creative writing and the Sing for Life choir have all helped me break down my isolating wall. It has made me realise just how much is out there if I choose to look. There I’m not the victim. I don’t need pity and these different opportunities remove me from my situation and allow me to be ‘me‘, without judgement. My family and friends would dearly love to come through my wall to help, but they cannot take my grief away. And I will need them when the time is right to be there for me at the other side of the wall. Liz
Name: Ailsa I was born and brought up in Swansea and moved to Cardiff in 1998, where I have lived and worked ever since. I was diagnosed with breast cancer in May 2011 and underwent surgery, chemotherapy and radiotherapy. The Write With Us project started about six weeks after the end of my treatment and it really helped me move forward in my recovery, having already enjoyed creative writing for many years. Name: Andrew Biography: I am 21 and I live in Bridgend. I started writing while still at school and I have published many poems and a short story. I was diagnosed with a brain tumour at 15. I wanted to meet other people who have been through a similar experience and who enjoy writing. The course has motivated me to do new things including getting more involved in volunteering.
Name: Katherine Biography: I am from Caerphilly and was 57 when diagnosed with breast cancer. After my treatment I resolved to restore my well-being through exercise, planning and pacing, healthy eating, singing and photography. I started creative writing as a therapy in 2009, and wrote a book, Achieving Wellbeing after Breast Cancer, published as a CD by Tenovus in 2011. The idea of a creative writing course for cancer survivors emerged from this.
Name: Leeane Biography: I was 45 when diagnosed with breast cancer and after treatment I decided that work was my way of moving forward and getting my life back on track. I started the creative writing course, as it was being held at my place of work and through this I met lovely people who are now very much friends. The creative writing has helped me to address my cancer in a different but positive kind of way.
Name: Liz Biography: I am 51 and was diagnosed with breast cancer in September 2011. I have really appreciated the writing group. It has given me the confidence to put my thoughts on paper. Also I have met lovely people who have cared and understood when the going has got a bit tough. You see, unfortunately my husband Ian, aged 53, was also diagnosed with a sarcoma of the foot in June 2011. Tenovus has supported us, practically and emotionally. Thanks to their amazing team we have been able to face each day with strength.
Name: Malachy Biography: I am 65 years old and I live in Cardiff. I have a Creative and Professional Writing Degree from Glamorgan University. Seven months ago I was diagnosed with cancer and I was unsure about joining the writing group, because I was about to start my treatment at Velindre . I was also trying to deal with the shock, of my wife dying eight months before I was diagnosed with cancer. However, I soon realized what an amazing project this is. I feel so close to this group of people and yes it is because we are all cancer patients. It has given me the freedom to express how I feel. I hope this project carries on and grows with me involved.
Name: Shirley Biography: Although born in Bristol, I have lived in Wales for over 60 years. I married at 21 and had a son and daughter, but was widowed at 31 after my husband developed cancer. I am a diarist, enjoy writing poetry, letter writing, cookery, travel, photography, reading and gardening. For ten years I did voluntary work with cancer patients after retiring, and became a Samaritan after my son died from a malignant melanoma. Two years ago I was diagnosed with breast cancer aged 70 and through counselling with Tenovus I was introduced to â€œWrite With Usâ€? for people like myself, who enjoy writing.
At Tenovus our aims are simple: to help prevent, treat and find a cure for cancer. We offer support, advice and treatment for cancer patients, information on cancer prevention and funding for research to improve the lives of people with cancer. We do this where it is needed most right at the heart of the community.
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Registered Charity No. 1054015
A collection of writing by people living with cancer from our Write with Us support group.