This is my story: I’ve got cancer

This is my story: I’ve got cancer. “The Veronica Project”: an ethnographic study of the experiences of people with learning disabilities who have cancer [1]

AUTHORS

John Davies and Irene Tuffrey-Wijne, Senior Research Fellow, St George's, University of London

Accessible abstract

• This is the story of John Davies. John has learning disabilities. He has cancer.He tells his story in his own words.
• John found a lump on his penis (willie). It was cancer. He didn’t go to the doctor. He left it too late. Now he is very ill with cancer. Maybe he will die of it. If he had gone to the doctor sooner, he could have got better.
• This is what John is telling you:
  • If you find something wrong with you, you should tell someone. You should go to the doctor.
• We did a study. We wanted to find out what it is like to have cancer. We wanted to find out what helps people who have cancer. We listened to their stories. There were 13 people in our study. John was one of them. His story helps us to look after people with cancer better.

Introduction

As people with learning disabilities enjoy increased longevity, there is a rising incidence of age related illnesses, including cancer (Hogg & Tuffrey-Wijne, 2008). Population studies have indicated that cancer accounts for up to 16% of deaths in this group (Hollins et al., 1998;Patja et al., 2001), with the real possibility that the true figure is higher due to missed diagnosis. Provision of timely and satisfactory cancer care for people with learning disabilities is therefore a matter of interest.

A literature review revealed only one study with a specific focus on cancer care provision for people with learning disabilities, from the perspective of carers and professionals (Northfield and Turnbull, 2001). Other studies have focused on carers' experience of terminal care, especially in learning disability services (Brown et al., 2002; Todd, 2005). These studies have yielded invaluable data and insights. However, a continued exclusive focus on family and staff experiences may lead to a body of research that is unrepresentative and biased in nature. Without consideration of the viewpoints of people with learning disabilities themselves, there is a possibility that their cancer care is based on assumptions made by family and staff. Studies of the non-disabled population have shown significant discrepancies between the views and opinions held by patients and those of relatives or professionals with regards to cancer and palliative care (Payne et al., 1996; Singer et al., 1999; Steinhauser et al., 2000; Catt et al., 2005).

This paper presents the story of one participant in “The Veronica Project”, an ethnographic study with a particular and unique focus on how people with learning disabilities experience cancer. The Veronica Project endeavours to establish the needs of people with learning disabilities who have cancer, their experiences of health and social care services during the course of their illness, and subsequently to identify ways in which they can best be supported. Data collection methods depend largely on the wishes and abilities of the participants; for most participants, this involves extended periods of participant observation (see below for further details on the study).

John Davies was a man with mild learning disabilities who was keen to tell his story in his own words. Irene Tuffrey-Wijne (the researcher, a nurse with extensive experience in both learning disabilities and palliative care) had many conversations with him over a period of five months, and helped him to tell most of his story into a tape recorder. She condensed this into a shortened, chronological story, without changing any of his actual words. This was presented to John who did the final editing of the text.

John’s story

“Hello, my name is John Davies, and I am going to tell you my story. I’ve got cancer, and I don’t want to happen to other people what happened to me. I left it far too late.

I am 44 years old. From the age of one, we discovered that I had a problem with my legs. But the hospital kept saying there’s nothing wrong. They realised too late that there was a problem. I got cerebral palsy in my leg, which is not something that I’d wish on anybody. Name calling is the worst thing that happens, and it’s no picnic being called a spastic. But then I’ve learned to think, “sticks and stones break my bones”…and I just kept plodding along, going along in my own little way. But apart from that, I had an amazing childhood. There was lots of love with my mum and my three brothers. My mum raised us the best way she could, always being there when something happened or there was a problem. She was a rock, and is still there, 44 years on. I’m glad to say that I have a wonderful relationship with my mum.

I went to boarding school, then tried a few jobs out, working at MacDonalds and in a biscuit factory. Then I decided that I wanted to see what the world was like outside. So I walked away from my family for eight long years. They never knew where I was, and I didn’t know where they were. I’ve been homeless, I slept on the streets, I begged for money when I had no food. Life was tough, but then again, in amongst all that was the good bits. I started singing in various pubs and clubs. Then I decided to see what it would be like working with people who had disabilities like myself, so I started volunteering in respite centres, working with people with disabilities that were worse than my own. I made some wonderful friends along the way. All the while thinking that one day I would try and find my mum. It’s the best thing I’ve done – I got back in contact with my mum and found out that I’ve got nieces and a nephew. I got myself a little flat.

And then I became seriously ill. Quite a while ago I went to the doctor, and I was complaining about a pain when I went to the toilet. The doctor said that it was a urine infection. So they gave me some antibiotics and that was that. Then in August I noticed a lump on my willlie, and I just thought it’s an infection, the tablets will help it clear up. But it got worse. I just kept thinking it would get better, but all the time it was getting worse. I still did nothing, kept telling myself it would be alright. I never went back to the doctor. I was frightened of what they were going to tell me. And I don’t like hospitals at the best of time. I just thought “No it’ll be alright, it’ll work itself out”. Even when it was really big I still thought it was going to go away. I tried to hide it, because I didn’t want people poking their nose in.

I really found it difficult when it got worse. I found it difficult to hide because by then it was noticeable not only to me (I could see it), but everybody else could smell it. There was a bad smell coming, and it didn’t matter how many times I got in the bath. One day I got into the bath three times…I got in the bath, got out, dried off, got back into bed, and then it would smell, so I’d get back in the bath. Then if I was going somewhere like my mum’s, I would put pads on. I bought Tena Lady pads with stitched-in knickers. I put that on to hide the smell. Then I put two pair of pants on, so that if the bottom one got wet with leak I’d have a spare pad and spare knickers to put on. Then I needed to put the belt on as far as I could do it to stop the trousers from falling down. Then I’d walk to the bus stop. Then I’d get out of breath. Then I’d sit on the bus. Then get off that, and get on the train and go round the corner to my mums house, but before I’d get to the house, I’d put loads of aftershave and deodorant on to stop the smell. But then one day, the smell was that bad, my mum said I hadn’t cleaned my bum properly. I remember at Christmas time I was going to my mum’s for Christmas dinner, and I didn’t want to sit next to anybody because of the smell. I was worried that they would notice it. I worried about the chairs I was sitting on, because of the leaking. I was worried about the chairs getting messy.

And I got really thin. People think I went on a crash diet, which I didn’t. You see, some people didn’t understand when you have cancer... I didn’t know then what I know now, but when you have something serious like that, it doesn’t matter how much I was eating. I was still losing the weight because there was something inside killing me.

My mum noticed that I was getting skinny. I said not to worry, that I was OK. But I wasn’t really OK at all. And I was very tired. In the end I just went home and went to bed, and I didn’t get out for four days. My mum said to my brother: “You go round and see John, I am worried about him.” So my brother came round, pretending that he was just passing by and that he wanted a cup of tea. Well, if he wanted a cup of tea he wouldn’t have got one because I had the tea bags but no milk: I hadn’t been out of bed for four days. I just had bottles of water beside me to drink from, and I was using a bucket to do wee-wee. There was nothing coming out the other end because I weren’t eating anything. I’d let it get untidy and there was a bad smell because I couldn’t empty the bucket that had the wee-wee in. I hadn’t been able to keep the house clean, everything that was in the house smelled of wee-wee. Later on the council had to come and fumigate the whole house. When my brother came he just took one look at me. I tied the coat round me but the coat fell off and he saw this lump, and this stuff coming out of it… It made him feel sick. He just got on the phone and called the ambulance there and then. And I got carted off to hospital.

I can’t cope with the fact that my brother saw the way that I was when I was taken into hospital. It’s just something that’s stuck in his head. I have watched him. He was crying, and said “Mum, I can’t describe what I saw that day. It’s in my head when I go to bed and it’s in my head when I wake up”… He’ll never forget it, and I wish there was something that I could do to alleviate the pain that he must be going through. My family have all said that they would take my pain away if they could, and they would all have my illness, but I wouldn’t wish my illness on anybody. But I am glad that my brother came. The doctors said that if he hadn’t gone and sent me into hospital, I would be dead now. So really I am grateful to my mum for sending my brother round.

A doctor told me that I’d got cancer, and at first you think, oh dear, cancer – that’s a terrible word. I got diagnosed in March with penile cancer, and then in April I had the whole lot taken away from me. My bits and pieces, my bladder and my bowel, everything. They didn’t know if I was going to live or die. I often think that I’m going to beat it. The doctors said that they had taken all the cancer away. Now I take one day at a time. Life is too short, so I take one day at a time. You try to make the best out of a bad thing, which is what I have been trying to do.

I think the worst bit that came out of all of this was having to tell my mum that I’d got cancer. At first I thought I wouldn’t tell people, but then I just braced myself and said to everybody that I know “I’ve got cancer”. I know it is a terrible word, but you’ve got to get used to it. And they cried, and I cried….I cried enough tears to fill a river. But then I said, “Look, don’t cry anymore, go and have a cry somewhere else. Then come back, give me a cuddle and tell me how you’ve been, and what’s going on in the world, because that’s what I need to know. Tell me something nice.”

We carried along, and I got better again. The bandages came off, and because there had been so much surgery on my legs, I had to start walking again, so with the help of physiotherapy I managed to walk. They got me somewhere to live, and they were going to let me out of hospital, but it wasn’t ready for moving into because it had to be adapted. I couldn’t go back to my old flat because that had stairs in it, and they wanted somewhere for me to have no stairs, so they found me a ground floor flat. I had to wait a bit for it, and they wanted the hospital bed, so they shoved me in a residential care home, an old folks’ home – I was the youngest person in the room. But now I am actually living with my mum. She wants me to, and I worry sometimes that it is too much for her, but I know that she would worry more about me if I lived somewhere by myself.

Things were OK for a while, but then it all started to leak again, and I had to go back to hospital. They did some more tests. Then came the bad news: the cancer had come back. It was awful. The worst of it was telling my mum. She was so upset. I cried as well, we all cried. I really thought the cancer had gone, but they said that a little bit has come back. They said they were going to give me chemotherapy to get rid of that little bit. They let me go home for Christmas, and then started the chemo in January.

Since then I have been in hospital a couple of times. Once I got really sick, I was vomiting in the street. I could see the people in the bus looking at me and laughing, they probably thought I was drunk. And I got terrible diarrhoea and stomach pains, and fevers. So they sorted me out in hospital, and then I could go home again. The pains are still quite bad sometimes. I am taking morphine now.

It can be hard. Sometimes I sit in the hospital bed feeling miserable, and I think: “Right, in the next ten minutes they’ll all turn up to visit me”, so I take a deep breath, put a smile on, and I sit there for half an hour or so talking about silly things. I’ve done that plenty of times, make out that I’m alright when inside I’m not, I’m just fed up.

I’m looking at “Last Chance Saloon” at the minute, because if the chemo doesn’t work, then it’s going to kill me, so I don’t know how long I’ve got left… and I want to do so many things, and tell so many people things before I get taken away. I just can’t stop telling my mum how much I love her, because I’m going to miss my mum, and it’s going to be a terrible wrench. I am not ready to go yet. There are things I want to do in my life. But I hope it’s quick if it comes. I hope it is in my sleep. And I want it to be at home with my mum. I do think about where it is going to happen. I worry about my mum. They don’t want me to die in pain. That’s what I don’t want: having them see me in terrible pain. But the doctors and nurses have said that I don’t have to die in pain. I want to go in my sleep.

But apart from that, I’m alright… It’s no good moaning. There’s a whole world out there, so much to do and to see, what should I be sitting here for feeling sorry for myself? You need to make the best of it.

If there’s a way of this story helping somebody else, if it can help somebody to possibly save themselves from all the stuff that me and my family have been through, then I’ll be happy. At my funeral, I only want flowers from my mum and my brothers. People can give money in my name to Cancer Research UK, so they can do more research like the Veronica Project. Because it is important, it is a good thing, to find out about people’s stories, and to make more books about cancer that are easy to understand. Sometimes you get a leaflet about cancer and it’s all doom and gloom, all the things cancer can do to you, and you think “Oh my God”.  I want to hear stories about cancer that make me laugh and that make me sad, stories that are told to me in a simple way so that I could understand it.

So this is my story. This is a real story that comes from the heart. I did not make any of it up. What I want to say to you is this:

Look, if you notice anything different to how it was before, then for God’s sake, go and see someone! I left mine too late, but you need to go to the doctor. The two things I don’t like in life are going to the doctor, and going to the dentist. But for God’s sake, you’ve got to go and see somebody and say “Look…It’s only small”. Mine was small – but then mine got big. Believe me, you do not want to go through what I’ve gone through. I have sat there and watched my family suffer tremendously. Sometimes I think: I wish… But you could wish a thousand wishes, and there is nobody with a magic wand to make it better. Sometimes I look at myself and think, “I lost my dingly-danglies. And I could have saved them.”

I think I was put on planet earth to help people. So if my story can stop someone from getting cancer, who knows…If that helps, then I am ever blessed.”

John Davies died in a nursing home on 7^th September 2006, four months after completing work on this story. He had recently moved into the home as his mother’s health had deteriorated, and he was happy there. John felt strongly that with the publication of his story, he had achieved an important goal, and giving meaning to his illness and impending death. John was an extraordinary person, full of consideration for others. He is sadly missed. See also ‘In Memoriam’ (Tuffrey-Wijne, 2007).

The Veronica Project

The Veronica Project was inspired by Veronica Donaghey, a woman with Down’s syndrome who developed lymphoma and was keen to tell her story. Although Veronica sadly died of her cancer, her story was eventually developed into a pictorial cancer information book: “I’d like the book to be for doctors to read it. A Down’s syndrome girl has had cancer twice and pulled through… I’m not a burden. I don’t want to be a burden. I help other people. I put something back. It’s for everybody really.” (Donaghey et al., 2002).

The Veronica Project is built on the premise that through people’s own narrative, important insights will emerge not only about their experiences, but also about their needs, the barriers they face, and the contributions they can make. John’s narrative is a powerful and moving reminder of the importance of listening to the story of people’s lives. There have been 13 participants, who were visited between 2005 and 2008. The study used ethnography as a way of seeing the world from participants’ own perspective. It has an exploratory, holistic multiple-case study design (Yin, 2003) in order to induce theory about how people with learning disabilities experience cancer, and how cancer and palliative care services can best support them. Grounded theory methods were used to guide both data collection and analysis (Strauss and Corbin, 1990).

Case studies have been effectively used in the past to highlight best practice, and to inform health care services. They allow for the flexibility that is needed when including people with learning disabilities, whose needs will be highly variable, as participants. Each 'case' consisted of a person with learning disabilities who has a cancer diagnosis, within his or her real-life context. The depth of investigation within each case depended on individual circumstances and sensitivities. There was no “typical” participant, although John was unusual in his ability and desire to verbalize his story. In contrast, another participant had severe learning disabilities, with no hearing and no speech; he lived in a residential home after a lifetime of institutionalization, and had not been told that he has cancer. In his case, data collection consisted of weekly visits over a period of several months, spending time with him at his home, his day centre, and during hospital visits. During the course of the study, the researcher also had conversations with staff and relatives in an effort to understand the details of the participants’ lives, attended review meetings where appropriate, and studied case notes. Participants’ degree of learning disability ranged from mild to profound. People with cancer at any stage were included. At the end of the study, eight participants had died; three were in remission, hopefully cured; and two were living with cancer in the terminal stages. Apart from John, one other participant (Amanda Cresswell) has published her story in her own words (Cresswell and Tuffrey-Wijne, 2008)

Ethical approval was granted by the South East Multi-Centre Research Ethics Committee, and a Project Steering group (which includes three members with learning disabilities) helped to ensure that the study is carried out with continued attention to ethically sensitive issues. The study was funded by Cancer Research UK.

Note on ethical issues

John Davies is the author’s real name, not a pseudonym. This is at John’s request and has been approved by the appropriate Ethics Committee (MREC) as well as by his family.

John and Irene wrote this paper together in 2006, during the first year of the Veronica Project. A total of thirteen people took part in the Veronica Project between 2005 and 2009. All had learning disabilities; all had cancer. Eleven people died. Their full stories, including John's, are told in the following book:
Tuffrey-Wijne, I. (2010) _Living with learning disabilities, dying with cancer. London: Jessica Kingsley.

One other participant in the study, Amanda Cresswell (who survived cancer), published her story in her own words:
Cresswell A., Tuffrey-Wijne I. (2008) The come back kid: I had cancer, but I got through it. British Journal of Learning Disabilities 36 (3), 152-156

The following academic papers describe the final results of the Veronica Project:
Tuffrey-Wijne, I. (2009) Am I a good girl? Dying people who have learning disabilities. End of Life Care 3 (1), 35-39

Tuffrey-Wijne, I., Bernal, J., Hubert, J., Butler, G., Hollins, S. (2009) People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice 59 (564), 503-509

Tuffrey-Wijne, I. (2009) The preferred place of care for people who are dying. Learning Disability Practice 12 (6), 16-21

Tuffrey-Wijne, I., Bernal, J., Hubert, J., Butler, G., Hollins, S. (2010) Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nursing Times 106 (19), 15-18

Tuffrey-Wijne, I., Bernal, J., Hollins, S. (2010) Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Oncology Nursing 14 (3), 224-230Further Reference List

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Cresswell A., Tuffrey-Wijne I. (2008) The come back kid: I had cancer, but I got through it. British Journal of Learning Disabilities 36 (3), 152-156

Donaghey V, Bernal J, Tuffrey-Wijne I, Hollins S (2002). Getting on with cancer. London: Gaskell/St George's Hospital Medical School.

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