The Come Back Kid : I had cancer, but I got through it
Amanda Cresswell, Peer Advocacy Support Worker, UK, and Irene Tuffrey-Wijne, Research Fellow,St George's, University of London, UK.
I had cancer, but I got better. This story is about what happened in my life, and about having cancer.
Abstract
I was born with cerebral palsy and learning disabilities. My mum died of cancer when I was 14. It was difficult because she never told me that she was ill. It would have been better to know.
I went to my GP when my cancer started, but he kept saying there was nothing wrong. In the end, I was taken to hospital because I collapsed.
The first hospital never explained anything to me. I didn’t know what was going on, and I was very scared.
My doctor in the second hospital told me I had cancer. He explained everything. My doctor and carers helped me to decide what to do. I had chemotherapy (strong cancer medicine in a drip) and radiotherapy(a cancer treatment which is a bit like having an X-ray). It was hard but I knew I didn’t want to die.
My life is wonderful now. Having cancer made me stronger.
Doctors and nurses should know that it is really important people are told about their cancer. They should tell people in a way that they can understand.
Key Words
Learning disabilities, narratives, life history, cancer, radiotherapy, chemotherapy, resilience
I had cancer, but I got better. I have been free of cancer for several years now, which is wonderful. I want to tell you my story, because I think it will help people to hear about it. I am going to tell you about all the things that have happened in my life, not just my cancer, because I think it started as soon as I was born. That’s when I had to start fighting. I have had a lot of difficult things in my life, but I think it has made me strong.
My childhood
A baby with disabilities
When I was born I was just one and a half pounds. I was very small, very tiny. I was in an incubator, and I just got a little tiny bit of brain damage, and cerebral palsy. Not long after I was born I had a brain haemorrhage. My mum called the hospital priest and I was christened, and everyone was by my bedside, because they really didn’t think I would survive. But I proved everybody wrong– I did survive! My mum told me all this when I was old enough to understand.
One day I was in the car with my mum and dad, and this van pulled out of nowhere out of the side street and went straight into our car. In those days, they didn’t have to wear seat belts. My dad went through the windscreen, but on the way to hospital, he died. My mum went through the windscreen, and she had her arm broken in six places. She went to hospital, but all she kept saying was, ‘where’s my baby, where’s my baby? and they said, ‘what baby? There’s no baby’. When they went back to look for me, because I was so small, I’d rolled right underneath the seat, and I was screaming. I was 18 months old.
I went to live with my auntie because my mum was in hospital. I lived with my auntie for a long, long time until mum got better. My first memory was that my mum had to be my dad as well as my mum. She used to spoil me. She definitely did the best that she could for me. Each birthday, there was a party and all my friends were invited from school. There used to be about fifty children from my class in the house… it was chaos, but it was good fun!
Having a disability was more difficult when I was little than it is now, because I couldn’t speak properly – I found it difficult to speak. I wasn’t walking for an awful long time. I was in a wheelchair for a long, long time. The doctors said I’d never be able to use my left hand, but I can do now. To give up would be the worst thing, because if you give up, there’s nothing there, is there? That’s not me. I definitely don’t want to give up, I keep trying. I did lots of exercises. I had physio until I learnt to use my hand, and with my legs as well. I had quite a lot of operations on my leg, so I was in and out of hospital loads of times.
It was difficult at school, because a lot of the children didn’t understand. They were nasty to me, because I couldn’t walk as good as them, and I used to drop things and fall over quite a bit, and the children were calling me names. So my mum looked for a different school for me, a special school, and that was OK, I enjoyed that.
My mum died of cancer
Having time with my mum are my happiest memories. They were the good times, going on holiday with her, all the things that mothers and daughters do. She died of cancer. She had a brain tumour. That was difficult for me. I was about 14 years old. And of all the things that have happened to me in my whole life, the most difficult thing was that she didn’t tell me that she was sick. I still regret it now. She never told me that she was dying. I don’t think she really wanted me to know what was going on. I know maybe it was a shock for her finding out that she had a brain tumour, but she could have told me afterwards. She wanted to protect me. Of course, things like that are upsetting, but it’s definitely better to know. It would have made it a lot easier if she had told me, because when she started getting even worse, the nurses used to come in from the hospice, and my mum didn’t even want me anywhere near her. She used to really be in a bad mood all the time, she use to shout at me, it was horrible. And of course I didn’t understand why!
I was the one who actually found her when she died. She stayed at home, and she wanted to sleep so she told me to leave her, and I went back up after an hour and made her a cup of tea, and then I found her. That was very difficult.
I went to live with my aunt, and then when I was 15, they found me a place with a foster carer. That was OK for a couple of years. But then when I was about 20 or 21, my carer started hitting me and taking my money. She was very strict, and wouldn’t let me leave the house. When she went to visit people, she would lock me in. So one day I just didn’t want to put up with it anymore. I had to leave. I wasn’t a naughty person, I just had to run away. I was a bit stupid, because I didn’t take any money or clothes, just what I was wearing. I went to the Social Service office and told them about it, and they found me an Adult Placement with a couple and their family. They were nice, and I stayed with them for 8 years. I was living with them when I got cancer.
My cancer
The doctor said there was nothing wrong
Six years ago, I was working with a theatre company, and we were away in Wales doing a workshop when I was starting to feel unwell. I had no energy, I felt really tired, I kept drinking more than usual, and I just wanted to go and have a good sleep. I carried on doing the workshop, but I still wasn’t feeling 100%. Maybe I should have gone and got myself checked out before. The staff were worried about me. So I went to the doctor, and he said ‘oh, there’s nothing wrong with you’. He couldn’t find anything that was wrong with me, and I knew there was something wrong, because every time I went up the stairs, I was having problems breathing. I had this cough, and this cough was a bit like whooping cough. I went back to the doctor, and he kept saying there’s nothing wrong, but I knew… With the theatre company, we had started doing A Billion Seconds, which is a play about cancer. So that made me think. I still wasn’t feeling right, I wasn’t eating properly, I lost a lot of weight. I went back to my doctor with my social worker, and he still said ‘there’s nothing wrong with you’. I went away for Christmas to my cousins, came back on New Year’s Eve, and collapsed on the train coming home. I managed to get home to where I was living, and then the family called an ambulance and I was taken straight to hospital. The family came with me and they stayed with me until very late at night.
I didn’t know what was going on
They did a quite a few tests, but they still weren’t 100% sure what was going on. I spent the whole night in casualty, and nobody was telling me what was going on apart from this one nurse who was really, really nice. She came in and was checking on me every five minutes, and she asked me whether I knew what was going on. I said, ‘I’m sorry, I still don’t know what is going on’. The nurse got really annoyed with one of the doctors. She said, ‘look, this person has got a learning disability, she’s left on her own, she’s scared’, and the nurse stayed with me then. (Later, when my carers read this story, they reminded me that I stayed in casualty, which was in the basement of the hospital, for three days. It was freezing. I’d forgotten all about that!)
When they finally found me a bed, they put me in the old people’s ward, which wasn’t very good at all. I’ve got no idea why they put me on that ward, whether it was because I had a learning disability and they thought ‘she won’t care where she goes’, or whether they were short of beds, but it wasn’t the right environment for me. No way. They were trying to find out what was wrong with me. I had to have the cannula in my hand, I was on a drip, and that had to be changed quite a few times, and at night it was so uncomfortable and I couldn’t sleep. Sometimes I was thinking about my mum and I was crying. There was this old lady on the ward, she wasn’t nice at all, she was saying, ‘if you was my daughter I’d give you a good slap’. It was horrible. The nurse said ‘no, you can’t talk to this patient like that, she’s been through enough’. The old lady said, ‘she’s acting like a baby’ and the nurse said, ‘look, she’s scared, she’s got nobody, she’s got no close family near her.’
I didn’t like that hospital. They talked to me, but they were using language that I didn’t understand, and I was saying, ‘can you say it in an easier way’, but I don’t think they really understood how I was really feeling. I was crying, I was feeling really down and depressed. I didn’t have a clue what was going on and I was very, very scared. So I was glad when they transferred me to another hospital after three or four days. But it was also very frightening, because they didn’t tell me what was wrong with me. All they said was, ‘we’re transferring you because they’ve got better facilities in that hospital’.
My doctor told me
I was put in a side room, in a room on my own, because they didn’t know if I would infect any other patients. It was a bit scary, because at the time my carers hadn’t arrived to this hospital yet. (They later said that they weren’t told I had been transferred to another hospital. They only heard about it afterwards from my social worker).
Then the doctor told me on my own what was wrong with me. He came and he introduced himself, and he asked me did I know what was wrong with me, and I said ‘no, I don’t know, the other hospital didn’t tell me what was wrong’. And then he said to me, ‘you’ve got Non-Hodgkin’s lymphoma.’ And I said to him, ‘what is that?’ and then he said to me, ‘it’s cancer in your lymph glands’.
I was very shocked, and then he was asking me ‘who do you live with’, and things like this. I had a phone in my room, and then my carer phoned me and he said do I know what’s wrong with me yet. I said, ‘yes, this is something, I am going to tell you, but I can not tell you over the phone’, and then they said, ‘right, we’re going to come and visit you, is there anything you need?’ I said to him, ‘please bring the bible’, because I wanted to pray. Then he passed me to his wife, and she said ‘Amanda, are you ok?’ I nearly started crying, I said, ‘I can’t tell you over the phone’. Then they spoke to a doctor, and then the doctor wouldn’t tell them because I said, ‘please no, don’t tell them, this is something I have to do myself, it cannot be done over the phone’. When they came, I just burst into tears. I took a few minutes – I had a big glass of water, and then I told them what was wrong. I just felt that I had to do that myself – that was something I had to do myself, definitely. And I’m glad I did.
I didn’t know what lymphoma was until they explained it to me. The doctor explained to me that there was a tumour growing inside my lymph glands. My doctor is fantastic, he is very, very nice, and he said it’s nothing that I’ve done wrong – any young person can get it, and they don’t understand why you get it. I told him that my mum died of a brain tumour, and I asked him, ‘is it hereditary?’ He said, ‘sometimes if somebody has had cancer, not in all families, but in some families you are likely to be exposed to it’. Well, so, I’m just lucky that he got it in time. My biggest shock was that this tumour was growing inside of me, and I didn’t even know it was growing inside of me. Especially when he showed me how big it was on the X-ray. It was the size of a football. And the reason I couldn’t eat properly was because it was pressing right up inside me.
Then there were lots of meetings… It was good that they explained all my options to me. I had to have a big meeting with the family I was living with at the time, and my social workers, and my doctor said, ‘if you don’t have chemotherapy, within three days you could be dead’. And he asked me what I wanted. I said to him, ‘I don’t want to die like my mum, it was too late to save my mum, and I’m too young to die’. I was only 30 years old. I knew I didn’t want to die. I knew that I wanted to live. I was thinking of my mum then.
Treatment
I knew what chemotherapy was because my mum had chemotherapy, but because they found her tumour too late, unfortunately, it didn’t work for her. My doctor also explained it to me. He said that I’ve got to have a needle in my hand, and then this drug would go all through my body, and kill the bad tumour, and make me better.
I didn’t like the chemo. I don’t like needles, I’m not good with needles at all. I was also on steroids, which was like a liquid I had to drink. And I was on a drip as well, because I wasn’t drinking enough. The worst thing for me being in hospital was when they did the bone marrow in my back…oh, that was so painful. I asked if it could be numb first before I have it done, but unfortunately, he said no, because the sooner it’s done the better. So I said, ‘ok, can I have a nurse with me’, so he went and got one of the nurses, and the nurses stayed with me, and then she was talking to me and she was holding my hand because I was getting really quite hot and sweaty, and then he did it… afterwards, the nurse gave me some chocolate out of my locker, and then I just sucked some chocolate, and that helped.
I got out of hospital after about a month, and I had chemo as an outpatient over a number of months, going backward and forward. I had to go by taxi there and back, because I wasn’t allowed to mix with anybody in case I picked up an infection. That was my lowest time, because I couldn’t even have my friends back at home, because of the infections. I was allowed to speak to them over the phone, which was good, but it was not the same – I wasn’t allowed to go out on my own.
When the chemotherapy was finished I had to have radiotherapy. I was a bit worried the first time I went, because I didn’t really know what was going to happen. They explained to me that they wanted me to have radiotherapy just to make sure that they got all the cancer cells, and they didn’t want it to come back. My doctor just wanted to be extra, extra careful. Radiotherapy wasn’t so bad. With the chemo I had all the side effects, I was sick, my hair fell out… I had a wig. I’ve still got it, and sometimes I still wear it. Like when I’m a bit lazy and I can’t be bothered to do my hair! The only side effect I had from the radiotherapy was that my taste-buds have changed. Even now, certain food that I used to like, now I can’t even stomach it.
When I was really upset, I used to think, ‘come on Mum, why is this happening to me’, and I used to talk to my mum – I know that might sound really daft, but that’s what I did. And when I was in lots of pain, I just used to say, ‘Mum, I don’t want to be here any more, I want to be with you, and with my dad’, but obviously, it wasn’t my time to go.
Having good friends definitely helped me, and having the help from my carers and from my social worker. My faith also helped, because I think that if I didn’t have that, it would definitely have been harder for me.
The best time was when I went back to the hospital, and then they said, ‘you’re in remission’. I was just so happy, and I was just really crying then. It was really, really wonderful.
I don’t think about the cancer coming back,because my doctor said to me that he’d caught it in time, and he said, once it has gone past 5 years, there could always be a risk that it could come back, but hopefully now they’ve caught it in time, it definitely shouldn’t come back. And I know when I really don’t feel well, then I always go straight down to casualty.
How can we make things better?
I really hope that other people can learn from all this. I want to help others. So now I am doing some teaching about cancer. I did teaching before, I used to teach medical students at St George’s Hospital in South London. Now I go to hospices, and I tell doctors and nurses what it is like. And I am really happy that I met Irene, and she asked me to be in the Veronica Project, and she helped me to write this story.
Advice for doctors and nurses
What doctors and nurses and other people should know is that it is really important people are told about their cancer. If they are not told, how can they understand it? They need to know! But they should tell people in a way that they can understand. They should say: ‘You’ve got something growing inside you, and we want to get rid of it, because if we don’t, you are going to die.’ And it is important to explain exactly what is going to happen. Like if you are giving radiotherapy, wherever you need to have it, they mark it with a cross, and then you lay on a bed, and then they do the radiation, and that would make sure all the cancer cells had gone. And if they give you chemotherapy, tell them how long they’re going to have it for, and what’s going to happen. When I started having chemotherapy, they said that my body’s going to change, and I might be a bit moody sometimes. And they were right. I was getting really bad hot flushes sometimes, one minute I was hot, one minute I was cold… But at least they told you about that beforehand, and that definitely helped. Because if I hadn’t known, then I would have thought, ‘oh my goodness, what’s going on here?’ It would be good to have more easy books to explain things better, like Books Beyond Words. In my hospital there was nothing like that.
And don’t leave people on their own for a long time, because that is scary if they don’t know what is happening. Especially if they find it difficult to speak, and they don’t know what’s going on – that could be scary for them.
I would have liked to have somebody to talk to. I wish I’d had someone like Irene when I had the cancer. It would have been good to ring somebody up about it, somebody to listen to me.
Advice for other people with learning disabilities
I would say, if you find that there’s something wrong, go to the doctor, or the hospital, and find out what is wrong. Don’t leave it for a long time because it could be fatal for you, or it could get worse…and then something might happen.
And if you’ve got cancer, well, I know it’s scary, but it’s better to find out earlier rather than later, so that you could get the right treatment, and then hopefully you would get better.
Life after cancer
Life is wonderful now. My Adult Placement family were really good, they let me stay with them when I had cancer. But afterwards, I wanted to be more independent. People thought I would never be able to live on my own, but I knew I could do it with a little bit of help. And I’ve done very well. I live in my own flat now, with a carer coming in a couple of times a week to help me. I am getting better at things, like cooking. I’m not so good at ironing yet!
I’ve also got a fantastic job. I applied for it a few years ago and I got it. I work for Mencap as a Peer Advocacy Support Worker. I work with people who get support to live in their own homes and people who go to special care and respite care. I help them to speak up about how happy they are with where they live. I really enjoy my job.
Having cancer has definitely made me stronger. Before, sometimes I couldn’t be bothered to do something. I’d think, ‘oh, I’ll do it tomorrow or the next day’. Maybe I would think, having cerebral palsy, I can’t do it. But now I think, well, if I don’t do it now, I’m never going to do it. I’ve been given a second chance.
Note on ethical issues
Amanda Cresswell has used her own name for this article. She felt strongly about this: ‘This is MY story, and I want to put my own name on it.’ The ethical issues involved in allowing a research participant not to remain anonymous have been carefully considered. The decision not to use a pseudonym was supported by the Veronica Project Research Steering Group (which includes three advisors with learning disabilities) and approved by the South East Multi Centre Ethics Committee.