Originally published in December 2003 icon
Ewing’s sarcoma - The Facts Teenage Cancer Trust
Celebrating Recovery From Bone Cancer
Katy Oliver was a fit and active 14-year-old when she first experienced the pains in her right shoulder that, 18 months later specialists diagnosed as the bone cancer Ewing’s sarcoma.
After the initial shock, Katy decided to fight on. She faced a gruelling operation to remove the tumour - and what was left of her shoulder blade with courage, and then forced herself to get well enough to be released from hospital and recover at home.
Her illness forced her to drop out of ’A’ levels, but Katy, now 20, has turned her life around in a way she never expected. This summer she completed a foundation course at art college, and is now studying graphic design at Coventry University.
Despite having limited use of her right, arm Katy can canoe, has taught herself to swim again and learnt to drive. She recently celebrated her second cancer-free year and constantly sets herself new challenges.
"I’ve got a lot to celebrate. I believe you have to think positively when you have cancer, and it’s not all bad. If I hadn’t had it I wouldn’t have gone to the Caribbean, made some great friends and met my first serious boyfriend. Friends have really helped me and I’m looking forward to seeing them all this Christmas. I’m back to normal now so it’s going to be a fun, active Christmas - not like the one I had just after being diagnosed in 2000.
My first lot of chemo had knocked me for six and, although my family tried to make it a nice time for me, I felt really ill. I also looked awful. I’d lost a lot of weight, and my really thick hair had started coming out. I’m so glad to have hair again now!
I’m also pain-free which, after the 18 months of agony I suffered before being diagnosed, is hard to believe. I was 14 and on a trip to Birmingham to stay with my auntie and uncle for Easter, when I felt an awful aching pain in my right shoulder. As I’d been carrying a heavy bag, I thought I’d pulled a muscle, but the pain got worse throughout the next few days. It felt like nerves were getting trapped under the bone. My aunt tried to get me to the doctors, but they couldn’t fit me in so I was on painkillers. They also tried massaging my shoulder, but nothing worked.
When I got back home, to Liskeard, I felt fine, but the pain came back in a few months and started to come back more often - a constant ache that would last a week or so.
I used to do a lot of rock climbing at school - it was one of my favourite activities - but I had to give it up, because the movement in my arm was getting limited. By the end I couldn’t even lift my arms above my head.
Throughout this time I was going back and forth to the doctor. ’This pain isn’t right,’ I’d insist, but he’d just say, ’Oh, it’s growing pains.’ He’d feel my shoulder and say, ’There’s nothing there,’ but he never sent me for an X-ray. Over the next 18 months I was given paracetomols, which didn’t really do much, then a cortisone injection and I was put on the waiting list for an MRI scan. I waited months, and was eventually referred to a physiotherapist who thought the pain was muscle strain. I had physio for a few months, but every time I finished a session the pain would be worse.
I was taking painkillers every four hours, day and night, because I wasn’t sleeping. But I hardly took any time off school and I didn’t make much fuss because there wasn’t anything anyone could do. Some people may have thought I was putting it on a bit, but my friends knew I was in pain and helped me. I was so tired during my GCSEs, and couldn’t concentrate at all, but luckily I still got all 10 - one grade A, two B’s and seven C’s!
I had to give up rock climbing, because the movement in my arm was getting limited
I went to see one of my aunties, in Stafford during the summer holidays, and she was so worried that she took me to two hospitals to try and get my shoulder Xrayed. The consultant at the first hospital was really obnoxious. He said there was nothing wrong and refused to X-ray me, because I wasn’t in their health authority. Nothing was found at the second hospital because, as I later discovered, they X-rayed the wrong part of my shoulder.
I’d been back at school a few weeks, when my physio noticed a lump on my shoulder and then phoned my doctor to say she thought I should have an X-ray. I had one the next day, October 5th. 2000, at my local hospital, before going back to school.
Mum is a teacher and was on a course that day, so I thought it strange when I was asked to go down to reception to see her later that afternoon. ’What’s wrong?’ I asked, because she looked like she’d been crying. ’We’ve had a phone call from the hospital,’ she replied, ’they’ve had your X-ray results back and we have to go to Plymouth straight away, to the children’s ward at Derriford Hospital.’ They didn’t tell Mum why, but she knew it wasn’t good news.
I remember being in a small room and lots of doctors coming in. They made me take my top off, and examined my arm before taking mum outside to show her the X-ray. She was crying when she came back because it showed a tumour which had eaten half my shoulder blade. There was a jagged edge down the side of it. The tumour was so big it had dislocated my shoulder, and that was what was causing the pain. I’d been having months of physio on it; surely the physiotherapists should have realised I had a dislocated shoulder!
X-ray showed a tumour which had eaten half my shoulder blade
I sat there in a daze, as I was told that they were 99 per cent sure the tumour wasn’t benign. I couldn’t believe I had cancer, let alone a bone cancer called Ewing’s sarcoma. I was so shocked when a nurse started talking about the treatment, and how I’d probably lose my hair.
The next day I went back for a CT scan, shoulder and chest X-rays and lung function tests. It still didn’t hit me that I had cancer until about a week later, when I had to go up to Bristol for a biopsy and to have a central line put in my chest for my chemo. Mum and Dad were both with me there and, when the consultant told me it was definitely cancer, I cried for the first time. I thought I was going to die. It all felt like a bad dream and I was really scared.
It wasn’t until I had my first lot of chemo back at Derriford Hospital that I realised how bad it was going to be. The tumour was the size of a melon but, luckily, it hadn’t spread. They had to reduce it with the chemo before they could operate. I had six courses of the chemo combination Vide, in three-week cycles, but there was an accident during my first lot. The line came out, and toxic drugs were pumping all over me and the bed. It was panic. Mum pressed the emergency button and nurses came running in in blue gowns and gloves, to stop themselves being burnt, while they cleaned me up. It went all over my skin but didn’t burn me.
I felt sick throughout the chemo and very tired, and by the end of the treatment I just had wispy bits of hair left so I told Mum to shave it off. She’d been reading up about my cancer on the internet, and had heard about the charity TCT (Teenage Cancer Trust) which helps teenagers with cancer. I started wearing the bandanas they sell because the wig I was given at hospital was horrible. It looked like fancy dress!
As soon as the chemo was over, I went back to Bristol for my operation, because there was a special orthopaedic surgeon there. After he took the tumour out he said that there was hardly any of it left because it had responded well to that chemo combination.
There were quite a few complications though. My blood counts were fine before the operation but, during it they all dropped and I became neutropaenic (I had no immune system) and lost loads of blood. They carried on with the operation and removed the whole of my shoulder blade, but afterwards I was in intensive care for a week on a ventilator. I had fluid on the lungs, and a lung infection, and I was told that if I got pneumonia it would have killed me off because I had no protection.
I don’t really remember much about that time, but when I eventually came round I couldn’t move with the pain where they’d cut all the nerves and muscles in my shoulder. But I was alive. I was so relieved to have come through it, and so determined to get out of hospital that every time the consultant came to see me I’d ask, ’When can I go home?’ They tried to put me on an anti-depressant but I refused because I knew I was depressed because I wanted to be in my own bed, so I concentrated on getting out.
I worked with the physio to try to get the movement back at the top of my arm and to strengthen it. I needed help with everything, but I made myself walk around, so that I could go back to a normal ward, and then a couple of days later I was allowed home.
I was so relieved to have come through it, and so determined to get out of hospital
They started me on another course of chemo - eight lots this time - to make sure there were no cancerous cells but after a few weeks I had a reaction with one of the drugs I was on. It affected all my nerve endings and I couldn’t walk. I was bedridden for six weeks. I had to have everything done for me. My mum had a year and a half off work, in all, to look after me. She was brilliant and I wouldn’t have been able to get through it without her!
Despite the bad reaction, they carried on with the chemo until October. Then they scanned me and that was it.
The day they told me that all the cancer had gone, and I was in remission, was October 5 2001 - a year to the day since I was diagnosed!
I’ve been in remission for two years now and you can hardly see the scar where my shoulder blade was removed. As the shoulder blade basically floats in your body, there wasn’t anything they could put in to replace it. They attached my collarbone to the top of my right arm, so I have limited use of it, but I’m very lucky that I’m lefthanded.
There have only been a couple of times that I’ve said ’Why me?’, but mostly I didn’t see the point of self pity. I did wonder what caused the cancer, though, and have been told it’s due to some sort of trauma -either physical or mental.
The only thing I can think of is the rock climbing, as it was a constant strain on my shoulder. But they said a bad knock could have triggered it.
Although I was happy to be given the all-clear that October, I was also sad to leave because the nurses were so lovely and the hospital had been like my home for the past year. It was my 18th birthday in November and mum took me to Lanzarote with my sister. It was the first holiday I’d had in ages, and a great way to celebrate the treatment being finished.
My grandad had bought me a car for my 18th, when I was still ill, to give me something to focus on and as soon as I was well enough I started learning to drive and passed my test in March. I’ve got a special handle on the steering wheel, but my arm’s so strong now I don’t really need it.
My friends have been brilliant - especially Emily and James who came to see me every week while I was having chemo. They’d bring cards and stuff, and chat and make me laugh. It was nice to talk about something other than my treatment. Also it was good to see people my own age, as I was on a children’s ward.
Before I finished my chemo I did a lot of fundraising, including a sponsored bed push, for the Teenage Cancer Trust
I found out about the teenage wards that the Teenage Cancer Trust set up and I wish I could have been treated on one. Before I finished my chemo I did a lot of fundraising, including a sponsored bed push, for the Teenage Cancer Trust.
Things started to get back to normal after I went back to Bristol in December to have the central line taken out of my chest. They had left it in a while in case I got an infection and needed more antibiotics.
My hair was even growing back! I still wore bandanas though, when I started art college in January 2002. I’d decided not to go back to ’A’ levels but to move on, and thought art college was the best way to do that. Now I’m not actually behind any more and am enjoying uni.
I decided to study in Coventry to see more of Rob. We’re friends now, but we were going out together for nearly a year. We met on holiday in the Caribbean, last November.
I couldn’t believe it when my social worker called to ask if I wanted to go on a free three-week holiday. I had to call her back to make sure it wasn’t a joke. She’d put my name forward to a charity called The Free Spirit Trust and 10 of us went. It was such a good holiday, and we’re all really close now and have reunions.
I get five years in remission, before the official ’all- clear’, and in the meantime I have chest X-rays every three, and MRI scans every six, months.
My health is much better now and I’m more or less doing everything I used to - and more. I think my outlook has changed as well. I don’t take life for granted, and I did more active things this summer than ever before.
I’m a different kind of person now; more mature. I was much more selfish before, a proper teenager who used to argue a lot, but Mum and I are closer now.
The more I think about it I’m glad I had cancer because it’s changed my path. I’ve made so many really good friends, and had such great opportunities, that I wouldn’t change what happened at all."
For more details about the Teenage Cancer Trust, call 020 7387 1000 or log on to http://www.teencancer.org.