Iain’s story

Iain was diagnosed with Ewing’s Sarcoma in November 2007, at the age of 11.

Until September 2007 I was active and did lots of sport, I especially enjoyed being a goal keeper. For about a year I had a sore right thigh – after a couple of days the pain always went away and then would come back a few months later. The doctors thought it was because of my flat feet and then because I injured my right ankle that it was a knock on effect. One night in September the pain was very bad and lasted all night, so the doctor sent me to see a specialist.

An x-ray showed that there was a problem and the specialist sent me for an MRI scan. I didn’t know what that was but luckily my mum had had one so could tell me what to expect. The very next day we went to Stanmore to see a really nice doctor who was an expert in dealing with these things. The specialist explained he thought I had either a nasty infection in my bone or there was a chance it was a rare tumour. I had to have a biopsy, as I was only eleven I didn’t know what that was but the doctor helped me understand. After the biopsy me, my mum and dad had to go to Stanmore for the results.

When the doctor told us that I had a rare tumour I didn’t realise at the time that he meant cancer.

He told me that he would look after me and that he would unfortunately have to make me sick in order to help me get better. He said that he would do a big operation on my leg in the middle of the treatment and that it would all take about a year. At that point I really didn’t understand how serious my illness was.

We went to London where I met my oncologist who explained to me about the cancer and the treatment. I had to have lots of tests done, there seemed to be lots of waiting about and uncertainty. Before this I had never been in hospital so it was quite scary not being in a familiar place and being on a children’s oncology ward. The first chemo was really horrible because the sickness medicine didn’t work. Once the anti-sickness drugs worked the chemo treatments weren’t actually that bad. My dad stayed with me all the time I was in hospital so I felt OK.

The side effects were sometimes awful; the ulcers were very painful and meant that I sometimes could only drink shakes. My finger and toe nails fell off and my hair and eyelashes fell out. The worst bit of the treatment was definitely the time between treatments. I felt really ill when my bloods were low and I didn’t like rushing to Maidstone hospital. The nurse who visited me at home was very helpful and explained lots of things.

In March 2008 I had a big operation at Stanmore hospital to replace my right hip and most of the femur. They showed me a bionic leg beforehand so I knew what they were going to do. Being in intensive care was very scary and I didn’t realise how little I would be able to move afterwards and how painful it would be. Wearing a heavy and awkward hip brace for three months was really hard. I basically had to learn to walk again and that seemed to take ages. It was very hard having chemo while I was recovering from my leg surgery.

It was a very long year where I missed lots of school so had a home tutor in the end. The whole experience was very hard for me and my family. It was horrible going in and out of hospital, especially in Maidstone when you didn’t know how long you were going to be there and if you would need to go back for blood transfusions or platelets. There always seemed to be a lot of waiting. I think I grew up a lot in that year and had to learn to be confident with adults (doctors and nurses) and I learnt a lot of medical terms. During my treatment and for a year after it had finished I had a lot of physio which was always challenging and sometimes frustrating.

In September this year it will be three years since my treatment finished. It makes me sad that because of my leg I can no longer do contact sport.

I have appointments with my leg consultant and my oncology consultant every four months for leg and chest x-rays and check ups. I dread these appointments because they remind me of that awful year. My bionic leg can be lengthened from the outside using its motor. As I am growing a lot this has meant a few extra appointments, it doesn’t hurt when they do it. When my leg needs lengthening my limp gets worse and my hip aches, otherwise I get on fine.