Heather's story

I was 16 when I first started getting symptoms. At 17 I was diagnosed with a Peripheral Neuroectodermal Tumour (PNET). It's a form of sarcoma very similar to Ewing's Sarcoma and was attached to my spine in my pelvis.

I was treated at the wonderful Christie Hospital in Manchester. I had 5 lots of chemotherapy, I was supposed to have 6 but it didn't work and it just made me too ill. Then I had 30 radiotherapy fractions. I started my treatment in late October 1998 and in some ways I'm still recovering now from the long term effects.

I was initially treated on an adult ward, with an adult consultant at Christie Hospital. I knew about the Teenage Cancer Trust ward because I'd had my biopsy done there but due to hospital politics my consultant wanted me on 'his' ward for my treatment. I can't fault the staff on the adult wards but they just aren't the right place for a teenager.

The turning point came at Christmas, 1998. I went neutropenic and my adult doctors refused to readmit me to Christies due to lack of bed space. I had to be admitted to my local hospital and was put on a maternity ward and received no treatment for 12 hours. I was really, really ill. Eventually after 4 days the Christie doctors agreed to transfer me over and I was admitted back to Nathan House where I spent Christmas. A few days after my mum was speaking with one of the nurses from the Teenage Cancer Trust unit and discovered that in fact the unit had been empty at the time I was ill. We lodged a complaint and along with the wonderful staff on the Teenage Cancer Trust unit managed to make it so that I was treated on there.

In April I found out that the chemotherapy hadn't worked. My adult consultant, who had said that the treatment would only buy time anyway was pessimistic and said we could try radiotherapy but he wasn't promising anything. I waited for a referral to the radio doctor...and waited. None came so my mum approached the amazing Dr Rao, one of the teenage consultants. He agreed to take over my treatment, arranged radiotherapy and saved my life.

I love the Young Oncology Unit. I love that you are a person; that everyone knows you and knows what you like and don't like. I love that I can be a frightened young person but still be treated like an adult and make decisions about my care. I also love the positivity that surrounds the place, too often wards have negative energy because of the pain and worry people suffer on them but you don't get that on a Teenage Cancer Trust unit. Sure, there is pain and worry and everything else but the optimism and laughter changes that.

I had a few nurses, most of whom aren't on the unit anymore. They were all amazing. There was one that I hated at the time, she made me get out of bed and do things and I hated that! Now though I am pleased she did because it stopped me giving up. My social worker, Judy continues to be a big support to my family and me. After treatment the Teenage Cancer Trust Activity Coordinator, Ben, was great, giving me someone to talk to and having more things to do. Now Lorraine and Sam are just amazing people who seem to know exactly what to say and do in any situation.

I'm just finishing university, a degree in Media, Culture and Society at the University of Manchester. I also do various volunteer stuff including Teenage Cancer Trust, Christie Crew, Beavers and Scouts. I'm also the chairperson of our newly founded fundraising group for the Young Oncology Unit, YOUF, which is about raising funds for the ward and raising awareness of teenage cancer. It is made up of former and current patients and we always have something on the go.

I want to do everything! I want to travel and see everything. I'm glad I've been given another shot at this and I don't intend to waste it. Having cancer has taught me so much. On a very basic level, it has taught me tolerance; I'm now a lot more accepting of people. The hospital is like being on Big Brother; you are thrown in with all these people from different backgrounds that you wouldn't normally mix with. I'm disabled too now and it taught me that it is ok to be different. I now know that life is very short and shouldn't be wasted. I'm now a lot more patient and a lot happier because life is way to short to spend being angry! I'm so happy that I had cancer because it made me the person I am today. Sometimes people need to go through something really bad to discover who they really are. I'm just glad I got to go through it early in life.