A Letter from Rachel Gilbert:
Hi my GIST friends, my name is Rachel Gilbert, I am 18 years old and I live in St. Ives, England.
My family includes my mum, Julie; my dad, Phil; and my brother, Daniel, who's 16. We're a very close family, made stronger by my illness.
I've had GIST for 3 1/2 years, since I was 15; I was diagnosed on the 23rd December (not the best date to pick). I was also in the middle of my last year of school and 5 months away from my final exams (In England the school system goes to 16 and then you have your Gcse exams, which are your final exams). They announced my diagnosis in a school assembly to make sure that everyone had the facts. My oncology nurse went to talk to them. I knew about it beforehand and thought it was a good idea, instead of people not being sure about it and making rumours. My friends didn't react very well.
When I started Glivec it hit me very hard, starting on 400mg. Slowly I have been moved up and down and up again and now I'm on 800mg. And stable.
I didn't manage to get to school anymore and didn't complete all my exams. I was upset about not going to school. I felt like I was missing out on having friends and socializing and now years later it upsets me a lot because I feel like I've missed out on my childhood and part of growing up.
I was also very surprised to find out that who I thought were best friends, didn't want to know me anymore. They were upset to start with, but later they didn't know how to talk to me, so I lost touch with some of them. Then when I didn't go to school anymore, I didn't see them either and they never made contact themselves. I did think they were good friends but now when I look back I think they weren't as good as friends as I had thought they were and they didn't care as much as I would have hoped friends would. This made me feel very lonely which hasn't gone away to this day. I don't see any of my old friends and haven't for 3 years. This has made me lose my confidence, I think because I wasn't around people and haven't had friends so now I feel nervous when I go out even to simple things like the hair dressers, I didn't use to go out in case I bumped into any of them but I'm now determined to make new friends. And for the last year or so I've started doing more including singing in our local church, which I love, I've also got a part time job as a secretary in a post office/parish centre, I work 3 mornings a week when I'm well enough and I'm taking driving lessons. I'm so excited because my driving instructor said I can do my test soon. Yippee.
Before I was ill I was an elite gymnast for England which I really enjoyed. I won 11 gold medals and several silver and bronze. I competed for England in Malta; I went with my coach and another gymnast which was really exciting. I won and was told (I didn't see it) that I was on Eurosport, which is a sports channel in England. I trained 6 days a week, 4 hours a day with competitions on the 7th day and my gymnastics club was an hour drive away. I can still just about do the splits which I'm very proud of.
So, why me? Why an extremely fit and healthy 15 year old girl? Do you know what? Every time I think that, I think, why not me? What makes me so special above everyone else that I shouldn't get ill? I've always stayed positive; I love life.
Cancer is a very big part of me but I'm not going to let it hold me back. My dream is to be a famous singer which I'll try my best to achieve.
Since I've been diagnosed my Gist has stayed stable on the Glivec and shrunk once, so I'm very lucky.
My family, especially my mum, have been a huge support and I don't think I would be able to handle it without them, they've all been amazing.
In my first year of having cancer I met an amazing boy called Stuart who had been ill, not with GIST, but had been ill for 7 years. Sadly, he died aged only 15, along with many other young people who had been diagnosed at around the same time as me. Stuart showed such courage and bravery and I hope I can be as brave as he was.
I think good things to do when your ill is to stay positive, which I know can be hard and to talk about your fears and worries and if you fancy having a cry, do it, it feels much better when you've had a good cry. Do things that you want to do when you're well enough and live life to the fullest everyday. And most importantly: SMILE. I'm doing it right now.
Thanks to everyone at the Life Raft for their support and a wonderful pediatric meeting.
And thanks to my brilliant family.
Love you guys.
This article was reprinted from the September-October 2005 issue of the LRG newsletter.