Interview 29

Age at Interview: 23

Sex: Female

Age at Diagnosis: 17

Background: Lives with her family and studies full time at university. She and a friend set up an internet forum for teenagers experiencing cancer and their siblings. She support the work of several teenage cancer charities.

Brief outline:In 1998 diagnosed with a rare form of soft tissue cancer called Peripheral Neuroectodermal Tumour found in her spine. She has five cycles of chemotherapy followed by thirty sessions of radiotherapy. Tumour dormant.

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Yeah, yeah, it is. Because when you become a teenager you think, especially like - I was seventeen. You want to learn to drive and you want to be able to go out. You want to go to the pub and you want to drink, and you want to go places, you want to go shopping with your friends. You know, there's so many things that you want to do. You want to be away from your parents, and all of a sudden you're pushed back into this world where everything that you do, and everything that you are is controlled by other people. And it it's - that makes you quite angry as well, and when you come out the other side it 's still quite scary, the whole world is kind of a scary place, because you know, your body is not the same as it was when you went into the chemotherapy. You can be disabled. You can have lost a limb. You don't look the same. You don't feel the same. You're kind of not the same person. And you come out of it, and you want to kind of do the things you think you should be doing, but you're still kind of scared and you're still kind of dependent.

Yeah, it is, because you - you're not at all confident really anymore, really. Some people might be, but the majority of the people that I know kind of come out of the chemotherapy - and I think that when you're a teenager a lot of how confident you are is related to how - the way that you look, and the way you think people perceive you. And if you go out shopping on your own, and you've got no hair, and you're really skinny - people are going to look at you - most people don't look at a teenager and think, "Oh they've had cancer. That's why they've got no hair". You know, they'll look at some skinny, shaven headed person and think, "Oh they're on drugs" you know, and you kind of know that, and you - you realise the way people perceive you and it's just quite bad really.

Because just being around other young people, and knowing you're not the only one is so, like, worthwhile. Because if you go out, or you walk down the street, or you walk round the shops or whatever, you feel like you're the only person with cancer, or who's had cancer. But sat in a room or like at the cancer conferences sat with two hundred people, you realise you're far from the only one that's going through this, or that's had that disease.

So it's had, kind of, it reinforces you, it makes you stronger?

I've been to the last three conferences they've had - the Teenage Cancer Trust, and they are the most amazing experiences ever. Because you're in a room with, like, two or three hundred people who know exactly how you're feeling, and who know ex- they've got the same fears you've got, they've got the same problems, they've had the same every thoughts, they -they - it's just like the most empowering thing, because you are - you're not different, really. You're exactly the same as those people. And at the end of the night you go to the bar, you get up and you dance, and you dance a bit funny because your leg doesn't really work, but you can guarantee that there's fifty other people in that room who are feeling exactly the same. You know, there are people there with legs and arms missing, and eyes missing, and no hair, but nobody stares at them. Nobody even sort of takes a second glance, because that's what's normal, really, in that world.