Interview 29

Age at interview: 23

Age at diagnosis: 17

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.

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.

Feels that GPs should consider serious diagnosis earlier, even if it is unlikely because the...

My advice with the GP would be to keep pushing him. You can't force GPs to listen and GP - and my experience with GPs is they'll look for everything there can possibly be before they'll look at cancer. And I think GPs should look at the worse things first, because they're the things that, you know, if you leave them, you can't treat them. Whereas, you know, if they start with things that are just stupid and little and don't really make any difference to your life' Whereas I honestly think the GPs should look at, you know, it could be really bad. It could be a bad thing, and a simple blood test could save someone's life. If they just did - you know, if someone went in and said, "I'm getting pains", and if they just did some kind of simple, you know, what their white cell count was like - you know you can tell from that, sometimes. Or if they just sent them for an x-ray. I mean an x-ray doesn't cost much, and yet that could save someone's life as well, so I think it's just really stupid, you know that they just dismiss people. And it's not just young people they do it with. You know, they do it with adults, and I think GPs are wrong to do that.

Her consultant, who used the terms 'mass' and 'tumour', seemed reluctant to say 'cancer'.

Who told you, you had cancer?

That - I sort of - I think about this, who actually said that I had cancer, and I don't actually remember anyone saying, you know, the cancer word. My mum came back and she said, "The doctor says they've found a mass", you know you just, you don't really think, well, "What is a mass?" I went to - when I eventually went to hospital it became a tumour. Again, you know, what's a tumour? And then I saw a social worker came down, a social worker when I was on the young oncology unit. She came down and she said she was from Sergeant Cancer Care. And I kind of looked at her and I was like, "Well I don't have cancer, why do I need to see this woman?" And I think she was the first person that made me realise that I actually had cancer. You know, I was in a cancer hospital, and I knew that I was going to have chemotherapy, but even then it was kind of, well, you know, it's a tumour; it's a mass, it's not - And people won't, still won't say cancer. It's - I don't know. For some reason it's like the hardest word for people to say. And it's not really that bad a word to say'

So your doctor at the hospital didn't explain to you?

No. No, he said it was a tumour. He explained, you know, he explained what - that it could be a lymphoma, or it could be a sarcoma. He didn't explain what a sarcoma or a lymphoma was. He - you know, he never explained. It was always a tumour, or a mass, or a growth, you know, and they never said it was cancerous or - or they'd say malignant, you know' But when you're seventeen you're not really kind of sure - you understand the word cancer, but you don't understand malignancy or... you know, you just don't understand that kind of thing.

She talks about the consequences of a late diagnosis and feels angry with her GP.

I was so angry towards my GP. I knew, my consultant said to me that if they'd got the chemotherapy - if they'd managed to get me chemotherapy earlier, I wouldn't be disabled now. If I'd - because the tumour pressed on my spine, so I've got no use at all of my right leg. My consultant said that if they'd got the tumour, only like a couple of months earlier, then they would have managed, you know, I would have been fine. I wouldn't have been at all disabled, so I was so angry with him. I knew that if they'd got it earlier, I wouldn't have been so ill either, and I wouldn't have had to go through what I went through for that year. 

Received six weeks of radiotherapy after her chemotherapy failed to control her cancer.

When I had my last chemotherapy they - you know - he sat me down and said, "It's not worked anyway. We'll refer you for radiotherapy, but we're not going to make you any promises". He referred me again to like an adult radiotherapy doctor, who had a waiting list of like six weeks and again my Mum stepped in, and she wanted me to see the teenage consultant. Because the consultant I'd had wouldn't let me go on the teenage ward, because he said they didn't have the expertise to deal with my cancer. So he - so my Mum went to see the teenage consultant, and asked if he would see me, kind of, you know - really pushed it. And he's a radiologist as well, so he could, you know, he could do the radiotherapy. So he said, "Yeah I'll, you know, I'll see her". So he did my radiotherapy, and basically he was the one that saved my life. He didn't make me wait for ages. You know, he took me in, did the radiotherapy, and got me out again. And he got rid of it.

Can you explain in more detail what he did, how many sessions of radiotherapy?

Well the tumour was still quite large. So I had six weeks of radiotherapy. You have it five days a week, so that's like thirty radiotherapies, and first of all, when you go in for your radiotherapy, you go into like a, a simulator, where they simulate. And they put little drawings all over you, where they're going to zap you. And they give you a little tattoo, just a little ink and a pinprick, and it shows where they're going to direct it, but it's just like an x-ray really. You just lie on the bed, and it's all nice and'

Compares her first consultant to the second one, who seemed to have more experience in treating...

Yeah. Yeah when I was about three chemotherapies in, the ward - they suddenly found one of my chemotherapies left in the fridge, and they'd forgotten to give. So my Mum went to see him, and she said, "Well is it going to make any difference to her treatment? Can we just give it her?" And he said, "Well there's not really any point, if we're honest about the whole thing, because it's not really going to work anyway you know, the whole chemotherapy isn't going to make any difference. We're just, sort of really buying time, really, not - we're not going to save anything". So - and, I mean I know now that at one point he told her that, you know she should plan my funeral, and we should talk about what kind of funeral I wanted, because none of the treatment he was going to give was going to work.

I remember sort of feeling frustrated with my adult consultant, because I never thought he really listened to me. He always- whenever he wanted to talk to me, or about the treatment, he always talked to my Mum, or he took my Mum outside, or he talked to my Dad. He never talked to me. It was always, you know, "How is she?" or - it was so - I don't know. I guess I wasn't really hearing him when he was saying that because I just, I didn't kind of believe him and I didn't want to believe that they weren't going to do anything else 'cause - I don't know, it was just, just - It was quite scary hearing him say that, but my Mum- I don't think my Mum was going to let him do that, so I kind of trusted my Mum not to let it happen.

So your mum sort of found'?

Yeah, my mum, yeah, she went and she sorted it out, as mum's do [laughs].

The consultant that I eventually got, Dr was just the most amazing doctor I've ever had. He, he sat me down and he explained everything. And he didn't brush off any fears, he - I think, because he had so much experience with people of my age, he could understand what people were scared of and he explained that like, you know, if the chemotherapy hadn't sort of killed off all my, my being able to have a child and all that, this radiotherapy probably would, because it was that area. So he explained all the side-effects. He explained what could happen, what might happen. And he said, you know, if I ever have any problems his door was open. I could just go and see him and he'd sort out what he could.

Her doctor referred to hair loss as 'temporary alopecia' and she didn't know what he was talking...

They told you that your hair was going to fall out?

Yeah, well, what he actually said, the consultant that I can remember, he said, "You may experience some mild, temporary alopecia", and I didn't have a clue what he was on about, and I, before I had the whole cancer experience, I always thought it was people getting cancer that made their hair fall out. I didn't know it was the treatment. So that's why I think that's why I was kind of - well, "I haven't got cancer; I've got hair". So he said, "You'll experience mild, temporary alopecia, and we'll give you a wig". And you just look at the wig - the woman who came up - she had this shopping trolley full of wigs, and they were all for like old people, because she worked with old people. And they were the most horrible things I've ever seen in my life, and it was just it - And I always think it's a bit cruel at [hospital] because when I was on chemo they had this woman and she had the longest hair I'd ever seen in my life. I thought that was a bit mean [laughs].

For young people their confidence and the way they look is very much related to the way they...

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.

Said that her boyfriend is one of her closest friends, together with a girlfriend who also had...

And what about, who are your friends now, those you are close to?

I don't really have too many friends. I have - like one of my friends - I don't know - I consider myself close to her, but and she was one of my friends when I was younger. She was like my best friend, all the way through high school, but she's like teaching English in Japan now, so I don't - obviously I don't see her too much. But she's one of my closest friends. One of my - a good friends of mine is another one that I was in school with. She was quite a good friend at school. But she had a baby, so she has different interests again. I have my boyfriend who I'm really close to. He's a good friend, obviously. But...

How long have you been together?

We've only been together for, probably like five months. I was with - before this boyfriend I was with someone who I went to school with, and you know, after I had chemotherapy we started dating. And I don't know, because again he'd kind of, known me before, but I'm a completely - really different person than I was in school. It does change you like that. But like at university I'm still kind of nervous of going out and, you know, because people still don't really understand. And they'll you know, walk places, and I'm too kind of embarrassed to say I can't walk. You know I can't walk very far. I'm quite good friends with a girl I met through the house we set up in London, the Sergeant. And I didn't know but she's started studying at Manchester at the same time I did, and I just met her in the street one day, and we keep in touch now. You know, we'll go out, and she'll say to me, "Are you sure you're all right? We'll get a taxi. The bus is just here, we don't have to walk if you don't want. We can stop, if you want we can sit down". And she had a completely different cancer to mine. I don't know what she had, but hers - she wasn't disabled in anyway. I think she still gets tired, the normal cancer after effects, but she wasn't physically disabled but yeah, she's really, really good, because like, being around her, she can say - and she's a bit more bossy than I am, so she'll kind of say, "Look no. We can't do that". So'

And with your boyfriend, when you just started - how did you explain to him your experience?

I don't know. I just kind of said to him that I should probably tell you I didn't kind of know how he's react. I don't know whether I expected him to react negatively or not but I knew that I had to kind of tell him, and that I had to tell him about the disability and about not being able to have children, kind of all that stuff, because I wanted to get it all out straight away. I didn't want anything to go any further and then have to tell him, you know, stuff like that, but I think he actually thinks more of me, that he knows what I've been through, and things like that.

Don't be patronising!

When the doctors work with, kind of, us as young people, I think they should know that we are people, and they should never, ever talk to our parents without talking to us. Too many doctors come to your bed, and they'll just look at your Mum or your Dad, or whoever's there. Or they'll even just talk to the nurse, in front of you. We're people of our own and we can understand a lot more than they give us credit for, so they should talk directly to us. And they should try not to sort of blind us with all the long words that they like to use. They should talk to us and try to explain things as best as they can.

So in other words they should take care of the language?

Yeah, I think doctors should look at the way they speak to people. You might get - you know they might go and see some teenager who can understand all the words they're using, but most of the time, you know, we are too ill to even think about what that word means, so they should come and they should explain it - not that they - they should be careful to not explain it, you know, too babyish, you know we want to be talked to as equals. We don't want to be talked to like we're children really.