Interview 09

Age at interview: 24

Age at diagnosis: 16

Brief Outline: Diagnosed 1996 with stage IV, Burkitt's lymphoma, a type of Non-Hodgkin's lymphoma. He received chemotherapy as an inpatient for five months, followed by 15 sessions of radiotherapy. In remission.

Background: Pharmacologist; single; no children; lives with his parents. After his treatment he went to do a pharmacy degree and wants to work in a Teenage Cancer unit.

Believed he had a virus. Since his cancer is very rare he does not blame the GP for not sending...

What I would like to ask you is how long passed between you developing symptoms and being referred to the hospital?

I would have said that its, it's a difficult thing to answer because I certainly wouldn't want to criticise anyone, I wouldn't want to criticise my GP. I mean my cancer is a very rare one I mean I think that it's about one in, one to two million people get Burkit's lymphoma. Or that type of, that type of non-Hodgkin's lymphoma but you, it was about, I started in January and I was referred to the hospital February, so it must, mid-February so it must have been about six to eight weeks. 

But you know Burkit's being a very aggressive cancer so yeah I think perhaps I should have been in hospital a few, a bit, long before but I, I was kind of, I wanted to soldier on I, I thought it was just a virus I was con, I was convinced that it was just some sort of flu virus or a, or Epstein Barr virus you know kind of, I think its something to do with just, I don't know perhaps I'm just stubborn [chuckles]. So yeah I think I just wanted, well I didn't want to be hassle because I didn't think I was ill enough to go to hospital. And I think that, that sort of put my GP off because I didn't want to go in to hospital, I didn't think was ill enough I thought that you literally have to be at death's door to go in to hospital.

Realised that there must be something seriously wrong when the man doing the ultrasound suddenly stopped being jolly.

But I remember the, the, the ultrasound scan. I remember the, the guy who did, who performed the ultrasound scan was really jolly. He, he was a really nice man, he was, smiled and you know he sort of made a few jokes and I remember his face just falling and it the sort of atmosphere just became serious very quickly when he started to you know after he'd put the gel on and started to perform the ultrasound. I remember him being, becoming very, just his attitude changed and in the kind of, the way that you just feel that something's not quite right, something's worrying. I remember him, him remember him being very worried, just looking as though he was quite concerned. Just going from like a really jolly, happy you know confident and kind of, that everything would be fine to kind of very serious professional you know a professional aura I suppose you'd call it, go from a happy. I remember that and I just remember thinking to myself you know, my head was saying you know 'Everything will be fine, don't worry about it,' and my sort of heart was saying you know 'I'm quite ill, I wonder what he's thinking, you know he's not saying anything but he's, I wonder what he's thinking.'

Talks about his five and a half months of treatment and explains what happens when you become...

Yeah the, the baby dose and then there was, I think there was five large doses, sort of five of like large doses and then there was a maintenance dose at the end which was another large dose. The doses were, they were a week after, they were sort of every three weeks you'd have a dose, you'd have, you would be injected with sito-toxic drugs, you'd have injections, pills to take, you'd have steroids and whatever. And then, and then for the, for a week pretty much, by about a week and then all your, your blood cell counts would go down you, you'd lose your, you'd, you'd become neutropenic which is when you have no neutrophils which are, neutrophils are kind of a, they form the basis of your immune system where, where they are, they are 70% of your immune system. And they, and what they do is they, they fend, they fight off bacteria and, and viruses that sort of attack, you all the time. Well of course when you don't have any, any neutrophils you, you, you're very susceptible to infection which is pretty much what you get every time you become neutropenic you, you get an infection and then you have to be treated with antibiotics. 

And that, that, then that was the second week, sort of getting over the neutropenia which, which is quite difficult in itself. And then you'd have a, a kind of, the, the, the third week would be sort of recovering from the, the therapy, the neutropenia and the [uh], and then sort of getting over the kind of being really ill and sort of your blood tests coming up and then you have a day or two off. And then, then you'd be pre-medicated with like fluids and things like that and then you would go through the cycle again. I, that's, that's pretty much what happened for about five months, five and a half months.

Had three weeks radiotherapy towards the end of his chemotherapy because the cancer had spread to his spinal fluid.

And you had radiotherapy also?

Yeah.

At what stage did you have it?

That was, that was my final stage because the, the -

The maintenance?

Hmm, no maybe the fifth stage, my fifth that the radiotherapy that was because the, the, the cancer metastasised into, into my spinal fluid the, and I had to receive the lumbar punctures and also the radiotherapy for, for that which was a three week course of radiotherapy I believe. That was pretty much every day I had to go down and have radiotherapy.

But I kind of, that radiotherapy was, it was really surreal but I kind of enjoyed the radiotherapy in comparison to chemotherapy, the radiotherapy was lovely.  I really, I enjoyed it because I mean all you don't have to do anything, you sit in a, you sit in a wheelchair, they give you a little guide around the hospital which was lovely. And it, it, whisked your trolley down to this radiography room and then you'd have to lie down for a bit and then zap you a bit and, and then, and then you know take you all the way home. It was quite a nice little journey, I mean it didn't hurt, you didn't feel anything.

He spent five months in hospital receiving chemotherapy and felt very tired when he first...

And it was, the, they never, they never actually said like you know 'You're in remission,' they don't, they never said that to me. They never said you know, my consultant never said you, you, 'You're better now, that's it,' you know. He just said that I, I knew I, I could have my maintenance dose and I had a CT scan and he said, 'Well I can't see anything.' So, and I should go home.

I used to read a lot of magazines, I used to read quite a lot of medical texts anyway so I kind of, I think the exact term of 'remission' is, is that the cancer's just not visible. You never actually go in to, you're never cured, the idea is that you just go in to remission. So it means that it's undetectable and that's, that's it really. And like so I've asked my consultant 'Is it undetectable?' and he said, 'Yes, undetectable.' So I said 'Am I in remission?' and he said, 'Yes, I suppose by that definition you are.' And that's it and it's always just stayed like that.

How often do you go to see your consultant?

About once every four months. Yeah it used to be once every month, or couple of, well initially I suppose it was once every week I suppose for a while and then it went on to once every two weeks, and then I remember it being once a month, and I have a CT scan every now and again. And then, and now it's gone to one, I don't have any CT scans any more and it's been once, once every, once every five or six months now.

I first came home I thought that I'd just return back to normal life but I was exhausted [laughs]. I remember coming home and my parents had bought me a new chair in my room and it was great because I had this new chair but I sat in the chair and that was it I had to go to bed then, I was tired. And I was exhausted like I was so tired all the time I thought well you know this is strange you know when I, when you think you've come out of chemotherapy you think that's it you should be able to just do what you want to be able to do, you should be able to just, you know a day or two walking around the house and then you'd be off to town and going off, going to do some shopping, coming back and you know staying up all night watching television, playing computer games, do whatever 16 year olds do.

Didn't have much chnace to meet other young people during his treatment but was taught to relax...

I used to think that like when I was on my own and there was no, nobody, because its very boring having chemotherapy its very boring and I used to think that, that I, my, me, my body was sort of like an island and I kind of sort of, a, a big sort of a an island, a desert island sort of with palm trees and luscious plants and like sandy beaches. And I used to think that the cancer cells were like sort of aliens from an alien film or something and they were just used to come round munching all the, all the, the, the vegetation and killing all the birds and chopping down all the trees and sort of making everything awful. 

And I use to dream that, that the chemotherapy was like a big sort of bomb and I, every, every time I had a sort of chemotherapy dose that this bomb would go off and just blow up the whole island and rip the vegetation apart and like, like damage all the, it would damage all the trees and cause big storms but it would also kill off all the cancer cells, all these aliens.

So I thought, and then as a, that was a sort of being neutropenic and then when I started to get better I used to sort of think of like the sort of trees sort of slowly growing back, the leaves, the sort of storms going away and then the, the sort of birds starting to sort of sing and, and like the greenery sort of coming back. And that's how I used to think that that's how my therapy was going along, that's how I sort of used to try and visualise how things were. And I think that, that helped me quite a lot actually in quite, in a strange way because I used to think that, that is how, because I was getting better after my therapy, after my neutropenia so that it was, you know I could sort of see it. And in some ways that, I could sort of see myself progressing, if that makes any sense?

Being bald is part of his new personality that had been shaped by the experience of cancer.

I was really jammy [laughs] I was. Yeah so yeah I'm, I'm now cool so I can say 'Yeah I do it for fashion.' But I didn't it, it, when I first, I don't, I don't mind it so much its, its strange because its, its socially its' quite nice to hide behind your hair. I mean if you want, if you don't want people to see you, you just hide behind your hair and it's really comforting to have no hair, to have hair like. When you have no hair it does feel as though everyone's watching you because you've got nothing you, you're just very vulnerable. But I don't, I mean I don't mind it because it's, it's a part of me now. 

You know I, I did think a long time about having a wig and things like that but well I didn't think that long about it, I thought, I thought about it having a wig but then I, realising you know my, you know my cancer is now a part of me you know its not as though its something, its something that has happened to me and like its, its not something that I want to shy away from because I am a different person you know since that, my defining moment my cancer being like the thing that's made me is such a large part of my personality. Its like if your character's made up of the summation of all your experiences then my cancer's my biggest experience so it is such a large part of my personality and character so I, I thought well you know I am bald and that's it you know it's, it's just a facet of me.