Interview 31

Age at interview: 24

Age at diagnosis: 13

Brief Outline: He was diagnosed with malignant ependynoma in 1994. Treatment consisted of chemotherapy followed by six weeks of radiotherapy to the head and spine. It happened eleven years ago.

Background: Single, no children; shares a house with a friend; works as an administrator. Ethnic Background: White

He had severe pain in the base of his spine and a biopsy revealed that he had two small...

I guess it would probably start in Christmas 1993. I was about twelve, twelve years old. Maybe November, December I started having back pains and aches and quite severe without really knowing what it was. I remember in January then. We didn't do anything about it, might, might have gone to a doctor but in January I remember being in school one day and I started having severe sort of pains in my back and not sure what it was. It was right at the base of my spine. So I mean I got to go home early from school and going to see a doctor in a clinic not in a hospital. And I was given, initially I was given a corset. I was given something to, it was a muscle. They assumed it was a muscle problem. 

Within days of me, I think it was late January 1994 and within days of that I had gone into hospital. And they again they didn't know what it was so I was actually put on traction for about a week maybe more. And that was just to see what would happen. Nothing happened obviously. And then the decision was made to have a biopsy. So I think that happened probably February some time, mid February I had a biopsy to find out what was going on. 

It turned out that I had a tumour. I had two small tumours at the base of my spine just slightly to the left right at the base of my spine. At that time I mean I was so young it, I wasn't really given the whole picture in terms of the details of what exactly what it was. I didn't learn that it was an Ependynoma until a long time, well until recently, the last couple of years really.

His consultant raised the issue of possible long-term emotional effects of experiencing cancer...

What are the main questions that you have asked?

They're all. First of all they probably all came out of his questions to me about the. He would talk to me about the kinds of side-effects that people have from having this treatment and whether I was having any problems. And he, he used to ask me if you had any? And I didn't know what he meant at the time. I was about eighteen, nineteen. He asked me if I had any personal, emotional or psychological problems that I felt, not necessarily that came about from the illness just generally because he, from his experience, he's obviously seen how it can affect people who have cancer when they're very young. And at the time I, you know said, 'No it's fine. I, I can get over it fine'. 

And then you know over the last few years I've probably, I've probably thought well maybe I have got some problems I should bring them up and mention it to him but again. I, I haven't. And I don't really, I don't really feel like I need to at the moment. But yeah, there are, yeah he, he has he sort of prompted me to talk about things rather than the other way around. But I, I spoke to him about the illness itself and the chances of it coming back and the chances of any form of cancer coming back and things like that. And every time I go there I kind of feel like I'm being educated a little bit more on what happened. Because he's aware that I don't, I was very young and didn't really know anything that was happening. So whenever I go there now, every now and again he'll just expand a bit more what happened and make me realise how serious it was because he. I think he's aware that, you know, I, I was very young at the time and I wasn't really sure what was going on. But yeah we've got a very good relationship with him and I can, I feel I can ask him anything.

Talks about the frequency of follow up appointments and the types of tests he has had during the...

And after that you started having check-ups did you?

Yeah I had two MRI scans a year I think for about five or six years after I, after I stopped, stopped having treatment. I've probably had, the PET scan aside, I've probably have only had one scan in the last three years or the last two and a half years just because there's a, you know, the anticipation is nothing is going to happen and my doctor's very confident that it, it won't come back. But it was, I, I'd see my doctor more than twice a year but I'd have scans twice a year. And again probably had more than two of them, the year after I probably had more than two scans. But it was constant sort of keeping an eye on what was happening and having X-rays and things like that. And yeah I mean that side of it was pretty. It was it was, it was pretty straightforward really.

In retrospect he sees the importance of talking to someone about your experience of cancer when...

I never really talked about it with anyone at all. So it, it was very much something that I've gone through. An experience that I had and I never discussed it or talked to anybody because I didn't think anybody would want to know about it. I didn't want, you know I, I especially at that age, you know. I was aware of that at the time. It's like most of my people I knew my age you know it's the last anyone they wanted to, wanted to talk about was me being ill and sort of what happened to me, I don't think. 

I've been able to talk about it a lot more since I got older but in school it, it was literally was something that only I felt I was aware of. It was like a big, it wasn't like a big secret because everyone knew that I was, been off school ill. What the actual particulars of what happened to me and how I felt was a big secret. I never really discussed it with anyone. So I don't know whether that was the, that was a mistake from, from my part but I didn't really, I didn't really talk about it that much. And, but like just said in school I never really had any, any problems.

But who have you talked to about your experience now?

I was I, I just talked to my, talked to my friends in the past, friends that I met in, in university, friends from, from before, you know from school. Then fortunately the other people in my family have had a cancer so I've been talking to them about it as well. And just people in work, just since working in the university there's been people in work that I'm, have suffered from various types of cancer and I've talked to them about it and shared experiences. It's been, I've talked about it a lot more seriously in the last few years and it's mainly because it's because it's with people who have suffered from the same thing. 

It's very difficult to talk to people who, who don't, haven't suffered from it without them sort of, I mean, it's a big thing about cancer now is that it, you know it is one of the, is the big sort of fear, buzz word of the, you know, it makes people very frightened talking about it. And people take a step back and sort of think, oh I, you know that, that was really terrible and you know. They're not they don't want to hear about it but it's, it is a bit sort stressful for people to talk about it because people don't want to offend you or don't want to, you know, they think, they automatically assume you're very sensitive about it, you know. They're right to think that. But I, I just never talked about it really with anyone not even my parents I don't think really, not, not in depth, not when I, not when I was a child, not when I was young and a teenager. 

I never discussed it. And I would advise people if they, if they feel they want to then to sort of find, you know, to, to do it, talk to people about it. I mean it, I was very,  surely it's extremely difficult at that age but I, I didn't and they can, I don't think, I don't think it helped, I don't think it really helped to be honest. I think I would have been in a bit better position if I'd done that. Yeah so I, I didn't I didn't talk about it really. It was very much something that I kept to myself.

A lot of the time I've, I've thought about if there was some way I could volunteer and do some kind of, anything or any kind of work with young people who suffer from cancer because I just feel from my own experience although I've got through it and it's, it's probably had a positive effect on me overall although I don't know how I would have turned out if I hadn't had it but. I'm, I'm not glad it happened to me but I can see the positives from it happening to me. It was, it was a, it was absolutely horrible experience that I went through and it was. It was an experience, I felt alone, I quite alone when I was having it and that’s no, that’s no observation on the people I was being, treating me or my parents or anything. I just think it’s one of those diseases that really isolates people when they are having it because anybody who isn’t suffering from it can’t, you can’t make them understand how you feel and how, how. It’s very difficult to describe when you’re having any kind of treatment like that.

Said that his teachers didn't put any pressure on him to do well at school because they were so...

A very, very strange experience because. I mean I certainly wasn't a. But I wasn't a troublemaker in school but I was, I could literally do no wrong when I came back [laugh].

And I was just let, allowed to basically do. I, I obviously did the work and everything but it was very much no pressure which to be honest in some ways I kind of think has affected me in a negative way now because at that kind of age when you're sort of getting to thirteen or fourteen children start to learn about careers and you know selling themselves and going out and achieving what they want to achieve. And obviously I missed a large portion just through not being in school but that, none of that really applied to me. That, that's the impression I, I got from other people. And more impression that I kind of imposed on myself was that I kept on hearing that I'd done so well in the fact that I was still here and that was all fine and it was great. And it was not until I finished university about two and a half years ago. And I went out and I got, I got a regular type of job that all students get now when they get, just to get by. And I kind of feel now as if I've missed out on that kind of. I haven't got that attitude that lots of other people have that I need to go out and be the best I can be and sell myself. Because part of me kind of feels like I will never achieve anything as, as, unbelievably amazing as actually still being here because of the fact, I was made to, I was, learnt in hindsight and from what lots of other people have told me that they, that they, what they learnt when I was having the treatment or when I was ill is that I basically wasn't going to survive. And it was very much, and when I came back it was, there was never anyone really pushing me to sort of in school. I'm not blaming anyone for it. It was inevitable that I would do the same thing but I kind of feel a slightly less, less well equipped when I, immediately after I graduated and going into university. I didn't feel as if I was on mentally and emotionally on a level playing field in terms of getting out there and getting, you know just pushing myself because it was always quite free and easy in school in the key times when I was, you know, doing my exams. I got good enough grades but it was never. I never felt any, any pressure at all because everyone was so happy that I was there and just this whole doing it, you know. And just they were so proud of me for be still doing that but it was, it was good in that sense but you know your life is extremely different, different from being in school as it is. But it's even, was even more different for me because you know there was no pressure at all. And I went on. I got, got good enough grades and I did, yeah I did quite well.