Interview 01

Age at interview: 26

Age at diagnosis: 17

Brief Outline: First, diagnosed in 1995 with a brain tumour, chorion carcinoma; relapse 6 months later. Treatment: surgery (biopsy); chemotherapy, radiotherapy. Long life medication. In remission. Second 1997, mixed teratoma on cerebellum. In remission.

Background: Lives on his own but he is supported by family and social services. Help organised a charity event for teenage cancer patient and their siblings in Xmas 1998. White British.

He found the consultant's honesty very 'uplifting'.

And then I moved to this other hospital but once I got there it was incredible because I went through the doors, it, it looked like sort of a 1970s comprehensive school, sort of it didn't really look like one of the world centres of cancer medicine. And, but as soon as you walk through the door I sort of got this feeling that everybody from sort of the cleaner to the top consultant was there out for me. They, their intention was to do the best for me the patient. And I, I got that sort of, it felt as if the hospital was sort of self-selecting, the best people just ended up there. 

And you know I, I saw the consultant who was going to treat me, I saw him at a different branch of the hospital in London and he was very straight with me, straight in the sense that I said to him 'Am I gonna die?' and he said 'Yes you might but I will do my best to make sure that you don't.' And I'm the sort of person that likes it straight like you know just the facts, not any waffle or anything like that just, just give me the facts.

And I did actually find that very uplifting. That here was someone who was very honest with me and said 'Yeah, yeah I acknowledge that but I'm gonna try my hardest to make sure that it doesn't happen.'

Reported visual problems and was obviously unwell.

In 1995, in April '95 when I was just 17 my birthday's in March I was diagnosed with a brain tumour. That's wrong sorry I, when I was just 17 I began to have the, have strange symptoms of illness. I had, I couldn't see properly it seemed as if that if I looked at a certain thing in the sky for instance like a bird it, if I looked at it sort of sideways on I could make it disappear. Or if I was reading a sign on, on a wall or a road sign some of the letters would be missing and I would just see a blank sort of area. 

And then more scarily than that I started to see, when I looked at people's faces I would only see half the face and the other bit would be just a blurred blank really. It was very frightening. I gradually got worse.

I actually went to see my local GP and he said it was growing pains and sent me away on my bicycle home, meanwhile I got worse and because of the visual problems that I was encountering I went to see a specialist eye person and they looked at my eyes and did various tests and saw that the discs as they're called at the back of my eyes were somewhat lighter than they ought to be.

And then they referred me on to a hospital in London where I had a, an MRI scan and that confirmed the presence of a brain tumour. I was really unwell I, I'd gone from healthy to, to this state of ill health in a very rapid way. I'd been quite happy at school, I'd been successful at school both in terms of doing work well and passing my GCSEs and, and also you know I, I enjoyed it and went to the gym and led a healthy normal life.

An ophthalmologist (eye doctor) recommended an MRI scan after doing various visual tests.

You talked a little bit about the tests can you explain more?

I had the, the ophthalmologist, the specialist eye doctor, he looked at my eyes and did various tests including something called visual fields which looked at how I saw the world as it were in different parts of my vision to see really what, what I could see when I was looking straight forward. And you do this in a simple test, its just you sit there with your face in front of a, a machine and it flicks little lights on and off around your, your periphery vision, your, your main sight and so on and from that you get a picture of what vision you do actually have. And this showed that my vision was quite impaired. And he also noticed that I had quite pale discs at the back of my eyes and this is used by specialists who understand and to see how, how healthy the eyes are. And he saw that they, they weren't as they should be and recommended that I have an MRI which consequently I did.

As a 17 year old on an adult ward he was with people his grandparents' age, but enjoyed the...

In hospital because I was 17 I think that the sort of, there was, well there wasn't really the, the, there weren't teenage wards really they, there weren't teenage sections available really for people of 17 or adolescents. They were either adult wards or children's wards. And because I was 17 it was seen as more appropriate to put me with adult wards, in an adult ward.  

Now its got sort of, it, it can go either way I think, you can either be in a situation and think all the bad negative things about it or you can find yourself in a situation and think and, and try and draw out the good things in it. Yes there are bad and its very important to acknowledge those but for instance I was in an adult ward and really what an adult ward means is that its if you like its not people generally in their 20s, its not people in their 30s or 40s, its generally people your grandparents' age. 

But it was very good because there was this, I, I was in a hospital in London and I was in a ward bay and opposite me was a, a pensioner but he was a real cockney Bow bells kind of guy and we used to make each other laugh so much that you know both, because we were both in a really sort of dreadful situation I think that we just got on with it and that, obviously is a situation that throws people together.

And age, age in that sense didn't really have the, it wasn't an issue to, to, to me. But I think its not so much that you need to be in a certain ward as such but you, your needs as a teenager as you know a, a young person need to be addressed differently from those of a young child, an adult in their 30s or an old, older person.

Recalls being taken for numerous radiotherapy sessions while he was in intensive care, and...

So, so I started on the radiotherapy and the intensive care unit was at one end of the hospital it seemed and the radiotherapy suite was at the other end so I remember being taken there on, on my bed and sort of I had to be bagged manually and there were all these various people around me. And sort of there, there in the corridor there's, on the ceiling in this particular hospital they've got paintings.

But initially I was too ill to have a radiotherapy mask made so this meant that they had lots of video cameras installed to watch me when I had the radiotherapy and I basically had, had radiotherapy through my brain and spine but I had my head sort of bandaged to the table basically and they just did the radiotherapy like that. So I'm very luck that I'm not sort of more intellectually damaged or in a worse, a worse sort of state than I'm actually in now. Because I had 57 in the end or thereabouts.

57?

57 doses of radiotherapy.

For some time. And then I finished that and the, I had, my appointment was, when did I finish that, just, I think it was, I must have, that was March 1997. That I finished and I had an MRI obviously to look at what had happened and, and the tumour had been shrunk.

Okay.

That, that was good. I was saying before about the many sessions of radiotherapy I had and someone that I came into contact and became a friend, he calls me Heinz now because of the number of radiotherapy, 57 varieties and all that kind of stuff. Yeah ha, ha, ha and I don't pay out for hair cuts now either. 

But then I went, I returned home and obviously you know radiotherapy does actually leave you pretty flat, just very fatigued and so on and so forth. So I recovered gradually. 

Felt devastated by the news of having a brain tumour for a second time.

After the treatment was successful I went home and I was having sort of monthly blood checks for the, the, the tumour I had, the activity of the, the cancer cells could be measured by looking at the hormone levels, the hormones that it produced in a monthly blood test. So I was having that and I, I went back to, I went back sort of and had some time over the summer to get a bit better and then, I'll just check my notes, sorry. 

Yes so it was, it was actually a year on in 1996 that the second tumour was actually diagnosed, it was diagnosed through this thing of having a blood test and looking at the, the, the marker levels if you like of the hormones that the, the cancerous cells have produced. And that experience was of course very different the first time because at the second point I was, I was well, I was with it mentally and physically and I can just remember breaking down and crying. You know because I'd already had it once and to get another brain tumour was, is devastating.

Yes I literally just broke down and cried when I was told that there was more cancerous activity and then I, and then for a little while I sort of really was quite well I mean I was absolutely devastated, not just quite but really down and unhappy about it. And I think that I have been able to develop this thing because its, its not just in that instance when I was ill but sort of now if you like. I'm a bit like this is how Mum describes me, I can have the downs and the ups and everything like that and she says I'm a bit like those toys that you used to be able to get, with the very big round bottoms, you just push over and they would jump back up.

You know I seem to be a bit like that. So yeah I mean when I was sort of diagnosed the second time around I got on with saying, 'If I die I want this to happen'. I made a Will. I made some funeral plans but it was like that was actually getting those things done in case. It wasn't you know the, the fact I was gonna die, it was getting those sort of sorted and then I could put those issues at the back of my mind and not worry about those things and actually worry about getting better. You know because I had dealt with those particular issues. And yeah they did worry me more but to a large extent those were at the back of my mind.

Okay.

And, and the thing of getting better was at the forefront.

Gained a lot of weight due to his illness and treatment and talks about how this affected his...

So that, that, that meant that my weight went up hugely because of the over-eating but also because of the introduction of drugs like steroids which are very good at sort of dealing with the swelling associated with brain tumours but they've got really nasty side effects like a lot of weight gain, they make you eat like mad.

So I went from a sort of quite a healthy sort of well slim kid up to I think probably 18 stone in about a month, or just over. And this meant that well the, that my skin literally just stretched so sort of on my stomach and on my arms and my back and legs I've got stretch marks. 

I'd put on this weight and so I felt very unconfident about my, myself and, and really didn't like my body image. I saw myself as fat, sweaty and ugly and, and I supposed that no girls would ever fancy a bloke like that. And that was very hard really because you know I didn't, I wasn't completely mobile and couldn't do things like other people could, I just wanted to be as everyone else. Which of course is, is another sort of strange thing for a teenager to want because they want to be different [chuckles].

But I wanted to be, I mean it, its really I suppose when one looks at oneself it, its very easy for me to get into this spiraling descent of, of anguish if you like of, of disliking my, of finding one thing that's wrong and then sort of attaching lots of other things and making myself more depressed really.

But I would for instance go out and see the, the other young guys, they're 17/18, they have sort of nice angular features on their faces and they were slim, you know they had girlfriends and they would start driving and, and, and doing stuff. And there was I, I felt fat, felt round faced, moon faced you know I felt sort of, I, I didn't really feel that I could sort of, and the other thing was that I didn't have sort of general chat. Sort of I, because I wasn't living that life if you like. The only thing that I had to talk about was me. And I didn't want to keep on going on about me because I felt that was incredibly selfish.

So you know I, I think that I probably separated myself from, from my peers.

He was never offered the possibility of sperm banking and felt devastated when at the age of...

Before I started on chemotherapy they didn't take any sperm sample, didn't freeze any sperm. So to be told as an 18 year old guy 'you're not gonna have children,' that's devastating, that's really sad. And also for my parents to know that they're not gonna have any grandchildren by me and I can't imagine you know that's, and how do I go in to a relationship and say 'I can't have children,' am I gonna face instant rejection? 

You know so it, I don't know really I mean I've survived but there are still things on-going for me, education and all that sort of stuff.

So there was no discussion whatsoever about?

Well I was actually part way through the chemotherapy and my father said to the doctor 'Shouldn't a sample of sperm be taken?' and the doctor said 'Its not necessary.' So. And that's terrible.

That was when you, you had your first tumour?

Yeah.

And you know we, we all die but if we have children we can put, there's still something of us there in, in our, in our children, they've still got some of our genes so you know that's a, that's a sort of a grasp at immortality in a sense. And if you lose that, that's very sad. 

And I wanted to teach so that people would sort of remember 'oh that really good teacher at school, Mr [name] or you know they'd still have some memory of me and the ideas and values that I've given them. But because there's now these seizures and, and whatever I can't do that so that, that's sad as well 'cos you know I would have loved to be a teacher or a dad but you know, I don't know maybe they'll make advances in the future or whatever.