Interview Section : YouthHealthtalk

Interview 14

Age at Interview: 21

Sex: Male

Age at Diagnosis: 14

Background: Works as a volunteer administrator assistant at Barnardo's. Single; lives at home with mother, father and older brother.

Brief outline:Diagnosed in 1998 with two brain tumours (germanomas). Treatments: surgery (biopsy, craniotomy, shunt fitted, replacement of valve to shunt). Thirty radiotherapy sessions. Lifelong hormone replacement therapy. In remission.

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Can't remember much about the diagnosis but his mother recalls how the consultant explained that he had a brain tumour.
Print Son: I remember going that week for a scan at one of the other local hospitals. And then I remember seeing lots of doctors looking in my eyes and all sorts and then I remember them coming back and saying that they've discovered these tumours. And you know when someone tells you that you're a bit shocked, you don't really like you know in to your head. Mother: But relieved as well. Son: Kind of happy that they knew what was going on at last, because I didn't have a blooming clue. I didn't know what to expect, I just thought “What's happening to me? Why have I gone like this all of a sudden?” I was a healthy lad, used to be out every night playing football till dark and, then - Do you remember how they told you? Were you with your parents at that time? Son: Yeah, I think... Who told you? Son: I remember the doctors come to the bed, I think they had told my Mum, took my Mum and Dad off to tell - you know in another room and then they came back and told me. Mother: The consultant sat on the bed with him and held his hand. And he spoke to, he didn't address us, and he spoke directly to [son] and said that he, he explained it all in, in very simple terms to him that they'd found something inside his head that was stopping his body working properly and that they were going, he would have to have an, an operation that, that they were going to do their damndest to sort it out. And asked him, he said “Will I be asleep when you do the operation?” [laughs] And he said “Yes, if I've got anything to do with it, you will” [laughs]. But he, he actually answered questions, he, at that point I don't think [son's name] knew what to ask him, but he did express relief, he said “I am glad you've discovered what it is because I thought it was something nobody had ever had before and you wouldn't be able to do anything at all about it.” So I think at that point Mr [name] was your favourite person wasn't he. Son: Yeah. Did you, do you remember? Son: Not, no I don't remember any of that, no. It's all a blank.

Describes having a mask made and feeling uncomfortable during the radiotherapy preparation session.
Print Son: And we met with the doctor and he explained about radiotherapy and how it's done and he was, he was a brilliant doctor he was crazy, he, he really was mad. But - Mother: He made you feel - Son: Yeah, really made you feel at ease from the moment when I walked in to the room. I can remember sitting down on the chair and him pulling my trousers leg up and looking at my socks and I had some I forget, some Simpson socks on, he said “Oh that's okay, you can join the silly sock club with me and he showed me his socks.” And then after having that we went back, I think another, about a week later and I had to have the mask made for radiotherapy. I can remember having that done, they put this stuff on my face and it was all cold at first, wrapped bandages round my head then with this on and it all went really warm. And then they took that after that because it was set and went back another week or so later and they made this plastic mould of my head and that was kind of scary that was, when you saw that. I was trying to think what film, something I think like Total Recall or something like that in there which was, its scary. And I can remember them to put all sorts of different marks on the mask and that was horrendous because I had to lie down on a bed in this mask for about an hour and a half, face down and I was hot, I was horrible and warm by the end, and I was in tears, my nose was all running and stuff, it was horrid that was. Because I had to lie down for over an hour and a half to put all these little marks and all sorts on the, on the plastic of the mask to align it with, for when I had radiotherapy and lying down on your stomach for an hour and a half when you're not feeling well anyway is... Mother: And it was sort of... Son: Summer. Mother: Summertime yes. Son: It was early August so warm as well, it was nasty. But then I started radiotherapy a few days after that and that was, radiotherapy was strange because you, you don't feel anything but then you get the effects of it, the tiredness and your hair falling out.

The surgeon operated to take sample because it was not possible to remove the whole tumour.
Print Son: Then they eventually said I could go home for a week because they told me then that I'd have to have a neurosurgeon, oh neurosurgery is it? Mother: Yeah. Son: Craniotomy. Mother: Craniotomy. Son: A craniotomy done to, for them to take a sample of the tumour as it was too close really to, to the optic nerve for them to operate because of a risk or blindness and a few other things which I don't really remember much. Mother: Well the one is, one was very deep on the pituitary gland and the other one near the optic nerves so they thought they could cause the brain to bleed if they messed around too much. So they said they would take as much as they could and they did certainly just enough for the sample to do a more close diagnosis. But obviously it would depend when they got in there what they would do and that was what, that was all we knew. So? Mother: We were told after that it was more bloody than they thought and the tumour was quite, as I say quite close to the optic nerve so they, they hesitated to delve too far and removed just enough to do the biopsy. And we were told it would be about fourteen days to the result and it was actually more like three weeks and that was the most horrendous time of our lives [chuckles]. We were able to bring him home after that. Son: Whereas before, like before I had it I was home, okay, they were allowing me to come home for a week, and it fell on Father's Day so my Dad just said it's just like the best Father's Day present he's ever had, me coming home just for that weekend.

His shunt blocked and he slipped into unconsciousness - which neither his mother nor his GP recognised as a complication to do with his shunt. He had to have the shunt removed as an emergency procedure.
Print Mother: So that, because of how unstable he was and then they took him down for an emergency scan and that's when they found out that his shunt had failed the, the - Son: Valve. Mother: - valve in his shunt. At first they thought there could be problems with the whole shunt in which case they said when they got the scan they might have to replace the whole thing but as it turned out they were able just to replace the valve so that he didn't have to have the two, like two operations with the incision and everything. So the fluid was not going through to the stomach? Mother: It wasn't going through to the stomach so he was, he, also as well because he'd been vomiting he hadn't been keeping any of his medication down so the, all the other hormonal things then were going haywire as well so that's why he, the deterioration was so rapid. Because we, we didn't know about the hydrocortisone, because they were able, obviously they knew when he got to hospital they gave him an intravenous hydrocortisone injection so that it got in to his system. Again, again his body didn't handle the stress so fighting illness or anything going on in his body where our bodies immediately there's something wrong with them your body kicks in with that hormone, [son]'s body wasn't doing that and because he don't, taken his dosage in the night and he vomited he obviously had none in his system to fight whatever it was that was going on. And the shunt has been there for how long? Mother: The shunt has been there now since, well since that first operation. Son: May '99, well May '98. Mother: May '98 he had the shunt fitted the first time and then it, they, they revised the- Son: Valve. Mother: - shunt, the valve then in November '99 and since then touchwood. Son: No troubles at all. Mother: - there's been no problems at all. Because prior to him having this crisis they had talked about possibly removing - Son: The shunt yeah. Mother: - the shunt and after this he's “No way, you leave it where it is.” Son: Yeah. Mother: Because we, we really weren't sure whether it was a good thing or a bad thing but we thought well why remove it if it, if it was working fine before. Son: It was doing its job. Mother: But they said its just one of those things that can happen that because they, when they put the shunt in they made allowance for the fact that he probably would do a lot of growing and so they allowed for it going in to adulthood anyway so touch wood there should be no more problems.

Says that he owes his life to the medical team that has treated him since he was sixteen years old.
Print Son: Yeah. Most, I can't think of many doctors that any, I can't think of any doctors which, or nurses or anything which I've dealt with where they've made me feel uncomfortable at all through my different people oncologists because I've had a couple of different ones now, a couple of them have left to go to different hospitals and different nurses and all of them have made me feel very relaxed and they've all been friendly, very down to earth. Spoke to me like well when I was young spoke to me like an adult sort of thing and spoke to me you know treated me with respect and all that and I can't complain at all about that. The treatment or help and everything, the way they've dealt with me over the like years or whatever they've been brilliant, I mean I owe my life to them so but all, everybody just from the nurses to there, the neurosurgeon and all that they've been brilliant. I mean the neurosurgeon he came down, after doing the operation came down in the middle of the night after having been up all day sort of thing to see how I was getting on like I remember my Dad telling me about it, he came to see me about 3 or 4 in the morning just to see how I was getting on after do, doing surgery all night and all day he just came to see me. And that to me was amazing. I've got so much respect for these people, so much. That's good. Son: Just, they've been, oh I can't thank them enough, any, anything I could say would never be enough to just thank these people who've dealt, I've dealt with over the last so many years because they gave me life, that's all I can say. Mother: You've had a lot of support from the Macmillan nurses. Son: The Macmillan nurses yeah. The Macmillan nurse I had was wonderful from talking to my parents and my brother, coming out to see me when I wasn't too good feeling, when I was feeling down and stuff or just giving a, have, speaking to me over the phone or things like this or phoning up when I was still in school trying to help, sort out problems or things like that, the Macmillan nurse I had she was wonderful. Uh huh. Okay. Son: So. In general have you felt that you could talk to them and ask questions? Son: Yeah. And it if you didn't understand something could you go back to them and say “I don't understand can you explain it to me”? Son: Yeah if, there were certain times when I've not really, when they've explained something and I've said, I've looked at them a bit cross-eyed really and they've gone back over it a bit slower or just kind of explained it with a bit more simpler words and stuff. So they've always been very open and willing to explain things over and over sort of thing to me just to make sure that I understand what's going on and all that.

Now has check-ups once a year. He is reassured when he compares earlier and more recent brain scans.
Print Son: Probably about 2000/2001 where they said there was... Not so much to see? Son: No, there was no sign, no evidence of it on the, like the scans at that point, like compared to the old ones. When they looked at the one then the other the difference where they could see the big marks where the tumours were but now at that point there were, was no sign of them or things like that. So I think probably about, about two or three years after where they had said they'd gone really. And since then it, they, I've seen all the scans since, there's been no sign and we've been shown, I mean the last, I think it was the last time we went we were shown the, a couple of the original scans compared to the new scans and the difference is incredible. Yeah. That's good. And you have seen those? Son: Yeah I can, I can look at them now and can understand, now I can understand them. I mean when they were showing me like through like the year after, the first few years afterwards I didn't really understand them that well but now like when I see them I can now see what they mean and I can see what they, what part of it was the tumour and notice a difference and see well there's nothing there any more, not even like a little tiny fleck or whatever, nothing like noticeable. So I know everything's pretty good up there. And how did you feel at that time? Son: Elated. Still am now sort of thing every time, every time we see a scan or whatever and there's nothing there it always cheers you up and just reassures you that you are, you've got through the worst of it now. So every time you go to see your oncologist you have a scan? Son: I think well I'm not sure its, he normally asks for them to be done possibly just in between going to see him. Uh huh. Son: So when like I go and see him next he's got the results. Because I normally see him about January time isn't it every year now. Mother: Yes. Son: The way it's worked out but the last time I went for the scan was about October some time wasn't it? Okay. Mother: I think it was requested as a preparation to find out your possibly having a growth hormone. Son: Yeah they were yeah. Mother: So he wanted to be sure what the situation was before they did any further tests. Son: Yeah.

Felt anger and frustration whilst under going radiotherapy.
Print Now tell me about that period in which you were receiving radiotherapy and about your feelings about that anger, that fear that you had in you? Son: It's frustration and just a lot of “Why, why me? Sort of thing, why not somebody else? Why did something like this happen to me?” And just feeling really hard done by. It's, you never in a million years do you think something like this will happen to you, especially at the young age I was. And just felt really annoyed and just fed up basically that it was affecting my life, it was stopping me from doing what I enjoy doing and just bit it's just I've been like thinking about it makes me go in to tears sometimes, just thinking. Just really, annoyed it just really gets to you, it just really got to me and really made me upset and then the upset was just turning to anger, sort of thing, but like Mum says, screaming at the cancer sort of thing, saying “Why me like?” telling it off, stuff, so. Were you telling the cancer? Son: Yeah. That you were going to beat it? Son: Yes. Just said, “Yes,” you know, “I'm going to beat you.” Okay. So you were shouting at it? Son: Yeah. Okay. Son: And banging stuff, - Mother: Yeah. Son: throwing stuff, cushions, pillows and stuff, all sorts of things like that. Did you find relief in doing that? Son: It, yeah, it did I think a bit it got rid of some of the anger inside and let you relax a bit because you felt like you were doing something worthwhile telling it off and like if somebody has a go and you and you have a go back at them, so if somebody's like saying stuff to you that's nasty and then you have a go back at them it makes you feel better sort of thing, if they're saying something horrid about you and you do that. It was kind of like that, saying if like cancer's being horrid, horrible to you sort of thing and then you're having a go back and it makes you feel a bit better you know, like you've stood up for yourself, so kind of like that. Your way of sort of coping with it, confronting it? Son: Yeah. Expressing the feelings about what was going on by having, being like all these different things going on through your, in your head about it all, so it helps you cope with it to better like I don't know whatever. Were you sort of angry with yourself sometimes, or angry with other people? Or was the anger directed to the cancer itself? Or it was a mixture of all of these? Son: Probably a mixture of all, sometimes I'd get angry with myself because I wanted to do things and couldn't do them through the tiredness and stuff, and it would be like “Well why can't I do this? I used to be able to do that,” and all this, so, but it was probably a mixture of all the different things. Just being angry at the cancer, myself, everybody else, the world [chuckles]. Does everybody else includes your parents, your brother? Son: Yes, my brother, I remember shouting at them lots of times about stuff and... Yeah, them taking it sort of thing and then I'd feel all guilty afterwards for having a go at them and then normally end up in a tearful hug, and them sort of saying “It doesn't matter, it doesn't matter, you just got to,” Mother: It was being, I think it was important that we were all open and honest with each other about how we were feeling as well, that he, he knew that we felt sad for him and we felt anger as well. And we sort of just kept saying you know, “We've got to talk about it and keep it open and not bottle it up,” because it's sort of, it's like you say it's fighting, fighting your corner. Somehow or other to try and get yourselves through it. I mean his brother was only, there's only three years difference between them so it was quite hard for him as well. The anger came out in him while he was going through his radiotherapy and we had a lot of sessions didn't we, where you and I were, you know, if you remember, but I can remember sitting with him upstairs and we threw things at the wall. Son: The floor mat. Mother: We threw cushions, I said, you know, “Let it out, it's not, no shame to be angry or to be upset. If you feel like crying cry, if you feel like shouting shout,” and I, I said “That, that's how I was getting through it,” you know, we, we'd, we'd say you know, “Damn,” we used stronger words than that [laughs] but we shouted at the cancer - Son: Yeah. Mother: - and told it in no uncertain terms that it was going to go and you know it, in the end I think as well he, he desperately wanted to be a teenager again. Son: Yeah, I wanted to be a normal.

He successfully completed his GCSEs but it was a long struggle.
Print You studied at home? Son: I studied at home. About, probably about part way through year eleven towards the later end of year eleven, from right up Christmas time onward then I used to go in for a couple of lessons a week, like some of the science lessons and the French lessons where the science because the more practical hands on stuff and French is quite hard to learn without having a tutor, that your teacher there, so but the home tutor was marvellous, she absolutely brilliant. One of my, her helping main reasons I managed to get on and do some of my GCSEs because they kept, they kept on at me, like helping me, I mean she was a big Aston Villa fan which really helped, because we had something on a common ground which we both liked. So sometimes she'd come to tutor me and I wouldn't be feeling too well or I'd be tired so instead of like tutoring me there she just, we'd just talk about the football from the weekend or something for a while until I felt a bit better and got on with work. And then when I was going for these lessons eventually we arranged it, she would drop me off at school for the lesson or she come from, I'd go in for, in the morning for lesson and then she'd come pick me up and bring me home to tutor me, so she was wonderful. I owe so much to her because she kept me going, kept me going sort of thing throughout it and kept on pushing me to carry on and not to get, because I can remember doing that time a lot of feeling do I just want to give up because it was all too hard and too much, feeling very angry at the time. Because I mean I had to work doubly hard, more than, do you know what I mean, I was a clever lad before me illness, I was in all top sets and A's all the time and everything like that, so, and then when I tried to start doing, back and do work then after being ill and find, it was very hard and tough to do it, so it was a struggle but. Mother: An immense struggle. Son: Immense struggle, yes [chuckles]. Mother: We, we, it, that was a, I think that was almost as hard as when he was starting to go through the radiotherapy, because he was having this internal struggle with himself. This battle that he, he knew he knew these things but because the memory problems as well, he had to overcome those, he had to learn new ways of learning, and new ways of recalling the information and that was a, a real hard slog. And he had also the problems with his eyesight because his field of vision was damaged by the tumours and the surgery. And so we had to get the visual impairment service was involved as well so he, he could have things enlarged at school, all the papers, work, anything he was reading could be enlarged, we borrowed a magnifier that he could use for, for reading books [laughs]. So at the same time as you were trying to go back to your studies you have to adapt yourself because of some of the effects of having the? Son: The ill, yeah. Like your short-term memory? Son: Memory, vision, the tiredness, because - Mother: He also had diabetes insipidus. Son: Yeah, I got a type of diabetes, diabetes insipidus which is a, controlled by tablets, but it means you can't concentrate, you're, you're obviously going to the toilet very often, you need to go to the toilet all the time, so. I was having, I was having to deal with that and it was getting like them getting all of the medication used in right, find the right level so I wasn't having to go to the toilet every five minutes. And that was another problem when I was going to school was being able to go to the toilets because obviously in a high school you get a lot of people who hang about in toilets smoking so a lot of the time the toilets would be locked and you'd have to get a key for the toilet which caused more problems sometimes getting hold of one of these keys.

Became closer to his brother, who continued to do normal things like having a laugh, talking about football and playing computer games.
Print Son: Well, I remember like when I was in hospital and just noticing you know how, why he was, because you know you love your brothers and stuff but until something like this happens you don't realise how much sort of thing they care for you. But I can remember him coming to visit me, he was doing his A levels at the time, I can remember him going to go being like doing them and coming over from the hospital in the afternoon after doing an exam or something like that, just to come and see me, and nip out into [city], go shopping for me. And then I remember the one time while I was in hospital we had a wheelchair from the hospital, he took me out into [city]; pushing me like, pushed me around [city], up some big hills as well which was pretty like, they were pretty like tough for him. But no he's marvellous, he's been really, since, since then sort of thing I really owe, he's become one my best, we're best friends really, sort of thing, he's great with me. But... Were you able to talk to him about, about how you were feeling? And what goes in your mind at that time? Son: I don't really remember talking to him much about it, I tried to sort of talk him, he's like cheer me up really, have a laugh with him and just try and keep my mind off things like that, you're always just would be, would be my brother basically. And I remember like time, we used to go down, in the afternoon when I was in hospital when I was recovering in the afternoon sometime he'd take me down to the café downstairs in the wheelchair and there was loads of lines painted on the wall, I'd be following these lines almost falling out of the wheelchair and - oh. You were falling out or? Son: Yeah practically he was just following these lines, honestly he was like a race car driver or something but he just used to like cheer me up and. Mother: He did normal things with you. Son: Yeah, he did normal things with me, it was just did something different, sort of thing other than think oh you know, tried to cheer me up and just keep things more... Mother: Keep you up-to-date on the football and... Son: Yeah, keep football and he brought a Play Station in like a few times, hooked up the TV and had a game of football on the Play Station and things with me.

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Discovery :

Hospitals, doctors and treatments :

Side-effects, feelings and coping strategies :

Self-image and fertility :

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