Interview 05

Age at interview: 20

Age at diagnosis: 17

Brief Outline: Diagnosed with a malignant brain tumour (anaplastic germinoma); his treatment consisted of six weeks of radiotherapy to his head, speech therapy, physiotherapy and occupational therapy. In remission.

Background: Student; mother is a teacher. Mother and son were interviewed together. He is single and lives at home.

Experienced a sudden deterioration of his health and became unconscious.

Son' I was about 17 ' and then I'd just come back from, from University, hadn't I? For the day and then I didn't feel very well so I went up and had a, had a bath an early night and I then just stayed in bed the next day, didn't I? And then I got up, I remember this, and I went downstairs and I went through into the kitchen, into the dining room and immediately, just as soon as I went through that door I then felt this massive rush to be sick. And I looked around to just try and go, go to the toilet, I was ready, ready to run so I went to run and I fell over and I just ended up being sick on the floor. And then I, I, I don't know what I did, I think I went into the kitchen, I went into the kitchen to sort of like finish being sick and then I was being sick and then I stopped after that, wiped my mouth and that and then I went into the, went into the lounge to phone Mum and say I've, I've been sick and everything and then I just felt really ill so then I just went to bed for the rest of the day. And then I think it kept up like that for a few days, didn't it? I kept being sick because I was'

Mother' You had about a fortnight and you were getting worse and worse. Headaches started, sick a lot and he was complaining of a, a rushing sound in his head.

Son' My ears.

Mother' In, in his ears.

His mother discusses the differences between a children's unit and an adult ward. Staff on...

How did you feel, did you feel in a way treated like a child or a'?

Son' When I was at the hospitals? 

What's your opinion?

Son' I think in the ward I was looked after very well, everything was well nice, was really nice to me and I couldn't really fault anyone there and I made lots of friends down there as well, didn't I? 

Mother' The care there wasn't just medical. The, the support was for the patient and his family.

In the children's ward?

Mother' Yes. As soon as I'd got there accommodation had been arranged, [cough] I didn't have to think anything. We were catered for. In the second hospital with his radiotherapy it was an adult ward and it was just the patient. Now the difference was huge and it was, it was a, it wasn't a nice experience, certainly in those first few days.

His mother explains that they were amazed that radiotherapy could be so successful at treating...

Mother' And the consultant made time the next day and said, 'oh yes,' you know, 'come up, make sure you stay behind after radiotherapy and I'll show you.' And she put the x-rays up on the, I suppose they were CT scans, on, on the light so that we could see and showed us this big mass and said, 'it's about the size of a plum.' She's very matter-of-fact, how she described it. It was the size of a grape when we first had it diagnosed but 6 weeks later it was the size of a plum. And she just said very matter-of-factly, 'but it's gone now.' And we were all amazed after sort of 10 sessions of radiotherapy, you know, 'you mean it's gone?' So she said, 'yes, it's, it's one of the best tumours, if you're going to have a brain tumour it's the best one to have. It's the most sensitive to radiotherapy.'

Is this the germa '?

Son' Germinoma

Mother' Anaplastic germinoma. 'And we would fully expect it to have gone. There'll be a lot of debris left but the actual tumour itself no longer exists.' And we were absolutely amazed. In fact, I think [son] cried [laughing]. He said, 'how can it go so quickly?' He was quite emotional about it and I was just gob smacked, you know, that this big thing, how on earth can it disappear? I mean you can't take it out. But the radiotherapy was so effective, so that was a big, a big day to think that, that tumour now was not the threat that it originally was. You know it was threatening his life and then all of a sudden after 10 sessions that it was dead. So that was quite a celebratory weekend [laughing].

And how were you feeling at that time?

Son' That's the time that I can't remember anything. I can't, I think it's, like when I, when I, I come, when I went beforehand, a couple of months ago, before I was, when I went down to [place] and when I got back out of the rehab. I can't remember anything. Literally, it's all gone.  

A junior doctor gave a poor prognosis to the mother of a young person with a brain tumour, which was later corrected by the consultant.

Yeah, it was very worrying because he just wasn't, he wasn't conscious of what was going on around him, he was like somebody that you see who is very badly brain-damaged and has, has no control over limbs, they're not able to communicate with you. He couldn't even communicate with the usual message of the thumb up or the thumb down you know, not, things weren't so bad. He just couldn't communicate at all and we were very worried. The staff were clearly worried that the light-heartedness had sort of gone. They were monitoring very, very closely, the surgeon, the surgeon and his staff were up at regular intervals over the next 3 days. One junior doctor appeared and said, 'I've seen this before, we call it locked-in syndrome,' and I said, 'You know, does he get better?' He said, 'No, it's often permanent.' And that was one of the worst feelings I have ever had; everything looked very black whereas before, I'm quite a practical person, I'd got my sister, who was a nurse, supporting me [cough] and we were very positive and we had a lot of help from the nurses. But at that point that was the worst scenario that he was actually left badly brain-damaged without any hope. At that point I felt I'd rather, rather he had died than live the rest of his life in the state he was in. But soon after that the consultant came up, well no, the consultant's registrar came up and said, 'No, he shouldn't', this junior doctor should not have said what he did say. She still feels, he was too well, even though he was very, very seriously ill, there was too much that he was able to do that would give him hope, give her hope that this wasn't permanent.

The diary and the photographs his mother took have become his 'memory' of that time when he was...

Son' I can't remember anything. Literally, it's all gone. It's like I can only see little skips, little bits of information like when the lady came and checked my, to check my pulse once and then a couple of shots that I can imagine. And Mum's been brilliant with it, we have the diary and the book and the, all these shots that she took of me. That's my memory at the moment with the thing and that was really frustrating that, here's Mum like talking, talking about me or where I was and everything and I can't remember anything about it and it was me.

How you felt when you became aware of everything that was, that had happened to you?

Son' It was...

How did you, how did you feel?

Son' It was a bit weird because then I, then I started to read the, the diary and look at the pictures, didn't I? And I couldn't actually believe that, that was me once, that, that was me and that if you look where I was before I was then, before I was ill, to then like I am now, I couldn't quite understand where, where it, where it had all gone and why I, why I couldn't remember it. Well, it was bit frustrating, really, because I used to see these photos and think, that was me at that time, what, why, why was I there? You know, because I, like I didn't, I didn't know why I was there or what I could, you know, it was a bit hard, really. But then, I '

Mother' I think you read the diary within a couple of weeks of getting to the rehab the first time and he just stopped and looked at me and said, 'Mum, could I have died?' And I decided that as he was virtually 18 and, and he's always been one to face up to things that it's better at his age to tell him the truth and then we'd go from there [cough]. So I just said straight away, 'yes, you, you could have died.'

Son' And that sort of, I think, gave me the big impetus'

Mother' ''but you didn't,' I said.

Son' That sort of gave me the big impetus to sort of like survive like or get better.

Mother' We're still stuck with you.

Son' Yeah, you're still stuck with me [laughing].

Describes strategies he adopted to overcome his memory problems caused by his brain tumour.

Has your memory improved?

Son' Yeah, it has because I've, because I learned all these different things like I had to write a diary every day about what I'd, what I'm going to do and about what I've done and like all the, all the, just like what I'm going to do, what I've done and what I'm going to do. And that used to be a big help to me because then I used to look at it, oh I've got to do this next and oh, I've got to do that. I'll ask Sir this question, yeah and, and then [sigh] I don't know when, when I finally felt as though my memory was improving.

Mother' Well, it gradually improved as the months went on because there was no more radiotherapy and his brain sort of settled down and gradually it got rid of the debris [cough] from the tumour. So as that happened, his brain, you know, settled [cough]. Also, he's been taught to use different strategies so it's a combination of improvement'

Who has taught him?

Son' Well, my '

Mother' At, at the rehab.

Son' OT.

Okay.

Mother' Yes, the occupational therapist.

Son' The occupational therapy used to teach me to, if I forget something, go back on what you're doing, like if you're walking along the street or something, go back to where you were and then start again. Think about it and it usually comes back into my mind.

Mother' And we think up our own strategies.

Son' Yes.

Mother' Because like there, there are times, we've all done it, when you go upstairs and think, well what did I come up for? Well, how do I work that one out? I stop and think, well what was I doing before I came upstairs? So I've taught [son] that.

Son' And like, I've got a few things where I keep my wallet and phone, I always keep it in the front part of my bag so then I can easily, it's easily accessible. I always keep my phone on the charger, which is there. So then I know where they are and I know, know where they are and what they can do or I'll have it on my, put it on my bed and,

Mother' Well that was after several times he lost his phone or his wallet [laughing]. And it caused us quite a big panic, you know, the whole family was looking for things [cough] and then we said, 'well, how can we prevent it?' So you, you sort of work out strategies learning from problems that have happened. So it's an on-going process, really.

Son' Like every night, I used to put in on the charger that was on that table and I just, I did, I do get a bit frustrated sometimes, I thought, how, how I was. I can remember like bits of it about how I was before and then how, to how I am now. I think, this is really bad, isn't it? Because you, you can imagine like where I used to just put my phone there and get on with life and now I have to put it there so I can remember it. But it's just a bit frustrating but I just think it's part of my time to be a bit like that, if you know what I mean.

His mother explains that the diary she wrote for her son in intensive care was also useful for his brother, who found the illness hard to accept.

I was very glad I wrote the diary and it also came in very handy for 's younger brother who found it very difficult to accept a) the illness and b) the ups and downs, the sort of crisis we were going through, especially as he was 40 miles away living with my sister at the time. He, he felt very detached, part of him wanted to be there, part of him wanted it all to go away because he was only 15 at the time. Yes, so that, at that stage he still wasn't sure what was going on and was sort of more like avoiding it rather than getting too upset. 

The diary was important for [son] as well, because when he began to accept what had happened he came down [cough] to the first hospital and stayed with me for the weekend and he sort of brought his rugby video and his bottle of drink and his rugby magazine and sat in front of the television watching, sort of almost ignoring what [son] was doing, which I think was sleeping most of the time. But after a while he sort of looked over at [son] and put his thumb up and said, 'Are you alright, mate?' And [son] actually responded the same way.