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, heres 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 hes always been one to face up to things that it’s better at his age to tell him the truth and then wed 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’Were still stuck with you.

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

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, hes 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, weve 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.

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.

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. Shes 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. Therell 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.

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.