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].

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 shed 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, wed 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 shed 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 as 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 meansyou 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.

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 hes marvellous, hes been really, since, since then sort of thing I really owe, hes become one my best, were best friends really, sort of thing, hes 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, hes 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 hed 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.

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 hes ever had, me coming home just for that weekend.

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 m?

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.

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.