Interview 24

Age at interview: 18

Age at diagnosis: 15

Brief Outline: Diagnosed in 2002 with a brain tumour; medulloblastoma. Treatment' surgery to remove the tumour; six weeks of radiotherapy and eight months of chemotherapy. In remission.

Background: He lives with his parent and sibling and works part time as a checkout operator; white British. Says that the music of Bob Marley really helped him during his treatment.

Looking back at pictures of himself before he was diagnosed he realises that he was holding his...

Well it was just a normal Sunday, I'd just had Sunday roast and not but threw up and didn't feel very well at all so went to bed. And then I was off for the rest of the week at school just constantly throwing up and even though there was nothing to throw up just continually throwing up. So I went over to the local GP a few times and they said 'We'll just keep an eye on it for the moment because there's nothing that we can see.' And then it got to Thursday, the Thursday morning I went back over to the GP, still been throwing up constantly and things, not being able to eat because whenever I ate just threw it back up again. So he had no idea so they referred me up to the local hospital where they did all the like peripheral vision tests and how your reflexes are and things and then sent me for a CT scan. The results came back the Thursday night and it said that the results were that I had a brain tumour at the back of my head where the spinal column meets the skull.

Did you have any other symptoms that you could recall?

Not, not that I, not that we knew of at the time because it kind of was a gradual thing but when we look back through pictures from about two years ago then as the pictures get further on closer to actually finding out my head slightly like tilts to the right and you know it's where the pressure was building up. My body obviously just naturally trying to relieve pressure and like a week before the Sunday where I was throwing up I had my Gran's seventieth birthday party and there's pictures on that where now you can see my head is like this but in the pictures my head is right down like that, it's quite plain [laughs] to sort of see but obviously at the time not knowing it was just like that.

No pain?

No, no, no pain just like I said just the head like that.

Describes the care he received from the nurses on the children's ward and how much he learnt...

And what was your experience of being in a ward with children?

Much better nursing care. I'm not saying that there's anything wrong with the adult one but it's more kind of you know nurtured side and you know more, more cared, not that there isn't enough care but it's more personal, you know they got to know you and all the nurses got, all the nurses got to know you and they're all kind of when, when you're feeling good, when you're not, what to do when you're good, you know. Whereas with adult wards I've, obviously I haven't been in one myself but as you see them you know obviously I've been in with people that have been, into the ward and that you know it's not that way because it's an adult ward you're not in there at least once a week so the nurses don't get to know you that well you know. So being on a child ward was an experience. I would call it an experience, not a great experience for the fact that I was having treatment and that and I was in because I was sick but a great experience because I got to meet so many people and learn about different people's illnesses, how other people coped with it you know it was an experience. So like I said from the beginning two sides to it, bad and good.

Describes how he made his decision to have a portacath rather than a Hickman line.

They offer you like two different options, two or three options. I can only think of two off the top of my head. One is a Hickman line, it goes either there or there and it hangs out. Most people called them their wiggly because it's easier. They get, I'm not going to put you off them or trying to you know but they get infected a lot easier, have to be replaced more often and things like that yeah. They're a lot more there, they're a lot easier for the younger children because they're just there and you know. But you can't do a lot of things, you can't go swimming, you can't like for instance with radiotherapy you wouldn't be able to lay on your front, you wouldn't be able to like sleep on your front, if you slept on your front or anything with the risk of catching it on things as well you wouldn't be able to do things like that. You'd have to tape it down every time and cover it up when you went outside because of infection and things like that. 

And then you could, you can have a portacath, which can go pretty much anywhere as long as it can be connected to a main artery or a main vein. I personally had the portacath because with it you can do everything you can't do with a Hickman line. You can go swimming, you can go out, there's like nearly no possibility of infection, there's a very low possibility that you get infected. The only way it can get infected is if the actual surface where they put the needles in, say like the actual needle hole in your skin got infected that might be, that's possibly the only way to get it infected. So I went with that because I thought it's going to be a lot better, a lot easier, a lot, it's not going to show as much, it's not going to be. So I had a, an appointment kind of meeting thing with the doctor who's going to perform the surgery to put it in. And we discussed about where it was going to go, how my radiotherapy was going to be, how I was laying, how I was going to be moved and if it was going to be in the way and things. And we finally discussed it, discussed all this for, for about an hour and finally decided on having it under my arm there. And it was, it couldn't be put in there, because obviously there's sometimes you can't have it there, on having it there under this arm or on my thighs. Luckily [laughs] they managed to put it in, in the first place we planned to put it in.

Talks about having radiotherapy and describes having a face mask made.

When did your radiotherapy begin?

Well I got back from [hospital] down to here and obviously a few weeks back and forth from the local hospital to just obviously check some things and to discuss how the whole thing was going to go. So I'd guess it was a couple of weeks and then the professor came down again with a whole schedule, the routine of when I was going to have radiotherapy, how long I was going to have it for, whereabouts on my body I was going to have it. So I'd say it was about three weeks and then I started on a Monday because for the radiotherapy, well for my radiotherapy anyway I started on Monday, had it every day until the Friday and had the weekend off of radiotherapy and I had that for six and a half weeks.

Yeah that was [laughs] yeah the first thing you have done when you go down there is not necessarily going to just straight away be the radiotherapy. Dependent on where you're having it they make, they'll make a body cast. For me I had a face mask and about like up to there kind of thing made for me. And what they just, they lay you down [laughs], they pour this freezing cold rubber stuff over you and then they turn, and then they turn you over, do it on your back, absolutely freezing cold and then they chill, obviously they freeze it or something, I don't know what they do to it here I don't know but then it becomes see-through plastic which they use and so they set it up on the machine and they set up specifics. And you get little tattoos on you, they're miniscule ones because the machine uses like light to line you up to make sure at the same time you're always in the same position. So you have like three little indicator tattoos. I can't find my any more but they're there somewhere. So you have them done, you have the face mask and then they, it takes them a couple of days and they line you, so, make sure that every time they put it down it's all lined up and then obviously to them it becomes clockwork because you're in every day. So you have all this preparation done and then they, for your first time they, obviously they reassure you a lot, tell you everything, ask you if you need to be comfortable, if you need anything under your knees or if you're cold or you know.

Who was reassuring you at that time?

Both my parents and the radiotherapy technicians because obviously they're not new to it, they've been doing it for quite some time so they're like you know because at the time, fifteen I'm like, I was probably the youngest patient they'd had there for probably could be, I'm not going to say it's ever but it could've been, 'cos, 'cos I'm tall enough and big enough I was able to use the adult sized you know radio.

Remembers his elation when he received his last block of chemotherapy and is now just having body...

At the end of the chemo you had an assessment?

Yes I did.

Can you tell us a bit about that?

One of the best days of my life really. It was when I'd finished my chemotherapy 'cos with CLIC with have CLIC nurses there so towards last the last like say three fifths of my treatment I was able to have it here at home so you know the CLIC nurses would come out and that. And on the last day that my, I had it here, and they came and did that. And when, I've got a field outside though it's not a field any more, but it used, it was a field when I finished my treatment and I went out, stood in the middle of the field and I just yelled that I've done it, I'd beat it, I finished. And cars were going past like 'What's he doing? Why is he standing in the middle of a field shouting?' And then the next day we kind of went into hospital and they were like yeah, yeah we're going, you're going to have an MRI scan monthly as you have, because obviously I've been having monthly MRI scans throughout and they were going to continue with that for six months, see how they go, then move it to three monthly for a half year and then move it to six monthly for a couple of years and then we'll see where we go from there. And at the moment I'm on six monthly ones, I just had one two weeks ago and I got the results yesterday and they're clear, perfect, perfect apart from the hole in the back of my head which I've had throughout all of them now [laughs]. Yeah. So you know.

Does it bother you to have that at the back of your head?

Oh no I'm quite proud of it myself you know because with the size of the scar there because you know how some people can be like 'Oh yeah look at that scar I've got there, look at that one there,' you know I go 'Ssh look at this one, all the way round.' They're like 'Alright you win, go away.' I'm like 'Yes I know I win yeah.' So you know like I said at the beginning I try to find the funny side to things but.

Talks about his emotional 'ups and downs' and says that the music of Bob Marley was a big help...

What was going through your mind?

Going through my mind was really like two sides of the thing. One was thinking back of other people that have had it and what happened to them. So I was like, I was considering, one of my favourite musicians Bob Marley with his having two brain tumours he died from it and then my Godmother, that I mentioned earlier, having breast cancer, surviving it, and weighing up how many, like trying to weigh up how many people I knew who'd had, had cancer and died and survived and trying to compare you know what I mean to see what my odds were. And then there was the side where you think crap am I going to be able to get through it, am I going to be one of these people on the side which got through it and achieved, I'd say the ultimate goal of beating cancer or am I just going to lay down and let it just attack me you know because I knew there was no possible way of beating it but the way I was thinking at the time was am I going to let it beat me, you know?

So could it be that the one big emotion was this concern about 'am I going to make it'?

Yeah it was.

I'm going to beat it?

Well the one, well there two kind of there was the one with am I actually going to a make it and then there was the second one with the fear of if I do it and I don't make it how disappointing is it going to be? Or the fear whether I don't do it and I'm just going to die anyway. So it was, the question on my mind was do I take the opportunity to try or do I just give up? That was the hardest choice to make.

So what was your approach to it?

My approach to it was really I thought in myself I thought I can't do it and I thought but it's not fair because I'm not the only person in my life, I know I'm the main person really in my head but there are other people, there was my family and my friends. So I asked everyone that I knew, all my friends and all my family, all the per, all like personal friends and that you know the ones which meant things, I asked them whether they think I should go through the treatment or what and whether I should carry on or what. And the overall result was everyone else said you've got to go for it you know, there's a higher chance of you surviving if you have all this against just me who was thinking I just can't do it, there's no possible chance, I'm only fifteen, I'm no one special, I can't do it on my own you know so.

How long did the chemotherapy treatment?

The chemotherapy to be honest seemed like forever but I think it was about may be eight or ten months. So you know it was a long haul but you know.

So how were your moods at that time, emotionally how were you?

They went from, ranged from right down towards you know wanting to commit suicide all the way up to you know I'm on top of the world because it's the end of the week and I've finished radiotherapy or I've finished my chemo for the, for the week, you know what I mean? Both ways because many times I've been, well not stood but kind of got in my wheelchair and wheel chaired to the window of my, at like early hours of the morning in, in the hospital and thought I could end this really easily and just [expel breath] jump out the window you know. And then thought again unfair. And then like with, in my circumstances a big help was listening to music which was kind of keep me in the middle with my emotions you know. Obviously from time to time it went phew left and right but music kind of kept me focused and central, just listening to music. Mainly I listened to like Bob Marley and feel good music really, I call it feel good music anyway. And after you know doing that a few times that really, I thought like this is working, this I keeping me kind of looking forward you know trying to think right I’ve made a step forward, let’s not look behind and see what I’ve gone past until I get to the end with this, with the music. So the music was a big factor in my, me getting through the treatment.

His doctor did a good job explaining about sperm banking and also said that he must use...

Did they discuss the issue of fertility or infertility with you?

They did with... before the radiotherapy and then before the chemotherapy. Because with the radiotherapy because I was having it down to the base of my spine it's quite near that, your genitalia area and that they recommended that I donated so, because it affect or it could not, there was no

So you kept some sperm? Sperm banking?

Some yeah, so they would so you know they went, they kind of went over it and said you know 'You do this. We're not necessarily saying that you might, that it's lower going to lower your fertility but this might help if it does.' And then they said the same thing with chemotherapy saying this might have, probably is going to have more effect on you because it goes through your whole body and your whole systems and everything, this will probably have more effect on that kind of thing than the actual radiotherapy will do. But because you've obviously donated some at the beginning of the radiotherapy there's no need to do it again unless in between like when, obviously they said that's when they had like the bigger discussion about when I was older if I wanted to have children and that they obviously, they said obviously to go have at the time, have it tested and then see how it is and then go back. And if it's not obviously up to key go back and it will always be there and then obviously to go, to talk to the specialist and then go around it that way if I'm married or you know whatever. But they said not to be stupid about if I was going to have sex, you know still use protection, don't just think because there's the possibility that it's going to, might destroy your sperm there's no reason to say that it's definitely going to destroy it totally you know so always to be safe. They kind of, you know when they did that with the whole hormone, going over hormones, how it will affect hormones with growth and things so.

And this was a doctor who was?

It was yeah.

And did he explain in a kind of easy way, in a relaxed way or?

Yeah my [laughs] my doctor, Dr [name] he's an absolute top bloke. He never explains anything to me in a way that I wouldn't understand. You know he wouldn't go into like higher doctor technics and go you know 'If you do this it's going to affect your hormone and you know,' he was 'Let's just keep it simple, it's going to do this, which might eventually, which might affect this in the future, might affect that in the future.' So you know it's not as if he was like laid back and like 'Yeah you know this is going to do that,' but he was professional about the way he simplified it and made it clear what it was going to do without being too technical you know. So it was very well done and he's been like that throughout you know so he's been a great doctor.

Do you think that was a good decision?

I do, I think a good decision because like they said at the beginning and then at the one before chemotherapy with the appointment they said you know, like I said they said there's not, there's always a possibility that it might not and there's a possibility it might so it might so, in my head I said but I definitely want to have children when I'm older [laughs] I plan on having a lot of children, at least four so I'm you know I'm glad I'm having this you know. So in my head it was a good idea and I stick by it now.

Stay positive and find something that would help you go through your treatment.

What would you advise them, what would you say to them?

Stay positive find something that will keep you positive like I have music, may be it might be drawing for you, it might be I don't know watching movies, it might be writing a book, I don't know. I know, I know many people that have been through the same kind of thing who wrote journals which got them through it you know. So the main thing I would say would be positive, find something which would help, helps you through, takes your mind off things. Try to consider, I know at the time it's hard to do but try to consider how your parents feel and how your family feel, how other people around you feel and just not, not to give up, not, I know it's not going to be easy, it's not possible to beat it but just not letting it beat you is going to be the biggest thing. And to do that is to stay positive. You know obviously have your down days, you know you can't have a constant run of good days, you obviously from now and again everyone has a down way, whether they're going through chemotherapy or radiotherapy or just not, you know just at work doing normal things you know. So the main thing I'd say just keep positive, look forward, don't, don't look at the situation as it is now or behind what it was, just look forward and keep positive.