Interview 28

Age at Interview: 16

Sex: Male

Age at Diagnosis: 13

Background: Lives with Mum; he is finishing his treatment in a couple of months and is back in school full time; white British. He did a lot of drawing while on treatment to express the way he was feeling.

Brief outline:Diagnosed on February 2002 with acute lymphoblastic leukemia. Treatment protocol: one year of intensive chemotherapy followed by two years of maintenance. He had a Hickman line. Finished treatment in May 2005.

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Had a bad cough and pains in his legs so became worried and asked his mother to take him to the GP.
Print I think we first started noticing something in December 2001. And I had a, a really bad cold and chesty cough and stuff and I was just walking up, up, up my drive and all of a sudden I had a, a pain in my thigh. And it was a really bad pain and I was like, ow where the, where's that come from. And I, I told my Mum and she was like it's probably growing pains or something like that. So I, I thought ok well if. I let it go. How old were you? I was thirteen or I remember. And then it started to get a bit worse and I was getting really worried so I said to my Mum, “Look can we go to the doctors to get it checked out?” So she said, “Ok”. So I was taken to my local GP and he examined it and thought it was some sort of hip displaysia and that it was referred pain so instead of feeling it there it was in my thigh. So he said well if it is this we need you to go to hospital. So I went to hospital and they did some X-rays and routine blood tests. And they said, “Well these are all fine but there is obviously something wrong so we want you to stay in for overnight observations and stuff” which upset me a lot because it was the first time I'd actually been in hospital on my own because my Mum had to, couldn't stay. So she had to go home. So I was very upset and emotional and I was put on to the Children's Ward. And basically a nurse just kept, kept coming in and checking on me. And they did several tests and stuff. And then the next morning the consultant came in and said, “We're sorry we've, we know that your white count's elevated but we don't actually know what's wrong. So come back in ten days if it hasn't got any better and we'll see how it goes from there.” So over the next ten days my leg got much worse and I started to feel really tired and coldy and it was terrible. And I got like a pinprick dot, a red dot, rash on the bottom of my left leg. And I noticed it in the bath and I was like, “Oh my God”. So I got out of the bath rushed to my Mum and was like “Mum look at this what, what is this?” And like because I thought it was meningitis so I was really scared. And my Mum was like “Oh it's probably just a heat rash”. So that was ok. But of course I was a bit like oh I don't know. So we went back to the consultant's clinic and he was, he looked at it and was like “What's, what's this? Where's this come from?” And we were, we don't know. It just appeared. And he was like ok we have to do some serious blood tests.

Was shocked at how long it took to diagnose her son's leukemia and thinks that people should be made aware of the signs and symptoms of cancer.
Print Mother: I was, I was just shocked at the length of time that it took for them to diagnose what was, what was actually wrong with [name]. Had it, had it not been for, in fact a misdiagnosis by the GP but a referral to the hospital nonetheless it could have gone on for an awful lot longer without, without being, being diagnosed. And in fact when [name] presented with the elevated white count and this terrible pain in his leg we were sent home for ten days by the consultant guy, bone man to and when [name], when went back to the clinic he, he still didn't know what was wrong. So I think there needs to be more awareness throughout the whole profession so that if, if, if a child turns up with a bad leg in a bone clinic they can consider that leukaemia might be a cause of that. Several of the children that we've encountered while [name] has been treated have all presented with limps, pains in their legs, difficult walking and the little ones crying when they are walking, that sort of thing. So I, I just think that a, a more, more awareness full stop really. So there is, there is a need for more awareness more? Mother: Absolutely there is yes because they, they. When, when [name] presented with the pain in his leg, excruciating pain in his leg and the elevated white count then I think at that stage that initial meeting the blood test should have been done. But it wasn't even, it wasn't even thought of. A special kind of blood test? Mother: Yes, yes to check for, for the leukaemic cells so it wasn't until [name] went back ten days later and had a rash on his lower leg which is symptomatic of leukaemia that they then did the test and the diagnosis was made.

Had headaches, tiredness and sickness but found that anti-sickness tablets helped.
Print Let's talk about side effects because you said that you were 'sick' You were sick all the time while you were having the intensive treatment? Most of the time, not all of the time but in the first month I was pretty much throwing up constantly, which was very unpleasant. But after that first month when I went to the hospital close to me I still felt nauseous. You know, I still felt sick but they gave me anti-sickness medicine to lower it so I wasn't. I was sick maybe once a month perhaps, maybe a bit more than that but luckily the medicine helped me so I, I didn't feel quite as ill as I, I would of. But it makes you really, very tired. Gives you terrible headaches. And just basically it makes your body feel, feel drained of energy so, you know you, you, you just feel as though you can't actually do anything. You just feel as though [laugh] you're a puppet. You know, you just sit there as if, you know, I can't move until, until I'm, until I feel a bit stronger or until I'm actually moved myself. So it's. So that year was a tough year? Very and I wouldn't want to go through it again and anyone who is going through it, then I know how you feel. It's very difficult but there is a light at the end of the tunnel because I've got through it and you can get through it as well.

He found that having to restric his activities difficult but taking anti-depressants helped him cope with his treatment. He recommends seeing a psychiatrist.
Print I still think that several years have been stolen because I couldn't do what teenagers do, not safely anyway. You know, I couldn't go out with my friends and mess around because it makes your bones much weaker and makes you much weaker. So if you fell off a wall or you know tripped over normally you could just like laugh at it and bounce back whereas in this case you might fracture a, a, you know a wrist. You might do any kind of damage to yourself so I couldn't do that. I couldn't do anything really. So I was upset by that. And I was, I was just completely lost. I didn't know what to do at the time. Whereas now I've realised that life isn't fair [laugh] which you kind of have to realise. But I've also realised that you just have to get on with things and you have to do what you can do, not what you want to do. And sometimes you just have to accept what's given to you rather than what you want. So but it's very difficult. Do you feel anxious sometimes? Yeah, I think I, I feel worried and anxious about whether I'm going to get an infection. Whether I'm going to break something. Whether something's going to happen to me. I get very anxious and very nervous in that way. And I'm always looking round, you know always looking over my shoulder and stuff to make sure that nothing happens. So you're always on edge until you come off treatment which isn't an extremely nice feeling, but I've got to be careful. But how have you coped with those sort of feelings of anxiety? Well, [sigh] I mean the antidepressants have helped. They've made me much happier and made me feel better but talking to your doctor, your consultant, talking to nurses, if you see a psychologist or psychiatrist talking to them helps. And basically just think to yourself what, whatever happens will happen. You can't stop it so don't worry about it. Just let it, just let things happen. And it's very difficult to think like that when you first start but it gets easier over the time. And now I'm, now I think well if it's going to happen, it's going to happen unfortunately you've just got to let it go. So. Do you see a psychologist? Yeah. I see, I see a psychiatrist, my psychologist is away at the moment so I can't see her but my psychiatrist I see which is helpful. How often do you see him? I used to see him every six months, my psychiatrist whereas now I am going to see him every month or two months because I had a very bad patch a few weeks ago where I was extremely depressed. And I just felt absolutely terrible so talked to him and it did help. And he pointed out one or two things which you wouldn't think of unless someone actually pointed it out to you. So that helped. So it's very helpful if you can see one, to see one. So. Overall how do you feel now? Overall I feel better than I, than I did then but it's, it's really strange. When you start to get to the end of treatment you'll start to feel very anxious and you can't really understand why but then you realise that it's because you've had such a structured life. You've had to do this, then you've had to do that and it's kind of been a security blanket. And now that's gone or it's going and you will have to make decisions for yourself. And if you get ill you won't have the hospital or at least the hospital won't be as, you know, as close as it was when you were on treatment. So you start to get a bit worried because you're having to go out into the open, in, into the wild world which is a bit, bit scary but at the same time you're really happy because you don't have to have chemo anymore. And you don't have to worry about constant infections and having to go into hospital and having blood taken and things like that. So there are ups and downs of, of it. But anyone or at least in my experience if you have a form of cancer when you're in teenage years you mature a lot. You, you kind of take responsibility for yourself because when, when I was first going through treatment I was a typical teenager. I thought I was invincible. Nothing can hurt me and, you know, I'm, I'm on top of the world and I'm going to have fun. I'm going to mess around and stuff like that.

Explains how a psychologist encouraged him to express in drawings the feelings that he found difficult to express in words.
Print I think it was the constant, you know, I had to have this then this, then this, then this, then this, then this. I didn't have a break. And it was just one thing after another was piling up on me and then they were going to do something else and I was like, “Look this is too much”. The side effects were really affecting me so I was feeling ill and having these things piled one on top of another, the side effects were slowly getting worse. And I was just my, I can't, I can't deal with this any more. And at the time I, I didn't actually know how to express myself. So they were saying “How do you feel?” and I didn't know how to tell them, you know, it was, it was very strange. I couldn't put it into words. So I was just like I feel terrible and they were like, “Well what exactly?” And I was like, “I don't know. I can't express it.” So my, I, they, they asked a psychologist to talk to me. And she said, “What are you best at?” You know, what, what, “What do you really feel strongly about?” And I was thinking and I thought, “Well I'm, I love doing art and I'm quite good at art”. And she was like, “Well why don't you draw how you feel? Express it through pictures.” So I was like, “Oh, ok”. So I did. And in fact it really helped because I showed the doctors and they were like, “Oh, this is, this is very interesting”. And it kind of gave me a release so I could kind of put my thoughts down on paper in a visual form so I could kind of off load some of the pressure that was on my head and on me out which, which was very helpful. Through art? Yeah, through art. So I, I've basically I've drawn what I think leukaemia looks like and all of the things to do with that and all of the medicine. What they would look like and how they interact with each other and how they, how the medicine beats the leukaemia and stuff.

Has become much closer to his Mum but his Dad (who does not live with them and has given up smoking because of the cancer) does not seem to understand what he's going through.
Print Well it's brought, it's brought my, me and my Mum much closer. We've become much closer than we were. I mean we were very close anyway so now we're really close. And it's, it's been very difficult for both of us so we've kind of shared things to make it easier on the other. But it's very difficult on parents, it very, it affects them a lot. And it's very difficult for anyone let alone [hump] a parent because they, you know, you're, it's their child and they're very worried and you know you don't want to lose them and things like that. So it, it's been very difficult for my Mum. But my Dad stopped smoking because, because of it. He was scared and that it would affect me and affect him so he stopped that. And, but he, he doesn't understand because he doesn't live with me so he doesn't understand several things. So when I'm on dexamethazone if I go up there and I am, I'm depressed and angry and stuff he tells me off because I'm being unfair to the people up there. And that annoys me because he doesn't understand what I'm going through so he doesn't realise that, you know, I'm not doing it because I want to. I am doing it because I just do it, you can't help it. But he, he doesn't understand. He's in the mindset that if you don't understand something you don't worry about it and he doesn't want to worry about it so he doesn't understand it.

Says that the 'catch up' lessons his school organised were unhelpful because although he was given work to do he was given no support in doing it.
Print What happened to your school life? It went down the drain. Because I was going through Year 8 and I was, I was doing well and, and then I was off for the whole of the Intensive year. So I lost all of Year 8 or most of Year 8 and the beginning of Year 9. And then when I was well enough I started to go back into school and I had home tutors when I wasn't well enough during the intensive treatment. But the schools don't really know how to react to it. And are very, very unhelpful in my experience. They, they didn't send home much work. My home tutors actually had to chase it. Then when I got back into school I was supposed to have catch-up lessons. So I was supposed to have someone come in with some work and help me do the work. Whereas basically they set up a drop off session so basically someone came in, gave me the work and said “Right do it” which isn't very helpful because I didn't know how to do the work and what it was. So I was. That didn't help at all. So my Mum had to go into school and you know, kind of say [huh], “What are you doing?” And they had a huge, a big meeting about it. And now after a, after a year or so it's been sorted out so that I have a guaranteed place in the sixth form. And that they will try, they've, they've. I only do four subjects now instead of doing all of them. My, my main areas. And I have loads of free periods so in those free periods I catch up on lessons that I've missed due to illness and stuff in the areas that I've chosen. So it's starting to pick up now but it's taken a very long time to, to get to reasonable level. How long would you say? About two, two and three quarter years. So nearly the whole of my treatment say. You were attending a school, during your sort of low intensity? Yeah during maintenance. I was there as much as I could be but sometimes you are too tired or you have an infection or you have an illness so it hits you back so you can't be in but I was there as much as I could. In Year 9 I had, I was there half of the time and half not. Then in Year 10 I had a really bad patch so I wasn't there much at all, less than half. And now in Year 11 I've had yet another batch of bad luck so I haven't been there much at all. But you can't help it when you have an illness you're ill.

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The voice of youth - ...
'I felt so alone' - BBC
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