Interview 23

Age at Interview: 23

Sex: Male

Age at Diagnosis: 22

Background: He is single and lives with his mother and siblings. He is a third year law student and plans to go back to university after finishing his treatment.

Brief outline:Diagnosed with acute lymphoblastic leukemia in 2004. He gave up his chemotherapy treatment but went back to it after realising that there is no other treatment available. Current treatment: chemotherapy.

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Showed his Hickman line for the camera.
Print So we were talking about you having a Hickman line. Can you explain to us the procedure? How they put a Hickman line on? I was a bit woozy. I can't remember much. I think they make two, two parts to the start from, from the chest and then there on my neck part and it's like down to your vein. And they stitch the top part and they stitch the bottom part. And then after ten days they take the stitches away and the Hickman line stays in. So it's done with general anaesthetics? Yeah anaesthetics to numb everything.

One young man who trained at a gym everyday got worried that his cough was not getting better and asked his GP to give him a check-up.
Print So when did you start having symptoms? When I was as I used to go to the gym quite a lot up at Healthland based in [town] city centre. I used to do a lot of training there. And then out the blue I got a cough and it was a really bad cough. It wouldn't go away. Whenever I used to get a cough and I used to go to the doctors I just used to train and try to get out of it that way. But then I felt something was wrong with me so I went to the doctors and asked them for medicine. And they gave me some you know, some medicine for the cough and that but that didn't work, it didn't work so I went back to them and I said, “I've never had a check-up in my life either so I'd like a check-up as well”. So they took my blood and they sent it off to the hospital and then they called me back. They go, “You need to go to the hospital. You need they, they want you to come in so they can do a bone marrow test on you because you've got too many white cells in your system and they're immature. There's a lot of reasons that it could, you know, could be behind that but they want to, you know check you out.” So I said, “Ok I'll go”.

Was on his own when he got his diagnosis but at first knew very little about leukemia.
Print I went to the hospital and they did, they carried out a bone marrow test. Then she, I think the next, the next day they told me that you've got leukaemia. The next day? The next day. And I was shocked. First, first of all I didn't even know what leukaemia was. I had no idea then, then they told me “You've got leukaemia. You need to take a year out of your university. Six months will be going towards your treatment. You'll have to go through five no four positive chemo but in between that you're also getting breaks of two weeks off. So basically it will take up to six months.” And when they told me that I was basically gutted. I didn't even know what to think. You know, I thought that's it, isn't it. That's the end of my world because I was studying law as well and one of my exams, the final exam before I came in the hospital I felt ill, ill in that. I did not get to sit it properly. So I had to resit that exam as well. So I wanted to resit that exam before getting into third year for my degree final year. So I had a lot on my plate as well. Plus my mum doesn't keep too well herself. She suffers from depression. So it's a lot. I was thinking quite a lot of things. Over all I was just lost in a way. I didn't even know who to turn to. I was just basically, I was like. I've just fallen, fallen down so hard and I can't get back up. That's it. Were you on your own or? I was on my own. They kept me in. I had a temperature as well. So they, the next day that's when they told me that “You've got leukaemia”. In retrospect do you wish somebody would have been with you at that time when they told you? I've never actually thought of that but I think I handled it pretty well when they told me although I was really down. I think I was alright with it. What, it took me time to get around it. Couldn't, you know, even, even up to now I think to myself I've got leukaemia but it's, it still comes as shocking because I don't smoke, I don't drink, I don't do, you know, nothing. First I was thinking, “Is it my fault? Did I do something wrong”. You know I, I was blaming myself because I kept on thinking to myself you know, “How could this happen to me?” I kept on blaming myself first of all. Well then later, later on I realised as the doctors kept on saying, “Its just one of those things that happen.” “It's not your fault. You shouldn't be blaming yourself” and that. Then eventually I got around that.

Felt lonely and bored in his single room and says it felt like being in prison.
Print But when you're, while you're receiving treatment tell me about your feelings about being in a ward in which you have your own room rather than being with other people? You're, it, it gets very boring. It's, it's like prison and now that's how it feels to me. You're in one, in one room and there's nothing to do. You've got a TV and, but there's hardly anything ever on it. And you've got your own telephone line but I don't feel like talking much. A lot of people who do phone but sometimes you don't have the strength. You're just sitting down all the time. You're sitting down and you're just thinking to yourself what's going on. What's happening with your life and do don't know what to do. Do you have a, or have you discussed with doctors whether there is a kind of young person or teenage cancer ward here in this city? I haven't discussed that with my doctors. What would you say while you're receiving treatment that you would like to be in a young person's ward? That would be helpful in a way so you can see other people as well. What they are going through. It might make it easier on yourself as well. So it is the isolation that is also quite tough? The isolation is quite tough because I was a very outgoing type of person and that and straight away being locked up and not being able to see more than two visitors. I've, I've had more than two visitors anyway. Don't I always have a handful of visitors. The doctors are always complaining that you shouldn't have too many visitors but I still do. But it's hard going.

Explains why he left his chemotherapy treatment and his determination to finish it this time.
Print They gave me the chemo and then I was un, but the treatment was too intense for me. It was way too intense. I didn't expect it to be that bad. I was like, I couldn't handle it. It was way too much. The first time it was really, really strong. You, it's like you're getting hit by a bus. That's what it feels like the first time. Totally flattens you out. And then after that I said, “I'm not going back”. I was out for the first of August and they gave me two weeks. I was basically meant to come back by the 14th of August and I had an exam, a resit for the 24th of August so I thought to myself why don't I just stay here and do that exam and I don't want to go through the treatment. See if I could find any other ways. But I couldn't find anything. Every, everyone said to me, just family kept on saying go back to your hospital. But I didn't go back. You just found it too intense, too powerful? The treatment was way too intense. Did anyone talk to you about try to persuade you? Every time I came in to the hospital the doctors spoke to me and said to me you have to go through the treatment. If you don't go through the treatment then it could be fatal. I didn't listen. I just thought to myself I don't want to go through a treatment at all. It's just too much because I lost a lot of weight and I felt really, really weak. What made you change your mind? I started back up at the gym. And I put a little weight on but then at the same time I got bruises coming on my leg. And I went to the doctor, hospital again and they checked my blood and they were “You were in remission but you are no longer in remission any more. It's basically that you've had a relapse so it's come back and you have to, get treatment and otherwise it'll, it will be fatal.” And that's when I realised that there is no way around it. You have to go back. I started, I started feeling pains in my joints and the bruises were on my leg and that. And they were raised just like big lumps and that's what scared me. Did you manage to talk to someone about your apprehension, your fears regarding chemotherapy? I didn't talk to anyone. I just kept, I usually bottle my feelings. I don't really tell other people this is what I am going through. I don't tell my best mates anything like that. It's just the way I am but obviously I, every one needs someone to talk to. I just kept it to myself. It would have been better if I spoke to someone and told them everything that was going on and then they would have given me their opinion as well, you know, but I just kept it to myself. I didn't know I was just, I thought to myself I'm going through this on my own so no one could understand what I'm going through not even my mates and that. So I thought I would just keep it to myself. When I used to see them I used to have a, you know, a smile on my face. I was cheery and that as if nothing was, nothing was wrong but they used to say it to me all the time. You need to go back for your treatment. How determined are you this time to go through the treatment? I still have fits [laugh]. Last chemo just at the end of it New Years I took a bunk. I ran away from the hospital while my counts were down, while I was neutrophenic which the doctors weren't too pleased with. It just got to me that sitting on your own like being isolated, not talking to anyone. Everything just the, everything kept on repeating in my head and that and just wanted to get out basically. So just put on my clothes and then I just walked, walked out and went home. Just jumped in my bed and just went asleep in my own bed and next day woke up in the morning got up and got a taxi and came back here after I'd calmed down. But in a way sort of you are more willing now to go through with it? Yeah. I think I've been through enough, I've done enough damage [laugh]. So it's time for me to face my problem head on. Is there anything else at all that I, you would like to tell us about your experience? Just tough going through it but doesn't matter how tough it gets you have to go through with it. Can't back off because if you back off you make things worse for yourself, my treatment would have been finished by now. I would just need four chemos, four positives of chemo and I would have been finished but because I ran away it's taking up to a year now because it's going to take four chemos and then a transplant and then for six months I'll be sensitive to the outside environment because my immune system is still going to be quite low. So that's taking longer now. So I would have been finished a lot a, you know, well before. So what will be your advice to other teenagers who are going through chemotherapy? Obviously don't run away. Just go through with your treatment. It will be hard but the first one is always hard after that it gets better. And just hope for the best.

His doctors explained about treatment and side-effects in easy-to-understand language and tried hard to persuade him to continue after he had rejected his treatment.
Print When the doctor explained to you that you had leukaemia do you remember what they said. Did they talk to you in an easy to understand language? Did they explain what leukaemia was? Yeah. First there was a, everything was just gibberish. I didn't know, they gave me a leaflet which explained what leukaemia was but it was off the Internet and it was just using big long words I didn't understand. But then the doctors came and they sat down with me and then they explained what it was and then they brought me other leaflets. And I read them. They were a lot more easy to read. Did they explain about the treatment, they went into details? Yeah. They explained everything in detail. What you are going to go through. How long it will take. What you'll be feeling like, side-effects. So they explained quite clearly. Ok what did they say about side-effects? You won't have the strength as you normally do to walk about. You will probably feel nausea, sickness, you would just basically won't be feeling yourself. Did they tell you about hair loss? Yeah. They told me about my hair loss as well. You lose your hair, hair, you're eyebrows. My eyebrows are starting to come away as well. They were a lot thicker before. I expected to lose them in the last positive chemo because I've had three so far. No, I'm sorry this, this is my third one I'm going through. I had that losing the second but everyone is different. Big lumps, thats what scared me. So you were scared of the kind of physical effects that the chemo was having on you at that time, at that period. Did you manage to talk to someone about your apprehension, your fears regarding chemotherapy? I didn't talk to anyone. I just kept, I usually bottle my feelings. I don't really tell other people this is what I am going through. I don't tell my best mates anything like that. It's just the way I am but obviously I, every one needs someone to talk to. I just kept it to myself. The doctors tried persuading me to come back to the hospital. They tried their best. They gave a lot of effort into it. But I think it was just me who just blocked out. I couldn't see that I had to go through the treatment.

This time he is determined not to give up his treatment and is prepared to cope with chemotherapy and its unwanted side effects.
Print And your treatment will go, will last for another eight months or nine months? Well this is my third chemo. After this I'm out for two, no three weeks. Then after that it will be a transplant from one of my siblings. And then I'll be in the hospital for six weeks. Once my counts come back up the doctors will release me. But then on a regular basis I'll be coming into the hospital every two weeks for a check-up. For them to check on my blood and then I'll slowly you know, you'll change it to three weeks and then four weeks then a month, I mean a month. Would it, have they discussed with you the possibility that the treatment might be length, lengthy, sort of longer? Yeah. They said every person is different. So there could be other problems as well as the, because very complicated when you're having a transplant. But they go after this course of chemo you have to go to the [hospital] and speak to the people who will be carrying it out and they'll tell you more information up there. So I haven't quite got the full information. Maybe if there are things that I don't know yet but I'll get that information once this chemo is over. But in a way sort of you are more willing now to go through with it? Yeah. I think I've been through enough, I've done enough damage [laugh]. So it's time for me to face my problem head on.

His mother had depression so when he was diagnosed with leukaemia he tried to prevent his family from finding out.
Print And what about with your parents? Did you talk? My parents, what it is my Mum suffers from depression. When I was diagnosed with leukaemia I was in the hospital. I didn't even let my family know that I was in the hospital. For two weeks they didn't, they were, they were unaware. I didn't tell them nothing. I thought to myself if they find out they are going to get more depressed. She's going to get more stressed out so I didn't say nothing. I just kept it to myself. I thought what I can do is I can get my mates to say that I'm away down south or something like at my cousins. Would be back up in a couple of months or something because obviously I, I'd realised that they were going to release for two weeks so then I'll go back then but. The treatment was intensive. I didn't realise it was going to take a lot out of me as well. So I knew that if I go back like that my physical appearance, she'll be wondering what's going on. What happened is, my mate's mum she came over to our house just to, you know, see how's, how's my Mum coping with this news? But she's realised that Mum was unaware so she didn't say anything but on her way out she said to my sister, “Are you aware that your brother's got leukaemia? He's in hospital.” And my sister was shocked. And then she, she phoned and she got a telephone number to the hospital and my room and, and then she phoned, she phoned me up and said to me, “Why didn't you tell us” and that? And I said, “I didn't want you to worry” and she wanted to tell our Mum. I says, “Don't tell Mum, don't tell Mum.” And then in the end she told Mum and then mum came here and she was heavy crying and that. But how has she coped since? She's coping well now. But it's kind of hard on her as well watching her son going through leukaemia. And your father how, how has your father coped? My Father was in Kashmir. He, he was there for two years and when he heard the news he's, he's come back. So he's here basically for a couple of months, probably round, not a couple of months probably round about eight months or something, until my treatment's over before he decides to go back. And your mother lives here with you and your sister? Yeah I've got two older brothers, no one older brother, one younger brother so we all live together. And how have you, have they coped your siblings? They were all very upset at first when they heard the news but they've been very supportive.

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