Interview 11

Age at interview: 18

Age at diagnosis: 14

Brief Outline: Diagnosed in 2000 with acute lymphoblastic leukaemia. Treatment consisted of chemotherapy (intravenous and in tablet form), intrathecal chemotherapy, aspariganese injections, steroids. His treatment lasted more that 3 years. In remission.

Background: University student, single lives with parents; participates in the activities of a local cancer support group for young people.

His GP initially thought he had a virus (such as glandular fever) but he was referred to hospital...

I was 14 and I'd just been on a school trip, went to Yorkshire and part of the trip was a twenty mile walk. And I did ten and managed to, that was about all I managed to do and then I started to feel unwell. But I'm not exactly a fit person so I didn't expect that to be unusual. 

So and then when I got back I just didn't feel well at all, I was constantly tired and I kept getting shooting pains sort of in my arms and my legs and so Mum took me to the doctors and they said it was glandular fever which they, which they stuck to for about two, three weeks. Then they said it wasn't, that it was a viral infection but they said that it definitely wasn't leukaemia. 

Then I went on holiday and then when I came back there was a letter from a different doctor, because there were sort of two that work together and she said that she wanted me to go in straight away, just to see me. And, because this other bloke was on holiday and she took one look at me and said 'I'm not happy about this,' and sent me straight into hospital.

Felt nauseous after a general anaesthetic so had his next lumbar puncture under local anaesthetic.

The lumbar puncture, you had local anaesthetic or general?

At first I had generals, I had mostly generals but a couple of times I did have, have them locally because I found that I didn't, I really didn't like the anaesthetic it used to make feel quite nauseous when I came round. So someone suggested that, that I ought to try having it done with a local anaesthetic. Because this, I was talking to another girl on the ward and she was saying that she couldn't have anaesthetics so she had hers locally.

With local. They take you in to the, well first you're sat waiting for what seems like ages, although it seems longer when you've got it with a general anesthetic because they won't let you eat anything. And you sort of, you go in to the room and there's the trolley laid out with a sheet on it and they ask you to lie down and sort of, sort of curl up with your, sort of with your knees up lying on this bed. And then sort of your mum will sit facing you so that you can talk to her, and there's, there's lots of people around, but they're all behind you, so you can't see them. 

So there was just mum and this other nurse there and then you sort of feel a sharp pain in your lower back when they put the needle in and that would, then they put the local anaesthetic in that. But I never quite saw the point of that because they've already just done the most painful bit of putting the needle in. And then you, then you just sort of feel them poking around as they're attaching the syringes and stuff, then they pull it out and it's all done.

His parents decided he should be told his diagnosis, but he thought that there must be a mistake...

Who told you?

Well they didn't tell me first, they sort of, mum and dad they sort of, they went off and showed Mum and Dad round the ward or they went off to say something they both went off and they told Mum and Dad before they told me. And they asked whether or not I wanted, whether or not they wanted me to know what it was, but on a ward when you've got that many people with, all with the same thing not exactly a thing you can keep a secret for long. And, and they decided in the end that, that it was best for me to know.

Who decided?

Mum and Dad did.

Okay. 

Yeah, and then they came, sort of came through in to me with the consultant and a couple of nurses and they came and explained what, what it was.

Do you remember what they said?

I can't remember it word for word, but it was something along the lines of some, 'We've got the results of the test and do you know what cancer is?' At the time I really didn't know, you know I'd got a vague idea that it made your hair fall out, so that's what I said and they said that it was the treatment that makes your hair fall out and they said they said that I'd got leukaemia. Then the nurses sort of explained sort of how it was and they had this little sort of diagram of a bone and they showed me all the different cells, but I can't really remember much of that because I was too busy sort of trying to come to terms with what they were saying.

Do you remember your feelings at that time?

I kept thinking they were wrong and just, the, for the first couple of days I just kept expecting them to come in and say 'Right got, got it wrong, you can go home now.' Because the actual, what was actually making me feel ill when I went in wasn't just the leukaemia, it was an infection, as well, and once they'd given me antibiotics and cleared that up I just felt so much better I thought well, because I couldn't, it had been that six weeks since I felt normal, so I just thought well I feel fine now, I'm, I'm all right, let me go home, you know.

Thinks that information is easier to come by now than four years ago when he was first diagnosed...

I didn't do a lot of finding information, but I think if I went back and was in the same position now I would have done because I mean it's been four years, so there's so much more information out there now than there was I mean you could ask the doctors but chances are you might have got a lot of technical jargon and stuff, and you just generally feel that they're busy making people better rather than talking to people. But I mean now there's that much more information out there for people like me to access that yeah the answers are much easier to get hold of now.

Okay to some extent do you think that doctors are a bit inaccessible?

Yeah. They, they just seemed to me a bit distant. I mean we often, we often on the ward get different doctors, so you've got the main consultants, there's two consultants, you've got the registrar and I think there's another one that's sort of permanently there and the rest will be there for about six months and then move on. So often you'll go in and if the people that are not there permanently aren't there, you're talking to a total stranger. And you think well they've just, they're sort of, because it's a sort of university hospital they have a lot of trainees there and you think well this person's just left university or just become a doctor, they don't, they can't talk to me about it, I want to talk to me consultant, but me consultant's a bit, you feel might be a bit distant or a bit I don't know. 

I mean I, I feel now that I shouldn't feel a, not afraid, shouldn't feel bad about asking questions, but at the time when you're in the situation you feel much more, 'I won't worry them with that, that's not important,' or something like that, 'they know what they're doing, it doesn't, it doesn't matter what, if I know what they're doing because they do and they're the ones that are choosing what drugs I have,' and stuff like that.

Okay. So you think it is important to ask questions?

It is important to feel that you can ask questions. And I think if I went through it again I would ask a lot more questions now. But initially I, I didn't, didn't want to ask questions. I, I didn't feel able to, but I'm not sure why that was. I mean looking back there was no real reason not to ask questions, except that it felt such a big overwhelming subject that even if you asked the question you don't know whether or not the answer that you're going to get is really going to be any use to you as to trying to work out answers.

And what about the nurses at hospital and in the outpatient clinic, were you able to communicate with them?

Yeah, yeah. I found they were much more approachable than the doctors. I mean doctors tend to be always whizzing round carrying bits of paper or signing forms and stuff like that, but the nurses sort of, they tend to come round and just have a chat when, when there's not a lot, a lot of people around.

Joked about how he decided to give up taking the 'anti' side effect tablets he used to take.

Tell me about side effects, did they talk to you about it?

Not, I really don't remember. I don't think it was mentioned a lot, I think the side effects vary so much from person to person that instead of telling you a whole list of everything that you possibly could have, they just wait until you ring up and say 'I've got such and such an ache' or 'such and such hurts' and they'd say 'Oh no, that's normal.'

And what was your experience regarding side effects?

It varied. I mean I had these headaches after lumbar punctures and they really were one of the worst things. Some of the other drugs, I think it was the sitarobin, that makes you, made me very nauseous, so they gave me anti-sickness tablets. But it was, it was often that you'd have a side effect to one thing so they give you something else which gives you another side effect and you think I'll just go back to the original side effect and [laughs] that way I've got less things to remember to take.

Reassured his mother that he was going to be fine and this helped him develop positive thoughts...

And this attitude of saying, they are wrong, when did it begin to change?

It would probably have been after about four or five days I started to sort of realise that they hadn't got it wrong, yeah, and then it started to sink in how serious it really was.

And how did you feel at that time?

A bit frightened, but it was strange, I felt that instead of, well not instead of but normally sort of Mum would be, because Mum stayed with me in the hospital, normally Mum would have supported me, but because Mum had taken it worse than I had and she was really quite shook up I felt I was supporting her; which allowed me to sort of see things differently. It allowed me to, sort of to think of the positives and to try and reassure Mum, which reassured me, which, which helped.

Fed up. I felt fed up quite often with the, with the lumbar punctures, just sort of, it had, your body would know when, when they'd dropped to every three months your body would know when you were coming up to one because you'd start dreaming a week before about having lumbar punctures and going into hospitals and just things like that. And you just, it's weird, but you really do feel sort of 'Why can't it just, why can't the three years be up now,' you know, 'why can't I just,' and sort of you feel half way between being normal and being completely ill, you're sort of, you're half normal and sort of you feel well enough to do some things but not everything that you want to do. 

Did you ever thought or wonder at 'I won't make it?' Did you?

Never. I never, I never considered it, I just, I mean this is what, that's the sort of thing that I now hear; when I think back what I would have thought if that thought entered my head, I would have just said the same thing to myself that I then say to Mum if she mentioned it, and I'd just say, 'Not going to happen, it's just not going to happen, don't consider it.' 

He lives in a small village away from school so it was very difficult to maintain regular contact...

I mean I never did have a lot of confidence or friends, but I certainly think that having leukaemia and, because I spent almost an entire year and I'd go in to school for the odd lesson here and there where I felt well enough, but I more or less missed an entire year and that sort of just started to put me behind sort of friends-wise.

So you went, you went, when you went back you were with kids, with people younger than you?

No I was in the same, I was in the same year but they just had a year of extra being with each other and I just sort of walked in and they'd seen me around a couple of times, but they didn't know me, they didn't know anything about me. And it just really felt awkward to the point where often I, I'd, I would go in and I would just sit on my own because it was easier than struggling to makes friends and it was just, I thought I've spent so much time not coming to school because I've not felt well enough, I need to catch up on the work rather than mess around making friends. They've got lots of other lessons, they can catch up, if messing around makes them fall behind, but I've not got that option. 

Did they know that you were having treatment for leukaemia?

That was interesting. Because it got to the point where I'd go in and I wouldn't know who knew, because it, because when you left the school that I was at when I first became Ill, because I changed schools sort of the summer that I was diagnosed. So I started a new school and because one of the kids that went off to the other school, his parents worked at the school I'd just left so he knew, then he told his mates, who started to tell my mates so they already knew but they wondered why I'd not told them when I hadn't even thought of telling them because I was only just coming to terms with it myself. 

So it just felt like school was just this whole other environment and social activities and all this other stuff that I really didn't understand and I just thought it's easier just to keep out of and just go in for what I'm there for and then come home.

But among your peer group, did anyone try to talk to you about it, or ask you directly or?

Not really. I mean I went to school one day and someone that I'd known quite well came up to me and because I'd got no hair at the time and she hadn't seen me since I disappeared off on this school trip and never returned to school, she said, she started crying and she said 'Why didn't you tell me?' And things like that, and so I think she found it difficult because, because I hadn't, I hadn't, I hadn't opened up to her but I really didn't, didn't feel that it was a priority, if that makes sense.

So, I didn't feel that making friends and keeping up with friends, because I live sort of in a village away from the school so it was rare that any friends would sort of come out to the house and see me when I wasn't well. It was literally just you see people at school so you go and see them and say hello to them but you don't really get to mix with them the same way that other people do.

Don't give us a biology lecture - just talk normally.

I reckon that they need to make sure that while this, while what they're saying can be understood by everybody, sort of if they want to introduce, if they introduce more complex ideas or something like that, just to keep making sure and just generally have patience because they've had all these years at university doing all this biology and all sorts of stuff and we've not had that. You know some, depending on how far through your treatment you are, you've just been told that you've got a life-threatening illness and you want to know information about it, you don't want lecturing on biology. 

So sort of just break it down in to easy to understand bits and just generally try and smile, be friendly and be approachable rather than sort of a frowning sort of not quite sure where you stand with sort of doctor because there's, because it's much easier if they're sort of a friendly sort of personality to get on with. And you feel much more easy to open up to, open up to them about any problems or questions, rather than someone who is constantly frowning and looks as though they've got the weight of the world on their shoulders. I mean perhaps they've got the weight of a couple of lives on their shoulders, but they still need to be approachable. If you see a doctor that's frowning and looks really stressed, you're not going to go up and ask them what might be a daft question, you just think 'Well it's probably a daft question,' ask one of the nurses or I'll just, you know, I'll just wait and see if I find out some day of my own accord.

Says that has to reassure his mother that he will not relapse. Sometimes this means that he does...

I think that even now if say there's something on the telly about cancer or there's, we hear about a family friend that's got it or something, she'll just turn to me and she'll say 'You're not having it again,' or something like that. And you just, you just agree with her and you, you, you support her, because you know that she's, she still feels sort of insecure about what's going to happen in the future.

She's still apprehensive?

Yeah.

Were you able to talk to your family about how you were feeling, about your worries?

Yeah, I think more or less. I still felt that I had to be aware that whatever I said, if I said something that worried them I had to make sure I didn't worry them sort of thing. If I, if I felt really, really poorly, I mean if I'd get sort of a fluey thing or me bones start aching you know, I think 'Oh this feels just like it did before I was diagnosed,' but you've got to be aware that you don't say that to them otherwise they might start worrying that it is. But quite often I find that I have normal symptoms and it'll just be one of those things and you'll get really worried thinking that there's something wrong, that it's coming back or something like that.