Interview 16

Age at interview: 23

Age at diagnosis: 23

Brief Outline: Diagnosed with Burkitt's Lymphoma in 2004. Treatment chemotherapy and, one intra-thecal chemotherapy. Stayed in hospital for the duration of his treatment; nine week. Currently in remission.

Background: Single, no children; lives with parents worked as a welder before diagnosis. He now works in the same company but doing less heavy work.

The first symptom he had felt like 'I'd pulled my back'.

If you start when you first suspected that something was not right?

Well, I was just at work and basically I felt like I'd pulled my back and [sighs] next day or two it was just getting worse and I just thought nothing of it so I went to the doctors just asked for some more powerful painkillers because it was, the normal paracetamol wasn't working, and what it was, was, I took the painkillers and they were just doing no good. I thought, well, I've really damaged my back this time, I'm just going to have to take it easy at work. 

So I took it easy and went to my doctor's again and he put me on different types of painkillers till we found something which actually worked. Then I decided to actually change jobs for a much easier and lighter job and when I got what, when I, when I got home from one of the jobs, my back completely went and I thought well, I tried chiropractors and they, they were sorting out my back and after that my back went again.

So went to the doctor's and just said, 'Look, it's, it's just not sort of getting me, back's completely going.' We, we tried more painkillers 'cos we, we'd had x-rays and it showed nothing up at the time, and I'd say about four months afterwards I got severe stomach cramps just after a night shift. And it was quite an intense pain so I, I wasn't, drink, when I tried drinking water it was coming back up and what have you so when I went to doctors, he rushed me straight to hospital, and stayed in there overnight, and then went for like a I think it's and IV x-ray when they inject dye into your blood and it just showed up like a, a little, hotspot, and a few weeks later I got a appointment for like a for an MRI scan at [place] and it showed a few more hotspots so we found out by going to another hospital to get a biopsy on my back and when I was going for that it's very easy, you know, easy to come to terms if you think well, must be something serious at that point if it's a hot spot, what can it be? And what if it's so, so things flash through your mind. That test proved inconclusive and they wanted another bone scan so I went into the another hospital to have one done on my hip. And that proved that I had Burkitt's like lymphoma.

It took a few months and several tests before he was diagnosed with Burkit's lymphoma.

So, like I say, when I, when I first suspected there was summat not quite right, would be summat like March last year [2003] and for me to actually get, well, to get stomach cramps was September time, and when I went for me IV scan which was four weeks after which would be October, and then it would be MRI scan which was actually January time. And I got sent for a bone scan in March, took two weeks for that to come back and then went for another bone scan on my hip four weeks afterwards. Yeah.

So it was a long?

It was quite a long period before we actually figured anything out. We were just stabbing in the dark because we couldn't work out what was causing me to limp quite badly.

He would have preferred an open ward on his teenage unit because he was bored and would have...

You were treated in an adult ward?

No, teenage cancer unit.

Ah ok, ok. Tell me about that, how was that?

It was, weird if anything. It's you all had your separate rooms which weren't such a bad idea but I'm one of them people that like to be with a load of people sort of things. But they had like a function room where you, you, you met a few of them like and you had a play station and like your own personal TV and stuff like that.

Would you have prefer, would you have preferred to have a kind of share room with more young people?

Yeah, it would have been better off with a shared room sort of thing. 'Cos you, if you needed someone to talk to or owt like that, you, you'd have that company rather like some people prefer to close their doors and stuff, and bottle it up and it seems to drag em down a bit more than it should do.

I talked to quite a few people but, like I say, with the isolation of just the single separate room sort of thing it's a question of you, you'd get on with quite a few people and other people from the other wards sort of thing.

As I say, I didn't feel too isolated there but like I say it was one of them I could have done with open ward sort of thing, like I went for me bone, scan, not my bone scan, me bone biopsy it was basically it was like a three bed ward sort of thing with a horrible TV in the corner sort of thing and you, you generally chat to the two people, the other two people which are beside you sort of thing. And so playing cards and stuff like that, but the other hospital it was a question of you had, when in Rome and you thought it was a, then you If the door was open say hello and if they responded and, you know, it was quite good.

So I mean the open kind of ward setting you found it better?

Yeah

Did you tell the nurses at the hospital where you, you received the chemotherapy treatment about your, what you thought about the accommodation?

Yeah, as, as I say I liked the hospital itself but it's and I sort of said to them, 'It's a good hospital and you can ask the staff,' and I was just saying 'It just seems a little isolated, sort of thing.' And she said, 'Oh she knows it was, it was one of the patients that designed the ward and that wanted to be on her own sort of thing and that's the way she designed it sort of thing.

Doctors gave him information in straightforward, non-medical terms and he did not feel the need...

They gave you it straightforward, simply layman's terms and the, they tell you the technical stuff and then they'd tell, while they were telling you that they'd tell you what it meant and basically they'd, they'd say if you want to stick your head in the ground and ignore it we'll still treat you, but we'll still have to tell you the technical terms of it. But other than that if you have any questions just let them know.

And did you have questions for them?

No, not at the time, I was just more keen of just getting back, back at home like sort of thing, back to work and having my life ordinary again [laughs].

Ok but did, you were able to ask questions if you have any?

Yeah, yeah, yeah you were allowed to ask questions all the time and main question was how, how am I progressing? But other than that, I didn't really have many questions.

So that was your main question?

Yeah

Ok, and what about the nurses on the ward?

The, they're, they're always there if you needed them and they're always helpful and what have you.

Ok, so do you feel you could communicate or talk if you have any, if had any problem, talk to either the doctors or the nurses?

Yeah you could talk to the nurses and doctors all day long. I did, I did that but it's a question of I didn't really question on what I'd already knew sort of thing 'cos, like I say they're, they're telling you stuff as it happens sort of thing so you didn't really feel left in the dark that you needed to ask the questions.

He and other young people treated in a teenage cancer ward used humour to help one another go...

Just look positive, feel positive and what have you. 'Cos at the end of the day, the best medicine is laughter and if you can shrug it off and just think, well, that, there's worse things that can happen to me and as I say, you, you sort of tend to take the treatment a lot better.

Ok, ok so you have used humour?

Yeah, as I say my mates that I was with, it's like we'd, tended to all come off the treatment at the same time so it's kind of lucky.

Ok, so you joke a lot when you were in hospital?

Yeah

Tell me, what did you joke about? [laughing]

Could I have extra sickness with the chemo 'cos I'm not getting enough of it yet? Just weird stuff, it's like I wore a t-shirt 'What sets me pumping?' and it's the actual thing that pumps the chemo into you, just some sad sense of humor which just gets it going.

Says that he won't be able to do his normal work as a welder for sometime but he is happy to be...

So you left hospital in early September and you are already back at work?

Yeah, I started back 1st October which was three weeks. I was supposed to wait for six, but 'cos I'd, did what she said, do quite a bit of the housework, if you feel tired after doing that then don't return to work till your body can keep up with itself. And my body was recovering quite well after I'd done a 12 hour shift I still had enough energy to dance my way [laughs].

You are doing a 12-hour shift?

Yeah.

Ok, what do you do?

I'm a, well they put us a line operative but more of a machine minder all the time. But at the moment I'm only on light duties till I'm 100 per cent with my bones or what have you.

And how do you feel then, do you feel ok?

Yeah I feel fine, its, the other people at work feel more knackered than me [laughs].

Yeah, that is amazing. Do you think it's something to do with your sort of frame of mind because you seem to be kind of positive and?

Yeah I have to say it's just being positive and always looking at there's always light at the end of the tunnel and you, you know, just laugh, as I say, laughter's the best medicine.