Interview 47

Age at interview: 17

Age at diagnosis: 14

Brief Outline: Diagnosed in 2001 with Stage II, Hodgkin's lymphoma. He had six blocks of chemotherapy over six months. He had a Hickman line and went into hospital twice a month to get his treatment. In remission since 2002.

Background: A level student; lives with his mother and younger sister.

More about me...

Age at Interview' 17

Sex' Male

Age at Diagnosis' 14

Background' A level student; lives with his mother and younger sister.

Brief outline' Diagnosed in 2001 with Stage II, Hodgkin's lymphoma. He had six blocks of chemotherapy over six months. He had a Hickman line and went into hospital twice a month to get his treatment. In remission since 2002.

Also interviewed in our teenage cancer section.
 

Had a large scar where the skin had torn around where his central line had been inserted, and...

And then I had chemotherapy through a drip in my hand, my arms and neck. I ended up having so much to my hands that it burnt the veins in the arteries or wherever, and then I had purple and brown scarring all the way up my arms, both of my arms. This one's still there, it's like, still kind of grey and it doesn't come up if I do something like exercise or whatever. My nerves come up in this hand, but this hand they're still kind of knocked out still, so they were all bruised up and that. 

And you said that your Hickman Line got infected?

Yeah. During my treatment, because it's like a fresh wound, it's right there, it's always there, and the pipe goes, moves around, because it goes in and out and stuff, and it's pulling it slightly, the skin that goes around it, and pulling it slightly would end up ripping the skin. And I've got a massive scar there from the pipe being there, which was a small cut on my chest, but it got cut three times, got pulled and this and that, that it kind of got messed up. When I was sleeping it happened worst, because you end up tossing over and whatever, and your arm goes over it, and you squash it or something, and I got my stitches ripped and everything there, so I had antibiotic for that, during my treatment and slowed down my treatment a bit, because you can't have antibiotics and chemo at the same time, so I had to have, I had to wait for a couple of weeks to recover from this, then have my treatment. It wasn't, it did really hurt, but wasn't really bad.

Usually recovered at home after his chemotherapies but stayed in hospital one night as his...

During your treatment, were there periods in which you felt low and tired?

Yeah. There was one time, my brother couldn't make it there one night, so I stayed the whole night in hospital, and I felt, I didn't eat, so I was really kind of distraught, and the drugs kind of made me a bit dazey and stuff, and I listened to a transy sort of music and stuff in my ward, and that was probably one of the most changing moments of my cancer time. The music sort of went along with the scene that I was looking at, and the people, like the kids and stuff in the ward, by five in the morning, six in the morning, they were all awake, playing around, because they'd had treatment all night, so now they can play, so they're all up and stuff. And I was very knocked out and not sleeping and stuff and the music went along like an instrumental to the kids playing. It was really dancey sort of music, and I was kind of dazed anyway, like I said, so it felt like it, I felt really good, because I knew that I was almost through it, I was about two months, three months into it, and I was getting better. So I knew there was hope. At the same time, the music sort of made me really feel optimistic about it. I felt that everyone else has, everyone in this room, we've all got an illness, but we're all going to get out of it in our own way, whichever way it was. Some of them were really bad, some of them had really life-threatening sort of things, and mine wasn't that bad. So I felt lucky in a way, and I felt really good. That was one of the times that I changed, I became really optimistic about it, and I didn't at all sort of give up, I think.

His illness pulled the family together, helping to overcome tensions in the household; his...

And how did it affect the family - you becoming ill?

Well, it kind of brought ourselves together, because there was lots of stuff going on at home at the same time, with my dad, kind of thing, and now he's moved out, but at the time, there was a lot of conflict in the house, and I think me having cancer gave a new sort of, new light to everything, and rather than everyone been so, they had more stress from me being ill, but I thought it was kind of a good thing, because it pulled everyone together, made everyone realise that it's more important than just arguing and stuff. And everyone sort of' I don't know, looked at everything in a different way. It changed things the way they were.

So, for positive?

Yeah. It was. I found it was more positive than it was negative, having cancer.

And how did you feel? How did you feel with the support that your family gave you?

It was good. It was, I felt at least there's someone there. Well, my family are really religious and stuff, and everyone in my, like all the ladies and stuff, they're always doing fasts and everything, and my aunties, all of them did a fast for me, and they carried out ten day fasts, or two month fasts or whatever, and my mum did some, my grandma did some, my auntie did some. I've got relatives in India who did them as well, when they found out about it. And everyone was really supportive to me. They were really worried at first, when they realised how, that I was getting along with it OK and everything, that gave them hope as well, and they prayed for me all the time, and was really nice about it. I felt better.

So part of the religious rite was fasting?

Yeah. Sort of thing. You fast, there's always fasting and stuff going on for different, on Tuesdays or Mondays or Sundays, there's always a day fast for a different purpose, but one of my aunties, she did a two-week fast for me, for the purpose of me to get better. So that was really nice. And Mum did it every, I think it was every Saturday, or every Tuesday or whatever, and it was probably good to show that they cared.

Which religion?

Hinduism.

Hinduism?

Yeah. 

OK.

So fasting is to ask for me to get better or something. I thought it was really nice, I appreciated them doing that for me.

So you felt support and'

Yeah.

' and love around you?

Yeah.

His mum often looked after him on the hospital ward, staying till late at night, and his brother...

So your mother sometimes stayed with you in the hospital?

Yeah. she stayed about four or five times, she stayed up here with me, normally she stayed until late night or something, and then had to go back, she had to take my little sister to school, so she went late at night, about 12 o'clock, and sleep at home, and came in the afternoon or something, or my brother would pick me up at night. So Mum was, since the morning or afternoon when I went there, my mum would stay with me for the whole during the course of the day. At night she'd go home. I'd lie there for a bit, play play station and things, and then my brother would come over in the morning. When I'd finished my treatment, I'd call him, and he'd come over and pick me up in the morning and drop me home again.

So your mother was dividing herself between you'

Yeah.

'and your little'

Sister.

' and your sister?

And my brother would do that with me and the family and everything as well. So as, I felt a lot of support at the same time, which helped as well, helped me feel positive. If they ever stopped showing that they care, that would have set me back as well, made me feel more alone, which I wouldn't have been so positive about. So I think their support helped me support myself as well.

So that was important to you?

Yeah. Mmm.

Gained support from joining a youth club and a holiday for young people with cancer, made friends...

Well I went to a Youth Club - 'Coping with Cancer' - I did Tai Chi there, I had trips and stuff every other week, going to Birmingham or London, staying in different mansions or something, whatever, having a weekend out going shopping and stuff with them, going out to eat with them and things. I did Tai Chi there, which I'm still doing now, which I teach as well now, after two years, and I got a lot, a way load of new experiences. I learnt, I could see life in a different way. One day that I was ill and stuff, and made my threshold of pain a lot higher, I knew that I can live without food for a couple of days. You know, if it's really hard, I could still do that. It opened me up in a lot of ways as well. I felt a lot stronger after it. And I went to Barrystown. Have you heard of that?

No.

It's a camp in Ireland where people who have cancer all get together from all over Europe and America, and there's people from Norway, Sweden, Germany, Denmark, France, everywhere, people who go there, and there's about, probably a thousand, a few hundred to a thousand people there, kids from about 14-17 or 18ish, and it's like a massive castle that they live around in cottages, and you do horse-riding, canoeing, and all these kind of outdoor sports and everything, and you play games and stuff together, getting to know people that you'd never see otherwise. Another experience that you'd never have otherwise as well, and it's like a fully paid trip to Ireland, where it's set, and it lasts for nine days, and that was the best holiday I've ever been on. Yeah, I got way more out of it than I lost, in the end.

Who organises this?

The Hospital, they have it every year.

The Hospital?

Yeah. They don't organise, they send people out. I think there's an actor, I've forgotten his name ' Paul Newman, I think it is, he organises, he has that thing, he owns it, and he's got one in America as well, called 'Hole in the Wall', and the one in Ireland it's called Barrystown Gang Camp. And it's amazing, it's really, really good. People who work there, as well, are so nice, and the Irish people, their accent and everything, and the different cultures all joining together and, it's really good.

Have you made friends, other friends through'

Yeah. Yeah.

'while going through the treatment?

I made a lot of friends. One of them, he only finished his treatment a few months ago. He had leukaemia as well, and that was really bad. He had it since, he's had it for about four years, I think, and he's finished recently. He's a bit older than me, but we went to Barrystown together as well. He was there, and another girl that came with us. One's still having treatment, the other two are out, I'm out, but yeah, I made a lot of friends through it.

While you were receiving your own treatment, or'

Well, afterwards.

'Outpatient Clinics?

Yes. I made a few friends at the time. Most of, they weren't all my age, and you'd only see them once, and the next appointment maybe, another day, so you won't see them again. One of my best friends from my secondary school had the same thing that I had, which was really weird as well. He was in my three former classes, and he ended up having the same thing. When I finished my treatment - he had the same thing as me, but it was on his back, close to his spine, though, so he had bone marrow check-ups as well, so he had bone marrow check-ups as well, so he had to have injections in the bones and stuff. Mine was in my muscles, so it was mainly that, but now he’s better as well, so, and I used to sort of be like his mentor or something, like his parents used to ask me things, and they used to tell me, “How did you do this?” and make him do the same sort of thing, because they knew that I got better, they used to use me as a, sort of like a template to sort of mould him into, kind of thing, yeah. Mmm, so you supported him. Yeah. He used to, and then he received the same treatment as I did, in school and everything. I had it the first year of GCSEs, he had it the second year, so the same thing, exactly the same thing, he got diagnosed with the same thing at first – with TB and this and that – because he had lymph nodes in his neck, the same as me, he had an operation in his chest, just like I did, and, rather than his neck, he had it in the chest, and his, and his back and stuff, and it was pretty much the same thing. And he never… either, he was a bit kind of shook up by it, because he was scared and everything. But then, once you realise that it’s going to happen at some point, you’d rather have it when you’re younger than when you’re older, when you’re older it’s harder to recover and things, you might as well take it easy and just go through it. At the end of it you’ll get more out of it than you’ll lose.