Interview 07

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.

Describes what it was like having chemotherapy.

So what happened to you, when you went to hospital? Can you tell me from the very beginning about your chemo and?

Oh, okay, then. I'd go in there and, well, I'd, I'd wait for the nurse which, like fit me up kind of thing, so I'd have, have a cannula put into my hand, for a blood test, make a blood test, and Sellotaped onto my hand or something, or under my arm, and, and but before I had a drip, they put in one hand. And I'd put a flush in there first, check for things going back and forth. Straight after that they'd get the whole drip thing, put this, put the colourful chemo thing in there, so probably like a red one. It put me off my Ribena as well, because it's the same colour as that. And I'd have that for about four or five hours. Then a nurse would come in, because it beeps when it's finished, the nurse come in, put a saline drip in it to clear it out again. I'd have that for about half an hour. As soon as the line's clear, have a second lot. Have that for about six hours or eight hours, whichever one it was. That would clear out. Set up with the saline drip again. And then a third lot, if there was a third lot. And sometimes chemotherapy went up to about 18 hours, sometimes 12 hours, another six hours, depending on how long, how big the bag was, how much, how much the dosage was for each one. I'd have that, and by the time it had finished I'd be really worn out. It would be about, it would be pretty late, because I normally had it in the morning, it went through the day, into early morning kind of nightish, and my brother used to pick me up from hospital because I recovered better at home. So it was better that I stayed, stayed at home. If I'd have stayed there, I end up being worse, because I end up' I couldn't eat there, the food wasn't that good. And even the environment reminded me of being ill.
 

Describes the advantages of going home immediately after his overnight chemo sessions.

And sometimes chemotherapy went up to about 18 hours, sometimes 12 hours, another six hours, depending on how long, how big the bag was, how much, how much the dosage was for each one. I'd have that, and by the time it had finished I'd be really worn out. It would be about, it would be pretty late, because I normally had it in the morning, it went through the day, into early morning kind of nightish, and my brother used to pick me up from hospital because I recovered better at home. So it was better that I stayed, stayed at home. If I'd have stayed there, I end up being worse, because I end up' I couldn't eat there, the food wasn't that good. And even the environment reminded me of being ill, so it was'

In which way? Can you tell me?

Oh. Just, like, seeing everybody else ill as well is one thing, and kind of, is kind of the Pavlov's dog thing and you had a bell and things, you sort of just' you remembered this food or whatever. When I saw the drips and the touching of the pipes and everything, and the smell of the alcohol wipes, and the nurses, and kind of the people around me, and the beds, the way they were, I can remember being ill, and I felt ill as well. I felt weaker. That's because I had been so long just being there. So I felt a lot better at home, I felt safer at home, and chilled out, relaxed at home. But at hospital even just being there for a check up, whatever, I still feel kind of it's not, not right. I still feel a bit ill.

Even now?

Yeah. Or' I'm sort of over it now, but kind of reminds me of it, and I think if I stayed there for another, like a night, on my own, it's like I was before, and I'd still feel really sick. Just not even having treatment I'd feel a bit weird. I couldn't eat there anyway, because' kind of remembering how it is. Yeah.

Were you in a Children's Ward?

I was, yeah. But sometimes in my own cubicle, which was a lot better. I'd had, had my, I'd have a TV there or whatever. I'd watch TV, and be chilled out. But when I was on the ward, you can't really rest, because there's kids crying and stuff. Well, not really' I ain't blaming them, but it's really sad. So you can't really keep your mind at rest. And you see everyone walking around and it's not, it's not very ' hospitable in this hospital. It's not very nice like that.

Okay. So you prefer to be at home with you family?

Yeah. Probably. Yeah. My brother used to be really nice to me, and used to pick me up in the morning, at whatever time and stuff and bring me home, so I would go like Burger King or whatever, so I could at least eat, I couldn't eat there. I could eat at home, whatever. And I just feel a lot better at home. I can stay up on the internet or whatever. I felt a lot better at home whatever I did. 

He had a lump on his neck but his other symptoms could have been caused by TB or asthma.

About 2001, I first found out. I had a swelling in my neck, about there, it was pretty big, from the' like the gland is swollen up, and I went to the doctor's, emergency doctor's one night, and he goes to me that it's a, a throat infection. So he give me antibiotics for that. I had antibiotics and the swelling went down, and after about two months it came back again, during the summer, during the summer holidays, and I went back there, and they gave me antibiotics again, and they also told me to go to the doctor's to have a, a throat, like a test and stuff, like my GP. And he referred me to the [place], where I had, they thought it might be TB or a throat infection, or something with asthma or something, so I was in the Asthma Ward for a couple of weeks, and they did a biopsy, because they couldn't figure out what it was, and they cut the side of my neck there, took some blood out, and they also said it was a pretty risky situation because of the nerve down there that controls the whole of my left side, and it could have been dangerous, it could have killed off my whole, like, left side, paralysed me. So it was a pretty dangerous operation. But then I had that done, had the biopsy taken out, and when we found it was cancer, Hodgkin's Disease, and when I had X-rays done, like a CT scan, they noticed I had, also had one in my heart, so one was there, like a banana shape around my heart, of tumour. And that's what made it hard to breathe as well sometimes. There were no other symptoms from it, just the two, or loads of little lymphoma in my neck, swollen glands in my neck, from the infection in my heart. And that's what it was.

Was almost relieved to discover that he had treatable Hodgkin's lymphoma and not tuberculosis,...

You had Hodgkins?

And they told me it was the second stage, so it wasn't too bad, so it was still curable, there was a 50/50 chance I would survive or not. But, yeah, I felt pretty head straight about it. When the doc told me that it was curable, I was, I was optimistic, and I didn't think it would be too, too risky, too much of a hard time.

Okay. Did they explain to you what 'second stage' meant?

Well, they told me it was curable, and that's the only thing I listened to, because I thought, 'If it's curable, that's all right. It should be okay'.

Okay. So that was the important part for you?

Yeah. Yeah.

And you were 14?

I was 14 then.

And how did you feel when they told you it was cancer?

Well, I was pretty shocked because I, I was told it would either be TB or cancer, either one of them, because that's what they symptoms looked like. But TB I knew that would be really kind of hard to get rid of as well, but and it also affects everyone else around you as well, so it would mean that my family would have to be tested out and my friends and everyone from school would be tested out, and that would mean a big fuss about it, and I'd have felt more embarrassed about that as well, at the same time, because they'd looked down? on me, because everyone will know I've got TB and stuff, it would have made it a lot harder for me socially, so I thought 'Cancer will probably better'. So I was kind of ' not looking forward to cancer, but kind of I thought it was better than having TB, in a way. And plus I also found out it was the second stage, so it wasn't that bad. It could have been worse.

Doctors don't need to wear bandanas or to act like young people to be more sociable.

Yeah. I think one thing that I'd tell doctors would be to make the, make the, to have more sort of, I know they're really clever and everything, because they have, like, big degrees in this and that, but to be, at the same time, more social, because all my doctors were always very were frown like, 'This is this', and they'd point out. It was very serious and everything, not so fun. I think if they were, I know it can make you sound, it's like the doctors should be really, like, professional, but they've got to be professional with kids, so they should kind of find a middle balance kind of thing as well.

Do you think they should learn to communicate with young people?

Yeah. Yeah. Not with slang and wearing bandanas and everything but [laughs] be, be a bit more social, I think, and talk to them properly, without their stethoscopes on and everything, and act all professional all the time. To be more relaxed with them. I think the patient feels a bit more at ease with them as well, feels more comfortable with them. Yeah, because although he's got, like a, like a science appearance sort of thing the doctors with their jackets and' all formal all the time, sure like sort of business, not really, well, because it is your health, they should be more personal than anything else, and you don't feel like that sometimes, because the way, when they, when they talk to you, it's like making a deal about something. Not very social.

A 16 year old boy comments that some of the nurses were not much older than himself - and some...

Yeah. Nurses weren't, well, they weren't much older than me, really, some of them were like 20 year old's or something and some of them were really pretty as well, so it was quite good talking to them [laughs]. And they're always there. The doctors had more people to deal with. There's about, what, two doctors between 15 kids, and there's about twenty nurses with 15 kids, so there's more of them to go round, so I don't always want to bother the doctors with asking them questions, so I asked the nurses.

Why? Is it because of the age?

Yeah. And they, they sort of, they talk better, on a better level, as well, because they're like, they've only, they've been at school and stuff, and living the same life you did only a couple of years ago, so there's not much difference.

So the language maybe is more similar -

Yeah.

- to yours, then.

Yeah. And they can talk about the same sort of thing, like music and stuff. They can talk about, talk to you about that or whatever. Yeah, it was, yeah, I talked to some of the nurses more than the doctors, most of the time.

Okay. And you found that they tried to answer, or find the answers to your questions?

Yeah. Nurses, some of them were really, really good. I, like two, two or three nurses were, like, amazing. They were always there for me. Whenever I was ill and stuff, or it, one of them used to always have work during my treatment and stuff. She used to always, like, I used to like the way she looked after me and stuff. When I was ill, she'd come running to look after me, and always be there for me, like, really mother me and stuff, and I liked that, because you feel better, shows someone, like, cares about you and things, so you feel better, because your Mum's not always there, is not always there to look after you, and you can't talk to everyone, because there's kids, like, they're really young, and you don't want to talk to them, so someone who's there, makes you feel, feel a lot better. It shows you, like, your own individual nurse, you feel a lot better, who you can actually talk to and sort of thing. There was one male nurse, one male nurse, in my Asthma Ward, when I was in the Isolation Ward, when they thought I had TB, and he was really, really good as well. I used to play station with him, and I think you are not suppose to but, used to be really cool, because I had no one else there. Sometimes and it will be late at night, and I couldn't really sleep and stuff, and people who'd been there, you feel more better, you feel more comfortable, because you never feel like 'Why me?' You never asked that, because you're gaining a bit of stuff out of it. You're still having friends and things, and being able to socialise with people. So you never really ask, you never get to ask, 'Why me?'

Talks about the importance of eating well in between chemotherapy treatments.

And when you said that you took care of what you ate during the treatment. Do you remember what you...?

I had, I drank loads and loads of water. I drank a lot of water. I drank a lot of milk and stuff. But mostly, I had a balanced diet, I had a lot of proteins like milk and stuff, and had breakfast, made sure I had breakfast here every morning, just to keep my, keep my diet sort of going, so that I didn't lose weight, because I knew that if I had, when I had, when I had chemo, I'd lose quite a bit every time I had chemo, because I couldn't eat for two days. And so I made sure, the week before that, the time I had to prepare for it, and I'd be eating properly, which I got a load of vegetables and stuff. I had, like, a very mixed diet. A lot of, like, roasts, chicken and stuff, or vegetables and potatoes, like roast potatoes or whatever. Not fried, not so much fried. At the same time, when I did go out to meet my friends, I still had, like, junky foods. I'd keep it all balanced. I didn't, I didn't get bothered by having too much healthy food. I still kept a balance of having junk food at the same time. So I had the crisps and chocolates. That made it, made it even out and everything else, because, so I never felt too much, you know.

What help him was to think that every block of his chemotherapy, as he went through it, brought...

Have you ever felt angry?

The worst I felt was that day I had my Hickman Line put in, and I couldn't eat and stuff. That's the worst I ever felt, because I was so tired and really worn out that day. But, other than that, I never felt, 'Why me?' or anything. I always sort of looked up at it and thought, I counted everyday and said, 'Okay, two months left' or whatever, and I felt better. I knew there was an end, so it wasn't that bad. If it was, like, a really long treatment, and I didn't know when it will end and stuff, I'd probably feel worse. Because I knew the deadline of six months, I was rushing to finish it, so I was more, I was looking more to the end of it than to what was going on at the time. So I made sure that everything went well until then, that, so it wouldn't be any longer than six months. Because I mean, because, if I ever lost hope, and didn't, didn't go to my treatment or something, or didn't have my chemotherapy on time, or I didn't eat properly, I didn't recover well enough in time, then my next one would be worse, and would set me back even longer. So I knew that my, my own sort of state of mind was really important, so I tried to keep it always, always good. Yeah. And, and you get, like, an allowance as well. You get, like, '150 a month, from having cancer, so I could always keep myself happy as well, by buying stuff and things. And, it was always, well, it gets, for me, like, out of it, you don't notice how bad it is. It's all about balancing it out, in a way, and, I never really thought, 'Why me?'

This attitude of keeping yourself positive?

Yeah.

I mean. Is that part of your personality, or did you develop it while'?

I think I developed it mostly from having cancer, because I've always been sort of, like, content-ish, sort of thing, but then having cancer gave me, like, a new look, a new look in life. I realise it's more important than just, than a, than a few days being unwell for a year, has left me well now, rather than, if I'd taken that year out, thinking, 'I don't want to have my treatment', and then dying, like, a year after, from having, from cancer not being cured, I could have, I'd rather have it done now rather than later, really. I will suffer now than later, when I'm older and weak, and I've got better stuff to do. I mean, I was just cool and things.

You are young and you can'

Yeah, I think I can grow stronger afterwards. I think the whole process of being younger helps you a lot as well. It's like an advantage.

Started to go to a local support group that included a youth club and he was pleasantly surprised...

And when, at what stage of your illness you became involved with Cancer Support Group here?

Just after that, just after I finished my chemo. Towards the end and after, mainly. Before when I was a bit hesitant to sort of go and do it. I thought everyone's going to be really ill there and stuff, and end up feeling worse, because everybody, like, like really ill, I think. I thought that maybe it won't be so good. And when I did go after I'd gone to Ireland, I went to that as well, to the Youth Group, and it was, it was really good. I had, like, a holiday all there and stuff, table tennis and things, and it was really good, had a play station, so I could chill out and stuff, listen to music. Talk to people my own age who are suffering the same thing as me. It was really helpful.

So you, you're still in touch with them? You still go there?

Yeah. Yeah. Well, the Youth Club shut down a few months ago, a few months ago now, because they ran out of funding, so'

The youth club?

Yeah, which was on Tuesday nights. But just a few weeks ago, a new art club started up there on Tuesday nights, which is like a pilot thing going on for a few weeks. If that goes well, I hope they can get funding, so I can get back into that as well. But I still go Tai Chi down there.

How important is it to keep this Club going?

I think it's very important because, I didn't, I didn't, I didn't experience it while I had the cancer, I went there afterwards, after I'd finished my treatment. If I went there earlier, I would have had well, more positive support from everyone as well, people who had been through the same thing, or who know people who have been through the same thing as me. And you can all sort of, it's better, there's power in numbers, and if you all think the same, like think positive, it will help each other, won't it. I think that if people went to it now, the people, if they're still around now, the people who were in there, would really benefit from it, because it would support you in a lot of ways - not just by talking and stuff or playing games, but knowing that there's people, that you're not the only in there that has cancer. People around your age who still have it, and still manage to cope with their lives and stuff, give you more hope, in a way. So I thought that's really important. But now it's not there, it's kind of a shame, but, hopefully, it should come back soon.

Explains that the doctors that told him about sperm banking seemed uneasy and embarrassed A young...

Did your doctor discuss sort of fertility before starting you off with the treatment?

Yeah. They told me'

Yes?

They told me about that and, I had a lot of check ups and stuff with that and everything, but it's all cool though. It's all right, though.

Did they have a sample?

Yes. I had to go an do that

The sperm, a sperm bank?

Yeah.

Were you with your mother and brother when they did discuss that, or'

No, I was on my own, so I was kind of a bit weird about that, and, the doctor told me this really sort of, really weird as well, the way he told me. He makes me feel like a kid or something, like all metaphors and everything. He says, 'You can do this, do that' Like I had [laughs] It was really embarrassing, actually, and'

Embarrassing?

Mmm.

Why? Do you think he wasn't relaxed talking to you about it, or'?

Yeah. He was, like [laughs] He was really weird as well, but I was talking about stuff, and I was as well, I was like a kid, I still am [laughs]. I didn't want to talk about it, and nor did he. He made it really, really obvious. And the nurses told me afterwards, and she was like, well, not much younger, not much older than me, about 20-something 'ish, and she was a bit cooler to talk to, so I was talking to her and that was all right. I figured it afterwards.

So you think that you got a better explanation from the nurse than from the doctor?

Yeah. The doctor was really kind of, he seemed a bit unease, I think.

Unease?

Yeah. Or not unease, because he' it's a bit, I don't know, kind of weirded out by it, whereas I really, I don't know what it was, I think he was shy or something.

Shy?

Yeah, I think he was shy or something, so' yeah.

He was pleasantly surprised to find himself supported by both his peers and his teachers.

Practically the whole year of year ten, I was in hospital and stuff, and in and out and things, so it ruined my whole year really. I couldn't do my course work, because I wasn't there in class to learn and stuff, and I messed up in a lot of my exams and things in the first year, the modular exams. But when, when I picked up, at the end of the year, the last month of the year I picked up, and I ended up back, back into it. But it wasn't enough. My grades kind of dropped as well, because of that. But then the second year, my year, year 11 - the second year of my GCSEs - I was back at college normally.

When you go back, how did you feel about going back? Did you have'?

I was, I was pretty nervous at first, because everyone had started already, it was like a week or two into that. So, the first year at college, I was having my first operation, so I recovered about a few days after. My neck was really sore, I had stitches and stuff in there, so I couldn't really go out anyway, I got knocked or whatever, so, I started college about a week or two afterwards. When I, when I first came in, I was really, really nervous. I went to see one of my, went to one of my lessons - RE - and everyone, everyone had found out, because my brother told everyone, but I told my teacher and stuff that I won't be coming in, and people found out in my form and everything, why I wasn't coming in, so everyone's like, I had, my friends came in to see me and things, but not many people were kind of exactly not many people knew what it was, so they were a bit afraid to sort of call me and things at first. But then, when I first went to college, I went to my lesson, and my friends were there, and it felt kind of good because everyone was sort of rushing to me, I felt like a celebrity or something, because everyone's running to me and saying, 'How are you?' this, that. We heard what happen, and everyone was kind of sympathetic, but still being really cool. My friends were still there. I felt, I felt better that day, so I went in. And I had shaved my hair off then, so they'd look at me all weird kind of thing, and I felt like a different person. I was wearing a hat and stuff most of the time, and it was pretty cool, because I went to school when I wanted to, whenever I felt I wanted to because I was, I was ill, like, the first time, the first time I had any treatment and things, so.

Yeah, well, I did, because I had my hair shaved off, for one thing, which kind of made me different to everyone else, from last time they saw me, I was different, and now they find out I've got cancer and this and that, and I had this operation, and my hair's gone, and I felt like a different person. I didn't know how I'd get back in there. But as soon as I, as soon as I did, I didn't have to try too hard. I was still the same person inside really, so I didn't have to try too hard. And once I got in there, I was okay again.

Were you able to talk to your friends, about what you'?

Oh yeah. Everybody asked, everybody asked a lot. My teachers asked a lot. My friends asked and I even have to talk in front of the whole class, because one tutor time was on cancer, and like learning about, you do, like, little educational things going on every week, and all it was on cancer, so I did a little talk about how I, how I went through cancer and everything, and did a little speech about what I felt and this and that. That was during the middle of my treatment.

His father did not visit him but he has felt the support of many family members in the UK and...

My Dad never, never came in to see me at hospital. Not at all. He was never there. And my brother, my brother and my Mum would find out about everything, and then I'd find out about it a bit after or something, or if they're not there, I'd find out first, and they'd call Mum or something and let her know. But I'd always find out what's going on, and how I'm getting along, and the treatment and everything, so I was up to date on everything.

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

Well, it kind of brought ourselves together, because there was lots 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, like, 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, sort of' I don't know, looked at everything in a different way. It changed things the way they were.

So, more 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, 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, like a fast for me, and they carry out, like, 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, like, really worried at first, and then they realised how, that I was getting along with it okay and everything, and give them hope as well, and they prayed for me all the time, and, and was really nice about it. I felt better.

So part of the religious rite was fasting?

Yeah. Sort of thing. You fast, like, there's always fasting and stuff going on, like for, like, different, on a Tuesdays or Mondays or Sundays, there's always like a day fast for different purpose, but one of my aunties, she did, like, 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.