Interview 18

Age at interview: 17

Age at diagnosis: 11

Brief Outline: Diagnosed with Stage I Non-Hodgkin lymphoma (NHL), in 1999. Treatment chemotherapy. In 2001, diagnosed with Stage III of NHL. Treatment chemotherapy, including high dose therapy (BEAM), intrathecal chemotherapy and lumbar punctures. In remission.

Background: He is a full time A levels student. He lives at home with his parents and sibling. His experience of cancer has inspired him to want to study medicine.

Had his lumbar punctures and intrathecal operations under sedation.

Did you have lumbar punctures?

Oh yeah, yeah I had lumbar punctures and I also had intrathecal chemotherapies in the spine.

How many of those?

I think I had two of those. Yeah they weren't under full general anaesthetic, they were happy gas, nitrous oxide I think [chuckles].

Can you explain, explain to us what happens during the lumbar puncture or intra-thecal operations?

Oh yeah the happy gas operations were, they were actually quite fun [laughs]. Because no I it's a, its quite weird because it makes you feel really sort of, it makes you say the silliest things and you don't really feel as if you're there but no you know I can't remember a great deal about the lumbar punctures but I don't remember sort of feeling any pain afterwards or anything. Except sometimes I got headaches after, a couple of days after them because it drains spinal fluid obviously so it affects you know how you feel in general and it gave me you know quite nasty headaches but that was all I got from those, really.

Was frightened when first diagnosed and for several days believed he was going to die.

Okay so let's go back a little bit when you were told you, you had Non-Hodgkin's lymphoma.

Yeah.

Do you remember how you felt at that time?

Yeah I was pretty scared. Yeah I, I remember the day I was diagnosed I seriously thought I was going to die because when you, when you get diagnosed with cancer the first thing that takes over is fear with, with anybody. So yeah irrational thoughts kind of sort of start coming and yeah I, I thought I was going to die for, for quite a few days actually at first, until my doctors managed to convince me that I was going to be treated and I was going to be okay. But yeah, no at first I really thought I was going to die.

So you were frightened?

Yeah I was really frightened, it was the most frightening thing by far that had ever happened to me in my life. 

Okay, did you think 'Why me?'

Yeah that's another main question that people think. I thought 'Why me?' because I didn't see quite what I'd done to deserve what I'd got. But then sort of I also thought it, it's not really a case of 'Why me?' because cancer is such a chance thing it can actually happen to anybody. So it, it's not really a question of 'Why me?' its just it, you know it can happen to absolutely anybody, so.

Did you believe the doctor when the doctor said you would get better?

At first no I, I didn't, the only person I wanted to believe, I wanted to believe I was going to get better but the only person I found I could believe was myself, telling myself I was going to die. Really.

A doll was used to demonstrate what was involved in having a tube inserted into his body called a...

Yeah they told me everything that was going to happen, they didn't try and pull the wool over my eyes about anything. I was told basically exactly how I was going to feel and that I was going to have to have a Hickman line put in which is like a central line which goes in to the heart and feeds chemotherapy in to the blood, bloodstream. I was even shown a demonstration of that using, using a plastic doll [chuckles] and that actually sort of brought it home and sort of, I think that's when I broke down and just couldn't take any more. But, because it all looks quite horrific when you sort of see this, this line going in to a plastic doll and think “Oh my God, that's going to be me” [chuckles].

But no they, they told me everything that was going to happen, how I was going to feel, what the treatment would, would do to me physically and exactly you know how I was going to have to be careful of certain situations that you wouldn't normally have to be careful of like going shopping and stuff because of the, you know how easy it is to catch illnesses when, when you're having chemotherapy because you don't have any, really you don't have any white blood cells left so you can't really fight infection too well.

Do you think that they gave you too much information at that point or?

It was a little bit too much at once, maybe they should you know for someone who is 11 and has just been diagnosed it's a, the information and the emotional stress all, all at once is a little bit, a little bit too much to take, but I, I think they did the right thing in telling me everything.

Developed a lump on his neck 2 weeks after a check up and also had severe leg pains, but neither...

For a long time up to the run up of my, my diagnosis the second time I was really ill anyway because the second time I think I let it, I let it go too far before thinking that it could be cancer again. So I spent sort of a month and a half, two months in absolute pain with my parents sort of you know helping me all the time even though I hadn't been diagnosed. So the period of time for which I was hogging the attention the second time was, was longer than the first time.

The first one was my Mum simply found a lump at the very top of my back which was sort of a, quite sort of a jelly like and it was quite, quite sort of soft, it was quite strange feeling, just a really round lump at the top of my back. And she found it and she said 'Oh I don't, I don't like the looks of that.' And me sort of wanting to believe that there was nothing wrong said 'No its nothing, its fine, we'll leave it.'

So we left it and then I started to get really strange back pain in my lower back which we went to the GP for who said it was probably a trapped nerve like or, or like a slipped disc or something like that, its sort of a typical injury. And the pain just grew worse and worse up to the point where at school I couldn't, anywhere I, I couldn't stand up and school became so ridiculously unbearable I couldn't actually concentrate or think in lessons, I couldn't do anything.

Why didn't you called the hospital? 

Because the lumps started growing everywhere and I think by the end of, by the time I got diagnosed I had sort of eighteen tumours. I, I was Stage III the second time, I was only Stage I the first time. Yeah I think the, the amount of lumps that I had sort of showed me that it probably wasn't normal and it, it was probably sort of quite sinister and -

So you were a Stage III?

Yeah Stage III. The only reason I wasn't Stage IV was because there was nothing in my cerebral tissue, my spine or my brain, my spinal cord is the only reason I wasn't Stage IV.

What I am interested to find out is why you postponed contacting your consultant or the team that had seen you the first time?

I think -

Were you frightened by the idea that the cancer might?

It was fear and, a mixture of fear and disbelief because just before I sort of found the first signs of it, of relapsing the, the lump in the, the top of my back just literally a week or two before that I had a check-up in hospital, blood tests, scans, everything which showed that there was absolutely nothing wrong with me.

So that sort of made me feel that it couldn't possibly be cancer again. And also probably subconsciously there was an element of fear as well that it you know I didn't want to face up to what it probably was, again.

Okay. So you said that you were diagnosed for the second time, can you tell me about that you went to hospital?

Yeah I went to hospital, that was December 2001.

You were 14 then?

Yeah, yeah 14.

And who told you the cancer had come back?

My consultant yeah.

Do you remember how you felt at that time?

The second time I felt, I felt nothing, because I was in so much pain that it was actually a relief to get a diagnosis for what it was none of my family cried we’d, we, we were out, I was actually sort of, I wouldn’t say “pleased” but I was pleased to know that it had at least been diagnosed and we know what it is, that what, what had been causing me pain for the last like two or three months.

The only person who cried was actually the consultant which was quite strange but no for me it sort of, it came as almost a relief that something was, was going to be done about it because the pain had just become so ridiculously intense that whatever it was I just wanted it, I wanted it cured and treated.

After relapse he had more intensive chemotherapy and a stem cell transplant. His pain disappeared...

Okay, so what did they do at that stage?

They sent me for a biopsy of the one that my mum had originally found at the top of my back, the tumour at the top of my back. And that, yeah that, that was what confirmed it I think, that was what confirmed the diagnosis the second time. That, that only took a sort of a few days to, to happen after the operation so perhaps if I'd gone in you know as soon as I'd started feeling the symptoms I would have been treated a lot sooner.

Okay. Did the consultant explain to you what they were going to do, how they were going to do it?

Yes they, the consultant said that it would be the same sort of, it would follow the same sort of treatment pattern as the first time only I would have, in every month, or in every four weeks one week would be in hospital having chemotherapy and three weeks out recovering because the chemotherapy they were going to give me the second time was a lot stronger than the first time. And they also said that the last block, the last course of chemo I would have would be a thing called BEAM which is high dose therapy involving really strong chemotherapies which I'd have to stay in hospital for three weeks for. So yeah, no they, they explained it all to me then when I got diagnose.

Okay what were the side effects of the intense therapy, the intense chemotherapy?

They were the same as the first time but a lot stronger, the side, simply a lot worse. Like, like the first time I remember having sort of really quite strange mouth ulcers in my mouth from one drug called Methotrexate which it, it sort of takes away the skin of the lining of mouth inside so it, it's painful to eat, swallow and that sort of thing. That, the first, the first time I was treated that only lasted a couple of days at a time maybe, maybe two or three days at a time but the second time I had it, had it, the, the doses of the Methotrexate I was given, being given were so high that it lasted sort of two or three weeks at a time. And for that sort of period of time I literally couldn't open my mouth to speak. I, I had a sort of pad of paper by my bed in hospital to write things down for people because I couldn't, I couldn't talk to them.

And well hair loss was the same and, but the second time I wasn't, I, I didn't put on so much weight, actually I'm not quite sure what that was, why that was but the second time no I certainly didn't, if, if anything I got a lot thinner the second time. 

Okay.

The second time round.

Did you have any pain?

Not after the treatment was started because the first lot of treatment they gave me, I remember actually sitting in hospital just after I'd been taken in and the first load of chemotherapy they gave me was actually through a syringe, through a cannula in my hand because they hadn't had time to put the Hickman line in yet. And they gave me sort of a, a syringe full of one called Vinblastine in my hand and literally twenty-five minutes later the pain that I'd been sort of suffering for the last three months just went away, like that. And I, that was the last I felt of that pain, twenty five minutes after the chemotherapy had been given to me, it was really strange [chuckles].

Okay, which other treatment did you have apart from the chemotherapy, the intensive chemotherapy the second time?

Oh I had a stem cell harvest treatment, yeah that was -

Can you explain that -

The second time he was diagnosed with Non-Hodgkin's lymphoma he felt angry, rather than worried....

So the mouth ulcer were there most of, most of the time while the treatment lasted?

Yeah pretty much yeah.

Okay, okay so that, would you say that, that was one of the main side effects?

That was the worst one for me I think. It was worse than hair loss the second time. I, I could bear the embarrassment, I couldn't really bear the pain of, in my mouth too much. So yeah the mouth ulcers were the, were the worst side-effect the second time.

Okay, how did it make you feel?

Really frustrated, I used to, in the time I was not in hospital I used to sit and torture myself by watching cookery programmes on TV and I don't know why I did that, it just, it made me feel really, really frustrated not being able to eat. Not being able to talk was a bit of a, a bit of a snag as well. Having to write everything down is, gets, gets a little bit annoying after a while so yeah it, it generally made me feel really, really annoyed and frustrated.

Okay. Any other feelings that you remember from that period? Worried?

Yeah sometimes worried only when you know I was maybe sort of in a, a more depressed mood about the whole situation but generally I didn't, didn't really get worried at all about it.

So there are, there are sort of kinds of ups and downs?

Yeah, no, the whole time definitely had, it, for everybody this sort of thing definitely had its ups and downs you know.

Can you tell me about those in more detail?

Sure yeah when, I mean the downs for me were always when I had the mouth ulcers so I was always, when, when I got the most frustrated, when I felt the most depressed, so I started to worry more. The better parts were sort of when, when friends came to visit and stuff that always made me feel much better and it sort of left me feeling, feeling really good about myself and you know like, you know like everything wasn't quite as bad as it, maybe you know I thought it was.  

Have you ever felt angry?

Yeah I have felt quite angry before I, I felt, my emotions the first time were more worry and anxiety and stress and the second time yeah I felt a lot of stress but the second time more so than sadness and worry I felt quite a lot of anger the second time, I don't know who at but I just felt anger, anger at, at being in that situation again. Particularly as you know I mean the first time is bad enough but the second time it's just, it's wrong, why should it happen to anybody. So yeah I, I remember feeling very angry the second time, really.

But that feeling was with you?

Yeah. That feeling was hugely in me.

And how long it lasted?

Most of the time I was having treatment. When, most, again when I felt the lowest physically and it made me sort of more depressed with the mouth ulcers and everything, then I felt really angry.

And did you on both, or any of those, of those occasions did you think, 'I won't get better'?

The first time yeah for the first, the first you know the first few weeks of it. The second time, I suppose though at the second, at the beginning of the second time I did feel I probably wouldn't, I might not get one, I probably wouldn't get better, there you know there was a chance I wouldn’t get better. Because the first time my prognosis was I think its 96% chance that there’s never going to be, that you know you’re going to be fully cured for life, no remission or anything. If you get Stage I NHL there’s a 96% chance that you’ll be fine.

Whereas the second time I think my prognosis went down to 80% if you get a relapse in Stage III. So yeah perhaps due to the statistics of the whole thing maybe the second time I felt at first a little bit discouraged by the numbers, but no I don’t, I don’t think the second time certainly there was any point at which I thought I was going to die, really. 

Although I think medically I came quite close to it the second time because there was a tumour right next to my heart which was creating a lot of fluid and I had a lot of trouble breathing I remember as well during, as, as well as back pains and things because of the fluid around my heart. And it was only, by the time they, they sort of started the chemotherapy the tumour was you know one or two millimetres or something away, away from my actual heart. 

So no I think maybe the second time I was actually closer medically to death but I don’t think I ever felt that I was going to die the second time.

He decided, with his parents and the consultant, on the best follow- up procedure and now...

Yeah I'm only going once a year now.

Whereas before when I was diagnosed the second time I think I was going every two or, two or three months actually. And the reason for me only going once a year is that remember I, I said about having had a check-up and then suddenly feeling ill I just, the consultants, myself and my family we don't really feel that check-ups are going to, may be necessarily cure or prevent anything. So perhaps you know the only real check-up is me if I start feeling different I, I sort of you know I'll be able to tell when something is wrong with myself so I mean a, once a year is, I think that's enough actually now. 

Hmm. And what's...

And I have just blood tests whenever I go back. And I don't think I've had an MRI scan for a long time. It's been at least a year since I had an MRI scan.

Okay and what are you looking for this time I mean in terms of body signs or symptoms?

I'm, yeah, pains mostly and obviously lumps as well because the type I had, Non-Hodgkin's Lymphoma is very much, it, it presents in a lot of superficial tumours unlike things like leukaemia, so I, I can definitely look for lumps. Although I've tried to not be afraid when a gland come up because you know that's obviously nothing to you worry about.

Yeah I'm looking for mostly pains, difference in the way I'm feeling in myself like sort of maybe more tired than usual, a bit weaker than usual, not able to do quite as much sport and sort of generally just not feeling quite myself and yeah lumps and pains and feeling under the weather are the main things I look for. 

And this time would you go to your doctor if you, if you were feeling under the weather?

Yes, straightaway, straightaway if I'm feeling like I am all painful or anything I'd go straight to the doctor this time, definitely.

His side effects included tiredness, weight gain and hair loss. He explains why hair loss is...

Okay and regarding side effects, short term side effects, they told you that you were going to lose your hair?

They told me I was probably going to lose my hair which was, yeah my doctor said it was almost certain I was going to lose my hair. Yeah that, that embarrassed me hugely. I remember when I was, when I was having my treatment walking around shopping centres and just everybody looking at me. It, its, its, people underestimate it but it's the most embarrassing, it may be the most embarrassing part of having chemotherapy and the one that makes you feel the lowest emotionally. Because you, you really do stand out from everybody else if you've got no hair, sort of an 11-year-old boy without any hair isn't exactly normal. So yeah and I mean...

That is a big issue?

Yeah definitely a big issue, absolutely, especially, I mean for boys it's a big enough issue but for girls I can imagine it's even bigger.

And what about losing weight, did you?

No I actually did the opposite, [chuckles] I put on weight, I got pretty fat actually because I was given some, I was given Dexamethasone which is -

A steroid?

- powerful, very powerful steroids to, to make me feel hungry all the time, so I ate a lot and I, I really bloated, I got pretty big [chuckles].

And what about, were you sort of hyperactive or able to sleep at night or?

Yeah I remember being able to sleep at night. Hyperactivity wasn't really an issue for me, no. I was, I felt pretty tired most of the time actually although I was, I was quite missing being able to get out and play sport and stuff because really when you're sort of in the middle of treatment you don't really have a great deal of energy and even if you want to sort of go out and be active its, its pretty hard, its impossible really.

After relapse he had more intensive chemotherapy and a stem cell transplant. His pain went...

Okay what were the side effects of the intense therapy, the intense chemotherapy?

They were the same as the first time but a lot stronger, the side, simply a lot worse. Like, like the first time I remember having sort of really quite strange mouth ulcers in my mouth from one drug called Methotrexate which it, it sort of takes away the skin of the lining of mouth inside so it, it's painful to eat, swallow and that sort of thing. That, the first, the first time I was treated that only lasted a couple of days at a time maybe, maybe two or three days at a time but the second time I had it, had it, the, the doses of the Methotrexate I was given, being given were so high that it lasted sort of two or three weeks at a time. And for that sort of period of time I literally couldn't open my mouth to speak. I, I had a sort of pad of paper by my bed in hospital to write things down for people because I couldn't, I couldn't talk to them.

And well hair loss was the same and, but the second time I wasn't, I, I didn't put on so much weight, actually I'm not quite sure what that was, why that was but the second time no I certainly didn't, if, if anything I got a lot thinner the second time. 

Okay.

The second time round.

Did you have any pain?

Not after the treatment was started because the first lot of treatment they gave me, I remember actually sitting in hospital just after I'd been taken in and the first load of chemotherapy they gave me was actually through a syringe, through a cannula in my hand because they hadn't had time to put the Hickman line in yet. And they gave me sort of a, a syringe full of one called Vinblastine in my hand and literally twenty-five minutes later the pain that I'd been sort of suffering for the last three months just went away, like that. And I, that was the last I felt of that pain, twenty five minutes after the chemotherapy had been given to me, it was really strange [chuckles].

Well –

- in more detail?

- in more detail, yeah.

What does it do?

That was, okay I had to sit in a blood donor place at the hospital I was being treated at for, I think it was four hours I was there with a huge needle in my arm, [chuckles] literally it was the biggest needle I’ve ever seen in my life, but anyway, stuck in my arm for four hours. And they had to you know basically just drain newly growing cells out of my body from just as I was coming back from the period of being neutropenic i.e., when I hadn’t got any blood, white blood cells left they had to drain all the stem cells which are the baby cells out and sort of harvest them for when I’d need a stem cell rescue after the BEAM which was the high dose treatment which would sort of really completely take away all my immune system. 

So basically you know the stem cell thing was as a back-up for after, after the high dose to sort of help me recover much more quickly.

 

Feels that it is very helpful to be positive but remembers one occasion when he felt so...

I do remember thinking that its just, its pointless being negative about it you know because that doesn't served any purpose at all, it doesn't do anything. And you know remaining positive helps someone in that situation to like remain as strong as they can, so you know like remaining positive was probably what I was telling myself mostly to do. Except just, it was quite hard when I had mouth ulcers and stuff because I remember getting so frustrated that I ended up throwing syringes at nurses and things like. So [chuckles]. Huh. But yeah, no definitely you know I was telling myself to remain positive.

Okay how did the nurses react when you were throwing syringes at them?

Oh well that, that was only once actually but that was when there's a substance called Laculose which is sort of meant to help the digestive system and someone was trying to force that down, one of the nurses was trying to force that down my neck when I had the mouth ulcers. And I just remember trying to swallow a little bit and she kept trying to sort of say 'No, no go on, go on have some, have some more,' and I'm like 'NO,' and I remember throwing the syringe at the wall I think yeah sort of trying to hit her but sort of missing. But no that was a one off, that was one time when I got particularly frustrated with everybody, that wasn't really something that happened a lot [laughs].

So you were, you felt angry at that time?

Hmm, yeah very angry, angry at the world.

He is not concerned about whether he will be able to father children in the future -and says he...

Let's talk a little bit about long term side effects, did they explain to you issues of fertility and infertility?

Oh yeah, yeah they said it, it's possible that I could become infertile because of the, the high dose thing but that's not for certain so yeah. I got a little bit explained to me about that but its not you know, it wasn't really a burning issue at the time, it wasn't really a huge issue.

Well they had to treat you straight away didn't they?

Yeah I mean I'd sacrifice anything to, to be alive so yeah, no I didn't.

So how do you feel about that now?

It doesn't really bother me hugely, no I don't, I don't feel like particularly you know particularly strongly about it at all so no it doesn't really affect me at all, that side of it.

His friends at first found it very difficult to approach the subject of his illness.

So what happened when you went back to school that first time?

I went back to school obviously still with no hair because it takes a few months for hair to come back. I felt, to be honest even more embarrassed than I'd felt sort of walking around shopping centres and stuff because people know me at school. And sort of to have everybody at school looking at you and thinking 'Hang on a minute is that the same person who was here sort of five/six months ago,' is, is, is quite weird. Although everybody treated me very nicely, obviously it was almost as if I didn't want them to treat me nicely because I didn't want to be treated as abnormal. I wanted to sort of fit in again and be treated exactly as I had been treated before. 

So it was a very strange feeling going back to school it was, it was really a bit of a shock to the system at first but I got used to it, particularly as my hair started growing back it, it started to get better slowly.

And what about your friends were they able to, to talk to you or, or were sort of just keeping their distance from you?

At first I think...

Can you remember?

Yeah I, at first I think they found it quite difficult to talk to me because, I don't know I think that could have been because they were sort of, they weren't sure what sort of reaction I'd give if they started talking to me about it. If I'd want to talk about it or if I'd you know want to change the subject. Although I mean despite perhaps a little bit of fear of talking to me they were all really supportive so.

And what was your attitude, were you able to talk to, about your illness with them?

Yeah I was, I don't have any fear of talking about it with anybody I don't, I don't see it as a sort of a taboo issue for me. No. But I've no problems talking about it with, with friends or anybody actually at all.

Feels a bit guilty because when he relapsed his parents concentrated on him and he thinks that...

I think I maybe felt guilty for sort of hogging all the attention from my parents. I felt guilty towards my sister because perhaps I wouldn't say she got pushed aside but you know the attention was mostly on me because of what I was going through. So yeah I felt slightly guilty that, probably my sister felt that she wasn't getting quite as much attention as you know it was, she probably deserved and that, that's certainly true but I think she, she knows why, certainly. But yeah.

Those feelings were present the first time or the second time that you were diagnosed?

Particularly the second time because for a long time up to the run up of my, my diagnosis the second time I was really ill anyway because the second time I think I let it, I let it go too far before thinking that it could be cancer again. So I spent sort of a month and a half, two months in absolute pain with my parents sort of you know helping me all the time even though I hadn't been diagnosed. So the period of time for which I was hogging the attention the second time was, was longer than the first time.

Says that even when the cancer comes back it does not mean that it can't be cured and that there...

What advice would you give to teenagers that are going through a similar experience like you went, sort of having to have cancer treatment for a second time, what would be your advice?

Yeah I'd say that just because its come back doesn't mean that its incurable, it certainly doesn't mean its incurable and it doesn't necessarily mean that you, you know you, you feel you should worry more either because it, its, its really its sort of the same, its exactly the same as it was the first time and just because the prognosis is maybe lowered by a couple of percent doesn't mean it, it's just statistics, its just figures, it doesn't actually mean a huge, a great deal. 

I'd definitely say you know certainly don't worry because worrying is, is the worst thing you can do. Worrying makes you feel, you know down in itself, you know I mean you're feeling bad enough, you're having treatment so it's not as if you need to worry. But no I, I'd just say no there's always light at the end of the tunnel even if you, even if you have got it back a second time or even a third time I don't know what its like to have a third time but, and hopefully I never will but yeah, no just, I really wouldn't you know, I'd advise you not, not to worry particularly about it.