Interview 25

Age at interview: 21

Age at diagnosis: 16

Brief Outline: Diagnosed in 2000 with Malignant peripheral nerve sheath tumours (MPNST), in the neck. Treatment: radiotherapy. The MPNST reappeared in his chest. Treatment: chemotherapy, surgery, chemotherapy. In remission since 2002.

Background: He is single and lives with his parents; works full time as a sailing instructor; white British. He was doing his A levels when he fell ill.

The first symptom he noticed was a painless lump in his neck.

Right, well, I was sixteen when it started. I think I was just looking in the mirror one day and just noticed a little lump on my neck. So I was just looking at that, had a feel of it and thought, "Mm, this is odd." Mm, just kind of left it and looked at it for a few - probably a few days, maybe a week, and then just started asking a few friends and seeing what they thought about it. Mm, and then they said tell your parents, so I told my Dad and then off we went to the doctors. So that was how that started.

And how was the lump? Was it of a different colour, or'?

No, it was all the same colour. It was just underneath the skin. You could kind of wobble it around. I didn't know if it was just, you know, a new muscle that had turned up or -

It was wobbly?

Yeah, a little bit. It was pretty solid, but a little bit wobbly.

It was painful when you touch it?

No, no. I could poke it around or move it or whatever. It was quite small, but no pain or anything.

So you went to the doctors?

Mm hm.

With your dad?

Yeah, I went down to my GP with my Dad and he referred us straightaway to a specialist in [place] in the hospital, so that's where we went there. He probably thought it was more of a cyst than anything, so that wasn't too worried or anything at that point.

Had a biopsy quite quickly but waited 3 months for treatment because his rare cancer was hard to...

And what happened at the hospital?

We went in and saw the chap - he, again he probably thought it was a cyst more than anything, so again I wasn't too worried. He asked me a few questions, you know, has it changed size or anything? Is it painful? Had a look at it. And that was in the morning and he said right we'll do something about it, and in the afternoon I was in the surgery having it taken out. So, you know, he must have thought it was something. But got it done, got it out and went home that day, and then waited, for the results. So '

And how long it took for the results to come back?

It was quite a while. They weren't particularly sure what it was. I think they came back saying it was a sarcoma. Pretty quickly - it was within a month - and then they were just trying to identify which particular type. So that took a while, because it was apparently quite a rare one. It was probably about three months before they decided on a treatment for it.

Was given the chance to choose between a single room or a ward and opted for the single room...

No. Not really. I just kind of kept it to myself. People knew what I was thinking, I think, but generally just kept it to myself. And just talk about anything else but. That was my plan, so, try and keep as normal as you can. In hospital they, sometimes thinking about putting you on a ward with people your own age, and something they actually asked me about what would you prefer for the future - for them, would you want people the same age, maybe four of you, in maybe an open plan ward, but I couldn't think of anything worse really [laughs].

Really?

Yeah. I know they said it was odd at the time, because most people would love, love to have more people, you know, going through the same thing, or similar things, but I was just thinking I'd rather be on my own, because of what you've got to go through, you know. Getting up every hour, say, to go to the toilet, being sick all the time. If you've got someone there being sick next to you I don't think it's going to make you feel much better, so.

Says the CLIC nurses and the nurses in the children's ward were 'great' and gave him all the...

And how was your communication, your relationship with the nurses in hospital?

They were great. I was on the children's ward, and at sixteen you're on the upper side of it. You're one of the older ones in there, but they thought it would be better for me to go in there. I think it was a good decision. They were so good to me, you know, always - they treat you good for your age. They're used to treating all the young kids, but as soon as it comes to you they treat you how you want to be treated, like more of an adult, so they couldn't have been better, so, very good.

So were you able to talk to them and?

Yeah.

Were they explaining things to you?

Yeah I had a CLIC nurse, through it, from CLIC. They were great, they'd be probably the main nurse involved with you, so they'd be the ones explaining it, along with your consultants, because they're, you know, child consultants. They'd go through it really well. One thing they did say to me was, "You don't ask any questions". I thinking, "You're doing your job well, you've told me everything I need to know, I haven't got anything else to ask". But yeah, they did keep saying that, "Ask more questions". But I didn't need to know anything, so-

So you didn't ask?

No, I didn't. No. There was nothing I could have wanted to know more. They'd just tell me.
 

Had a few side effects from six weeks of radiotherapy and thinks that being very fit before he...

He was more of a radiotherapy doctor, and then they just went off there for the radiotherapy, which they thought was the best, the best idea at the time. So, that was good.

Okay, so you had radiotherapy first?

Yeah, six weeks radiotherapy.

To the neck?

Yeah, it was all the neck, so, so it was not too bad, but you know [laughs] you do get the side effects. But-

Ah, like what?

Well, I think they describe it as like a sunburn to the particular area. It's all very, like a specific; they are very accurate with it. But I lost my voice towards the end of it, so that was quite hard at college, and it was a bit itchy, bit sore, but nothing too major.

Did you lose your hair?

No, not from radiotherapy, I didn't. No, it was just going in every day, just losing your voice a bit, a bit red, but nothing too major, so'

Okay, so it was a rash, a skin rash?

Yeah, it was just a little bit red, a little bit peely, just like sunburn.

Did you feel tired?

Not too bad really, no. I was still training every day in the gym when I could.

Okay.

Yeah it was at my fittest point I've ever been, I think. So before it started I was in the gym everyday training for something I was doing at the time. I think that helped, just being that fit. Then you just keep it going through it, and came out the other side, just completely fine, not too bothered at all.

Okay. And you were sixteen at that point?

Yeah. I was sixteen then.

Talks about how he felt after major surgery on his lungs.

So how long was the treatment?

It was three months of the initial chemo, and then, then it went well. I think they reduced in size by about half, maybe even more. So they thought, right, let's get whatever's left out. So they did an operation, a big operation on my lungs. That was quite harsh. I spent ten days in hospital for that trying to recover from it. Yeah, it was really harsh, that operation'

Yeah? Do you want to talk a little bit more about that?

Yeah, I can do. It was a bit further away. They couldn't do it in the hospital I was in, so I had to travel for it. My parents and my sister came up with me. They managed to stay in one of the CLIC houses, because I was still quite young and being done with the children's side of things. Yeah, went up in the morning, and then in the afternoon had the operation. I think it was seven or eight hours. Didn't go onto intensive care like they thought, which was good, so just went back onto a normal ward, which was great. Before I went in the one thing I was worried about was how much they would have to take out, you know, around the areas, because I was, you know, really sporty and into my fitness and everything. I was just wondering about my chest - my lung capacity. I didn't want to be out of breath all the time. You know I think it's quite natural. They weren't entirely sure how much they'd have to take out, but after the operation it wasn't too much. I didn't notice too much at all. So that was good. The next few days I was pretty out of it. Just on the painkillers, and morphine and drugs and everything. The only thing I noticed for pain was just my shoulders, because on the table they had your shoulders right up, and it was just aching for that, being like that for seven hours, but I couldn't feel anything else, so it was okay. And then after about three days, started to feel a bit more - you've got drains coming out of your lungs and a few other tubes going in different places, but that was a bit annoying though. You just want to get over it and get home, but you've got to stay in hospital. I think I had a bit of air on top of one of the lungs and they wanted to keep an eye on me for that. While I was there they got the results of the pathology, I think it's called [laughs]. It said it was all dead, what they found, which was great. So they were really pleased about it and then decided on the next treatment, so went on from there.

He couldn't find a bad word to say against the NHS.

Okay, did the doctor, the consultant in this case explain things in an easy to understand way?

Yeah, very much so. Since then I've been going to - or went to the adult side of it, since I've been older, a few years ago. He's great as well. He just tells you exactly what's going on. You know, he's very down to earth, they all are. I think the child consultants do break it down more, kind of explain it in really simple terms, but you do understand it, because when I was older I did know what was going on and you know what's going to happen, and they just explain everything really well, so'

But in your experience most of the health professionals treated you like a teenager? They talk to you?

Yeah, pretty good. Yeah, very good.

So do you think that is important?

Definitely, yeah. It's changed again since I've been going to the adult consultant. He just tells you straight off what's going on. That's good. You go in after your scan, "Right you're fine", Excellent, that's all you want to know.

So now mostly you have scans every three months?

Yeah either a scan or an x-ray every three months.

I'm looking at going away, abroad for longer, I was talking to my adult consultant, and he's so willing to help out, you know, that they'll contact doctors and hospitals in other countries, just so you can get away. They are so helpful. If you ever do have any questions or any queries, you know, just say, and they're as good as they can be. They really do try and help you, so it was great.

Mm, he is quite supportive.

Oh yeah, it couldn't be better. There's no - I couldn't say a bad word against the NHS at all, and you hear people slagging it off all the time, but from my experience it was just great. Even if you are private I can't imagine it would be better. I don't know if everyone gets that but I - you get your own room when you're having chemo, and what more could you want? [Laughs]. So, that's good.

Had a very rare form of cancer so after relapse a team of medical professionals was involved in...

Okay, and what other treatment did you have?

That was it for then, yeah [laughs]. Yeah, so it went well. They thought it was good. A few tests afterwards, I can't remember exactly what they were, just CT scans and MRI scans and things. And it was fine. They were just looking at the neck area for a few months, I think, thinking it was all good. And just seeing the consultant, and it was fine. 

And then, it was a scan they did on my chest as well. I think they were doing a whole upper body scan, and they saw something else as well. So.

The same thing?

Yeah, it was the same thing. Same sarcoma.

Okay. What's the name, the name of the sarcoma?

I can't remember exactly what it was. I know it was like a nerve sheath tumour, so just on the edge of the nerves.

So what did they do next?

More scans, and everything. And then knew what it was up there, it looks pretty bad. I think I'd four lumps in my chest, two on either side and right in the lungs. So they just decided what to do. Some pretty heavy chemo, and then see how that went. They weren't entirely sure if it would work or not, because it was so rare and they got all the best people involved with it, who knew anything about that particular disease and cracked on [laughs].

So how did you feel, I mean to have it for a second time?

Yeah. This was when I probably realised that it was a bit more than what I thought, you know. It was going to be actually a bit harsher. Maybe there is a chance of not being too well, so yeah, a bit more worried about it then. But again I just thought, "Oh well, just get on with the treatment, get over it, and then see what happens".

So how long was the treatment?

It was three months of the initial chemo, and then, then it went well. I think they reduced in size by about half, maybe even more. So they thought, right, let's get whatever's left out. So they did an operation, a big operation on my lungs. That was quite harsh. I spent ten days in hospital for that trying to recover from it. Yeah, it was really harsh, that operation'

And are you, were you treated in your local hospital, or you had to go to a consultant in another hospital?

Well I had all my treatment, apart from the second operation at the hospital. It's pretty big hospital here, so they can do everything. They, they know what they're doing. They're really good. I could never complain about the service on the NHS. It was just perfect. You know I think they just get on with it, straight away. Going in for the first operation, you go and see about it in the morning, and then he gets you on the theatre - well on the table for the afternoon. And speaking to the consultant he, you know, forced it through. He was busy already and just made sure I was on there, so, and just the nurses were great, the consultants were great. There was one professor, who was in charge of the whole case, seeing it, seeing it through, he was particularly high up, and knows all about it. He was quite far away, in [place], but you know he came down to my hospital once every few months, so that was when I saw him.

Hair loss affected him more than any other side effect because it was so visible to others.

So what happened? Which side effects?

I lost my hair. That was pretty annoying. That was the one I was most worried about really, because then people can tell that you're not very well. What else did I loose? Just fitness, that's pretty hard. I think most of that's because you've got the Hickman line in.

I couldn't exercise because the sport you know, you can't do too much, no matter how hard you tape it to yourself as well. There's always a chance that it could move or hurt you, so yeah, I couldn't do much sport or anything. The most I could do is walk around a bit, so that was hard for me.

Did you loose your eyebrows?

Yeah, everything, entirely, so.

Did you loose your body hair also?

Yeah, yeah. Wasn't shaving my face then so it was all right. Loose all your arm hair, leg hair, everything.

So how did you feel about it?

I think that is probably the worst thing, you know, because it is what people can see then. It's probably pretty superficial - it doesn't bother you like that, it's just, you know, people can tell you're not very well, and when you're going out you do get the odd look. But it was something I was particularly worried about. I never saw anyone without a hat on or anything, so.

So you wore a hat all the time?

Yeah, I never let anyone saw me without a hat on, so.

Okay, so how long it took for the hair to come back, and your eyebrows to come back?

Well, I'd done the first three months and lost it straight away on that, and then when I was having the operation it was still gone then. The next three months was just as bad, so it made sure I lost it. Then for the last treatment I had they did six months of quite a low intensity chemo, and all through that it didn't really grow back. There was like a little bit of stubble on your head, but after that it finally started to grow back. And then probably a month or two before I looked normal.

Okay, and your eyebrows?

Yeah, yeah. They came back pretty quick.

Yeah?

They started to grow back in between the treatments, so maybe two weeks, and they do start growing back.

And how were you feeling in yourself, while you were having the chemotherapy?

It was pretty rough, [laughs] you know, feeling sick [laughs]. I found I was only really sick while I was in hospital, so right over when it was going in, but as soon as I went home, you know, I stopped being ill. And probably a couple of days after being home got back up to being my normal self, in between the chemo's. Not particularly special, but not too bad either I could still do some things. I was working, for my dad, so, you know, if I needed a day off then he'd let me, so that was good.

And when you lost your hair you shave it off, or you just let it?

No, I cut it short. I had quite long hair before and then cut it shorter so it was about half an inch, and then as soon as it starts falling out then I'd just shave it off, more because it's a nuisance than anything. Wake up with loads of hair all over your pillow, it's just annoying, so just shave it off and can't really tell much difference.

Ok

He is very self conscious about the scars on his chest and it took him two years to build up...

And what about relationships, and girlfriends?

Yeah.

Have you had, after your treatment?

Not really [laughs].

No?

No, not particularly. I think it's just being really self-conscious. I think it's just me, or maybe just me, I don't know, but I'm really self conscious when it comes to that.

About what?

Well I've got lots of scars, which you get. I think I counted about eleven scars that I've got on my upper body.

And it's noticeable. Your face and your legs are fine, but it's, but you know, if you haven't got a t shirt on - I think maybe that - well, a couple of months ago, in just over two years, it was the first time I'd taken a t shirt off to go swimming. So that was the first time anyone's seen my chest, and I'm just really self-conscious like that. So you might meet someone really nice, and get to know them, but I don't know. Not really gone anywhere so far, so'

There are a lot of things to do and decide before treatment. He was advised to store sperm and is...

The other thing I wanted to ask you is did they discuss the issue of fertility with you?

Hm mm.

At what stage?

That was just as I was starting the chemo. Right at the beginning of that, so.

Okay.

I think it was more for - they weren't entirely sure the plan of treatment I was going to have. They did say that if the initial quite tough stuff doesn't work well then maybe go on to the harder stuff, and that would affect it more, so I think that's why they warn you. Not particularly the stuff I did have in the end. I'm not sure if that.

Did they suggest about sperm banking?

Yeah, I did that [laughs].

Who explained that to you?

The consultants again, and one of the nurses, I think.

Were you on your own or with one of your parents?

It was all happening really fast at the time, you now, having the Hickman line in and other bone marrow tests and things, so you've always got somebody there. Parents were there. It was about three days I was in hospital, nearly every day, just having various tests and things like that. But at that point I think it was a morning for one of the chemo sessions. My parents weren't there. I just went down with one of the nurses and got it over with.

How did you feel about the way they explained to you, because it's quite a sensitive thing to explain, and because of what it involves, how skilful do you think they were? Were you embarrassed? Or were they very matter of fact about it?

They weren't particularly matter of fact. There wasn't a lot said about it really. It's something they asked if you want to do, you can, if it does affect you, but there wasn't a hell of a lot about it, really. Just said, do this, and it was kind of like that really - you should do this. So I thought, right, yeah, if it does affect things then it's great to have it there, so afterwards if you do, if you can't do anything like that it's always there if you need it. But hopefully I won't, so.

So it was one more thing that you needed to do, when you started your chemotherapy?

Yeah, just one more thing added on there, so'

It was like ticking boxes?

Yeah. There's so much to get over with.

It can be overwhelming. I mean the preparations?

Yeah. It's just constantly moving round the hospital, going for different tests, doing different things seeing different people and having all these things done to you. But, I think it was my attitude again, you know. It's got to be done, and just - so do it.

So that, that was the way it goes?

Yeah, yeah. So, I had to go though. I wouldn't consider like having a chance of not being fertile afterwards and then not being able to do anything about it, because I'd love to have kids, and get married and everything. I think most people do, so I really wouldn't want that to affect me. So, you know, it was something I had to do.

So from the beginning you were sure that?

Yeah, as soon as they said, "You might be affected in this way" "Right what can I do about it". So they go from there, so that's why.

Said that his grandparents and friends frequently visited him in hospital and they used to tease...

And who supported you around that time? Who was your main support?

Family were great. Yeah, they couldn't have done any more. They were always in hospital with me, even my sister. She's busy at Uni and working but she always made the time to be there, so that was great. You know, grandparents came in, because they live right next to the hospital so that was good. They'd always be down there, always taking the mick out of me [laughs]. Yeah it was good, I think that was the best way for me to get through it. Nobody gives you symp - well, they do give you sympathy but they try not to let you see [laughs], just take the mick and...

So they were keeping positive for you?

Yeah, definitely. I think so. And your friends. You've got to make sure you keep your friends. I just made sure I had my close friends there. They came into hospital when it was there, so you know, just cheer you up that little bit, and it all makes a difference. It just makes it less bad [laughs]. More, you know, endurable, so.

So would you say that to have people staying positive and trying to cheer you up is a good thing?

Yeah, I think so. Obviously when you get bad news then it is hard, for everyone to stay positive, but, the people around you, it's just natural for them to do that. They don't want you to see that they're worried or anything, although you do, but as much as they can they'll try to make you feel as good as you can. And it's probably the same on your part as well. If you do feel a bit down - well I didn't particularly let people know. You just think, "Oh, gutted", but you know if it's your parents, you don't want to see them hurt because of you, even though they're going to be. They don't want to see their kid getting sick or ill, so you just try to keep as bright as you can. Or I did, so.

For your parents?

Yeah, for everyone that saw me, you know. Always put on a brave face.

So, in a way it's kind of protecting them?

Yeah, I think, yeah. Yeah probably just me that does that [laughs] but not at all, yeah, so that again was just natural. You don't want to see your parents upset or anything, or your family, your sister, so, you know, just put a brave face on it, always a smile and it just makes them feel a bit better about it as well.

Did not finish his A levels and finds it difficult to decide what to do as a career.

Yeah I was looking at being an architect. Ideally that would have been my first choice. So doing maths, physics, those kind of A levels. And then you do look at your friends, the same kind of age, now, just finishing Uni, with a degree, and you think, "Ah, I wish", and it's as much for the social side of been at Uni as well as for the degree. That's why I wanted to go, the social scene is great. You think yeah, I've missed out on it, but you can't dwell on it too much, because you know I think it would just get you down. So I try to make the best of what I can now. I've got straight into the building apprenticeship. Thought, right, get into it that way. Did that, probably not what I want to do really. Plenty of money in it, but it's not much fun. I tried to get in the Navy. That's probably something I should say - It was really early on, when I was having one of the operations the consultant was like, "Yeah, after your chemo you'll be fine. It won't affect you and you'll be really fit and everything. You can be as fit as you want to be, join the SAS or whatever", and that's something I remember. And I tried to join the Navy, and got as fit as I could, and you know, go back, learning your maths and everything for the exams, because the position I wanted to go on extra tests and quite, relatively, high up. Did all the tests and everything, and there was a doctor there, because, I obviously knew that it was going to be quite hard. If you're going to die soon they don't want you in there, but he was really helpful. I think he'd kind of helped to start the hospital, the local hospital there, the children's ward going, so he knew everything about it, so he was great. He as quite optimistic that I'd get in. So I did all my tests and got all my fitness training and passed the standard medical, but then my case went up to London and everything, and they decided against it. And that was gutting. I was so upset about that, because the work you put in, but you know'

And what was the reason that they give you?

Oh they said, no, we're not going to have, we can't have, we can't have you. There's too much chance of recurrence, and if they're putting millions into your training then it's fair enough, I suppose. But you know, it was really harsh. When you put that much into it, and it's something you really want to do, and you know you're good enough, other than that, other than just because of what you've had in the past, and then that's all they see, So it's kind of hard, but you know, I got given advice on it, because it's so specific to the job I suppose. Something I have noticed on CVs, you do get asked about your health, and you do have to put it down that you've had that, and it does affect it I think. So'

So do you think that young people like you could be discriminated against when they apply for specific jobs because of the cancer experience?

As much as people will tell you otherwise, I think it's - I think so. I really do [laughs].

There's a need for awareness about it?

Yeah. I think each case is so specific, with this type of illness. Every case has its own, you know, positives, in a way. Whether it's likely or less likely to come back or not.

But I think if you get a particularly aggressive one, and they know that, or even if the word is mentioned, then I think something does trigger in their minds when you go for an interview, or put it on your CV, although they wouldn't say it. They've got to be thinking about it, I think. So especially if it is this kind of recent, only a couple of years ago. They don't know how it's going, so, but. It's just one of those things, I think [laughs].