Interview 04

Age at interview: 18

Age at diagnosis: 18

Brief Outline: Diagnosed with Ewing's Sarcoma (malignant bone tumour) in May 2004. His treatment consists of 10 to 14 courses of chemotherapy, surgery and possible radiotherapy. Treatment at time of interview: chemotherapy.

Background: Student; lives at home with his mother and father.

The first symptoms he remembers are a massive cramp on his leg following by walking difficulties.

Well my symptoms really began one, one night when I was, when I was walking home and I had, and I, I ran a little way and I, and then later on that night I had a massive cramp in, in my leg. It was really painful and, and left me, a, a little incapacitated for a few days. I mean I thought I'd, the doctor, I and the doctor thought that it was just, I'd just pulled a muscle. And although it was painful I never imagined it could be anything like cancer. 

Over the next few months I, I experienced some pain in it but I still continued walking four miles to and back from school a day so it couldn't have been that bad, just the fact that I thought it was a torn muscle just made me, made me carry on even though it was painful. But then gradually, sort, this began in October and by the spring it was getting worse even though I would have denied that at the time. And, and, and even to sit down for long periods of time left the leg feeling, feeling very, very sore. The whole area along the bottom of the leg was numb. Along the top of the leg was numb and I was just getting pains all up and down it from my awkward posture that I'd adopted to compensate for it. And people would comment that I was walking in an extremely awkward, awkward manner although not as many people as you would have expected which is all, which is typical. Then, then around April and May it was really, I was really beginning to get very, very tired and, it was, I'd, I tried not to let it interrupt with my school work as I was doing four A' levels at the time but, but it, I couldn't, I couldn't help it and, and ultimately I had, I was going to sleep quite a lot earlier and just getting really, it was really just wearing me down. 

Says that his GP was 'pretty useless' but did refer him to a neurologist. He also explains that...

And I was going through lots, I, over the period I of course went to the doctor's when it was, when it was quite bad, but they were pretty useless really. They thought that it was just muscular. It, they, and they gave me fairly useless tablets and couldn't actually really do anything about the pain that I was experiencing which was also making me not be able to sleep properly. I had to sleep on huge piles of cushions [slight laugh] to be able to get into a position where I was even semi-comfortable. And then around May, the, three days after I had officially left school on study leave, I went to see a neurologist as finally they had decided that it was probably something to do with the nerves it was being cut, it was being cut off somehow, that was what was causing the numbness. That was really the only clue to what it was. And he detected a very large swelling on my side, sitting on the top of my pelvis, and he, and although I still at this point I had no idea that it could be cancerous or anything it was just, it was just a swelling, or a swelling on my groin as my Gran liked to describe it which made it sound terrible. And then, [slight laugh] and so he, and wanted me to go into hospital which was more inconvenient than worrying because I was supposed to be studying at the time but, so there, so there I was, and I really didn't feel as though I should be there initially.

So you since the symptom started, until you saw the neurologist around?

May

Around May. So it's about eight month that you went to see your GP and they just gave you painkillers?

Yes, yes and sometimes not even that. They refused to really take my symptoms seriously, even though it was obvious that I was in a lot of discomfort. And all they did was examine me and, and they couldn't find anything. But I suppose that could be explained by the fact that my, that my illness is, my illness is a very rare, rare form of cancer and it's often not that easily detectable in the, in the earlier stages. 

Explains what happened when he went for a 'bone marrow' biopsy.

Yes, ok, this will be gory. What they do is they don't sedate you any more because apparently that is dangerous [slight laugh]. I was rather disappointed to find that out. And they, they stick a needle into your I suppose it's sort of into your upper buttock and, into the bone, and, which is relatively painful, and they just extract some blood from the middle of it which is, which is your bone marrow which is the area that produces all the blood I'm, so I'm told, and they also take, take other slides from, from it and that just. And they also give you gas and the thing they give to pregnant women if you're, to ease your discomfort, but it's quite an uncomfortable thing but it just leaves a very small mark after a few days.

How long does the procedure last?

Oh God.

Do you remember?

It seems to last for hours [slight laugh].

You just want to forget about it?

Traumatised [smiling].

He was moved from a single room to an open adult's ward which he found depressing.

Have you met other young people like you there?

I know of young people like me but it's, it's overwhelmingly older people.

This is in oncology?

Yes.

Oh, ok. How do you feel about spending time in an adult ward?

Well, for the first treatment and a half I got my own room. But, but then they moved me into a ward and that environment is quite difficult to, you get, you get used to being, 'cos, 'cos some of, some of the, the people in the ward obviously look extremely ill and that really does grind you down after a few, after a few days. I mean you become very aware of it, you know you almost, and I almost isolate myself off from them. You know, thinking of them as ill while I am the only sane man in the asylum so to speak.

Ok, so you can, in a way it could have a negative effect on you?

Yeah, yeah, yeah it does, it, it's quite depressing, especially as you're stuck there all day because of, because you're attached to a drip which needs to be attached up to mains which means that you can't actually go anywhere but the, but the toilet, all day.  

Ok, there are no teenage units around this area?

I could have been put, as far as I know there aren't. I could have been put on a children's' ward but apparently they're really noisy and I'm a more quiet person but, but that, that's just the way they do things at that particular hospital.

Ok.

Although they are planning for a teenage area, small teenage area which they invited me to submit ideas for.

Mhm, ok.

But there have been other, a few other young people in the ward at the same time as me, but, but really, we haven't communicated a great deal.

Why do you think is that?

They've either been surrounded by family or I've just felt a little awkward. I mean I, there's nothing, there's no reason why I haven't done it, I mean I haven't set out not to do it but it's just how things have turned out really.

Ok, because the atmosphere is not one that you feel sort of...?

No, it's quite a, very, by the final, by the final day of one of my treatments everyone in the ward was elderly and you know it was complete silence for the whole time. You know, and my mum was there, but we would, and we were stuck in the same silence as well. There was a, you know an atmosphere can develop very easily.

Yeah, just gloomy.

It, it can be. But at the same time, just because there are older people there, it doesn't necessarily mean it has to be gloomy. I mean some of them can't stop talking [laughs] you just want them to shut up [laughs].

Explains that chemotherapy was the only option for his treatment at the time.

And they decided that it was definitely malignant, malignant, and but, but it had, but it hadn't spread to any other organs which was, which was good. And then, what, yeah and then, and they they'd, they set out what they were, what they were going to do and that was really a lot. I went to see a consultant at and that, and he said, he was a specialist in this area and he set out what he wanted to do. And that included quite a few courses of chemotherapy. Sort of 14, which completely wrecked my plans to go to University that, that year, and it was, it was quite a blow for me as it meant that I had a year of nothing but having treatment really.

14?

10 to 14 treatments of chemotherapy. And they'd also probably want to operate on the, on the lump eventually, remove that.

There were, well there was only one option for treatment really. I mean my consultant made it, made it very clear that the only option was chemotherapy. Possibly then with surgery or more chemotherapy and then possibly with radiotherapy. And there wasn't ever an, an option. And when I asked him about why they just couldn't operate on it he made it, he made it very clear because he's a very fatalistic man, you know, 'You, oh if we operated now you would lose your leg.' Because he [laughs] he's very blunt.

He explained why he had to use chemotherapy?

Yes he did. It was to shrink the tumour because obviously the thing was too large to remove.

Says that cancer is just a word and that you need to have the right attitude when having treatment.

And in terms of advice to others. Is there anything you would want to tell other young people who have been diagnosed with the same type of cancer you have?

Well, just, just don't be put, don't be scared by the word ultimately it is just a word and most cancers are treatable and you just need to go through that, that, that procedure. And, you know, you've just got to have a pragmatic approach to it.

And what about to young people who are about to start treatment, chemo in this case?

Chemo can be unpleasant but really it's ultimately as unpleasant as you make it. Yes you can feel, you can feel queasy, your bladder can become extremely full during it but it's just, but if you go in with the right attitude then you'll probably, then you probably won't suffer too, too badly. But if you go in with the wrong attitude then you will suffer with it a bit.

Can you explain a little bit again the difference between the right attitude and wrong attitude?

Well, the right attitude would be to go in accepting it for what it is, you know as a, as a treatment which is ultimately doing you good. And, and you know not, not exaggerating what it is likely, what it's likely to be. You're just attached to a, to a drip really and you know, you can, you can handle that. And the wrong attitude would be just to, just to go in just to just completely dread it and you know just to exaggerate what it is, what it is like in there and not, and if you go in with the right attitude then you'll probably suffer less from the side-effects. But if you go in with the wrong attitude then you'll create your own side-effects.

Initially he denied to his peers at school that he had cancer because he didn't want to be...

Well, I'm a little bit limited in my social life as my mum is convinced that on my, around the time that my blood count is lowest, I really shouldn't go out anywhere which has been co-incidentally the only time that I've actually been invited out by my friends. Well my friends are, have, haven't, have ignored me a little bit since this whole thing happened. I mean what came out in school was rather garbled, especially as school had ended at the time and there were only, people having extra lessons who actually found out about it. Even then it was a rather strange account that some people thought I was dying or something. You know and they were quite pleased, I mean quite relieved to see me return on that one occasion.

Ok, how do people react to you when you went back to school on that occasion?

Well there were, there were versions of the story and the most far out one was that I had cancer, which of course, which in the interests of just having an easy life, I hadn't seen these people for quite a while at that time, I just, I just flatly denied. You know, I could, it was a stupid thing to do, but I could take it back later, and it's not like people, you know, I didn't particularly want to burden people with that, with that knowledge, or be treated differently by it. You know, eventually I let, I only lied to certain people, and eventually I let, the truth did come out a little, but I drastically played it down.

So your concern was not to be treated differently?

No, I don't particularly want people to feel sorry for me.

I felt I had to do it. I didn't think that a lot of my friends could really deal with the, that fact, that fact in a, in a useful way really. I mean as ridiculous as that may, as that may sound I just, I just wanted the reason that I have, that my friends are useful is to give me that semblance of a normal life and they're all going off to university and I don't see why, why I should be treated differently as once I'm out from my treatments I'm basically the same. I may have a few side effects but I'm the same. I don't feel ill. You know, this, the tumour is in, is on my pelvis which is hardly a, a part, a particularly sensitive part of my body and the, and much of the pain in my leg is gone so I don't see why I should be treated that differently.

He thinks that his positive attitude has helped his parents and grandmother to cope with the fact...

Well, my Nan isn't the most well adjusted person. She's quite, she, she's very neurotic and she's very much a hypochondriac, especially about, especially when it comes to me who she's completely obsessed with [slight laugh]. And, and really although she tried to hide it from me extremely badly she's very concerned about this, you know, anxious. She's not, she's never showed that she's upset really, but she was, she does get extremely worried about the whole thing and really, and at first my prime concern, sort of my little project was to, was to comfort her and, you know, by, by being strong. Like, that's the way I've, that's the way I've done it, and carrying on as normal. But I still know that she's extremely anxious, anxious about it and she keeps, and she just keeps on saying that, well 'Every one is one less.' About the, about the treatments which isn't that comforting really, but she keeps on saying it as the only way that she really copes with the whole thing. And it's just been pushed under really rather than actually solved the problem, with, with her.

And what about your mum, dad, how have they reacted? How they have coped?

Well, well from what I know now they were of course extremely worried by the, by the whole thing, but we, we almost pretty much hid that side of things from each other that we were really quite anxious about it and, sorted it into sort of my pragmatic view on the thing. That you know, just it was only matter of having so many treatments and it wasn't a great deal to get worried, worried about. And you know, generally, they've been, they've been really, really good about it. And they, and they've coped very well. But I've still, but I've still made sure that I've remained positive for them and I think that's, was, helped a great deal. And also they are quite strong people.