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Cancer (young people)

Body image during and after cancer

For young people in the UK, physical appearance can be very important. The 'ideal' body as shown in the media can be difficult to live up to at the best of times but the effects of cancer can add to this pressure. The experience of cancer and its treatment can dramatically change aspects of a person's body, causing hair loss, extreme weight loss, changes in skin colour, surgical scars and much else besides. For young people going through this, the dissatisfaction, whether temporary or permanent, can become even more extreme.

During the interviews, young people did not talk so much about feeling unhappy with their bodies but more about how their experience of cancer treatment had left them ’not feeling normal’ or ’unable to fit anywhere’. Many young people pointed out that, during their treatment, they were either at home with their family, away from their friends, or in hospital and therefore amongst other patients who looked as ill as they did. Some, but only a few, managed to cope with their weight changes and hair loss by trying not to compare themselves with what they used to look like before their illness and its treatment. 
 
The young people we interviewed observed that their body image only became a big issue when they started meeting with their peers who were neither family nor patients. Most young people were concerned about how others saw them. They were very self-conscious and felt that people stared at them when they were out in public places. Not surprisingly most young people hated the idea of others feeling sorry for them. A few felt that they were unable to compete with their peers on any kind of equal basis and therefore withdrew from contact with the outside world until they were well again. As a result, during treatment, some didn't want to see people other than their family and their closest friends (see 'Unwanted side effect of chemotherapy’ and ’Impact on friends).

 

“I'd built up this massive thing in my head that I was disgusting, because other people thought I...

“I'd built up this massive thing in my head that I was disgusting, because other people thought I...

Age at interview: 21
Sex: Female
Age at diagnosis: 18
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I was already pale, and I knew I was losing weight, and then I was losing my hair too, and I just' most of the time I didn't care. Most of the time I was either in hospital, where everyone had cancer and, therefore, that was okay, or I was at home, where everyone knew. But if people were coming round to see me, I just, I couldn't bear the idea that they were looking at me with either pity or disgust, because that's what I decided it was. They could, they just thought I looked disgusting, and ill, and ugh. And that, I think, that was something that I didn't really realise in those three months, I realised it every so often, but it was something that did become quite an issue for me - my self image and self confidence really took a downturn. It was never great, but [Laughs] it was'

Can you tell me a little bit how you felt, when you look at yourself in the mirror?

When I looked at myself in the mirror, I didn't really see anything that different. I knew I looked pale, and I couldn't wear a lot of make-up, because my skin got very, very sensitive, and I couldn't wear mascara or anything on my eyes because my eyelashes and eyebrows, luckily, never fell out, but they were very weak, and if I'd put anything like that on, it would, it probably would have forced them to fall out. So from that respect, I could never do anything to make myself look better, but... I, it wasn't, it wasn't how I thought I looked, it was how everyone else thought I looked that bothered me so much. I didn't really have an opinion on how I looked. I was ill, I knew I was ill. I didn't really care how I thought I looked. I don't think, as far as I can remember, it was, it was the fact that when I walked down the street, I was convinced that everyone else just thought I looked repulsive, and I couldn't look at people. It was almost like I developed this technique of walking down the street like this, and I took in exactly what was in front of me, and I didn't take in anything else, because I couldn't bear the idea that people were looking at me like that. And it started off with just, just ignoring random people walking past me, and it got to the stage where I couldn't talk to people that I didn't know really well, because' I don't know, it's quite a hard process, I know, I didn't really realise it was happening until it was there and I couldn't do anything about it. I just didn't have the confidence to talk to anybody, because I'd built up this massive thing in my head that I was disgusting, because other people thought I was. It's weird, because I didn't, it wasn't so much that I thought I was disgusting, because I knew why I looked like that, and I understood why, and I think it was, I think I started to think I was repulsive because everyone else, as far as I was concerned, thought I was repulsive. It wasn't something that started with me and went to other people, it was something that started with other people and came to me, which is a strange thing, actually. I hadn't thought about that before. I don't know where that came from [Laughs].

 

Found it more difficult to cope with the 'pity' expressed by others than she did with her hair...

Found it more difficult to cope with the 'pity' expressed by others than she did with her hair...

Age at interview: 24
Sex: Female
Age at diagnosis: 17
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I think it was mainly coping with other people's reactions that I found hard. It was almost like the physical changes were happening to another me; I didn't really compare myself to how I used to look. I was ridiculously skinny and looked ever so peculiar with my funny little hats on all the time. And it was quite strange because whilst in winter you could go out shopping and things and people wouldn't think anything of it, when it was warmer and I went into a shop in my hat people did give me really funny looks. I really wanted to say 'Look, I'm not crazy ' it's because I haven't got any hair under there!'
 
So it was quite hard going out in public to begin with and I didn't want to go out by myself. But I think the main thing was that I didn't want to have to cope with people's pity and didn't want to have to keep saying 'I'm alright, and I'm still me, you can have a normal conversation with me'. And with less good friends, I think they felt they should hide the good times they were having and not tell me about what was going on at school and things. That was why it was so good talking to my best friend ' she was great and would fill me in on all the mundane things that were going on.
 
I think at that age you're very competitive and it was hard seeing my peers going off to university while I had had to put my life on hold for a bit. I didn't want to deal with that and I didn't want to deal with their pity' I just wanted to disappear and concentrate on getting better and then go back when I was well again.

(The text has been altered in accordance with the wishes of Interview 13.)

Others, amongst those undergoing treatment, said that they didn't care much about their physical appearance. But hair loss resulting from chemotherapy was a big issue for many girls and some boys because it was such a visible sign that there was something wrong with them’, (see ’Unwanted effects of chemotherapy’) even though hair loss for most young people was a short term side effect and hair grew back both on their heads and bodies. Hair that grew back after chemotherapy was sometimes of a different colour, or was thicker, softer or curlier than it had been before. A few young males had permanent loss of hair from their heads. They said that it had been hard to get used to their baldness at first because hair makes such a social statement. Later, they felt more at ease with it because it had become part of who they were, plus they didn't need to pay for haircuts! Some young men felt that hair loss was less of a problem for them than for women since very short hair or shaven heads on men are more usual.

 

Her hair has come back thinner and lighter but she did not mind.

Her hair has come back thinner and lighter but she did not mind.

Age at interview: 21
Sex: Female
Age at diagnosis: 16
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Well I, I kept like little whispy bits for a few months and I wouldn't get rid of them because I've, I kept saying, my Mum kept saying to me, 'Oh I'm going to shave your hair off now, you've only got these whispy bits'. And I said, 'No, no, 'cause this is this is the only hair I've got left, I wanna keep it, I wanna keep it'. And then in the end I just thought, 'No, I'm gonna have to get rid of it and have a new start'. And then I, so by that time I think I probably accepted it [sighs] that was the least of my worries I think after the way I'd been feeling I just thought, 'No I'm just gonna get rid of it'. So I just told her to shave it off in the end.

Yeah, but I was really upset I, did cry when she shaved it off 'cause I just thought, 'That's it, that's the rest of my hair gone'. I didn't think it would ever be the same again 'cause I, I've heard stories of people saying that your hair always comes back different, so that was really sad [laughs] in some ways.

And has yours come back different?

Yeah it's come back very different, yeah, used to be very long, thick, wavy and dark, and it came back really, really thin, straight and lighter, so yeah it's a lot different [laughs].

[Laughs] but how do you feel, about it?

To be honest I don't, I don't care I'm just glad I've got hair again, I, I really couldn't care what it was like, 'cause you can change your hair, so doesn't, doesn't really matter to me.

Okay.

I was just really, really happy when my hair started coming back [laughs].

Okay so it is not a big issue any more?

No, no, not at all.

 

Being bald is part of his new personality that had been shaped by the experience of cancer.

Being bald is part of his new personality that had been shaped by the experience of cancer.

Age at interview: 24
Sex: Male
Age at diagnosis: 16
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I was really jammy [laughs] I was. Yeah so yeah I'm, I'm now cool so I can say 'Yeah I do it for fashion.' But I didn't it, it, when I first, I don't, I don't mind it so much its, its strange because its, its socially its' quite nice to hide behind your hair. I mean if you want, if you don't want people to see you, you just hide behind your hair and it's really comforting to have no hair, to have hair like. When you have no hair it does feel as though everyone's watching you because you've got nothing you, you're just very vulnerable. But I don't, I mean I don't mind it because it's, it's a part of me now. 

You know I, I did think a long time about having a wig and things like that but well I didn't think that long about it, I thought, I thought about it having a wig but then I, realising you know my, you know my cancer is now a part of me you know its not as though its something, its something that has happened to me and like its, its not something that I want to shy away from because I am a different person you know since that, my defining moment my cancer being like the thing that's made me is such a large part of my personality. Its like if your character's made up of the summation of all your experiences then my cancer's my biggest experience so it is such a large part of my personality and character so I, I thought well you know I am bald and that's it you know it's, it's just a facet of me.

Changes in weight were quite variable during treatment. Some young people gained weight, which they put down to treatment with steroids, while others lost weight due to sickness and changes in their appetite. Either experience (and occasionally both can happen in a single person during treatment) can change the image that you have of your body. Some young people saw it from the point of view of how they used to look before their cancer treatment while others talked about it in terms of how they were seen by others.

 

Gained a lot of weight due to his illness and treatment and talks about how this affected his...

Gained a lot of weight due to his illness and treatment and talks about how this affected his...

Age at interview: 26
Sex: Male
Age at diagnosis: 17
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So that, that, that meant that my weight went up hugely because of the over-eating but also because of the introduction of drugs like steroids which are very good at sort of dealing with the swelling associated with brain tumours but they've got really nasty side effects like a lot of weight gain, they make you eat like mad.

So I went from a sort of quite a healthy sort of well slim kid up to I think probably 18 stone in about a month, or just over. And this meant that well the, that my skin literally just stretched so sort of on my stomach and on my arms and my back and legs I've got stretch marks. 

I'd put on this weight and so I felt very unconfident about my, myself and, and really didn't like my body image. I saw myself as fat, sweaty and ugly and, and I supposed that no girls would ever fancy a bloke like that. And that was very hard really because you know I didn't, I wasn't completely mobile and couldn't do things like other people could, I just wanted to be as everyone else. Which of course is, is another sort of strange thing for a teenager to want because they want to be different [chuckles].

But I wanted to be, I mean it, its really I suppose when one looks at oneself it, its very easy for me to get into this spiraling descent of, of anguish if you like of, of disliking my, of finding one thing that's wrong and then sort of attaching lots of other things and making myself more depressed really.

But I would for instance go out and see the, the other young guys, they're 17/18, they have sort of nice angular features on their faces and they were slim, you know they had girlfriends and they would start driving and, and, and doing stuff. And there was I, I felt fat, felt round faced, moon faced you know I felt sort of, I, I didn't really feel that I could sort of, and the other thing was that I didn't have sort of general chat. Sort of I, because I wasn't living that life if you like. The only thing that I had to talk about was me. And I didn't want to keep on going on about me because I felt that was incredibly selfish.

So you know I, I think that I probably separated myself from, from my peers.

People who've had surgery to treat cancer can be left with permanent scarring from surgery. Young people can have scars that are very visible (e.g. on the face or neck), others have them on parts of the body that are normally covered up (e.g. on their back or tummy) However young people’s self-confidence as a result of scarring seems to vary widely regardless of the position of the scars. Some girls said that, although they had initially been upset by the sight of their scars, they got used to it, with time. Others said that it had never been a concern for them. But this was not always the case - for instance, one young woman said she didn't wear low cut tops or go swimming because of her scars, and a young man said it had taken him years to gain enough confidence to take off his shirt in public. When asked about what happened to cause their scars, some tended to make a joke about them to avoid revealing the truth. A few talked of having been hurt by comments made by their peers, and one girl endured years of bullying at school (see ’School and work during and after cancer’). Occasionally a young person would feel that their scars affected their chances of having a relationship. The experiences of those that we interviewed who were in relationships, made it obvious that this didn't need to be a concern (see ’Impact on friends’).

 

She explains why the consultant is reluctant for her to have her keyloid scar removed and what it...

She explains why the consultant is reluctant for her to have her keyloid scar removed and what it...

Age at interview: 22
Sex: Female
Age at diagnosis: 5
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I had a Hickman line put in and that was left in for two and a half years. Usually they leave them in for two years, but for some strange reason I got slipped through the net [laughs] but that's when the sort of problem started when the line got taken out I was left with a quite a big cigarette burn on my chest. They decided that the next thing was that they would operate on it, to take away the rise of it and unfortunately then it started to grow. I was then referred back to the Hospital where I was given more tests some injections into the scar to try and reduce it unfortunately that didn't work and it was still growing I was then referred to s London I don't remember the hospital but it [laughs] was quite a big hospital in London and saw someone there. But they said that they would be happy to operate but I would need consent of my Consultant down in here. Unfortunately [laughs] my consultant wouldn't give me the okay due to the operations being given radiotherapy again so I'm now left with a Keyloid scar on my chest which is unfortunately not going to get any better [laughs] just probably worse. Which is, being a lady that I am of twenty-two quite self-conscious I don't wear low cut tops everything comes round to the neck

Okay, why did the Consultant didn't like the idea of you having radiotherapy again?

I like think face-ably it could cause more harm and cause the Cancer cells to come back again but they had no, no information to say that it would, it be like a fifty-fifty chance. In my view I was, I, I would had wanted that chance taking place and have the operation because I am a girl of twenty-two and, you know, I, I don't go swimming, I don't go, wear low cut tops and I do get asked loads of questions, 'What is that?' And I don't tell everybody about it because then I get sort of the treatment where I'm sort of protected and I don't like being protected, I mean I'm a fairly one-on-one girl, I do everything and if I want to do it, but luckily I just make up I've been shot by [laughs], shot by an arrow and it's [laughs]. But certainly when I do tell people they are very sympathetic and they be, once I've told them they don't bring it up again, that, you know, that's, that's final.

Being within TOPS, the group that I belong with, it's quite funny that I'm the only person that's got scar just like that, it's quite surreal thinking, 'Well why I'm the only person?' You know, there's [laughs] sixty, seventy people out there all had sort of similar situations and I'm the only person that's got, got the scars, so I did bring that up with them and they said, 'No, it's definitely just, you're, you're just, you're the odd one out the bag as such'.

[Laughs].

Which is [laughs] I supposed it's okay, I'm quite individual [laughs].

 

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

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

Age at interview: 21
Sex: Male
Age at diagnosis: 16
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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'

 

She finds it very difficult to cope with the stares and 'behind the back' comments of others.

She finds it very difficult to cope with the stares and 'behind the back' comments of others.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Let's go back to your scar. 

Yep.

It seems to be that it's a big issue?

Yeah, yes it has been.

It is just or mainly because of your career, because you're a dancer? Or it is also it has to do with your self-image?

Yeah, I think a bit of both. Obviously we weren't, we were unsure what was happening with the operation and I wasn't told how big the scar would be. When I first saw the surgeon he sort of pointed to a couple of you know centimetres and 'Five centimetres,' sort of thing and I thought fine, you know, I, I understood they couldn't do it through keyhole surgery. And when I woke up to see this big bandage slapped across my stomach, [laughs] and when I first saw it I was absolutely devastated. Because obviously you, your self-image, being a woman as well you, you know, it's a lot to you, and especially at my age and I'm dancing, so my body is seen a lot. You've got the whole feeling of when you're on holiday and having, you know, bikinis on and things like that. 

I went on holiday probably about eight weeks after I was diagnosed, because I insisted that I went for my own piece of mind, it was, we went as a group like from university and we'd organised it years before. And some of the comments that I heard behind my back about my scar totally, you know it was totally out of order and it was, it was really hard when it was so new, to see, you know, to hear people talking about you know, and they were saying things 'Oh look at that, that's a bad caesarean scar,' and 'Oh I wonder if she's had a tummy tuck?' And 'Oh it's not nice that is it?' And when you can hear them behind you and you're trying to deal with it already, and to just have that sort of knockdown of people talking about you. Some people can be very cruel and heartless and I don't think they realise what they're saying. And that, that's tough, definitely. 

And I'm conscious, I'm always conscious of it, it's a constant reminder that I've had cancer, that I've been poorly, which I don't particularly, well I don't like at all. And that's, you know it's, it's that, and if I'm in the, you know, dressing rooms at, you know, when we're doing shows in, in the theatre, I'm constantly trying to shy away from people and I'm conscious of covering my tummy up with my hand or turning away from people as I'm getting changed, and it's, you know, it's, I've got that constantly in the back of my head. Of course they've seen it and they know what it looks like, but I'm still, perhaps I'm consciously aware of that I'm actually trying to cover it up all the time.

And I have, I was seen by a cosmetic pharmacist who has prescribed me with some sort of camouflage cream and I was thinking oh that will be fantastic, you know, it'll just cover it up and bit and, but it sort of made me look a bit mouldy, it went, all turned me green [laughs]. So I was even more shocked at the fact that it had gone green under sort of artificial light. I thought there was no chance I could wear it on stage, because they'd think I'd been, I looked like I'd been cut in half by a magician's saw. 

So, yeah that's, that's sort of gone by the wayside, but once, I'm hoping to get it sorted so.

Plastic surgery?

Yeah. Totally cutting out and starting again, with any luck. 

Yeah, well I, I do, but I tend to cover it, it cover up the scar from the sun anyway and I sort of tend to go towards more of a tankini, so I can pull it down. And if I'm sort of walking away from a deck chair or, you know, to the beach, I’ll stand, and I’ve, I’ve noticed myself doing it, I’ll walk with my hand across my tummy so that they can’t see it. Because you do get stares, and it’s those stares, I think if people weren’t so blatant about the fact that I, [chuckles] that I’m different then you know, I, I wouldn’t be so bad, but I'm conscious of the stares and what they’re thinking.

Have you confronted anybody?

At school it’s quite funny I teach little children and a couple of weeks ago I’d got my dancewear on and I was stretching up and one of the children came up and tapped me on my shoulder and said “Excuse me miss, do you realise you’ve got biro on your tummy?” And I sort of thought well you know, they’ve not asked me what it was, but she felt it was, you know, somebody had scribbled all over me [laughs]. Which was quite funny and, I don’t mind that sort of innocence, I’d rather people come and ask me, than stare and sort of whisper behind my back. Because you know, that’s worse, I’d rather explain to them, say “Look this is the reason why,” but I’d rather somebody confront me about it and be honest and say “Gosh, you know, what’s that all about?” And you know, than ignoring me and pretending I can’t hear, I’m not deaf [laughs]. I can, you know, I can see and yeah. Yes. Definitely.
 

Says that she doesn't feel worried or embarrassed about her scars.

Says that she doesn't feel worried or embarrassed about her scars.

Age at interview: 24
Sex: Female
Age at diagnosis: 17
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Do you have a scar on your knee?
 
Yes. It's a very fine scar but quite long. I suppose nearly 2 feet long. It's amazing really how small the scar is when you think about what they had to do.
 
Does it worry you cosmetically?
 
Not really, no. I still wear short skirts and things. Actually, for the first party I went to after I had been ill I wore a dress so short I feel quite embarrassed thinking about it now!
 
I don't wear thick tights or anything to cover up my scar; it has never really bothered me. I refer to it as my Shark Bite scar. I've also got a scar from my Hickman line and I do try to find bikini tops that cover that up.

(The text has been altered in accordance with the wishes of Interview 13.)

Young men who are diagnosed with testicular cancer have to have the affected testicle removed by surgery (an orchidectomy). Those we talked to said that, in the end, you get used to losing a testicle, and having a false (prosthetic) testicle helps. But initially it can be a difficult thing to get your head round. 

 

Says that it takes a while to come to terms with the loss of a testicle through cancer and...

Says that it takes a while to come to terms with the loss of a testicle through cancer and...

Age at interview: 25
Sex: Male
Age at diagnosis: 24
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For me it was the physical weakness and recovery period after the operation and the chemotherapy. I think the stigma that you've had cancer can also scare friends. People react in different ways. Some will ring you up and be fantastic and ask lots of questions. Others perhaps avoid the subject because it's easier for them. They don't know what to say. So that was quite difficult. Losing my hair was a physical thing. I knew I looked a bit different but you know, it was a side, small side effect of, of staying alive so I weighed that up and sort of got on with it. And the physical aspect of losing a testicle even though I have two now that's definitely helped. I think now you just sort of, you forget, you know you, you move on.

Would you say it's kind of temporary impact would you say?

I think so yeah. 

Ok. Would you recommend it to others?

[Ah ha] Definitely. Obviously, you know, different people are a different. I remember being given the option before the operation and without a doubt. I said there's two now and I'd like there to be two when I wake up. And I'm pleased I made that decision.

I don't think you ever quite forget about but it doesn't become so much of an issue that it was a few months ago. I think yeah it's a temporary thing.

Ok but other young people should be aware that this is going to be an issue and that you have to work on it?

I guess it affects people differently. I don't think you really need to work on it but perhaps think of it along the lines that you get used to it in the end. It's not a physical thing that shows, mentally perhaps it takes a while to get your head around it but then once, once you have it's fine or I found it fine.

Young people found  it useful to talk to other young people who had been through the same experience, when coming to terms with problems with their own feelings and ’self-image’. It also helped them realise that they were not the only young person in that situation. To meet others like themselves was described as a greatly 'empowering' experience. 

 

For young people their confidence and the way they look is very much related to the way they...

For young people their confidence and the way they look is very much related to the way they...

Age at interview: 23
Sex: Female
Age at diagnosis: 17
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Yeah, yeah, it is. Because when you become a teenager you think, especially like - I was seventeen. You want to learn to drive and you want to be able to go out. You want to go to the pub and you want to drink, and you want to go places, you want to go shopping with your friends. You know, there's so many things that you want to do. You want to be away from your parents, and all of a sudden you're pushed back into this world where everything that you do, and everything that you are is controlled by other people. And it it's - that makes you quite angry as well, and when you come out the other side it 's still quite scary, the whole world is kind of a scary place, because you know, your body is not the same as it was when you went into the chemotherapy. You can be disabled. You can have lost a limb. You don't look the same. You don't feel the same. You're kind of not the same person. And you come out of it, and you want to kind of do the things you think you should be doing, but you're still kind of scared and you're still kind of dependent.

Yeah, it is, because you - you're not at all confident really anymore, really. Some people might be, but the majority of the people that I know kind of come out of the chemotherapy - and I think that when you're a teenager a lot of how confident you are is related to how - the way that you look, and the way you think people perceive you. And if you go out shopping on your own, and you've got no hair, and you're really skinny - people are going to look at you - most people don't look at a teenager and think, "Oh they've had cancer. That's why they've got no hair". You know, they'll look at some skinny, shaven headed person and think, "Oh they're on drugs" you know, and you kind of know that, and you - you realise the way people perceive you and it's just quite bad really.

Because just being around other young people, and knowing you're not the only one is so, like, worthwhile. Because if you go out, or you walk down the street, or you walk round the shops or whatever, you feel like you're the only person with cancer, or who's had cancer. But sat in a room or like at the cancer conferences sat with two hundred people, you realise you're far from the only one that's going through this, or that's had that disease.

So it's had, kind of, it reinforces you, it makes you stronger?

I've been to the last three conferences they've had - the Teenage Cancer Trust, and they are the most amazing experiences ever. Because you're in a room with, like, two or three hundred people who know exactly how you're feeling, and who know ex- they've got the same fears you've got, they've got the same problems, they've had the same every thoughts, they -they - it's just like the most empowering thing, because you are - you're not different, really. You're exactly the same as those people. And at the end of the night you go to the bar, you get up and you dance, and you dance a bit funny because your leg doesn't really work, but you can guarantee that there's fifty other people in that room who are feeling exactly the same. You know, there are people there with legs and arms missing, and eyes missing, and no hair, but nobody stares at them. Nobody even sort of takes a second glance, because that's what's normal, really, in that world.

Last reviewed December 2017.

Last updated November 2014.

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