Cancer (young people)
Impact on friends
Most of the young people we interviewed were wary of the reactions of friends and peers following cancer treatment. One teenager who had missed a lot of school found themselves put down a year and felt lonely because of having to establish themselves in a new group that had already formed their own relationships (Interview 01). It was also of great concerned ’not to be treated differently’. Perhaps because of this few decided to continue their studies at college rather than going back to their original school. Of the young people we interviewed many also found that their peers were at first afraid to ask questions about the cancer or say anything in front of them in case they said the wrong thing. Maybe this was because their friends didn’t know how to behave themselves or how those that had had treatment, would react. On the whole friends became more relaxed about it all after they had talked about their experiences of cancer and treatment as in general most young people don’t know very much about cancer and feel awkward and embarrassed about how to respond.
He was pleasantly surprised to find himself supported by both his peers and his teachers.
He was pleasantly surprised to find himself supported by both his peers and his teachers.
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When you go back, how did you feel about going back? Did you have'?
I was, I was pretty nervous at first, because everyone had started already, it was like a week or two into that. So, the first year at college, I was having my first operation, so I recovered about a few days after. My neck was really sore, I had stitches and stuff in there, so I couldn't really go out anyway, I got knocked or whatever, so, I started college about a week or two afterwards. When I, when I first came in, I was really, really nervous. I went to see one of my, went to one of my lessons - RE - and everyone, everyone had found out, because my brother told everyone, but I told my teacher and stuff that I won't be coming in, and people found out in my form and everything, why I wasn't coming in, so everyone's like, I had, my friends came in to see me and things, but not many people were kind of exactly not many people knew what it was, so they were a bit afraid to sort of call me and things at first. But then, when I first went to college, I went to my lesson, and my friends were there, and it felt kind of good because everyone was sort of rushing to me, I felt like a celebrity or something, because everyone's running to me and saying, 'How are you?' this, that. We heard what happen, and everyone was kind of sympathetic, but still being really cool. My friends were still there. I felt, I felt better that day, so I went in. And I had shaved my hair off then, so they'd look at me all weird kind of thing, and I felt like a different person. I was wearing a hat and stuff most of the time, and it was pretty cool, because I went to school when I wanted to, whenever I felt I wanted to because I was, I was ill, like, the first time, the first time I had any treatment and things, so.
Yeah, well, I did, because I had my hair shaved off, for one thing, which kind of made me different to everyone else, from last time they saw me, I was different, and now they find out I've got cancer and this and that, and I had this operation, and my hair's gone, and I felt like a different person. I didn't know how I'd get back in there. But as soon as I, as soon as I did, I didn't have to try too hard. I was still the same person inside really, so I didn't have to try too hard. And once I got in there, I was okay again.
Were you able to talk to your friends, about what you'?
Oh yeah. Everybody asked, everybody asked a lot. My teachers asked a lot. My friends asked and I even have to talk in front of the whole class, because one tutor time was on cancer, and like learning about, you do, like, little educational things going on every week, and all it was on cancer, so I did a little talk about how I, how I went through cancer and everything, and did a little speech about what I felt and this and that. That was during the middle of my treatment.
Initially he denied to his peers at school that he had cancer because he didn't want to be...
Initially he denied to his peers at school that he had cancer because he didn't want to be...
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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.
Most young people found their friends to be very supportive and even protective - if needed- at lunch and during break at school. Friends would visit regularly and show respect for what they had gone through. But sadly, in a few cases, some young people had lost contact with their friends when they'd been in hospital for long periods of time. Those having long-term treatments who were unable to attend school regularly found that it was difficult to get on with new peers and to make new friends.
He lives in a small village away from school so it was very difficult to maintain regular contact...
He lives in a small village away from school so it was very difficult to maintain regular contact...
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So you went, you went, when you went back you were with kids, with people younger than you?
No I was in the same, I was in the same year but they just had a year of extra being with each other and I just sort of walked in and they'd seen me around a couple of times, but they didn't know me, they didn't know anything about me. And it just really felt awkward to the point where often I, I'd, I would go in and I would just sit on my own because it was easier than struggling to makes friends and it was just, I thought I've spent so much time not coming to school because I've not felt well enough, I need to catch up on the work rather than mess around making friends. They've got lots of other lessons, they can catch up, if messing around makes them fall behind, but I've not got that option.
Did they know that you were having treatment for leukaemia?
That was interesting. Because it got to the point where I'd go in and I wouldn't know who knew, because it, because when you left the school that I was at when I first became Ill, because I changed schools sort of the summer that I was diagnosed. So I started a new school and because one of the kids that went off to the other school, his parents worked at the school I'd just left so he knew, then he told his mates, who started to tell my mates so they already knew but they wondered why I'd not told them when I hadn't even thought of telling them because I was only just coming to terms with it myself.
So it just felt like school was just this whole other environment and social activities and all this other stuff that I really didn't understand and I just thought it's easier just to keep out of and just go in for what I'm there for and then come home.
But among your peer group, did anyone try to talk to you about it, or ask you directly or?
Not really. I mean I went to school one day and someone that I'd known quite well came up to me and because I'd got no hair at the time and she hadn't seen me since I disappeared off on this school trip and never returned to school, she said, she started crying and she said 'Why didn't you tell me?' And things like that, and so I think she found it difficult because, because I hadn't, I hadn't, I hadn't opened up to her but I really didn't, didn't feel that it was a priority, if that makes sense.
So, I didn't feel that making friends and keeping up with friends, because I live sort of in a village away from the school so it was rare that any friends would sort of come out to the house and see me when I wasn't well. It was literally just you see people at school so you go and see them and say hello to them but you don't really get to mix with them the same way that other people do.
His friends at first found it very difficult to approach the subject of his illness.
His friends at first found it very difficult to approach the subject of his illness.
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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.
The impact their illness had on friends and acquaintances was different for the older people we interviewed. They said that friends from university had either been very supportive or had been totally unable to cope with their illness.
Said that some friends were wonderfully supportive while others did not know how to talk about...
Said that some friends were wonderfully supportive while others did not know how to talk about...
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Having a friend who had also had cancer was very important for some young people because it provided much valued emotional support and understanding. Both young people who had been recently diagnosed and treated, and those who had been in remission for some years felt these friendships were an important source of support and communication. For instance a young man who was affected by cancer in his early teens never had a chance to talk to others with a similar experience of his own age and, looking back, thought that he had missed out on something important. Some young people who had experienced cancer commented that, compared with their peers, they felt more mature and less inclined to argue about what they considered 'insignificant stuff’. One young man said, 'My friends say that I’m a forty-year-old man in the body of a nineteen year old boy’ (Interview 10).
She was hurt that some of her old friends didn't support her through her illness but found...
She was hurt that some of her old friends didn't support her through her illness but found...
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It must be kind of painful to know that?
It is because it's as if I've done something wrong, and it's not something that I've chosen to have. And it would be nice for them to say, you know, 'Would you like me to talk about it? How do you want me to play it? Do you want to talk about it? Shall we not talk about it? Shall I take you out for a coffee?' Or just something like that, just to be there so I know that they're there, but I feel that I can't phone them because I feel like I'm putting them out a bit and they might not want to talk about it yet really it should be the other way around, they should be coming to me, I don't, it's awkward trying to reach out and ask them to phone me, it doesn't seem like that should be my job if you know what I mean.
And those friends you have talked to how have they reacted?
They've reacted differently really. Some of them have really rallied round and you know, good text messages and things like that, just something little, you know, and sending me sort of pamper kits and things like that, that has been great, you know, it's, it's what you need, it's something just to, as a light relief really. But others have sort of not bothered to contact you, or if they do contact you it's very infrequent and they won't ask how you are. They'll sort of skate around the fact and I wish I could forget it like that, you know, to me it would be nice if I could forget the fact that I'd been poorly but it doesn't work like that if you know what I mean, so.
So, another side, another aspect of your experience is that you have made good friends with other patients.
Yeah, I have, yeah. And they're all similar age groups. I mean some of them are younger, some of them are older but each of them obviously have had different experience and that's handy if, if I would need to have treatment they're there because they could tell me all about it, they've been through it, and I mean some of them have really been through it and they've had a really tough time. But they have come through it and that's, that's nice to see that they're you know, strong people for it and yeah, it's nice that we can relate. When you're walking around you know, you're normal place when you feel like people are sort of pointing at you and you're singled out, whereas when you're with them, because we meet up, up quite regularly, that, within the hospital we have a group that we meet up with, it's the other way around, it's not, 'There's somebody with cancer,' but 'It's oh they haven't had cancer.' So it isn't, sort of the table's turned which is really nice just to have that release of not having to worry about it all the time and you don't have to watch what you say we, we laugh and joke about things, about you know, the funny times, perhaps some of the slip ups that have happened in hospital and you know and it's nice to have, to have some humour about it, because you can, you can laugh about it, it’s nice to laugh about it. Hmm.
She has participated in a support groups for six years and at the same time her social life in...
She has participated in a support groups for six years and at the same time her social life in...
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Can you explain to us about TOPS?
TOPS is a charity that was created ten years ago, we are now in our eleventh year. It was a, a group that was decided to have for people that have had Cancer and they had originally started just as a, as a summer holiday a week getaway with about twenty-two children they bring in Nurses, Doctors, volunteers for the week and you go away and you have a real good time. Try, I mean, although people might still be on treatment or just come off treatment it's, it's a real good feeling to be with people that are like that and also another, another aspect is that, you know, you see them but unfortunately the next time you might see them might, you know, they might have passed away or something, but there's that support in there if they have passed away that, you know, you support everybody else and that's, that's sort of like really good.
How long ago did you become'?
I joined six years ago and haven't looked back since [laughs], and
So you were sixteen?
Yeah. And it was literally because there was no poster so it was thanks to one of the Social Workers actually in Hospital that sort of gave me the details and said, 'Oh you join, you must join'. To get all the details and I joined and that's where I met [name], [laughs] and few other of my friends, unfortunately I only met [name] a couple of times 'cos obviously she wasn't really well while TOPS was, was her head, but yes I mean it's, it's growing, it's really growing quite rapidly now so.
So it has made a big change in your life?
Definitely so, yeah, as I say, you can talk about it with friends, you can make funny jokes about it and it's not gonna go like really serious kinda thing, 'cos they know where your coming from, which is really, really nice, really nice and.
And the other friends are from work?
From work yeah. They don't, some of them know, I mean I h, I had to have a full blown medical when I first started and obviously what got written on the medical had to go there so I believe some of them know but I tell them if they need to know. I based it on that, on that really. I mean I'm fit I hope I'm healthy, [laughs] so I'll see if it's not affecting me as such then it obviously won't affect my work. But I, obviously I need to take time off for hospital appointments and all the rest of it and they are aware of that and they are very understanding that I need to take time off and if I do take time off then I just re-make up the hours somewhere else and they're fine about it, but I, I sort of have told a few people and then they were sort of like shock horror because they didn't believe, they didn't, you know, look at me and think, 'Oh God, you know, your pretty okay' [laughs]. So I tell them if they need to know on the basis really.
In retrospect he sees the importance of talking to someone about your experience of cancer when...
In retrospect he sees the importance of talking to someone about your experience of cancer when...
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I've been able to talk about it a lot more since I got older but in school it, it was literally was something that only I felt I was aware of. It was like a big, it wasn't like a big secret because everyone knew that I was, been off school ill. What the actual particulars of what happened to me and how I felt was a big secret. I never really discussed it with anyone. So I don't know whether that was the, that was a mistake from, from my part but I didn't really, I didn't really talk about it that much. And, but like just said in school I never really had any, any problems.
But who have you talked to about your experience now?
I was I, I just talked to my, talked to my friends in the past, friends that I met in, in university, friends from, from before, you know from school. Then fortunately the other people in my family have had a cancer so I've been talking to them about it as well. And just people in work, just since working in the university there's been people in work that I'm, have suffered from various types of cancer and I've talked to them about it and shared experiences. It's been, I've talked about it a lot more seriously in the last few years and it's mainly because it's because it's with people who have suffered from the same thing.
It's very difficult to talk to people who, who don't, haven't suffered from it without them sort of, I mean, it's a big thing about cancer now is that it, you know it is one of the, is the big sort of fear, buzz word of the, you know, it makes people very frightened talking about it. And people take a step back and sort of think, oh I, you know that, that was really terrible and you know. They're not they don't want to hear about it but it's, it is a bit sort stressful for people to talk about it because people don't want to offend you or don't want to, you know, they think, they automatically assume you're very sensitive about it, you know. They're right to think that. But I, I just never talked about it really with anyone not even my parents I don't think really, not, not in depth, not when I, not when I was a child, not when I was young and a teenager.
I never discussed it. And I would advise people if they, if they feel they want to then to sort of find, you know, to, to do it, talk to people about it. I mean it, I was very, surely it's extremely difficult at that age but I, I didn't and they can, I don't think, I don't think it helped, I don't think it really helped to be honest. I think I would have been in a bit better position if I'd done that. Yeah so I, I didn't I didn't talk about it really. It was very much something that I kept to myself.
A lot of the time I've, I've thought about if there was some way I could volunteer and do some kind of, anything or any kind of work with young people who suffer from cancer because I just feel from my own experience although I've got through it and it's, it's probably had a positive effect on me overall although I don't know how I would have turned out if I hadn't had it but. I'm, I'm not glad it happened to me but I can see the positives from it happening to me. It was, it was a, it was absolutely horrible experience that I went through and it was. It was an experience, I felt alone, I quite alone when I was having it and that’s no, that’s no observation on the people I was being, treating me or my parents or anything. I just think it’s one of those diseases that really isolates people when they are having it because anybody who isn’t suffering from it can’t, you can’t make them understand how you feel and how, how. It’s very difficult to describe when you’re having any kind of treatment like that.
Relationships both during and after their cancer treatment were an important issue. Some felt unattractive and couldn’t imagine anyone wanting a relationship with them. Others were concerned that they’d missed out because their friends were all into having serious relationships. Even those who were too young to have had a girlfriend or boyfriend before their illness were concerned about how people would react to them when they found out that they'd had cancer. They were concerned about when to tell their new partner about their illness or the fact that they might not be able to have children. Those few in long-term committed relationships, said the key had been finding the right partner for them and discussing these issues early on.
Talked about how he began to establish a serious relationship with his partner while receiving...
Talked about how he began to establish a serious relationship with his partner while receiving...
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Do you remember how you approached the issue of fertility, sort of?
Yeah, I mean obviously it wasn't sort of instantaneous but it was fairly early on and I, it, we approached a lot of issues at the same time. We just kind of talked them out and we would just kind of go through them that, the difference of you know, hair from most people. The fact that, you know, it, it was an illness that could come back and could potentially you know, I could potentially die in extreme circumstances. And so all of those issues we kind of confronted fairly early on in our relationship and just talked them through basically. And I just tried to basically explain how I felt about them and that you know I wasn't going to expect anything from anybody because I didn't think it was fair so you know I, I was just going to say, 'I just want you to basically treat it as a normal relationship if you can and see how it goes. And, you know, if you can accept these sort of issues we can just see where we go from six months down the line when things return to a bit more normality.'
So we kind of approached it like it wasn't going to be a serious relationship but obviously dealing with all these serious issues it meant it was in essence, because you know, all those sort of issues immediately means you're in a sort of serious relationship. But we kind of put no, I put no restraints on my girlfriend at the time you know. I said you know, 'I give you whatever back out clause you want, you can just walk away whatever time I don't expect anything from you.' And I think that was the only way I could really approach it because I didn't want to be that, that selfish that if something did worry her, or freak her out, or you know, she came to think sort of, oh God, three years down the line perhaps, or you know ten years down the line when I want children, I have to go to you know whatever sort of clinic to kind of get it all sorted out, I can't have it sort of naturally done. So I, we, we basically approached it like that and said with fertility, 'If it is an issue you know, you can just basically walk away at any, any stage and I will totally understand because that's, that's all I can do really.'
And I guess at the minute, sort of four years on we still kind of face those sort of issues and luckily she's still kind of accepting of, you know, if it, if it happens it happens if it doesn't then there's always that, it's, it's a second kind of guarantee I guess that something, something could happen. It's just, it's just something that, we're kind of dealing it, on a, kind of as it comes basis I guess still [siren]. We will try sort of naturally first off, as you, as you, as you only can and then if it becomes an issue then it becomes an issue we'll raise it when we have to deal with it. We know it's there so it's always something to fall back on if we have to but, hopefully, being well, it should, well, should hopefully lead a normal lifestyle like I do now in any case. It should all hopefully proceed well but, yeah I think that's how we dealt with it. We just kind of put no limitations on either of us and just said, you know, if one of us kind of thinks, God it's, it's too much, can't, can't cope with it that either one of us could have just walked away and we would have understood I think for you know for the reasons that we've gone through. Luckily again, like me she didn’t put any limitations on me and any restraints she just treated me normally like she would have done any sort, any sort of relationship basically and I, I was really thankful for that it, that I could have that sort of benefits. That I could just kind of progress, as any normal person would, you know. We would just do normal things, normal dates, normal you know everything just carried on as normally as we could and any sort of issues that were obviously apparent like, like the hair loss we just kind of took in our stride and we would talk them through first and then get over them and she’d, basically, it basically involved me kind of worrying about it, telling her that I was worried, and then she would just say, “Well don’t worry about it” [laughs]. And we’d just get on with it, which was great yeah.
Pretty simple [laughs]?
So, it, it was pretty simple basically it was fantastic that I had somebody like that that I could rely on. Especially seeing as she hadn’t known me before I was ill and, you know, put no, put no pressure on me really, it was great.
Said that her boyfriend is one of her closest friends, together with a girlfriend who also had...
Said that her boyfriend is one of her closest friends, together with a girlfriend who also had...
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I don't really have too many friends. I have - like one of my friends - I don't know - I consider myself close to her, but and she was one of my friends when I was younger. She was like my best friend, all the way through high school, but she's like teaching English in Japan now, so I don't - obviously I don't see her too much. But she's one of my closest friends. One of my - a good friends of mine is another one that I was in school with. She was quite a good friend at school. But she had a baby, so she has different interests again. I have my boyfriend who I'm really close to. He's a good friend, obviously. But...
How long have you been together?
We've only been together for, probably like five months. I was with - before this boyfriend I was with someone who I went to school with, and you know, after I had chemotherapy we started dating. And I don't know, because again he'd kind of, known me before, but I'm a completely - really different person than I was in school. It does change you like that. But like at university I'm still kind of nervous of going out and, you know, because people still don't really understand. And they'll you know, walk places, and I'm too kind of embarrassed to say I can't walk. You know I can't walk very far. I'm quite good friends with a girl I met through the house we set up in London, the Sergeant. And I didn't know but she's started studying at Manchester at the same time I did, and I just met her in the street one day, and we keep in touch now. You know, we'll go out, and she'll say to me, "Are you sure you're all right? We'll get a taxi. The bus is just here, we don't have to walk if you don't want. We can stop, if you want we can sit down". And she had a completely different cancer to mine. I don't know what she had, but hers - she wasn't disabled in anyway. I think she still gets tired, the normal cancer after effects, but she wasn't physically disabled but yeah, she's really, really good, because like, being around her, she can say - and she's a bit more bossy than I am, so she'll kind of say, "Look no. We can't do that". So'
And with your boyfriend, when you just started - how did you explain to him your experience?
I don't know. I just kind of said to him that I should probably tell you I didn't kind of know how he's react. I don't know whether I expected him to react negatively or not but I knew that I had to kind of tell him, and that I had to tell him about the disability and about not being able to have children, kind of all that stuff, because I wanted to get it all out straight away. I didn't want anything to go any further and then have to tell him, you know, stuff like that, but I think he actually thinks more of me, that he knows what I've been through, and things like that.
Last reviewed December 2017.
Last updated November 2014.
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