Living with and beyond cancer
Sense of identity or self-image
Having and surviving cancer can affect how some people feel about themselves as a person or how they think others see them. This may or may not be related to how they feel about bodily changes caused by cancer or its treatment (see ‘Body image’).
For some people an important aspect of their self-image is their ability to carry out their usual roles in life. Some men we spoke to suggested that having cancer and being left less fit or weaker than before had made them feel less of a man because they believed their masculine image included being seen as fit and strong and able to provide for their family. Ian feels that his past identity was bound up with his occupation as a police officer and is glad that since his leukaemia he has moved to a different part of the country where people didn’t know him in that role. For some people, being able to resume their usual sporting activities was very important in restoring their self-image. Although these aspects of self-image may apply equally to men and women, none of the women we spoke to mentioned them.
Because of his prior beliefs he feels ashamed at having had lung cancer; he thinks he should have been tougher.
Because of his prior beliefs he feels ashamed at having had lung cancer; he thinks he should have been tougher.
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Actually the thing that I felt was shame. I mean people would say guilt but I think there’s a fine line between guilt and shame.
You felt shame?
Shame, for me I was ashamed that I had cancer, that I presumed I had cancer, yeah. Anyway…
But why did you feel it was something shameful?
Because I was a man, because I, as a young man I’d boxed, I’d run marathons, I’d played rugby, at the time I was taken ill I was in an advanced swimming club and I just felt, I was at that time in work, you know, I was the provider and I just felt ashamed that this disease had come to me. I found that very hard to cope with; even now after all this time. Anyway…
Sorry, at the time you were taken ill you were, did you say a provider, did you say?
Yeah I was the provider, I was the one working, you know, providing for my kids and wife, you know. And I suppose it was that really, but yeah, shame, yeah.
I was just ashamed of having cancer, I really was, you know. Still am!
You still are?
Yeah, yeah, yeah. I suppose I just, you know, really wish it would go away forever, although I’ve been discharged and that, you know. It’s a stigma, isn’t it, you know.
You still think there’s stigma even today?
Oh yeah, yeah, yeah. I don’t think you, from the moment you have cancer you’re a cancer survivor, and that stays with you right till, the rest of your life really. You know, I’m not a victim because I’m here.
What’s made you feel that?
As I say, I think it’s because I feel I should have been tougher than that, you know. I shouldn’t have got cancer, you know. Like I said, it might have been something I’d done, maybe my lifestyle, you know, something I’d done wrong, I don’t know, or something I’d tried to do right, because I kept myself fit.
And you’re not a smoker.
No and I never smoked, no. On the contrary really, so I don’t know, you know.
Has anybody ever made you feel that by saying anything?
No. my own interpretation of people with cancer, long before I had it, if somebody said they had cancer I would look at them with sympathy and, you know, ‘Oh you poor soul’, you know, maybe that made me, suddenly I was in that position, they were looking at me. I was always aware of that when it first got about that I had cancer, I called it the ‘leper syndrome’ in as much that people are looking at you, they’re aware, you do see them and they are talking about you, that you’ve got cancer and everything, you know, even though they don’t know your diagnosis and your prognosis, you know.
So you think that’s still the same today?
Yeah it definitely is the same today. I’m aware of myself doing it in some ways when I know someone has cancer, it’s very difficult, how do you cope with somebody else’s illness, you know, when it’s maybe a terminal illness especially.
Michael had been a keen runner before developing chronic lymphocytic leukaemia. Since being in remission he has returned to running and explains that this has been very important for his self-image.
Michael had been a keen runner before developing chronic lymphocytic leukaemia. Since being in remission he has returned to running and explains that this has been very important for his self-image.
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The other issue is about returning to, is about self-image and being diagnosed with the disease and how you can help repair it. And what was very important for me was to try and get back to the level of fitness that I had beforehand. And okay, I’ve got the disease, I may or might have it forever, it may well come back, but if I can do everything that I, you know, was able to do, albeit, you know, age is, takes its toll anyway. And for me what was very important was running, as I used to jog and run before. I’ve had to stop and intermittently start it again. And over the last year, yeah, it’s almost a year now, I’ve started to run regularly again and gradually got a bit faster and faster and felt fitter and fitter. And that has been very, very, very important to my sense of well-being and my self-image. And of course it’s not for everybody, I know that, but I think it is important to try and go back to all the things that you used to do and enjoy.
A man who had a lymphoma on his spine that caused temporary paralysis said that for a while his identity changed because he couldn’t walk and used a wheelchair. He was glad when he regained his mobility and no longer needed to ‘explain who I was through the illness’. He was also sad when told he could no longer donate blood.
A woman whose only treatment so far for chronic lymphocytic leukaemia had been oral chemotherapy said that having cancer made her feel no longer a whole person, and that this was not related to femininity. Some people were concerned that those with cancer should resist feeling that they are a victim or being treated as a victim by other people. While some people felt that having had cancer had not changed who they were, others felt it had become part of their identity.
The term ‘cancer survivor’ is often used to describe people who are living beyond a cancer diagnosis. While some people we spoke to identified with this term as an accurate description of themselves, many didn’t like it and said they would never use it to identify themselves, with the possible exception of when they were talking to other people in the same situation. Several explained that they didn’t want any kind of label that was associated with their cancer and just wanted to be treated normally by other people. Alan (Interview 33) said, “I don’t view myself purely in relation to cancer, so I think describing myself as a cancer survivor sort of identifies me in a way in which I don’t identify myself really”.
Carole had breast cancer 16 years ago and agrees that she is a 'cancer survivor' but says she would be unlikely to describe herself using that term.
Carole had breast cancer 16 years ago and agrees that she is a 'cancer survivor' but says she would be unlikely to describe herself using that term.
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And I know, I mean we’ve been talking about, you know, cancer survivors and, what do you think of that term and do you agree with that term of cancer survivors? Do you think it’s a good description of people living past?
Well, yes, it’s graphic. It’s to the point. I can’t think of anything to substitute but I as a cancer survivor, I think it’s, yeah, it’s a bit unique, so in that respect, yeah, I am, I’m a cancer survivor. Again, thankfully, but I do think it does probably make me a bit different in lots of ways, attitudes and yeah, I see what you mean about the words cancer survivor.
I hadn’t really, I don’t think I would say to anybody, “I’m a cancer survivor”. I think if somebody says it to me I’ll agree, “Yes, I am”. But I don’t think I’d actually use the words if I’m talking to other people. I just say, you know, “I’m fully recovered”. That’s all.
Olivia had breast cancer 17 years ago. While she identifies with the term 'cancer survivor' she feels no affinity with others who have survived cancer.
Olivia had breast cancer 17 years ago. While she identifies with the term 'cancer survivor' she feels no affinity with others who have survived cancer.
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One is, and this is a sort of a policy word. It’s a word used in research but in order to describe the population of people who are living past a cancer diagnosis, people use the term cancer survivor.
Yeah.
What do you think of that term? I mean do you think that that would apply to someone who’s been through something like you have?
Yes, we’ve had cancer but it hasn’t killed us. I mean, you know, you’ve only got to look at the dictionary. That is the word, cancer survivor. Yes, how could anybody object to that, or think it doesn’t say what it, mean what it says.
I think sometimes it a connotation, you know. Some people feel that that defines them and it’s not just, you know, a description but it means something to them, so people club together and say, “We’re cancer survivors. We beat it. We’ve done it”.
No, I don’t have the slightest desire to join a club for which the membership, the essential, I don’t know - I know what I mean but I can’t think of the word; oh, what is the word? - the sort of priority is that you’ve survived cancer. No, I mean I don’t feel a particular affinity with other people who’ve survived cancer, but the fact is to say that somebody is a cancer survivor is true. It’s not all of them. You could describe them as somebody with short legs and red hair and that would be true too. But it is part of, it’s true.
I have no objection to that at all.
Okay.
As long as I don’t have to go to a party where everybody is one.
Fair enough.
And they all want to talk about it.
[laughs]
I think that would be a very dull party.
Some people said that using the term ‘cancer survivor’ implied a sense of control over the condition, whereas they believed that whether or not they survived the cancer was down to luck or to good medical care. Vic, who had colorectal cancer 7 years ago, said, “It is a matter of luck whether you succeed in beating it or not.”
Sandra had breast cancer 7 years ago. She doesn't like the term 'cancer survivor' or the implication that people can successfully 'battle' or 'beat' cancer.
Sandra had breast cancer 7 years ago. She doesn't like the term 'cancer survivor' or the implication that people can successfully 'battle' or 'beat' cancer.
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Some people use the term cancer survivors to talk about people who’ve lived a long time after diagnosis. How do you feel about that term? Do you think that that applies to you?
No. And I don’t like the term, you know, when you read in the paper, “She fought cancer”. She didn’t fight it. I don’t like the term. “This is a cancer battle and I’m determined to do this fifteen mile walk”. And blah de blah de blah. Because at the end of the day, you’ve got cancer. You live with it or you die with it. You can’t fight it.
You can’t battle it. And when people say, “It’s all about your sense of fight”, it’s all about your sense of, “Well, I’m determined I’m going to beat this”, what they really mean is a positive attitude will be very helpful, but I don’t think they should put it in terms of a battle or a fight, because what about the people that don’t come through it? Were they just weak willed and they lost the battle? Of course they weren’t.
Claire had colorectal cancer 7 years ago and Hodgkin's lymphoma before that. She believes that you cannot choose to survive or not and that her survival is due to good medical care.
Claire had colorectal cancer 7 years ago and Hodgkin's lymphoma before that. She believes that you cannot choose to survive or not and that her survival is due to good medical care.
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There’s a term that some people use and it’s, you’ve probably heard it but it’s this term cancer survivor. What do you think of that term? I mean would you want that used to describe your situation?
It sounds like you can either choose to survive or you can’t, and I don’t know necessarily is that right? I think you can help yourself. It’s like I was saying before about being this positive about looking after yourself, about how you eat, how you keep yourself well etcetera. That can definitely I think help not only your physical, but also your outlook on life etcetera. So possibly survival from that point of view is a good term. I don’t know whether from a medical point of view, I don’t know, are you in the hands of the people that are dealing with you? Because I used to feel that, you know, I was in the hands of a good surgeon. I was in the hands of a good doctor and I had a good team of people around me etcetera.
Several felt that their illness had not been severe enough for them to warrant the term ‘survivor’ and that other types of cancer, or other life experiences altogether, could be tougher. Some people preferred to refer to themselves as someone who had survived or recovered from cancer rather than a ‘cancer survivor’. Others thought that it was inappropriate to refer to themselves as a ‘cancer survivor’ because they couldn’t be sure that the disease wouldn’t recur or because they were living with an incurable, chronic form of cancer such as chronic leukaemia or low-grade lymphoma.
Jennie had colorectal cancer 22 years ago and believes that there are worse conditions to have where the chance of survival is less, so doesn't refer to herself as a 'cancer survivor'.
Jennie had colorectal cancer 22 years ago and believes that there are worse conditions to have where the chance of survival is less, so doesn't refer to herself as a 'cancer survivor'.
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Some people use the term cancer survivors to talk about people who are living past a cancer diagnosis. How do you feel about that and do you think that that’s accurate to describe you as a cancer survivor? Do you like the term? Do you?
I’ve never ever, I don’t, there’s something about it I don’t like, because everybody survives something. And I think that there are worse things to have than cancer. I really do. At least with, certainly with the cancers I’ve had, you have a fighting chance of survival, and some things you don’t have any chance or you just deteriorate. I mean seeing my sister with MS just going steadily downhill, that’s much worse, and having a stroke, and I think people often don’t realise that if you don’t get treatment very quickly with stroke then you can get these awful paralysed limbs where they distort and they are painful for people. And they have such a job to do anything for themselves and that is worse, that is much worse. So I never think about myself as a cancer survivor. It sounds a bit, I think it’s a bit pretentious. I don’t, I’m not quite sure if I mean, yeah, I don’t mean pretentious but I don’t like the term. I don’t like labelling myself that. No, I’m just Jen who had cancer. That’s more it.
Marion doesn't describe herself as a 'cancer survivor' because she cannot be certain that her colorectal cancer won't recur.
Marion doesn't describe herself as a 'cancer survivor' because she cannot be certain that her colorectal cancer won't recur.
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People sometimes use this phrase cancer survivor to describe people who have lived past a cancer diagnosis. What do you feel about that? I mean do you think that that applies to you?
What, that I’m a survivor from it?
If someone said, “You’re a cancer survivor.” How does that make you feel, or do you feel that that’s not really your favourite term for that?
Well, no because you never know if it might recur again. I wouldn’t like to say, “Well, I’m a cancer survivor and I’ll never have it again”, because you could quite easily, or you could have it, it could come somewhere else in the body. I mean that’s one of the fears that I think when you’ve had something like that, that you think, I mean I never thought I’d have it, but I mean when you have had it I would never like to say to people, “Well, I’ll never have it again”, because you never know, it could recur again in another form, another way, you know, another part of the body. I haven’t, touch wood, I hope I don’t, but I mean you can’t say that.
So the term cancer survivor doesn’t really cover that because it’s something that suggests that’s sort of in the past?
Well, I suppose, yes. I mean I can say, “I’ve survived bowel cancer”, but I always keep my fingers crossed that I’m not saying something out of place because next week I might go down, you know. And then I should bite my tongue and say, “I should never ever have said that”. The times we’ve done that and then somebody, you know, goes down with it. You can say somebody is so healthy and well and then, or they can say they’re so healthy and well and they never have anything and then the next thing you hear they’ve got an awful illness and you think, “Oh, I wish they’d never said that”.
Not to tempt fate.
No, yes, that’s right, not to tempt fate. You’re very right there.
Last reviewed October 2018.
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