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Living with and beyond cancer

Reflections on the cancer experience

People we spoke to whose cancer had been cured or was in remission, talked about the extent to which they felt able to put the experience behind them and about what had helped them to overcome the illness. While some said their cancer was always in the back of their mind, or that they were sometimes reminded of it, others said they rarely thought about it and their life had moved on (see also ‘Facing the future). It was common for the illness to be referred to as merely 'an episode' in their life, a bad time, a blip, or a page in the book of life, and it was important to live your life and not let it ruin the rest of your life. Some said it was hard to believe now that it had happened to them and that time was a great healer. People who were still attending hospital check-ups said they felt odd waiting among patients who were still having cancer treatment.
 

Alan says that his colorectal cancer experience is just a page in the book of life; he has turned...

Alan says that his colorectal cancer experience is just a page in the book of life; he has turned...

Age at interview: 60
Sex: Male
Age at diagnosis: 53
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And some people say that how they feel now is bound up really in having been through cancer and things like that. Do you feel that having had cancer defines part of you or…?
 
What do you…?
 
Sort of a, you know, having had cancer stays with them a long time and it becomes part of who they are and their identity.
 
Yeah, I suppose so. I think once you’ve sort of, yeah, you do, you feel it’s part of your life. I think probably it’s the same with a heart attack. You think, you know, “I’ve had a heart attack”. I suppose it’s like what you said, “Does it worry you?” Doesn’t worry you, it’s in the archives. It’s there but it doesn’t worry you, but you think, yeah, God, I’ve had cancer. I’m going to be saying, “Yeah, I had cancer thirty years ago”, but in fact, it will always be there.
 
Always be there.
 
I just think it’s like a childhood memory. I was as deaf as a post when I was kid, and it’s always there. I always remember being deaf. So yeah, I think it’s just part of the, just a, life is, honestly, life is an atlas of dreams and you just turn one page and something else happens. It’s like a book. And having cancer is just a page in the book of life. I’ve turned that page over and I’m moving on. I got divorced. I turn another page over, you know, and I think it, but those pages will always be there, so yes, it’s part of your life.
 
It’s part of your book of life. 
 

Pauline wishes she hadn’t had colorectal cancer but feels she was lucky to survive and has put it...

Pauline wishes she hadn’t had colorectal cancer but feels she was lucky to survive and has put it...

Age at interview: 70
Sex: Female
Age at diagnosis: 61
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So do you have any messages or any advice to give people who are living past a cancer diagnosis?
 
Forget it. Forget it. It’s happened. You’re better. Get on with it, you know. But be aware of it. Yeah, it’s just something that’s happened, you know, I don’t dwell on it. I wish it hadn’t happened. It took five years of your life, you know, at a time when you’re getting a bit near the end, but you only have to look at the children and, you know, that you see with cancer and you know that you’ve been very lucky. I mean it must be awful for parents of children as well. You know, there are a lot worse than me. So, you know, as I say, I’ve been lucky, you know. If that’s all I get then I’ve had a good healthy life. 
Support from other people had been important in helping many through their illness and treatment. Family, friends, neighbours, colleagues and health professionals had all played their part. Some people had joined or started a local support group in order to share experiences with others who had been through a similar experience (see also ‘Raising awareness and supporting others’). Not everyone found this helpful, and others said they hadn’t wanted to socialise with other people with cancer, so had declined to join a group. Some said they had felt no need for this kind of support or that the group met at an inconvenient time or place for them. Others hadn’t wanted to disclose their private business with strangers or had been wary of becoming emotionally drained by learning about other people’s problems at a time when they needed to focus on their own needs. Many people had felt well supported but others said they’d had no-one to talk to at crucial times in their illness. One woman said she had found it helpful to contact a national support organisation after her breast cancer operation.
 

Albert says that having support during his prostate cancer from people in his local community...

Albert says that having support during his prostate cancer from people in his local community...

Age at interview: 92
Sex: Male
Age at diagnosis: 86
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It seems that there is a lot of support in the village.
 
Wife' Oh, yes.
 
Albert' Very much so. I’ve never been in a village where people have been so supportive and willing to help when it’s needed. It’s quite incredible. It gives you a great sense of security, you know, knowing that people do care, and it’s a characteristic, I think, of this village that it’s a caring community, and yes, it’d probably be different if you were amongst people that didn’t care, you know, living in London, we lived in London at one time and you never knew your next door neighbour. People didn’t have that community spirit that we feel we’ve got in this village.
 

Pauline had been supported by a nurse and hadn’t felt the need to join a support group, although...

Pauline had been supported by a nurse and hadn’t felt the need to join a support group, although...

Age at interview: 70
Sex: Female
Age at diagnosis: 61
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Did you ever, or were you ever, given any information about things like support groups, or did you ever think that that was something you might want to use or…?
 
No, because most probably because I didn’t need it. If I’d have said to somebody I needed it then I most probably would have been. I did say I’d like to talk to someone who’d had it, and nothing came from that, and that might have been helpful because there’s nothing like getting it from the horse’s mouth, is there. That’s why I said when my friend recently, her husband had the problem, I felt they might need that, you know, so… But because I didn’t, I just heard through the grapevine that this chap was down the pub and he’d had it and he was out and while I was still ill, you know, still not able to get out and about. Yeah, so no, there were no, I mean this girl was very good that I had anyway, the nurse, she was enough support for me, but she hadn’t had cancer, you know. I might have felt a bit happier, but I got over it. I didn’t need it.
 

Christine attended a local breast cancer support group for a while after her treatment; it was...

Christine attended a local breast cancer support group for a while after her treatment; it was...

Age at interview: 61
Sex: Female
Age at diagnosis: 42
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I did, after I had all my treatments, join a breast cancer support group at [local Hospital] and I used to go down there with other ladies, and they used to have, you know, treatment people come, you know, Alexander technique. I can’t remember what the little flower things are, different flowers and reflexology and things like that. So that was good and, as I say, everybody was together. But it was also quite depressing in that some of them didn’t, who went to that group, did die, so it was depressing from, you know, but you can’t just live with survivors all your life, can you, if you see what I mean. You have to meet the ones who don’t survive as well so, yeah, but that, yeah, well, that helped at the time and then I sort of felt I outgrew it really, in a way.
 
So when did you stop going to that?
 
I can’t remember how long I went to it, quite a while. I got friendly with a lady and we used to go together. But no, I probably, you know, the children took most of my time really, and the ice skating and things like that, because we were going on cross countries, doing that, so it took up a lot of our time.
Religious faith had been another source of support for some people. They felt a sense of peace resulting from a belief that a higher power was watching over them, and because people in their religious community were praying for them. Some had felt certain that God would not let them die, while others felt a sense of acceptance whatever the outcome of the illness.
 

His Christian faith was strengthened through having lymphoma because he had to trust in God more...

His Christian faith was strengthened through having lymphoma because he had to trust in God more...

Age at interview: 53
Sex: Male
Age at diagnosis: 47
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I think coming to terms with cancer is one of life’s most traumatic experiences, and I just want to share a bit of how I coped personally and how the family coped. Our family are all Christians, we go to a local Baptist church and our faith was a really strong support for us at this time, and the prayers of many people in the church. I found my faith actually strengthened through having the cancer, I found myself having to really trust God as I hadn’t had to before when life was comfortable. And I found God to be faithful to me during this time and there were some verses from the bible that really help me that talk about all the things working together for good, for those who love God and that God being a rock of refuge that we can trust in. So through all of this experience I found myself very much kept in peace and there were very few times when I found myself to be unduly anxious, and I attribute this very much to the prayers of the people at church and my family and they were really a great support to me. 

It was common for people to say that being positive had helped them to overcome their cancer. Positive thinking means different things to different people. For some it was to do with a determination to fight the cancer or deal with it and get on with life, while for others it meant looking for the positive aspects of the situation and being thankful for what they had in life. Another way was to remain cheerful and optimistic. Several said they tried not to take the cancer too seriously; some even used humour when talking about it to others. Using humour can help people to overcome any embarrassment when talking about parts of their body.
 

Brenda had been determined to survive her colorectal cancer in order to see her granddaughter...

Brenda had been determined to survive her colorectal cancer in order to see her granddaughter...

Age at interview: 78
Sex: Female
Age at diagnosis: 61
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So when you say that you were determined, did you feel that you wanted to get things back to normal in sort of…
 
Yes, yes. Like I said, I was determined to see my granddaughter grow up. I suppose it was an awful lot of will power at times, so I wasn’t going to give in to anything. [mm]
 
So just…
 
No, I think you’ve got to, if you’ve had cancer you’ve got to be positive and just think, you know, “That’s it but I’m fine. I’m here. I’m alive, so I’ll get on with my life”.
 
[mm] Yeah.
 
And do you think that having a positive mind frame helped you through the whole experience?
 
Yes. Yes, I’m sure it would. [mm] Yes, so yeah, I don’t let things get on top of me.
 

He explains that using humour with his friends and colleagues helped him to cope with having...

He explains that using humour with his friends and colleagues helped him to cope with having...

Age at interview: 48
Sex: Male
Age at diagnosis: 34
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I have a very nice group of friends, all of whom delight in taking the piss, and so as a result I remember in the hospital the cards I was getting. And one stands out to this very day and I still have it, and it was just simply entitled on the front, 'Sorry for the loss of your loved one', and so you can see what sort of friends I had.
 
How did you feel when you got cards like that?
 
Oh I laughed, but that's me you see.
 
Did you genuinely laugh?
 
Absolutely, genuinely laughed.
 
So it didn't upset you when you say they took the piss?
 
Not at all, not at all, because that's the way that I cope really. I like to think I've got a pretty good sense of humour and it has seen me through many, many different situations. And this was certainly one that helped, I mean it really did. When I think of the absolute manic cards I had and people just didn't want to take it seriously. I think they were probably trying to jolly me along a bit in case I was going to dip into some sort of depression, but I didn't. And whether it was me or a combination of me and my friends being, you know, upbeat, I really don't know, but it worked.
 
So you felt the humour was actually helpful?
 
Definitely, absolutely definitely, I couldn't take it seriously. I mean in later days, you know, when I was in a work situation, perhaps able to say something to a colleague when it was appropriate, I mean I wouldn’t go around saying, "Hello, I've had testicular cancer", but when it came up I would talk about it. And you could see them formulating a question in their minds, and a lot of people don't know how to take it when you say, "Oh yes I've dealt with cancer". And usually the first question was, "Oh where did you have it?" And my glib answer was always, "Brighton", so, and that always broke the ice. So, and that I still use that line today, I know, but it's, you see that's the humour coming through again and that most definitely has helped me and still helps me. So…
 
Oh that's really good.
 

Yeah I think so, and I think it's important, and I know, I don't want to trivialize, and I don't want to take it into a different sphere, and I know people deal with things in a different way. Some people might be absolutely horrified that I'm sitting here telling you that I laughed about it, but I truly believe that that actually helped, so I need to tell you that I laughed about it. 

Some people feel that adopting a positive attitude, rather than feeling sad or having negative thoughts, can help recovery or even prevent the cancer from coming back. Many factors influence the development of cancer and there is so far no evidence that positive thinking can alter its course, although research continues. Some people pointed out that no-one can be positive all the time, and most people living with cancer will have times when they feel tired, anxious, depressed or angry; people should therefore not be pressurised to be positive because they might feel a failure if they do not succeed or if they die from their cancer.
 

Louise believes that being upbeat about your cancer helps people around you to cope, which in...

Louise believes that being upbeat about your cancer helps people around you to cope, which in...

Age at interview: 59
Sex: Female
Age at diagnosis: 52
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Yeah, no, I mean I suppose on this sort of trying to be upbeat, if you are upbeat about it helps you because people are less like, if you’re sort of terribly depressed and talking about your fear of dying and so on, you’ll make other people feel afraid, and a lot of people will probably avoid you. Whereas if you are upbeat and positive then people will more likely want to be with you and then that helps you even further. But you can’t tell somebody to be positive because they either are or they’re aren’t, and if they aren’t then they need their negative feelings addressed.
 
They need to be able to talk about that with somebody, and the last thing they need to hear is to be told they should be being positive, being made to feel they’re not behaving in the way they should do is, do you know what I mean?
 
Because having fear and being negative is obviously a very natural…
 
Natural, yeah, yeah.
 
…natural thing to feel.
 
Yeah.
 
Yeah.
 
Yeah, and people need to be able to express that. So…
 
And that’s interesting in a sense that, you know, you don’t have to feel pressured to feel positive because I think a lot of people talk about, you know, being positive pulls you through and things, and it’s not necessarily that. It’s just…
 
Well, if it’s coming from them that’s fine. You know, if they’re having experiences and it’s made and they’re looking, another woman I know, who had breast cancer, her cancer was discovered through just a regular check-up, and her attitude was that she was really lucky that she lives in a country where this is done for free and it was discovered. But other women will take the attitude, “This is awful. Why has this happened to me? Blah, blah, blah, blah”. And you can’t, so if the woman herself through her own experiences is considering herself to be lucky, well, that’s great. But if a woman through her own experiences isn’t feeling that and she’s feeling frightened of what’s she’s going to go through, frightened that her partner is not going to find her attractive any more, frightened about the repercussions from work, frightened about dying, frightened about the treatment, then if you say to her, “Well, try and be positive”, she’s going to think, “Well, what’s to be positive”, and it’s just going to make her feel as though she’s failing, you know, and it’s just going to add to her problems. Do you see what I mean?
How long it takes people to recover from cancer depends on the type of cancer and the treatments they had. While some people were able to return to normal life quite quickly, others found it took a long time to recover fully.
 

Pauline hadn’t realised how ill her colorectal cancer treatment had made her until 2-3 years...

Pauline hadn’t realised how ill her colorectal cancer treatment had made her until 2-3 years...

Age at interview: 70
Sex: Female
Age at diagnosis: 61
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Well, I know that every day I would think, you know, when I was getting better and getting over it, I would think, “Oh, I’m so much better now”. And then six months later I’d suddenly notice and realise, “I’m so much better than I was six months ago”. And it takes quite a long time after a couple of operations like that, and all that chemotherapy, to get over it, but you don’t realise it. Possibly if I was a younger person I would have noticed it, but you do tend to put it down to your age, you know. But the girls I go swimming with now they’ve all got something wrong with them and I say, “I think I’m the only one here that’s healthy”, you know. But I just, it’s an attitude, isn’t it.
 
I think a lot of these things are attitude, you know.
 
So you now consider yourself healthy now even after having had…
 
Yeah.
 
Yeah.
 
Yeah and my husband, I mean I started going out, you know, to walk and they told me not to drive for six months etcetera. We’d go to the supermarket to get the groceries. I’d say, “Oh, I’ll come with you”. And I called it my zimmer frame but I used to lean on the trolley, but I could only get from the car park to the shop, you know, then I’d have to go back and wait in the car. And then I could get from the car park to the grocery bit, the greengrocery, you know, and then I could get from the car park, and gradually you’d push yourself around, you know, and make yourself. There were times when I thought, “I could really do with a disabled sticker.” But it’s a good job I didn’t have one because it made me get on with it, you know.
 
And I had to struggle to get here and there and, you know, so no, you don’t realise how ill you are actually until two or three years later, or how ill you’ve been, you know, and even then, as I say, I feel younger now than I did three or four years ago, because I didn’t realise how ill I’d been and how it had knocked me for six.
 
You put it down to your old age, as I say. You think, “Well, I can’t expect”. And then I think, I did used to look at people of seventy and think, “Well, they’re jumping around and I’m not”. And seventy-five, how they’d got all this energy, you know, but now I’m doing that as well. 
People often felt proud of the way they had coped with having cancer and glad that they had survived. Some believed they had coped well because previous challenging life experiences had made them resilient. Others said they had learned that cancer wasn’t necessarily a death sentence and they liked to set an example to others that there could be life after cancer. Many went on to provide support to other people going through cancer treatment (see ‘Raising awareness and supporting others’).
However, some people occasionally felt guilty that they had done well or survived their cancer when other people they knew hadn't.
 

She has never questioned why she developed ovarian cancer but often feels guilty that she has...

She has never questioned why she developed ovarian cancer but often feels guilty that she has...

Age at interview: 48
Sex: Female
Age at diagnosis: 41
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 And as time’s gone on I’ve felt incredibly guilty why, not why did I have cancer, because I’ve never been angry about it, or I’ve never asked why I’ve got it, but I do very often say, ‘Why am I OK and others aren’t?’, and it’s like survivor’s guilt really, I just spend a long time thinking why have I made it, and I can’t find any rhyme or reason, I’m just very fortunate to be where I am.



Last reviewed October 2018.


 


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