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Living with and beyond cancer

Facing the future

Surviving cancer can have a profound effect on the way that people look towards the future. Many will take an optimistic view that all will be well, while others may feel that a recurrence of their cancer is likely and that they should plan for the end of their life. Of course things are not that clear cut, and many people we spoke to expressed mixed feelings about what the future might hold.
 
It was common for people who had been in remission a long time with no problems related to their cancer to feel very positive about the future. Claire had survived cancer twice and said she had a vision that she would still be alive aged 100. Some said that, although they had thought about their illness and the possibility of recurrence a lot at first, as time had passed they thought about it less and less. Some only thought about it when it came up in conversation or in the media, they went for a check-up, or they experienced symptoms which they thought might suggest a return of the cancer.
 

Michael is feeling optimistic about his future having probably been cured of chronic lymphocytic...

Michael is feeling optimistic about his future having probably been cured of chronic lymphocytic...

Age at interview: 60
Sex: Male
Age at diagnosis: 54
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How do you feel about your future?
 
Well pretty optimistic actually. There’s always, your time horizons start to change. I mean when you’ve got the disease, when you’re going through the treatment you’re just looking for the next day, when you’re in intensive care you’re looking for the next hour. But your time horizons start to change. And people always say to me, “Surely having gone through this you’re not phased by anything anymore, you know, nothing can matter because you’re alive?”, and all the rest of it. And yes, that’s true when you reflect on it, but I still get irritable and I still feel, you know, I still get certain things completely out of proportion, so I don’t know. But another, and the other thing as well of course, as you, as the disease recedes and becomes less part of your life, your horizons start to, you know, you start to think about, “Well, I’m going to be around for a few more years now”, so, you know, you don’t, you can’t live for the day or, not that you ever really do, but your horizons start to change as well, and you start to think about a future. I’m optimistic. I mean part of me thinks that, you know, “I’ve come through it all so I must have some, you know, some strength”. 

 

 

At first she couldn’t go to sleep without feeling for a recurrence of her ovarian cancer but then...

At first she couldn’t go to sleep without feeling for a recurrence of her ovarian cancer but then...

Age at interview: 58
Sex: Female
Age at diagnosis: 44
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There was always that fear, and for ages and ages after I could not go to sleep without putting my hands on my tummy to make sure there wasn’t a lump there. And I used to think, “I’m not going to do it tonight. I’m not going to do it. It’s ridiculous, you’ve got to get over this”. But I couldn’t. I could not go to sleep for ages and ages, and then suddenly I realised I hadn’t done it. So I’d obviously sort of got through that, but it was stupid, and for ages after, you know, you sort of think every little pain, you sort of think, “Oh, is this something that I need to worry about?” And, you know, I still think that at the back of your mind, whenever there’s something wrong, you do wonder, although, touch wood, you know, I feel great and I have been great and, but there’s never a day goes by without you don’t think how lucky you are. It’s a leveller. 
 
Tell me about how you view you future. You’ve survived 15 years already and you’re obviously very well. What’s your outlook?
 
I’m going to stay well. Obviously as you get older you realise that chances are you’re going to end up with some problems, but, no, I have very optimistic future, outlook for my future. I feel well. I’m fairly active. I enjoy life. Oddly enough, I do enjoy my work. I look after a horse a couple of nights a week and go and see him and muck out and he’s not very well but, it’s fine. Enjoy my family, my nephews and nieces and doing things and going places and, yeah, very, very optimistic.
 

Claire doesn’t worry about her colorectal cancer on a day-to-day basis except when she...

Claire doesn’t worry about her colorectal cancer on a day-to-day basis except when she...

Age at interview: 46
Sex: Female
Age at diagnosis: 16
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Okay, and just in terms of whether you think about cancer. Do you ever worry about recurrences? I mean is that something that bothers you on a day-to-day basis?
 
Sometimes I do, yes, if I have got some twinges in places that I think either shouldn’t be there or are related to scars or tissue that I think is where they had operations before, I’ll think, “Is it coming back? Isn’t it?” I’ll just sort of monitor it for a while. I’ll keep an eye on it. If it gets painful, or if it gets bigger, or if it’s something that’s there after a couple of weeks and I am still noticing it. Because often these things will come along for a day or two and then you forget about it, and then you think, “Oh, well, that’s wasn’t that, was it. I’ve obviously overdone it or whatever”. If it’s still there after a week or two weeks and I’m moaning about it and my partner says, “Are you still moaning about that? You said that about a week ago about this, that and the other”. Then I think, “Perhaps I ought to go and see somebody”. 
 
And that’s when I’ll go and see somebody about it, and invariably when I’ve been, luckily, so far it’s just turned out to be nothing, or they’ve just said, you know, “It’s most probably a bit of scar tissue”. You know, it does move about apparently, or it can, you know, as you change, you know, as you get older your body shape changes etcetera, it could be just it moving about. If it’s in the way they’re quite happy to open me up and move it about but I think I’d rather just leave it and just get on with it really. So no, apart from that, that’s the only time I tend to think about it. I don’t tend to on a day-to-day basis. It doesn’t worry me from that point of view.
Having check-ups or attending for routine screening after having breast cancer could make people anxious until they were reassured that everything was fine. Experiencing symptoms can also be worrying and many people had taken their concerns to a doctor and asked for tests. Although it was easy to become overly worried about bodily changes, several people said they had been grateful that the health professionals had taken their concerns seriously because of their medical history, and they had felt reassured by having tests done to rule out a recurrence of their cancer. Norma had tests after experiencing bowel symptoms but was never told the results so had to assume that her colorectal cancer had not returned. Not everyone automatically worried that their cancer had recurred when they developed symptoms; some attributed them to other health issues.
 

Whenever Dorothy experiences symptoms she worries that her breast cancer has returned or spread...

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Whenever Dorothy experiences symptoms she worries that her breast cancer has returned or spread...

Age at interview: 74
Sex: Female
Age at diagnosis: 62
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If I get something funny happening to me then the first thing I think about, “Is it back?” And you know so many people that it has come back on, so that there isn’t something you can sort of lean on. I have been back to the hospital once because I thought something was amiss but I was all cleared. But that was so important to be able to go back and say, “I don’t know. Is it?”, and have them take you seriously and go through it all again was something that was really, really valuable. And also everybody else says, “Well, you wouldn’t have the energy you’ve got if, you know, if there was something happening”. That doesn’t help at three o’clock in the morning, and it’s those sort of times that it sort of hits hard. 
 
What one’s concerned about is not so much is that the breast cancer should be back but that it’s travelled somewhere else. And it can make mountains out of molehills. I mean this sore ankle I had, you know, this, that they decided in the end was phlebitis, you know. I thought I’d got bone cancer before I went in for surgery for that, not seriously so, but, you know, it crosses your mind. It might not have crossed my mind if I’d never had breast cancer, but it’s hard to separate one thing from the other. 
In general, the longer someone has been in remission from cancer the less likely it is to recur, but there are no guarantees and recurrences can occur after many years, sometimes in a different part of the body. Many people we spoke to said that although they understood that recurrence was possible they didn't worry about it. Some said that worrying could have a negative impact on their life but others said they had more pressing health issues to worry about. Some hoped that by keeping fit and healthy or reducing stress they might reduce the risk of recurrence. While some wanted to know how likely recurrence was, others preferred not to.
 

Thomas doesn’t worry about his colorectal cancer coming back but he has an irregular heart beat...

Thomas doesn’t worry about his colorectal cancer coming back but he has an irregular heart beat...

Age at interview: 79
Sex: Male
Age at diagnosis: 69
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Do you ever worry about cancer coming back?
 
No, no, no I don’t sort of lose any sleep over it, or if it comes back it comes back, end of story. One of my worries, as I said, at the moment I have an irregular heartbeat, which is causing no problem, touch wood, but I’d rather I didn’t have it. I think the only thing that really worries me is the possibility of a stroke, that’s the one thing, so I have, I wouldn’t like to because it would mean I would lose my independence to a certain extent, which I wouldn’t want. I’m a, maybe I suppose I’m a loner. I like being by myself and so this way I don’t bother anybody but myself.
 
But no, cancer doesn’t worry me now.
Some took a pragmatic approach towards recurrence, saying that there was nothing they could do to influence whether it occurred and if it did they would deal with it; having been through cancer already most felt better prepared for coping with it again. In some types of cancer, recurrences can be successfully treated but in others they are more likely to lead ultimately to death. As a result some people had faith that they could survive a recurrence whereas others had resigned themselves to dying if the cancer recurred, especially if they were already elderly. 
 

He does not worry about whether his testicular cancer will recur because that is down to fate. He...

He does not worry about whether his testicular cancer will recur because that is down to fate. He...

Age at interview: 48
Sex: Male
Age at diagnosis: 34
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Has it affected your long-term view of the future all this?
 
Not at all, I'm a fatalist, an absolute and complete fatalist. Once, when I was a lot younger I was a flight attendant and I was strapped into my jump seat of that aircraft hurtling down the run way five times a day, and every time I used to think, oh this might be my last time. And that's the way that I thought about this, because I've had a few friends who've had cancers of different kinds, and some who are still with us and some who are not, and to be perfectly honest, truly I don't believe it should or could affect the way that you live your life. Because if you're having it treated and it's being treatment as in my case and everything has gone fine, you know you're clear, then you've just got to get on and live, you can't think this might happen again. If it does then it does, and that's fate. But you can't, I don't think, change the way that you lead your life because of this. I feel very strongly about that.

 

 

Olivia doesn’t worry about her breast cancer coming back because she is nearly 76 and knows she...

Olivia doesn’t worry about her breast cancer coming back because she is nearly 76 and knows she...

Age at interview: 75
Sex: Female
Age at diagnosis: 58
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So do you ever think about cancer coming back, or is it anything that you’ve ever thought about?
 
To me.
 
Yeah.
 
No, I mean I’ve got to die of something and I haven’t got the slightest idea what because, you know, God does not send you a first class letter telling you what of and when. And I know perfectly well it could be cancer, people have cancer coming back after twenty-five years, but after all, I’m going to be seventy-six next week. I can’t complain. I mean I was brought up that after you’d achieved three score years and ten the departure lounge was in sight. Don’t you think?
 
What, that sort of time when you were growing up that was what was expected or?
 
I don’t know if it was expected but it’s a biblical reference, three score years and ten. That’s considered to be a good age and, if your maths are up to anything, you’ll know that’s seventy. Well I’m seventy-six, so I think I’ve been very lucky.
Others took the view that their cancer would not recur or that they would die of something other than cancer. A woman who was taking Glivec for chronic myeloid leukaemia hoped to travel to Bali in the future to try managing her condition with meditation rather than drugs.
 

Jim is convinced that his prostate cancer has been cured and won't come back; he doesn't worry...

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Jim is convinced that his prostate cancer has been cured and won't come back; he doesn't worry...

Age at interview: 72
Sex: Male
Age at diagnosis: 64
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So you now go for these regular blood tests.
 
Aye.
 
And do you ever get worried maybe before the test, does it ever make you a bit anxious or worried…
 
No.
 
…about what the results are going to be?
 
No, not now. No, it’s all gone and I’m on the up, I’m on the up. I’m on the right way. No, it doesn’t worry me that sort of thing. I’ve got away from it. I’m cured, me, I’m cured. I’ll not get cancer again and I’m convinced of that. I’m happy I know when the results are going the right way for me then I’m happy.
 
No, it doesn’t bother me that, no. No, my bloods, I mean we’ve had a few blood tests now and they’ve all been good, so I’m quite happy about that. You know, it’s not, it doesn’t bother us.

 

By contrast, other people did worry about recurrence and some said the prospect frightened them. It was common for people to say that it was always at the back of their mind or they worried subconsciously all the time no matter how small the risk was. A woman who had ovarian cancer six years ago aged 35 said she worries more, not less, as time goes on. A woman who has survived seven years so far won’t allow herself to be lulled into a false sense of security because she knows that recurrence is almost inevitable with the type of lymphoma she has. Some women and men who had breast cancer said they were more likely to check themselves for lumps nowadays. Sandra was concerned about stopping hormone therapy after 5 years because this treatment aims to prevent recurrences.
 

He knows that his testicular cancer is very unlikely to come back but he can’t get out of his...

He knows that his testicular cancer is very unlikely to come back but he can’t get out of his...

Age at interview: 50
Sex: Male
Age at diagnosis: 44
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So how did that all affect your life in general?
 
Well I think a lot, you hear a lot of stories and how it affects you and it changes your life, but I think in my case I don't think it has. I think, you know, I don't think it's actually, I think until I actually finish and get discharged, I still think that there's a tendency that it might come back, and I think until I actually discharge myself I'm still going to think along those lines. I don't think I can, I can't get it out of my mind that it might come back.
 
Does that prey on your mind a lot?
 
It does yeah. And I know from all the reading and research that I've done that it shouldn't. I know that I'm sort of cured, basically, and I know that the chances of it coming back are minuscule. But I suppose I'm just, I've just always got that nagging feeling that it might.

 

 

She is afraid that if she tells her doctor about her symptoms they will find her cervical cancer...

She is afraid that if she tells her doctor about her symptoms they will find her cervical cancer...

Age at interview: 42
Sex: Female
Age at diagnosis: 36
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And you feel comfortable about it not coming back or do you have niggles?

 
I suppose I feel that's the way I'll die.
 
Do you?
 
Mm, sometimes I seem to have a phase, a lot of very, very bad headaches and migraines, and I'll try and talk to [son’s name] sometimes, he's the one that didn't want to know about it, and now with all this sort of toilet trouble I sort of say to him, "I don't know if I'm going to have a brain tumour and die or if I'll have bowel cancer or stomach cancer", but I said, "For goodness sake get them to open my head up and see what's giving me these headaches when I'm gone". He said, "Oh Mum", and he won’t talk to me, he gets cross with me. But I just sometimes need to talk to people about how I feel. I actually want to say, "Look, I feel really poorly and I don't know what's happening", but I'm sure I probably will die of cancer. That's just how I feel. I'm not being maudlin or anything, it's just that I think once you've got it, it's something my Father said years and years ago, you know, he'd watched so many old friends of his die and pop off, and he said something and it always stuck in my mind. He said, "Once you've got it mate you've always got it". And I suppose in the back of my mind I feel that it could easily come back in a different bit of me. And I think that's why I won't go to the doctor now. And I know my husband and all my family would all go, "Oh you've got to go, we don't want to lose you”, and that, but there comes a time you've had enough of pulling about, and I couldn't go through anything like the radiotherapy planning again. And this time, you know, I've got the greatest respect for doctors and nurses, and even if I work in the NHS, I would go leary with them this time if they were horrible to me.
 
Do you know why I think you should go back is because actually what you're saying doesn't make sense. Because you've had this, you're not going to have another one. I mean I'm not saying you couldn't, but it doesn't mean that you're going to.
 
It just frightens me what they might find.
 
Yes, but you might feel better to know that they haven't found anything.
 
Mm, and oh I don't know it's all very bizarre. I'm sort of muddled about it, I think if I've got it I've got it, it's going to kill me alright, but it's not just a question of going to the doctor and showing the doctor, they want to do things then and send you off for tests and stick tubes in places, no.
 
I know what you mean, mm.
 
If it was simply going to the doctor and they said, "Oh here's a tablet or a bottle of cream”, or something, that would be fine, great, brilliant. But, you know, it’s a bit private sometimes, and I know there are people that go to the doctor and start stripping off at the drop of a hat, and things you read about, but not all of us can do that.
People sometimes acknowledged that their future was uncertain either because of the possibility of recurrence or because they were living with chronic or advanced cancer and facing further treatment. Many said they couldn’t make long-term plans. Some thought they might die prematurely from their cancer but didn’t know how it would happen.
 

She knows that at some point there will be no more treatment she can have for her ovarian cancer...

She knows that at some point there will be no more treatment she can have for her ovarian cancer...

Age at interview: 66
Sex: Female
Age at diagnosis: 56
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So, you were telling me about how you view your future.
 
Yes I…
 
Was there anything further you wanted to say on that?
 
Yes, I just, I suppose I was saying about, you know, being hopeful that there would be more good times and that things would be kept under control for a while longer. I know logically that I've had much more than I should have had, and I know logically that, you know, we're going to come to the end at some stage of what it's going to be possible to do. But I know that I'll get, you know, good care and good treatment, and, as I said, I'm just hoping that the fact that my cancer is a slow growing one means that they will be able to keep it under control for some time and that there will be possibilities of more treatment in the future. And it's the only way I can look at it, because I've known from the beginning, despite what other people have said to me, that I wasn't in line for, or it was very unlikely that the cancer could be cured, that was never a scenario that was given me. And it's quite difficult. 

 

Dealing with a life threatening illness such as cancer can help people to come to terms with the reality that we all have to die sometime. Some people said it had led them to put their affairs in order, think about their preferred place of death, or plan their funeral. Others said that they were not afraid of death and felt comfortable talking about it. A man who’d had non-Hodgkin’s lymphoma for 13 years said that knowing your life expectancy is limited provides an opportunity to plan how you will spend your time and to tell your family how much you love them. A few knew they were likely to die within weeks or months and were making plans for the end of their life.
 

Having had breast cancer Frances has come to terms with the concept of death and can cope with it...

Having had breast cancer Frances has come to terms with the concept of death and can cope with it...

Age at interview: 64
Sex: Female
Age at diagnosis: 54
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Do you think that having had cancer has changed any of your views on life at all?

 
You value it certainly. You feel more prepared to die, I think. I’ve, you know, it gives you a feeling of life and death. When you don’t have anything like that you’re thinking of life, death doesn’t really play much part. You know it happens but you don’t really want to think about it. I don’t mind thinking about it now, so that’s a positive thing, and I can cope with it when other people die, better than I could. It’s always upsetting of course but I think this is the natural thing and maybe there’s something afterwards. Who knows? And I think cancer has made me feel that.
 
 

Knowing that she will soon die from her ovarian cancer she held a ‘pre-funeral’ party to mark...

Knowing that she will soon die from her ovarian cancer she held a ‘pre-funeral’ party to mark...

Age at interview: 57
Sex: Female
Age at diagnosis: 52
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Right. Since I’ve celebrated my five year anniversary, it seems to have been a milestone, and since then people have been coming to visit me more. The GP has started coming to the house just to call in to see how I am because she is concerned about the stage that I have reached. And the Macmillan nurses and the oncologist, they are all concerned about the stage I have reached as well. And in fact a few days ago I had to go onto the ward, I was captured by the oncologist, she wouldn’t let me go home because I was in denial about the pain that I was in. And so I was taken on the ward for several days and I’ve started on a regimen of morphine. So with this regimen of morphine comes a lot of mental pictures because people immediately think, ‘Right, you’re on morphine you must be getting nearer to the end’, I mean although it’s just being used as a pain control it’s obvious from the nurses reaction that that’s how they are treating me. But the only way I can treat it is by saying, ‘Okay I’ll let the morphine do the job that it’s got to do, but my job is different, my job is trying to leave memories for the rest of the family’.
 
We had the party and that was absolutely wonderful, it was on a beautiful day and lots of people were here and we had wonderful food and wonderful conversations, and as I pointed out on the day, this day was, I didn’t see why they should have a party at my funeral and I can’t see what’s going on, so it was a pre-funeral party that we could all enjoy and all enjoy each other’s company, so when the time does come for me to have a funeral, people will know each other and be able to talk to each other, and they will be able to have that memory. So that to me will be lovely that they have got that memory. 
 
And the other thing that I am trying to do is build memories in the garden, because nothing else needs doing to the house, so if we can build memories in little corners and plant different things in the garden, and people have got a birthday coming up, so they want to plant plants, we have had it designed, so they want to come and put plants in, so it becomes everybody’s little bit of space, so that’s at home I’m doing that. And also I want to go to places, go to places with different people in the family, go away and have special weekends, buy little bits to bring back to remind people of really, really nice times.
 
So this summer it’s a building memories summer, and I am looking forward to it, you know, I want to do as much as possible and cram in as many things as possible, because I feel over the last year, well, you know, areas have been neglected and peoples lives will go on when I’m not here.
Some people who had expected to die were now facing a longer life expectancy due to new treatments becoming available that had put them into remission. They said this had been difficult to come to terms with because they had to pick up aspects of everyday life that they thought they had dispensed with.
 

He was originally told he wouldn’t survive his lymphoma so stopped caring about his finances;...

He was originally told he wouldn’t survive his lymphoma so stopped caring about his finances;...

Age at interview: 49
Sex: Male
Age at diagnosis: 39
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Two years, from 1998 till 2000, I was told, “You’re not going to survive this, this is going to kill you, we cannot stop it with the technology and the medicines we have now”, so I felt sorry for my partner because I mean technically she was living with a dead man, and it didn’t matter what she did, in two years time she was going to be on her own. And luckily the something else popped up. But when I was told they’d got something else that could possibly help, it was kind of hard to say, it’s not, it wasn’t a let down, it was just something very different, it was harder to deal with than it was to deal with being told you’re going to die. Because when somebody tells you you’re going to die, your pension, bollocks to that, you don’t have to care about that anymore, you don’t have to care about savings. If they’re going to send you a thing through the post saying do you want a £25,000 loan, you immediately say yes. But when they tell you you’re going to survive you’ve then got to deal with all this crap again, and that was quite hard, you know. Well I think it was quite hard for me, I think my partner coped with it better than I did. I think she’s coped with just about everything better than I did.

Last reviewed October 2018.


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