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Living with bowel cancer

Coping with a serious illness can be a life-changing experience. Attitudes change, priorities change, and many find themselves looking at life from a whole new perspective. Those who are still grappling with their illness may find it hard to feel confident about the future. Those whose illness is behind them often describe the positive influence it has had on their lives. People whose disease is very advanced have to find a way of living as best they can in the present. 

Many people who consider their illness to be behind them described the positive changes it encouraged them to make in their lives. Some said they no longer dwell on the past or postpone things for the future but get the most out of every day.

 

Stephen believes people should be as positive as possible and enjoy life and he talks about some of the things he has done since his diagnosis.

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Age at interview: 19
Sex: Male
Age at diagnosis: 15
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You’ve obviously done a huge amount for other people and you say that keeps you going in some ways?

Yeah well one of my mottos is the best ways to help myself is to help others, so that’s how I’m spending my time now and as a result I’m pretty, pretty happy with things.

So would you, what sort of message would you pass onto other young people who’ve been given a diagnosis of cancer?

To young people, it’s just to keep on going, and just to be as positive as possible. But it’s important to recognise positivity isn’t being happy and smiley 24:7 ‘cos that’s a bit clichéd and unrealistic. Positivity to me is about making real steps and changes to your life. How you’re going to approach something or what you’re going to actually do with your life and just start thinking about things a bit more, a bit more potently and coherently, so is worrying about X scan result actually going to achieve anything? Or would you be much more productive just totally forgetting about it and just enjoying those couple of weeks leading up to it doing I don’t know whatever you enjoy. Each to their own, but yes to me positivity is about just making actual changes to your life and make a difference. And yeah so just keep on going. Cancer isn’t great, but life can be so you’ve just got to concentrate on that bit, and just enjoy living.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.
Others felt they had changed their priorities and no longer put work or material needs before people or quality of life. A great many said that they no longer allowed small problems overtake their lives.

One woman experienced a change of attitude as a result of her illness that eventually led to the breakdown of her marriage. Nonetheless she sees this change as a positive force in her life. Another woman whose illness led her to give up a career she loved explains why she thinks her life is now better than ever. A third woman whose illness is relatively recent is still struggling to feel confident about the future.

 

She explains how her change of attitude after having cancer brought about big changes in her life.

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Age at interview: 40
Sex: Female
Age at diagnosis: 29
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It's funny but I think, I think that happening to me wasn't so much of a bad thing when, you know, in retrospect, because it really did change me, it not just changed physically how, you know, what I eat and whatever and physically how I feel but it also changed my outlook.

And I think one of the, even one of the, speaking about family life, how that changed my family life is that I, my outlook on life changed and I just, little things just didn't have, I didn't, I just, life just had a whole new meaning and I just felt that I'd gotten a second lease on life and that it didn't, it didn't matter what the challenges were.

I just felt that I could overcome them and that, you know, little squabbles, or little things that used to bother me just didn't bother me any more.

I think that's one of the reasons why my husband and I eventually, because we eventually got divorced er and I think one of the, one of the reasons why was because my whole outlook on life was that it doesn't matter what the hurdle is or what happens er the important thing is, you know, you've got you're living, you're alive.

And I think because I had, because I was a lot more positive about life and living and just not letting quarrels and arguments or just differences or road blocks deter me, because for me it was like, you know, you just push them aside and move on because it's like how can you take life for granted?

And I think that sort of philosophical shift it, we really, really had a different view on how we were going to manage difficulties because nothing, nothing seemed insurmountable to me after that.

And things that happened, I mean, I could forgive and forget but you know it was different, it changed my outlook.
 

She explains why she feels her life is now better than ever.

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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My life now is, is better than it's ever been. I don't work, I didn't go back to work. I don't miss it, I've adjusted, I've felt because I've had quite a lot of problems with coming off of the laxatives, I could work part time now, things are a lot, lot better.  I've had a pretty good year this year.

But I've decided not to because I'm a lot happier, I, I'm not so stressed, I don't get stressed really anymore because I feel it's just, it's just not worth it.

We're not so well off, not nearly so well off and we've certainly had to tighten our belts but, I feel, I just feel a lot more sort of serene, and certainly I've, I've come to realise what is important in life. Certainly you realise that very early on. Friends, what friends and your family and I just feel a lot, a lot better for the experience.

It was, it was you know, I, I've been through the mill but I've come out. I feel a better person for it. Not necessarily stronger, I think I, in some ways I feel more vulnerable because I, I have been through quite a lot but I do, it's made me think a lot about what is important in life.

Things that I really, every day I try and incorporate something that um makes me feel glad to be alive and, whereas I would never make, make the time for that before. It was just a treadmill really and it was just you know, somewhere in years to come, you know I was going to maybe stop and breathe, but now this has actually forced me I am actually, I am actually doing that.

You know my marriage is stronger for it, for both of us having gone through this. And, really I would say it, it's been a completely positive experience. I can't actually really think of anything negative that in the end has come out of it at all.
 
 

She is still struggling to regain confidence in the future.

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Age at interview: 60
Sex: Female
Age at diagnosis: 59
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How do you view the future now?

Positively! Yes, I, how do I view the future? I have to be positive, yes. I won't, I won't look too far ahead.

Now at the beginning of the year I'd say March, April time, [her husband] wanted to arrange a holiday and I said "No". I wouldn't look one day at a time then, let alone to several months down the line.

Now eventually I realised [husband's name] needs a holiday, we're gonna have to do something, so I said "Alright" and we went to Scotland for five days, and that was lovely. And two weeks ago I went to Skegness with my mum and dad and my sister and we had a lovely week, beautiful weather.

Now [husband's name] having a few days off in the next couple of weeks, he's still got some holiday left and he said "I might as well have a few days, what do you want to do?" He came back "Three days at Windermere" he said. "I don't want to do it, no I don't. I don't want to think holidays." I said "I'm quite happy" I said "If you want to go out then that's fine, we'll go out in the car you know and take it as it comes."

At the moment I'm tending to, not take one day at a time, not so much as I was earlier on in the year. I'm looking a bit more forward than that.

But I, I still don't want to look months and months ahead, I can't cope with that somehow. I suppose myself I, I didn't know whether I was going to be here to look that far ahead, and I wouldn't. But I am doing it a bit more now where I'm a bit more happy about the future, a bit happier, more happy about the future than I was yeah, let's put it that way.

Some people have to find a way of living with cancer knowing that there is little or no chance of a cure. Several people talk about how they approached the challenge.

 

Describes his attitude toward living with a terminal illness.

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Age at interview: 49
Sex: Male
Age at diagnosis: 47
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Yeah, yeah, I've found it, I mean my consultant said to my wife and I when he first diagnosed us that some people find it a very, not rewarding so to speak, but a very enlightening experience.

And you know I've not enjoyed it, you know don't get me wrong, but it has been an experience that makes you think, makes you work out your values in life and makes you think about bigger things like death and living.

You know not just, I've always said that I'm not dying, I'm living and I'll carry on like that as far as I'm concerned. You know I exhibit these things saying I will happily die but my own view is that I am strongly living and that I can do a lot of things that many people of my age can't do in terms of fitness and stuff and work and I sort of live.

But I think it is, you know you go through life experiences and this is a life experience. Most people shouldn't have it, and most people don't have it but most people will die.

So you've got to ask whether you want to die when you're 85 and you're by yourself and your children are living in Yorkshire or something or whether it's preferable for me to die, you know, with my family and you know that's an option that I'm quite keen on in a sense.

And sort of growing old, losing my faculties may have been a problem for me. It may not have been but I don't know now, you just don't expect it (laughs).
 
 

Two years after his initial diagnosis Stephen was told his cancer was incurable. He talks about how he approached consultations.

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Age at interview: 19
Sex: Male
Age at diagnosis: 15
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Who told you that it was incurable? Was that your

That was 

Somebody

the consultant oncologist.

An oncologist.

Yeah mm.

That must have been a very difficult interview.

Yeah it was. But he was sensitive in how he, how he did it, and I’ve been battling cancer for two years, at that point so we’d kind of got used to all these different consultations or I had anyway, just and it, it had gradually got worse with time and you, you kind of learned, well I learnt anyway to control the controllables, you go into every consultation just thinking it is what it is. You know you can’t really, well no amount of worrying is going to change what the results are so you’ve just got to change how you react to ‘em if that makes sense. I was just going to react in the best way possible whatever they were.
This man describes how he approached the challenge. Another man explains how he came to terms with the prospect of dying. Even taking a philosophical approach to illness however still allows for moments of intense frustration. A woman describes the frustration of filling her life with small activities when she is still full of enthusiasm for life. A woman in her thirties with a young family describes how she thinks about the future and hopes to keep defying the odds.

 

Explains how he came to terms with the prospect of dying.

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Age at interview: 57
Sex: Male
Age at diagnosis: 57
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I also had to come to terms with the prospect of dying. I hadn't expected to die, based on my family history, I hadn't expected to die for perhaps another 20 years, 20, I was expecting to live into my late seventies or early 80s and here I was at 57 with possibly only six months to live, so that was a bit, a bit outside my plans.

Um, luckily we've had the sort of life where we have tried to pack as much in as possible. I call it luck but that was our decision, so maybe it wasn't luck. 

And what I did was write a balance, what I call "a balance sheet of life." I, I wrote down, I wrote down all the things I regretted that I would be missing and they just amounted to eight, eight things basically.

But I also wrote down all the achievements, all the happy memories and that came to over a hundred things. So I was able to look at this and say "OK if I've gotta die, I've had a damn good life."
 
 

Describes the frustration of not being able to do all the things she would like to.

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Age at interview: 66
Sex: Female
Age at diagnosis: 64
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I've got a lovely garden and lovely birds outside and I mean actually when I left the hospice when I was really ill they bought me a bird table and a um, a bird bath and we get the most beautiful birds, but I'm sick to death of those birds! I like people, I like life, I like being with people, I like doing things.

And I've had books to read and I have tried doing decoupage and all sorts of different things but it's not me. I'm the one that gets up and does things and this is what I resent because I can't do it.

When we were younger we hadn't got much money, we couldn't afford to go on lovely holidays or anything. We've worked hard and now we've retired we can afford to do things, also I, I always used to suffer with claustrophobia and never had enough courage to go on aeroplanes. And I'd just got that courage and I'd just started to go abroad and do things and see things and I just hate the fact that I, that's all stopped.

I know you shouldn't be too bitter and angry and I know there are an awful lot of people who are far worse off than me and I know I've, I have been abroad sometimes, I have seen things and I have seen my children grow up and, but I don't feel ready to stop living yet. Mind you I'm determined that I'm jolly well not going to if I can help it!
 
 

She sets short-term goals and hopes to keep defying the odds.

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Age at interview: 37
Sex: Female
Age at diagnosis: 34
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When you think about the future now, what do you think about?

Oh, Christmas! To the extent where I've got some Christmas presents already!

Just tell people, this is August?

Yeah, this is August and I've got quite a few Christmas presents, so call me mad or just call me

Well prepared!

Well prepared, yeah. What do I think about the future now? I don't think in years.

I probably, like we're sitting here now in August and I know I'm gonna be here at Christmas. This is what, now last year I wouldn't have said that, this year I am, but I'm saying it and I'm also thinking oh, don't push your luck [name], don't say things like that you know. So, I just think in, a couple of months ahead or, nothing great you know, because you don't want to, if I've been unlucky all the way through this I don't want to push it any more!

If I'm here in two years It'll be a medical miracle, you know if I reach forty. But I just don't think they realise you know.

Sometimes it hits me, and it's like Ah, it takes your breath away you know. Last, every Christmas I say "I might not be here next Christmas." But every Christmas I'm still here, come back like a bad penny! So yeah every year I say that, "I might not be here at Christmas!"

Well I hope you'll be saying it for many many more years.

So do I, I could be in the medical books, you never know. Mind over matter I say, I truly believe that, I truly believe it.
 
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Last reviewed August 2016.
Last updated August 2016.

 

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