Financial implications of bowel (colorectal) cancer

Because bowel (colorectal) cancer often develops later in life, many people are retired by the time the illness affects them, so it may not cause them significant financial difficulty. Households may also be unaffected if they do not depend on the income of the person who has cancer. But those still working at the onset of illness, people on fixed incomes, individuals who are self-employed, and those without insurance may experience considerable hardship. Difficulties with bowel habit can persist for years even after successful treatment, forcing some people into early retirement or a change of career.

One man whose job involved frequent travel explained how his unpredictable bowel habit led him to take early retirement. A young woman whose cancer coincided with a pregnancy wanted to be “doing something” but felt unable to resume her career in teaching:

Explains how his unpredictable bowel habit made it difficult to cope with his job.

Age at interview 52

Gender Male

Age at diagnosis 45

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As my job required me to travel abroad at short notice some of the flights I had to take were early morning flights, roughly at 9 am which means I have to wake up at 4 am and finish off with my bowel problems which sometimes I can cope with and there are days I cannot cope and I have had to miss flights.

Usually the company was pretty fair in allowing me to take later flights to cope with my bowel problems but with cost cutting which happens with almost all companies these days the cheaper flights seemed to be early mornings and this resulted me in having to battle with my bowel problem versus my job commitments and finally I had to retire from my job for this reason last year.

And now I am retired and seem to cope with my bowel problems fairly well because I do not have any rigid programmes in terms of having to go to the toilet in the mornings because I have to otherwise do due to a full time job.

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Persistent problems with her bowel habit left her unable to resume her teaching career.

Age at interview 35

Gender Female

Age at diagnosis 32

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I’ve actually never been back to work since I was on maternity leave so I suppose, and my husband salary has fortunately compensated for that so no.

I am starting to feel I’m the type of person who would need to do something but I don’t know quite what I’m going to do with, I do feel I need to do something beyond being at home.

Do you think that you’ll go back to your job one day?

No. I don’t see myself going back to teaching. I don’t see myself ever being able to cope with that.

Because of the stress?

Mm yes because er, and because on the physical side of things. I mean it may alter I don’t know but up to now I like to be able to go to the toilet when I need to go. I can’t hold on as such you know, so from a physical point of view I don’t see myself being able to do it.

And also from an emotional point of view, from a stress point of view. And I do know that stress alters my bowel movements so I think I’ll have to try and avoid that as much as possible.

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Households that relied on 2 incomes had to adjust to living with less money. The transition from living on employment income to pensions or benefits can also be difficult. One man explained how he coped with this and how Macmillan Cancer Support were able to help with winter heating costs.

People who are self-employed face particular difficulties. One man who ran a newsagents described how financially vulnerable his illness left him. Another man who works freelance explains how difficult life would have become if not for an insurance policy taken out years earlier. The importance of having adequate insurance cover was also emphasised by a man who believed that money-related stress might have compromised the effectiveness of his chemotherapy.

He explains the difficulty of moving from employment income to a pension after illness hastened…

Age at interview 69

Gender Male

Age at diagnosis 65

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When I, you know I was just about to retire and was forcibly retired then. Now, when that hits you you’re out of work and I was just basically an ordinary worker.

When I was out of work, yeah, it did hit me and the MacMillan nurses come and I, I, you know, she says “Have you any worries?” And I said “Well weve always worries with you know the heating oil is coming up to pay and one thing and a two”. “Well, I’ll tell you don’t worry about that, I can maybe help you there”. And they did. They helped me.

Now as things went on and we got things levelled out and pensions, the pension started to come through and all this. Things got a bit easier yes, but it was just that initial period, it’s like shifting house where, you’ve got one mortgage and the other one in between you know you have this, you have to try and work things out and balance it out when no money maybe is coming in for a while and you’re, you’ve got your mortgage or something you know, yeah, it was, it was worrying.

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Being classed as self-employed left him financially vulnerable.

Age at interview 67

Gender Male

Age at diagnosis 64

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The only financial difficulties we, we went through was when I actually had the operation because were supposed to be called self-employed in, in the job we was doing. Although you’re not self-employed really you know, they tell you what to do all the time, you’re not self-employed.

They paid my wages, full wages for the few weeks, three weeks I think it was and then they cut me, wages down. And then I had pressure put on me to go back to work. And I just told them that, “I can’t come back to work until my doctor says I can go back to work”.

So they stopped my wages completely and I finished up on Social Benefit like you know. I did not you know, I thought it was a bit much of the company doing that to me because we worked, I worked as a manager for em thirteen years and never had a day off before I had the operation.

And they wouldn’t give you any sick cover beyond the three weeks?

No. No, because they told me you should cover yourself because you’re classed as self-employed.

But I mean if, you know to me self-employment is your own gaffer and all this sort of thing, which you’re not, you work for a company and they tell you exactly what you do and what you don’t do.

But all it is, is to just relieve them of anything that crops along like you know. That’s , that’s the only, we had that difficulty, we had to struggle a bit, it’s a good job I’d got a bit of savings to fall back on, but I wasn’t helped by them like, you know.

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For a freelance professional having income replacement insurance has been vital.

Age at interview 53

Gender Male

Age at diagnosis 51

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Yes I’m extremely fortunate, this is the only good thing in all of this business, in that many years ago when I went freelance I took out a permanent health insurance, which means that having become ill and not being able to work, they pay me a monthly income.

Strangely enough if I was in salaried employment I would be able to work because if I was doing a nine to five day, I could then take the odd days off for say chemotherapy and so on. But because I’m freelance and my contracts only last for about three or four weeks and for those three or four weeks they’re very intense and I can’t just disappear for three or four days it’s virtually impossible for me to work.

The difficulty of this is that the regular company or companies I work for it’s been virtually impossible for me to do any work with them so for, for almost coming up to eighteen months, two years now, I haven’t really done any substantial work at all.

But if I hadn’t had this insurance I wouldn’t be in this house anymore, so that would have added enormously to my traumas because of the mortgage and so on, and my son probably wouldn’t be at the school hes at any more, which is a private school. Which also would have added to the trauma so you know, that’s one of the very good few financial decisions I’ve ever made.

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Financial worries, though, did put a considerable strain on some older people. A pensioner who had to go into hospital on short notice experienced anxiety before her operation because she needed someone else to collect her pension money and pay her rent. The wife of an older cancer patient who lived in a rural area and did not drive faced taxi fares of £40 a day in order to visit her husband in hospital.

Having to go into hospital at short notice left her needing someone else to collect her pension…

Age at interview 77

Gender Female

Age at diagnosis 68

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And even when that phone call came and said I’d gotta go in that evening, but my main concern was that I wasn’t ready! I, I hadn’t sort of left things ready here or got things, not that I was scared so much about going in the hospital but I, I think it was because it was so quick and I felt oh God you know I’m not ready, and I won’t be able to get my pension and pay my rent, and all silly things like that, you know.

So how did that get sorted out?

Well, I could, that was on the Tuesday and my pension day’s Thursday and I always pay my rent and my council tax then like and so I think it was on the Friday when my daughter came down and she brought my pension book and if you sign it on the back somebody else can get it for you. Only for a limited time like that can happen, so that is what I done, you know, the two weeks I was in there, I signed on the back and she got my pension so she was able to pay my rent and my council tax like, so that was my main concern because I don’t like owing anybody any, I can’t bear owing anybody anything.

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People with bowel cancer are usually entitled to one or more government benefits. For more information on help with the cost of cancer see GOV.UK’s website.

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