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Living with and beyond cancer

Financial issues

Cancer can disrupt many aspects of life, including household finances and budgets. For many people, financial issues resolve soon after treatment, but having had cancer meant that some of the people we interviewed were living with on-going financial difficulties.  The reasons for these difficulties varied, but included a loss of income due to early retirement, reduced income while on sick pay, or having to spend money on making their homes accessible. A few people said they had missed out on promotions because of their time spent away from work. One source of help was access to long-term government benefits which eased the financial burden of their illness. 
 
One of the common issues facing people living past a cancer diagnosis was difficulty in getting different types of insurance products, which could impact on their lifestyle. It was often more problematic to get health, travel or car insurance with a history of cancer. For John (Interview 09), who was living past colorectal cancer and used to enjoy travelling with his wife, being on long-term medication means that his insurance companies ‘aren’t too happy’ about him travelling abroad. Christine, who had breast cancer, thinks that life insurance companies wouldn’t ‘touch her with a barge pole’.
 
Despite their medical history, most people were able to get travel insurance if they paid an extra premium cost on top of their regular cover. One woman, who had survived ovarian cancer, said that having to pay this extra premium for her travel insurance made her feel that the insurance companies ‘weren’t going to give her a chance’.  
 

She felt that having to pay a higher premium for travel insurance after ovarian cancer was an...

She felt that having to pay a higher premium for travel insurance after ovarian cancer was an...

Age at interview: 48
Sex: Female
Age at diagnosis: 41
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Having been through the experience, sometimes it’s quite difficult to get on with life afterwards. For a start your perspective has changed and all sorts of things, I think I’m probably more laid back than I was, but there are other hurdles to get over. It’s almost as if you’re a leper. It’s very difficult to get insurance. I know the first time we tried to go on holiday after my treatment, they offered insurance to my husband who’d not long been in hospital for three days, for £17, but because I’d had cancer two years previously, they wanted a premium of £77 for me. And you almost feel as if people aren’t going to give you a chance. 

 
Others found it impossible to get insurance at all once they mentioned the word ‘cancer’ to insurance salesmen. One man found that he wasn’t able to renew his car insurance when his insurance company queried his medical history. He now doesn’t bother mentioning his testicular cancer in order to get the cover he needs. On the other hand, Claire, who had survived recurrent Hodgkin’s lymphoma and colorectal cancer, hasn’t had a problem getting car insurance but can’t get house or health insurance.  She feels that she is totally ‘uninsurable’ but also feels lucky that she has a husband who can take on things like the house insurance in order for them to get a mortgage. 
 

Claire feels ‘uninsurable’ after having had three bouts of cancer and can’t get house or health...

Claire feels ‘uninsurable’ after having had three bouts of cancer and can’t get house or health...

Age at interview: 46
Sex: Female
Age at diagnosis: 16
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Oh, yeah, yeah. Nobody will insure me, so, you know, I can’t get house insurance, you know, for mortgages and things, which used to be, you used to have to. I don’t think you have to so much now but, so again, lucky for me because I had a partner and he was prepared to take it all on, that was fine, but if I didn’t have someone that was prepared to do that I would have had to have either not got a mortgage or I’d have had to have gone somewhere that was prepared to take me without insurance. Because I’ve now, especially now it’s three times, I’m now, I think after two times and after about ten or fifteen years I most probably just about, but now I’ve had it three times I’m most probably totally uninsurable. So, yeah, that has made a big difference, but that’s usually for anything money related. 
 
Things like car insurance is fine. Things like, what was the other one, as I was saying before, if you go somewhere, like, for beauty treatments and stuff, they want you to either sign a disclaimer or they won’t even take you, so there are things like that. There was another one recently I went for. Oh, health insurance. Obviously, they won’t touch you with anything to do with cancer related, but if I’ve got a broken leg I’d be fine, but I don’t know, anything else. So yeah, it does mean that if anything does happen I have to rely on the NHS, the State or my job to back me up with regard to pay. So you do have to think about that.
Some people had taken out critical illness cover and other insurance policies before they had cancer, which helped them financially. A 26 year old man with testicular cancer had his mortgage paid off by a critical illness policy, as did a woman living past ovarian cancer. Another man living five years past testicular cancer wished he’d taken out critical illness insurance before his diagnosis, especially as he was self-employed at the time of his diagnosis and therefore ineligible for company sick pay. 
 
People who have cancer can sometimes qualify for government benefits. Getting these benefits can act as a short-term support around the time of cancer diagnosis and treatment and can help with ‘paying the bills’ at a difficult time. We also spoke to people who needed to stay on benefits in the long-term as a result of cancer. 
 
Some people had to give up their jobs or retire due to cancer and haven’t been able to go back to work due to on-going side effects from cancer and its treatment. In these cases, having access to government benefits helped when facing the long-term financial implications of losing a stable salary. A 33 year old man with lymphoma left his job due to his illness and now receives benefits with ‘all the components that go with it’. Having these benefits has meant that he and his family are doing ‘OK’ financially at the moment. Another woman living past lung cancer still gets benefits as she is classified as terminally ill. She said it had been ‘wonderful’ to have her finances sorted as she’s not sure how she would have managed without having a salary.    
 

Being classed as ‘terminally ill’ with lung cancer means that this woman is getting Disability...

Being classed as ‘terminally ill’ with lung cancer means that this woman is getting Disability...

Age at interview: 64
Sex: Female
Age at diagnosis: 57
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I get Disability Living Allowance, I think that's because, I don't know whether all cancer is, but certain cancers I think may be because it's, I'm supposed to be terminally ill, and I think maybe it's that you're sort of, it's caused special circumstances, so you qualify. And that Macmillan nurse that I told you about, she's sort of within, oh before I'd ever started my treatment, when I was still having my tests, she sorted all my financial things out and everything, you know. Because I think that is a thing when you've always worked and you suddenly stop working, and you've no idea when you're going to be going back, you know, you just think, oh well, how am I going to manage without my wage, and all this stuff, because I think you tend to live up to your incomes, don't you, type thing? But as I say, she was wonderful and she sorted it. And I've got it ever since; I think you get it for life.
 
Yes, do you mind me asking how much it is a week?
 
Well it is, I think I get the highest thing, and I think it's about £360 a month, but I have a car, for the last two years we've had a car from it, so they take, I think it costs £150, so I think I get about £220, something like that a month now because we have the car. So…
 
Who organises the car, is that a government thing or charity?
 
Yes the Motability.
 
Mobility Allowance?
 
Mobility yeah.
 
Is that a government?
 
I think so, yeah, I think it must be.
 
Oh that's good.
 
Yeah so it's very, very good, you know, you get a list, you can choose different cars. So it was the only way we'd ever have a new car, so when [my husband] was 65 I just said, "Would you like to do that, you know, we can manage can't we?" So sometimes you think, oh we could do with £150 a month, but there again it's nice, isn't it, to have a new car. And, you know, they, I mean all you have to do is put petrol in, because they pay for the insurance and everything, so…
 
Oh that's good.
 
You know, they pay for the servicing of it and everything, so it's very good. But yes, now whether all cancers get that, people with cancer get that I don't know but, yeah, I've had it and it does say you get it for life. Because I know sometimes, you know, when you park in a, I have like a, well it's a blue badge now, isn't it, and you park sometimes at a shopping supermarket in a disabled area, you know, people see you get out and they think, they look at you as if to say, well there's nowt wrong with her, you know. But I mean, you know, I once said that to [my husband], "I feel awful, you know, people look", he goes, "Look, they wouldn't want what you've had, would they, so don't worry about it". But yes, it's nice to be able to park at the front of shops. So, as I say, there's a lot of advantages, isn't there, in these things.
 
Getting benefits might mean being ‘labelled’ as disabled or terminally ill, which might be difficult for some people. Janet (Interview 04) had colorectal cancer seven years ago, and she was unable to keep working full-time due to her on-going fatigue and bowel problems. She felt that she had to ‘get real’ about living with a label of being disabled. Now that she gets tax credits and works part-time for a charity she actually finds that she is better off than before she had cancer when she was self-employed. Not everyone was able to get government benefits despite applying for them. A 34-year-old man living past testicular cancer wasn’t entitled to any benefits and has been finding things very difficult financially. He felt that he was fighting to get something he ‘really should have’ and should be entitled to benefits as a result of his illness. 
 
Government benefits didn’t solve all of the financial problems for people who retired or left their jobs early. Marilyn, who is 54, had leukaemia and had to retire on health grounds. She is entitled to benefits, but it only adds up to half of her previous salary. Although her husband still works, they find finances tight, and she feels guilty about not having the energy or ability to work. 
 

Marilyn gave up work after her chronic leukaemia diagnosis and is still finding finances tight...

Marilyn gave up work after her chronic leukaemia diagnosis and is still finding finances tight...

Age at interview: 62
Sex: Female
Age at diagnosis: 54
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When I had to actually give up work, well, in fact I decided to retire on health grounds, that was a little bit of a worry. So I investigated Incapacity Benefit. I thought, “Well, there’s no point in wondering if I was entitled to it. I’ll just do it.” Luckily, I was entitled to it, so that took over from my part-time salary, which was probably about half of what I was was earning. The firm I worked for were quite generous paying holidays and things like that. 
 
That was okay for the start because, again the work that my husband was doing was coming in quite well, so it wasn’t too much of a problem. When the Incapacity, when I was sixty the Incapacity Benefit stopped but then I got my pension. So again, things weren’t too bad. We were still running two cars, although every time we sort of had to get tax and stuff like that we kept thinking, “No, we can’t”. But to cut a long story short we ended up lending the car out to my daughter, so it was being used, so that was all right. 
 
By that time finances were getting a bit tight because my husband’s work is in the building trade and that was slowing up, basically. So that was a worry and it, I’ve never really got over not being able to earn. I felt very guilty about not earning. I felt quite useless when I had my good days, that I should be out working. But unfortunately I never knew when my good days and bad days were. So that’s quite difficult to cope with. You know, I hummed and hahhed about going out and doing a few days here, a few days there, you know, in sort of like a shop or something, but then the next week I’d start feeling tired, this was before treatment obviously. So I sort of wore myself out in the end, sort of being on this constant roller coaster of' shall I work, can’t I, why can’t I? So in the end you have to accept it. 
 
Again, finances were tight but not ridiculous. We still managed to pay the bills, have holidays, you know, go out on trips, do the things we normally do. It’s not good at the moment because the building trade and the housing market, which is what obviously my husband’s concerned with, is not good at the moment. And even though I might be in remission for the next four years, I just can’t see me going back to work. 

 

Living with less money due to a loss of income meant that people had to cut down on their spending and manage their finances differently. One woman living past ovarian cancer described that despite losing her salary her family was able to manage by cutting down on holidays. Julie is a 27 year old woman living with leukaemia who had to give up a job in London to work closer to home. As she noted, ‘you have to learn to adjust’. 

A 39-year-old man who is ten years post-diagnosis from lymphoma and hasn’t been able to return to work feels that while other people in his community have the extra money to go on holiday or buy new things, he and his wife have to live more frugally. What money they do have goes on trying to buy things for his daughter to make her life as normal as possible. 
 

David retired after having colorectal cancer 11 years ago and now that he is living on a pension...

David retired after having colorectal cancer 11 years ago and now that he is living on a pension...

Age at interview: 67
Sex: Male
Age at diagnosis: 57
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But did having had cancer, do you think now it’s impacted in any way on your finances or anything, because you had to, or you took early retirement and things?
 
Well, of course it has because I mean I’m living on a pension. Fortunately, we both had good jobs. We don’t, before I was ill we didn’t save for holidays, we just went on holidays, which is, not a lot of people can say that. We’d go, “Where are we going?” “Oh, we’ll go there.” We’d go to France. We’d go to Africa. But now we have to work it out a year in advance and see if [company name] have still got anything in the pot for me. And it obviously has impacted on us. Fortunately, my wife is very numbers orientated. I tend to not spend as frivolous. And it’s not, when you say impact, it’s not impacted on the fact that we need help.
 
We don’t need help at all. We’re very fortunate, very comfortably, we’re not rich, comfortably off, but when we make anything, financial decisions, we think about it for months. You know, this option, that option, we could do this, oh, we’ve got some money back from there and some dividend has been paid, oh, we’ll use that and won’t have that this month, we’ll do it that month. So it’s made a difference but impacted is a bit of a strong word.
 
That sort of thing. We’ve got another, there’s another car in the drive, in the garage, but the Corsa there, which was new on the first, second of November last year. We did have a Saxo and it was getting on in years but it never let us down, only the things that normally go wrong with cars, but never let us down, but there was this scrappage scheme.
 
Oh, right. Of course.
 
And we thought about it and thought about it, and my wife thought about it and we did great investigations for six months before we decided, and the decision was we were offered good deals, an amazing deal at one garage. But we decided to go to a company near Liverpool. We drove all the way up there. He offered us another one and a half thousand less. I said, “We can’t, we’ve got to go”. But that’s the sort of, we spend a lot of time thinking about things.
 
You do straight away think, “Oh, I wish I’d have done such and such”. And I was on crutches, so my wife had to drive there and back, and those are the sorts of things.
 
And in the end that’s how we hopefully save money, but we did need a new, it was getting to the point where the scrappage deal would finish and we were going to struggle, we’d have struggled to buy a car.
 
And we did need another car. Well, did because my wife goes to work and I sometimes need to go somewhere else, but that’s going to change eventually. When she stops work we’ll only need one car. 
 
But that’s when I say impacted.
 
It’s just a slight shift.
 
It shifts, yeah.
 
Yeah.
 
You just think a bit more about it. As I said, before when we weren’t, we were both working, didn’t give it a lot of thought.
 

Since having non-Hodgkin’s lymphoma he finds that other people can afford things that he can’t,...

Since having non-Hodgkin’s lymphoma he finds that other people can afford things that he can’t,...

Age at interview: 49
Sex: Male
Age at diagnosis: 39
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The thing that I noticed most is that people we know move on, you know, “Oh we’ve got a new car, oh we’re buying a new house, oh we’re going on holiday here, we’re doing this”. We don’t, we can’t do that. But my partner and me we don’t have a great, if we have a social life it happens in these four walls or at a friend’s house, or maybe one night a month we might nip across to the pub. Because the pub is four or five miles away I don’t drink. Yeah, my partner can usually do a fair bit of that. But we don’t have as much of a social life as most people. 
 
Most of our money, I would think, is spent on our daughter, trying to make her life as easy and as normal as it can be. A school trip, if she doesn’t go on a school trip she’s going to feel left out, yeah? I mean you’ve got to draw the line at she’s not got her own horse or anything, you know, I mean you’ve got to draw the line there. She would want one, I mean she’s at me for a cat. But she’s always well turned out, she’s a happy child, she’s very well adjusted. I think some of her teachers are a bit shocked at times, but she’s well liked and most of our money is spent on her. You know, she needs a computer for her homework, so she’s got a good computer. I’ve done without a lot for a couple of months and managed to get a good deal on a computer. She lives in the middle of nowhere, so we got her a pushbike, yeah? And some of her friends, you can tell that there’s jealously there because, “I’ve not got one of them and I work?” You know, “How can you manage it?” I say, “Well I’m not in the pub every night pissing against the wall,” yeah? And you try to get people to understand that. But there is quite a lot of jealously that you can feel coming from other people, and there’s nothing you can do.
While some people had to cut down on their spending, one man living seven years after being diagnosed with lung cancer said that although he had less money, he is spending less as he has less energy to go out and do things. 

For more information about how financial issues affect people closer to the time of cancer diagnosis, see our information about experiences of financial issues and pancreatic cancer and lymphoma and finances

Last reviewed October 2018.
Last updated October 2018.


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