Living with and beyond cancer
Work changes
Some of the people we interviewed were working at the time they were diagnosed with cancer, and found that cancer affected their work or career. Most were able to return to work full or part time, and felt that resuming their job was an important part of getting ‘back to normal’ after cancer. Others stopped working, re-trained, or took early retirement in order to concentrate on their health or because their job involved physical work or there were restrictions within their job. One man was a pilot in the Navy when he was diagnosed with lymphoma. He needed to stop flying for several years until he had successfully completed his treatment. Although back flying again, he says he has lost the chance of promotion and he needs to retrain in the new technologies.
Having cancer was a major event, and made several people re-evaluate their lives. Surviving cancer was the encouragement they needed to ‘make a change’ in how they lived their lives. For instance, some people re-assessed their work priorities and decided to try a different career, which was a positive change for many. Others gave up their jobs completely to focus on other aspects of their lives, such as hobbies or their family. One woman who was living past ovarian cancer gave up her work because she wanted to focus on other things, such as painting, writing and spending time with her mother and grandchildren.
Surviving cervical cancer meant that this woman made more time for her family, which she feels was a positive thing.
Surviving cervical cancer meant that this woman made more time for her family, which she feels was a positive thing.
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I used to try and do full-time work and look after my daughter and I realised that I actually didn't want to do that, that I wanted to make sure I just spent as much time as I could with my daughter. And I have had, you know, five very happy years, five and a half very happy years since, and I know that I wouldn't have had those five happy years had I not had the illness. I would've been very much more focused on my work and trying to keep my CV looking good, and I think it just helps you put things into perspective. You hear people say it but it's probably not till it really happens that, and it is that complete taking the rug from underneath your feet feel, that is horrible at the time but a huge wonderful life learning, and I think if people can hang on to the fact that it will have huge positive sides to it and keep that in mind, that they'll actually probably be pleased they've had it, it will help them with the down days really.
Neil decided to change his life and take on a new challenge working in property development after his treatment for acute myeloid leukaemia.
Neil decided to change his life and take on a new challenge working in property development after his treatment for acute myeloid leukaemia.
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Right. I wanted to ask you how long it took to get your life back to normal once you got home? If indeed it did go back to normal.
Life changes. And I touched on earlier, you sort of look at things slightly differently. Life getting back to normal, I decided to change my life, not in any major way, but I decided to go and do something that I hadn’t, I’d touched on before when I was in employment, part of my life I’d been involved in a setting, taking an American company multi-national in the music industry. And I had had great fun for three or four years setting up companies all round the world, being in at the beginning. And I’d done not a bad job and thought, ‘Well I like property, let’s go and see, go and do something like that’. I didn’t particularly want to become a property developer but I wanted to do something connected with property. And so I ended up being part of a team of people who’d bought an old house and have been doing restoration of old properties, which brings different challenges and different looks and things and the way to do things, which is that’s about, and so that changed me on that score, so I did that and that’s there.
Some took the opportunity to go back to university or college and retrain in a different career doing something that they had always wanted to do. One woman found it hard to make any long-term plans until her doctors told her that her disease was in remission, at which point she committed to going back to university to complete a Master’s degree.
Once she found out her chronic myeloid leukaemia was unlikely to come back, she studied for a Master's degree and changed her career completely.
Once she found out her chronic myeloid leukaemia was unlikely to come back, she studied for a Master's degree and changed her career completely.
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But I think one of the major decisions I took was to go back into full-time education and do a masters. And I’d always wanted to do it but I never felt, because the prognosis wasn’t that great and the doctors were, you know, every time I asked them about, you know, whether I should commit to a longer term plan of any sort, they would always kind of look a little bit hesitant. But I think the day the doctors actually said to me, “Listen. Your Philadelphia chromosome has actually...” - I think the word they used is it’s reversed in some way - and, you know, “The disease has actually kind of stopped still in its tracks”, rather than the danger of it being, you know, moving the other way. That’s the time that I felt, “Okay. Now I can actually commit to a longer term plan”. That’s when I decided to do my masters.
So that was, I started doing my masters in 2001. Obviously, I planned for it, I applied and all of those things. 2001 to 2002 I did my masters. Before that, all of, up to that time I was just working in my administrative job. And then after doing that, that’s when I kind of moved into a professional career. So before that I was just a, I was doing other work. But I always wanted to do that, so sort of get a professional qualification and then move along in that career. So that’s what I did then, which has been really good, so I’ve been lucky in many respects.
Surviving Hodgkin's lymphoma gave her the confidence to do an arts degree, which was something she always wanted to do.
Surviving Hodgkin's lymphoma gave her the confidence to do an arts degree, which was something she always wanted to do.
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And I did go back in the April after the radiotherapy had finished, but I stayed about a month and I thought, “No I don’t”, in that respect I didn’t want to do that anymore. Yeah that’s it, I did think about, saying that it didn’t change my life, it sort of, I started doing things that I’d always said I wanted to do but never did. I took myself off to college and I did an access course to art and design because I’d always wanted to do something arty when I was younger and never did, messed up my education, just sort of came out of school with five O-levels and went straight to work. And I suppose I wanted, yeah I did, I wanted to go to art college at the time, but this prompted me to do something about it and went to college, did an access course and I was greatly encouraged to apply to university.
So I did and got into two. I got into one university to do a degree, a BA in, what was it now? It was to do, I can’t remember, some kind of arts and furnishings and things. It was a really interesting course but the unfortunate thing was it was up in London and it was at least three full days a week, and with having the children it was difficult to do. So I opted for another university and did an applied arts degree, but I only completed one year because of sort of constraints, family and what have you. But hopefully one day I will go back to it.
But, yeah, I suppose in that respect it’s given me more confidence to a degree. I will do things now that I didn’t, I was a bit sort of sheepish with, let’s say, a little while ago, so in that respect, yes. And even my job now I think I’m doing because I’m slightly more confident. I work in a school, I work with kids and I thoroughly enjoy it, I think it’s one of the best jobs I’ve done. So yeah, so I think my confidence has grown through the experience.
Feeling more tired than usual or finding it hard to concentrate was a common long-term effect of having had cancer. Sometimes people felt that they were dealing with fatigue even many years post-diagnosis and that this extra tiredness meant making adjustments to how they worked. Occasionally, this extra fatigue meant having to get a job more locally in order to minimise travel to and from work. Julie used to commute to a job in London, but the stress of her job and long commute made her tired and more susceptible to coughs and colds. She now works nearer to home and although there is a big difference in salary, she wishes she’d made this change ‘years ago’.
After surviving acute leukaemia Julie found that working locally was a big adjustment from her busy job in London, but she now enjoys the flexibility and ease of her working day.
After surviving acute leukaemia Julie found that working locally was a big adjustment from her busy job in London, but she now enjoys the flexibility and ease of her working day.
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And I tried and, what with the travelling and my work and then coming home again at the end of the day, by the end of the week I was beat. They were good in the sense that they let me do ten till four so I missed either rush hour on the train there and back. But it got to a few months and then they wanted that to stop, so it did. And I tried, I really did try. And I tried for a good couple of years, I’d say about three or four years, and by this time I’ve met my husband and we were living together and I was getting ill again. Not in the leukaemia sense, but ill as in tiredness would bring on coughs, colds etc etc. So my husband then said to me, ‘So why don’t you stop working and you work maybe locally’. I had never done that in my life. I got out of school, I wanted, I went straight to London, I wanted to work. I liked my life. I liked the going out, the partying, everything. I liked that, and work from home? And work at home, and I was like, ‘I’ve never done that.’ But he said, ‘Well, you know, give it a shot and if you don’t like it then you can go back to London’. So it took nine months for him when he first mentioned it, to the time that I actually said, you know, ‘Okay. We’ll give it a shot.’
And it’s now been nearly six years since I’ve worked in London but I quit. Again, an emotional time because I’d been, I was, you know, in my thirties then and I’d been in London since I was sixteen, and it’s the only job that I’d ever known, the only thing I knew how to do. And I think, ‘I’m leaving London. This is another part of my life closing down’. And I got a job locally and we tried, and salary difference was amazing. But I was well. It wasn’t the travelling, the stress of, you know, my work or anything like that, because obviously I’m working locally, I’m not travelling to London. Can’t say that I didn’t, for the first, say, six months I really missed it, but then I kind of liked being at home by about what? Quarter to four in the afternoon. That was amazing.
People who worked in physically demanding jobs often had to make adjustments to how they worked during their cancer treatment until they felt strong enough to return to their old role. A few people found that they never regained their strength or energy and decided to leave or change their jobs altogether. A man who worked as a ship builder was too weak to carry on with the physical nature of this job and he had to retire. Another man worked as a surveyor, but he didn’t have the strength to work on building sites anymore so he also gave up his job. Ian was diagnosed with leukaemia when he was 27 and left his job as a police officer because he found that the stress of his job was too much to bear. He re-trained as an occupational therapist and his new colleagues are understanding about him needing some ‘down time’ when he’s tired. Succeeding in a new career has given him the confidence to go out and try new and different things.
Worries about future illnesses or cancer coming back affected how some people felt about their long-term career. Marilyn described how she has lost her work confidence and can’t see herself ‘mentally re-adjusting’ to working anymore, especially as she’s not sure if her cancer might come back or not. Claire, who had colorectal cancer seven years ago, was wary of moving to a new job as she wouldn’t be eligible for sick pay for two years.
Claire had Hodgkin's lymphoma as a young adult and colorectal cancer almost 7 years ago. She is worried about moving jobs as she wouldn't be eligible for sick pay for two years if her cancer recurred.
Claire had Hodgkin's lymphoma as a young adult and colorectal cancer almost 7 years ago. She is worried about moving jobs as she wouldn't be eligible for sick pay for two years if her cancer recurred.
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Recently I was in a trawl for redundancy at work and there was an option to go for a, to take that, therefore meaning that I would then have to go and get another job.
And you have to think about by leaving somewhere that you’ve been for ten, fifteen, twenty years, to start again somewhere that you haven’t got that background and that they may have not, especially for two years, pay you sick pay and a) may not be prepared to take you on anyway if they knew about anything. It’s something you have to think about, so it does mean that you do get tied to places or organisations or places just because you have to think about what the risks are if you don’t.
For the most part, people felt that their employers were sympathetic and supportive of their illness. While they may have needed some time off around the time of diagnosis and cancer treatment, those who stayed in work felt that having had this extra support helped them through a difficult time. Those who were self-employed faced extra financial challenges due to not getting sick pay through work or losing long-term clients as a result of taking time off to recover from cancer and its treatment.
Not everyone had a positive experience when dealing with their employers, and some felt that their past illness meant they were treated differently at work. Claire was passed over for a promotion due to her medical history and now she is more careful about disclosing aspects of her illness to her employers.
A few years after treatment for colorectal cancer, Claire was assessed by a corporate doctor who did not think that she could cope with the pressure of a promotion due to her illness and as a result she decided to leave her job.
A few years after treatment for colorectal cancer, Claire was assessed by a corporate doctor who did not think that she could cope with the pressure of a promotion due to her illness and as a result she decided to leave her job.
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What then happened was, after about two or three years of me going back full time, ‘being normal’, working hard in my mid-twenties, I went to go for a promotion and because I’d been ill they sent me to the corporate doctor, not my doctor, their doctor. And he said that he, in his view, he didn’t think that I would be able to cope with the pressure of a promotion that would give me because I’d been ill.
And in retrospect I think that was to do with them being worried about if I did get, if I did take on the role and it did give me stress and then I went sick and then I, possibly, I wouldn’t say I’d have sued, I wouldn’t have sued them but they might have been thinking I might have gone back to them saying, “You’ve given me too much to do and because I’ve been etcetera etcetera”. I think they were covering their back, if you like, and I was very disappointed in that because I’d said all the way along that I felt I was fit, which I was at the time actually. I was very fit because I was playing squash two or three times a week and I was quite capable of doing the job. I was doing quite a responsible job at the time and it was the next step up and it would have just been a natural progression.
And because of that, I got very resentful of the organisation, so therefore left and went on and did something else. Fortunately, after a couple of years I then went to the job that I’m in now, and I’ve been with them nearly twenty years, so it worked out okay in the end, but I could have then gone job hopping. What I do tend to do now is, if I get asked on a form whether I’ve had any treatments, sometimes I won’t say because I think that does hold you back or they will ask lots of questions or they’ll send you for a medical.
Cancer can affect people of all ages. A few people who were much younger than retirement age decided to, or were asked to retire from their job following their cancer diagnosis. One 45 year old woman who had worked in a busy GP surgery had a lowered immune system from her lymphoma treatment, and retired due to worries about contracting infections. Occasionally, those who had to retire early felt sad about having to stop work. A 39 year old woman who had lived past ovarian cancer didn’t feel that she’d have the energy to do her job even now and misses the challenge of working as a teacher. Michael (Interview 112), who was 48 and gave up his job when he was diagnosed with leukaemia, feels that if he hadn’t had cancer he would have liked to keep working until retirement age. Nowadays, he finds that cancer is playing less of a major role in his life and now he is trying to find other things to do to fill his time.
Michael was sad to retire, and now that he finds leukaemia is playing less of a major role in his life, he wishes he was still working.
Michael was sad to retire, and now that he finds leukaemia is playing less of a major role in his life, he wishes he was still working.
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Yes, I do have some regrets actually. Because I think I’m still fairly young and I still, I had lots of papers that were sort of, you know, halfway, your revise and resubmit type things, and I just stopped really and put them to one side. And they’re not things now you can, you know, two or three years later you can’t go back to the journal and say, you know, “Remember me, you know, two or three years ago”, because things move on. And I have, I’m not sure whether, I mean I suppose in a perfect world none of this would have happened, I’d have carried on until I was, you know, probably sixty-two or sixty-three, and retired. But, you know, this had happened, I was able to get a very favourable financial deal from my employer and I was able to take retirement and still work part-time. So in that way it worked out very well. But I still felt I had a bit of my career to run.
And I have found it quite difficult to make adjustments to finding things that I find worthwhile, particularly, I suppose ironically, because the disease now takes up less and less of my time, you know, I’m only having now to go, touch wood, to hospital once every three months. I was discharged from the melanoma treatment, which is a different hospital, a few weeks ago they decided I don’t have to go back again at all. So having, it being a central part of your life, it has now become a peripheral part, and at the same time your work has become a peripheral part. And although my children are at an age where they do actually need quite a lot of help in some respects, they’re also, in a year or two, will be off. So there has been, I mean my wife’s younger than I am, she’s ten years younger than me and still mid-career really in some respects. So I’ve had to make some adjustments and think about what else to do.
Last reviewed October 2018.
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