Leukaemia
Work and daily life
Treatment for acute leukaemia requires spending long periods in hospital, so people who had been working had to take extended sick leave from their jobs and work had to be handed over to colleagues. With time spent recovering at home after in-patient treatment, absences from work typically lasted several months, sometimes over a year. Many people went back to work after their illness, but after such a long break that could be challenging, especially because people had less energy and tired easily. Most had returned on light duties at first or part-time and gradually increased their hours. Joanna turned down work projects for her self-employed architect husband while he had been in hospital because he might not have been able to finish them.
After 18 months off work Ann returned part-time at first then full-time; working mornings helped to get her back into the routine of getting up and commuting to work.
After 18 months off work Ann returned part-time at first then full-time; working mornings helped to get her back into the routine of getting up and commuting to work.
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Did you go back full time straight away or did you phase it in?
There’s all sorts of different things you can do to get yourself back to work but I was at the point where I’d exhausted all my sick pay. So what I did was I went back and I just worked mornings. But I’d got a lot of holidays so I was taking the corresponding afternoons as holiday. But I was literally, the first few weeks I went to work in the morning, came home at lunchtime and I went to bed until about four o’clock when my husband came home from work. I did that until about the Christmas time and then I went part-time. I just did five short days. Because in a way you do get out of the routine of getting up, getting ready, getting in your car and driving to work, and that’s what I had to get used to doing it five days a week. So I did that for I think about eight months. Then I went back full-time and I’ve been full-time ever since.
A few people managed to do some work during treatment or while recovering at home and before formally returning to work. For instance, a business consultant started working at home and attended two international conferences in countries for which he needed no inoculations. His office was near his home but when he first returned to work he took a cab until he was strong enough to walk.
Deb did some work from home before returning to his office, which helped to prepare him mentally and prevented him worrying about his health. He was proud of what he achieved in that time.
Deb did some work from home before returning to his office, which helped to prepare him mentally and prevented him worrying about his health. He was proud of what he achieved in that time.
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But anyway, I just started working. I started reading books, maybe story books and also started reading what is happening in the industry. I started writing again. I started helping my company out and my colleagues who were in the project, who were in India, advising them with a lot of new concepts. So I started working from home and I found that, working, keeping myself busy it actually helped me a lot to keep my mind away from all the bad things. If you don’t do anything then probably a lot of bad dreams come, that if something happens to me what is going to happen to my daughters? What is going to happen to my wife, my parents? My parents are still alive so definitely they wouldn’t like to see their son dying when they’re alive. So all these things I kept on thinking, so rather than keeping them, those things are not kind of healthy things, which I felt, so I kept myself busy with other constructive stuff. And then once I started seeing my articles had been published in some very famous industry journals that gave me a lot of mental boost. And during that time then slowly, slowly I started recovering my strength. I kept on visiting the hospital pretty often. Then that frequency also reduced.
During that time there was a call from Zurich, some European conference in software architecture was being held in Zurich and they selected one of my papers to go and present there. But at that time I was pretty weak but I had a consultation with the doctors that, “I have written this paper and then I want to go and present it in Zurich in Switzerland, so is it okay?” And they had gone through some tests and they checked my health and then ultimately they decided that, “Okay, you can go.” So I and my wife went to Zurich. I presented the paper, and incidentally that paper won the grand prize of the conference. That was kind of good. And once I went and came back to the hospital, in the next visit, I told them. I called up the nurses and then the transplant centre and told them, “This is what has happened.” And they were very, very happy, and so next time when I visited the hospital they said, “We all cheered for you. It’s kind of a success for us.” I said, “Definitely I owe my life to you all.”
Then this thing happened then I joined full-time to my company and I started working full-time. Initially I kept on working to the local office where I could just walk from my home. Initially I used to take a cab to go to the office or a bus. And then I started walking to the office, slowly a bit, started building the strength.
Keeping in touch with work during hospital treatment enabled Michael to return to normal work performance within two months of hospital discharge; he later wondered if he'd gone back too soon.
Keeping in touch with work during hospital treatment enabled Michael to return to normal work performance within two months of hospital discharge; he later wondered if he'd gone back too soon.
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I managed to continue operating at usual capacity probably within two months of discharge from hospital I felt I was back as much as I had been. And then I reread some of the literature and saw the advice that people undergoing this sort of treatment should expect to return to their normal work routines steadily over perhaps twelve months or so. So I used that as a reason for going to my employers and saying, ‘Actually, perhaps I came back a little bit prematurely, and as my daughter will be getting married in America in mid-November I want to be there for that and I’d really like to stay in America through to Christmas that year, and so take a bit of delayed convalescence at the end of the year.’ But that was for personal convenience rather than because there was any great need in my own mind for it.
Once I got back a reasonable degree of physical strength, I found there was no problem about finding the mental energy to do what I’d done before. And part of that was that I had stayed in touch with what my working role was throughout the period of being under treatment. I think it would have been much more difficult if I’d cut off completely for that period of 6 months and then coming up to 59 it might have been much, much more difficult to get back into and much more difficult for my employers to see any logic in my getting back to it probably.
Some people said that returning to work made them feel normal again; Deb said it was like ending a jail sentence. Achieving remission from chronic myeloid leukaemia (CML) enabled one woman to return to full-time education and pursue a professional career.
After her CML* diagnosis she stopped work but later returned to an undemanding part-time job; once in remission she studied for a higher degree to enable her to become a professional.
After her CML* diagnosis she stopped work but later returned to an undemanding part-time job; once in remission she studied for a higher degree to enable her to become a professional.
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You said at the beginning when you were diagnosed you stopped working.
Yes.
So at what stage did you pick up working again? Tell me all about that.
Okay. I stopped working sort of three or four months after the diagnosis because, as I said, I just wanted to concentrate my entire energies on getting better. So I think it was a period of three years before I actually stepped back into the world of work. It wasn’t instantly sort of work. Yes, it was actually. It was. So I think I started working again in the October or the November of ’98, so from April ‘97, no it wasn’t. Not three years, sorry it was just a couple of years. So April ‘97 I stopped working and then I got back into work in November of ‘98. But it was very, how do I put it, it was very non-demanding work. It was just maybe working three or four days a week as a sort of administrator, or a junior administrator, at a university department, so it was very non-taxing in that sense.
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 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, “The disease has actually stopped still in it’s tracks”, rather than the danger of it 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, 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 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.
Others found coping with work tiring and difficult so they changed their job or gave up work altogether. For instance, Julie felt that her employers had been understanding at first but not for long; they had expected too much from her and the commuting was exhausting. Her husband persuaded her to take a less stressful job closer to home.
Julie was pressed to return to work so at first worked 10 till 4 to avoid rush-hour commuting, but after going full-time found it too tiring and stressful so took a less well paid job locally.
Julie was pressed to return to work so at first worked 10 till 4 to avoid rush-hour commuting, but after going full-time found it too tiring and stressful so took a less well paid job locally.
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What happened about your job?
I had 14 months off of work and it was now time, they were kind of putting the squeeze on me, if you like, ‘When are you coming back? When am I coming?’ Because obviously now after having 14 months off I wasn’t any longer being paid. And even though I lived at my home with my parents you still have outgoings, car, life etc. So I thought another good thing to get back to, as I say, I wanted the normality, I will go back to my job. So I’ve mentioned to my doctors that I’m thinking of going back to work and they were like, ‘What do you do?’ And I said, ‘Oh I work in the back office to a major German company here in London.’ And they were like, ‘No no, you can’t go back to that. You can’t do the travelling.’ And I was like, ‘Yes sure, it’d be fine, it’d be fine, I’ll do it. I’ll do it. It’ll be fine.’ And they were like, ‘No we really don’t think you should.’ And I said, ‘Well can I at least try?’ And they said, ‘You can.’
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 10 till 4 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’re 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 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, 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, ‘Okay. We’ll give it a shot.’
And it’s now been nearly 6 years since I’ve worked in London but I quit. Again an emotional time because I was in my 30s then and I’d been in London since I was 16 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 the salary difference was amazing. But I was well. It wasn’t the travelling, the stress of 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 it being at home by about what? Quarter to four in the afternoon. That was amazing.
Others decided to leave their jobs for other reasons. Ian quit police work after deciding that it wasn’t fair on his family to risk his life again through work, and after a period as a househusband he retrained as an occupational therapist. He turned his leaving party into a fundraiser for the haematology ward where he had been treated. Although his employers wanted him to stay, Michael, a charity director (quoted above) decided to retire at age 60, a year after returning to work, because his future health was uncertain. One woman had started a new business; Neil was restoring an old house with friends.
Some people never returned to work after treatment, either because they knew they couldn’t cope with it or they wanted to do other things with their life. Dianne knew that her joint pains and lack of energy meant she wouldn’t be able to do a full week’s work. Elizabeth decided that if she survived her acute leukaemia she would focus on being a full-time grandmother. Elsa realised there was more to life than her business so she sold it and took up voluntary work.
Thelma's AML* has receded but not enough to be classed as remission; she has lost strength and has breathing difficulties. Realising that she could not return to waitressing work she retired.
Thelma's AML* has receded but not enough to be classed as remission; she has lost strength and has breathing difficulties. Realising that she could not return to waitressing work she retired.
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So at what stage did you decide to give up work, because you were still working when you were diagnosed I think?
Well I had to, I couldn’t work any more. I couldn’t go to work, not even, because I was, they said, ‘If you want to come in for one day you can come.’ I just, I lift up trays. I just wouldn’t, I wouldn’t hold up to it. I wish I could have done. No, even when I was at my best and could walk, get out, walk and everything, I still couldn’t have gone back to that job, not holding the trays and everything, no. If I’d have been in remission I could have done. So I couldn’t go back. With the best will in the world. He said, ‘Would you like to come back for a day or two?’ I said, ‘I couldn’t do it.’ I said, ‘I just couldn’t do that. I couldn’t do it.’ So no, I wasn’t at that point where I could go back. If I was sitting behind a desk, anything like that, yeah, at the time, but then my breathing, my breathing got bad. When I had that pneumonia that’s when my breathing went, took a detour, you know, getting the pneumonia. That made the breathing a lot worse. It weakened the lung, because it wasn’t like that. But I can still, as I say, I can get about but I have to stop and start. Yeah.
So you’re not as physically strong as you were?
Oh no. No.
Although treatment for chronic lymphocytic leukaemia (CLL) rarely requires long hospital stays, some people found that their symptoms reduced their ability to perform well at work, and therefore retired early. Jane was taking too many sick days and her employer wouldn’t let her go part-time. Marilyn went part-time before stopping altogether. One man had to give up work when he was spending a lot of time in hospital and wasn’t expected to survive. Others gave up their jobs because of other illnesses; Beverley said that doing so had relieved her leukaemia symptoms too.
Marie worked on boats until her CLL* symptoms started to affect her and she found the work too physically demanding. She gave up work at age 64 but returned 2 years later before retiring again.
Marie worked on boats until her CLL* symptoms started to affect her and she found the work too physically demanding. She gave up work at age 64 but returned 2 years later before retiring again.
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Were you still working when you got your diagnosis?
Yes.
So how did your illness affect your work?
Well, when I was first diagnosed it didn’t affect my work at all because I wasn’t having any treatment and it wasn’t bad, and I was working continually. But then when I started my chlorambucil, just before I started chlorambucil I found that, at the boat yard we used to turn 29 boats round on a Friday and on the Saturday there’d be about 20. Monday the same thing. And before I could get through Saturday, Sunday and Monday without any problem, but then I began to find that I was absolutely exhausted climbing on and off boats. And I was having back trouble and leg trouble, all sorts of troubles because of the jumping, and it was then I realised I was getting near my treatment so it was beginning to affect me. I found when I was stock-taking I didn’t always count right. I had to keep going over and over what I was doing because I couldn’t get it right, and little things like that, so it did begin to affect me and I finally told them, I was working at [town] at the time, and I told them, “I think it’s time that we trained somebody else. I think I have to go”, because I just couldn’t cope any more. It was too stressful and too much like hard work.
Yes, I gave up work finally and I started looking after my grandson. I did go back three years ago to a nearby boatyard. They came and asked me if I could be supervisor because they couldn’t get anybody to do it and they knew that I was already trained to do it, and I went down and did a year with them. But I had to tell them that there was no way I could go back and do it again. Apart from the fact I was so much older to be doing that kind of work.
Many people who had to give up work because of their leukaemia said it had made them feel sad, depressed or angry. Some had closely associated their identity and self-esteem with their job; others had enjoyed their work and had been good at it and missed doing it.
Marilyn was angry at having to give up work because of her CLL*. She felt guilty about not earning on days when she felt well but could not predict when these would be or when her remission might end.
Marilyn was angry at having to give up work because of her CLL*. She felt guilty about not earning on days when she felt well but could not predict when these would be or when her remission might end.
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I think work was the most difficult thing. That I found very hard to have to give up that, found that very hard, and it was quite a while before I could close the door on that. I felt quite indignant I suppose, in a way, that I couldn’t carry on the same as I was, and I suppose that that’s how the illness affects you unfortunately.
Do you think you were angry?
Oh, extremely angry. I felt very guilty, I felt very angry. I felt extremely angry at the work side of it because I felt it was just so unfair. And I tried never to say those words because I think if you consider something’s unfair that you feel as if someone else should have it. It’s what children say. But I felt it was unfair the work side of it because I was giving up something that I really liked.
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 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. I hummed and hahhed about going out and doing a few days here, a few days there, 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, 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. I think I’d find it very hard mentally to adjust and I think I’d make myself ill again, and that’s quite hard to take on board as well, because I feel that I’ve got things, I can use a keyboard, I can type, I can do office work, I can do loads of different skills, but my work confidence isn’t very high. As I see myself now I’m confident, but to go back to work I don’t think I could.
So that’s a definite down side because I see quite a few little part-time jobs that I think I could do. But the trouble is nobody can tell when the illness is going to come back with a vengeance and when it isn’t. And you’ve got to be reliable so I think that equation is out of the question really now. So the onus is a bit on my husband, which is quite hard.
Some people who gave up work also had to stop doing certain hobbies or other daily activities for the same reasons. Others had already retired before their illness but found it difficult to continue to do everything they used to do. In addition to retiring from waitressing Thelma can no longer do all her housework and has to rest more. She has also stopped holidaying abroad because of the risks of flying when her platelet count is low. Difficulties in getting suitable travel insurance were a problem for her and for Len who can no longer spend the whole winter abroad (see ‘Finances’). Jane stopped going to the gym because her tiredness prevents her from doing much exercise and she can no longer afford the membership fee now that she has retired. Some had limited their social life or hobbies to avoid the risk of catching infections from others.
Mike had already retired when he developed hairy cell leukaemia. His symptoms made him drop some of his voluntary committee work.
Mike had already retired when he developed hairy cell leukaemia. His symptoms made him drop some of his voluntary committee work.
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Were you still working when you had your illness?
No.
You’d already retired?
I’d taken early retirement. Happy to. Should never have been a solicitor but I was and so when the opportunity came I said, ‘No I’d like to try for retirement.’ And I got it and so I went.
So how much did your illness interfere with everyday activities?
Well my illness was not apparent until it was actually diagnosed, although I’ve described how the symptoms made me less able or willing to do things. I suppose I’d come down an element in what I was doing but post-retirement I’d got very involved with the Scottish Inland Waterways Association, and I was secretary when I had the diagnosis, and so I dropped that. I dropped a committee for the Episcopal Church which I was engaged upon, which was the development in church terms within the south east wedge, which is a development of the city on the south east sector. And that would have been quite promising to have gone on with. In a way I look a bit fraudulently at it now but equally I’d done my whack and put a bit in so I think it was probably as well to let other people take it over.
I’ve come back to do church things. I don’t do anything officially for the canal people now but we go out with the boat from time to time. So in a way I’ve just sort of come down a notch or two. I’m less prepared to take on the administration of things but then in things like Leukaemia Care I’ve added a lot more that I’m doing positively.
By contrast, other people were looking for or had taken up new activities or hobbies after their illness, such as writing, learning the guitar, or community work. Many were doing voluntary work for leukaemia charities or the Citizen’s Advice Bureau. Some were looking after grandchildren. Deb, a Hindu, had started attending church because he is grateful for other people’s prayers during his illness. Rani studied Buddhism and trained as a healer.
Elsa sold her business after becoming ill and now does voluntary work for a leukaemia helpline, the Citizen's Advice Bureau, and gives talks for the blood transfusion service and a stroke charity.
Elsa sold her business after becoming ill and now does voluntary work for a leukaemia helpline, the Citizen's Advice Bureau, and gives talks for the blood transfusion service and a stroke charity.
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So as part of getting your life back you’ve started some voluntary work haven’t you?
Yes, yes. I have. I do Leukaemia Care and they’ve just asked me actually, I’ve got a letter from them this week to ask if I would do the phone line, out-of-hour phone line, so for their… And I’ll enjoy that. I will like that. And I do the CAB, Citizen’s Advice Bureau, so I do that and I enjoy that. And if I can help anybody I will. I do talks for the blood transfusion. They’ve asked me. And that involves, it’s nice, that is, I do enjoy that one. I love it. I was petrified. The first time they asked me to do this I thought, “Right, okay. I shall do it.” And it’s in front of 145 people to do a talk. And I thought, “Yeah, that’s fine. That’s okay.” And then, when the day came I thought, “Why, why have I done this to myself?” However, it’s just so fulfilling to actually thank somebody for giving blood. And in this country you do that for nothing. Somebody gives you life. They gave me my life and I’ve got that back. And I just love doing that, so I do it now every six months because it’s an award that they have for giving 80 pints of blood, or 100. And it’s just a lovely thing so I enjoy that. And I do talks for the stroke unit as well, so I do talks for that. So that’s, I suppose, that’s a charity and that’s bringing in some money for the charity, Stroke Busters, our local charity. So yeah, I seem to be doing a lot of charity work, yeah.
People who had few or no symptoms from their CLL said the condition had so far not affected their daily activities. Luke’s hairy cell leukaemia had been treated so quickly that the illness only briefly affected his life.
Before being diagnosed with hairy cell leukaemia Luke felt too tired to do all his usual post-retirement activities, but his treatment only lasted a few weeks, after which he felt better.
Before being diagnosed with hairy cell leukaemia Luke felt too tired to do all his usual post-retirement activities, but his treatment only lasted a few weeks, after which he felt better.
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How has having leukaemia affected your work? Were you still working when you had it?
‘92, 50, no, I think I’d just finished, I had to retire because of ill health anyway. No, I had just retired so it didn’t. The tiredness side, of course, meant that while I was doing other things, because when I retired I knew that I couldn’t just retire, I had to do other things, and one was, not actually work again, but do other things that I’d never done before, so I was doing courses and joining things, so the leukaemia did affect that because I didn’t feel up to doing it. But, as I said, the whole thing was over within a matter of weeks, so it’s just remarkable really how little impact in the end it had.
* AML - Acute myeloid leukaemia
CML – Chronic myeloid leukaemia
CLL – Chronic lymphocytic leukaemia
Last reviewed: December 2018.
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