Leukaemia
Support from a spouse or partner
Support from loved ones is crucial in helping people to cope with cancer or leukaemia. Many people said that their husband, wife or partner had been a great support, had ‘been there’ for them and encouraged them. Some said their partner had been calm and strong, others attentive and practical. Several knew that their partner had put on a brave face at times and hidden how they really felt. Frances knew that her partner, who was generally very strong, had on occasion found things too much and had ‘crashed’. Joanna often became very upset when at home alone while her husband was in hospital.
Some people find it hard to talk about illness or to know how to help; ill people can find it difficult to accept help, especially if they are used to helping others. Elsa’s boyfriend advised her to let others help her for a change. Some people’s partners found it difficult to cope with the illness and couldn’t always give them the support they needed. In some relationships this caused conflict (see ‘Self-image, sex and relationships’). Some partners were ill themselves so were limited in how much they could look after someone else.
Marilyn's husband at first found it hard to accept her CLL* and she found it difficult to talk to him about her fears; however, since she has needed treatment he has been very supportive.
Marilyn's husband at first found it hard to accept her CLL* and she found it difficult to talk to him about her fears; however, since she has needed treatment he has been very supportive.
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Can you tell me a bit about how your husband’s taken it all and how he’s helped you or not?
He took it quite badly to start with. He didn’t really know what to expect. When we first went to see my GP and he said, “Don’t worry. She can still do everything she wants to do. This is a very low key type of cancer. You don’t need treatment at the moment”, my husband grasped that with both hands with everything. I found that was quite hard to deal with because to me it was the biggest most awful thing that had happened, whereas my daughter and my husband listened to the GP and took that on board, and they kept saying to me, “It’s not life and death.” To me they were belittling it, so that was quite hard. To them they were dealing with it as they could. That was the only way they could deal with it. So I was down there, they were sort of there.
We found it quite hard to talk between us, my husband and I, at first because I would get very upset and he didn’t really want to hear that. As the years have gone by he has been extremely supportive, giving me encouragement, coming with me to the hospital, coming in all the consultations I’ve had, all the various tests I’ve had he’s been there with me. He’s always been as positive as he possibly can. Having said that, in between he’s obviously been quite depressed about it so we’ve tried to help each other there. I had noticed that when I was very down, he was the positive one. When I came back up he would then go down, which I think is quite common. So luckily there’s been, both of us have been, one of us has been up while the other’s down. Over the last month I’d say we were both quite down, which is then quite hard because neither of us can cheer the other one up, but we’re getting over that now.
I’d say he’s been absolutely marvellous. I think with something like leukaemia, which isn’t a particularly physical thing, I think he’s dealt with better than he might have dealt with breast cancer or something that was a lot more physical and something that you could maybe see more. I couldn’t have wished really for a better response. And when you feel guilty about having something like this because of the pressure it puts on somebody else, when he was unhappy and sad I would feel that he was cross about it. And in retrospect I don’t think he was. I think he was cross because he couldn’t do anything about it.
So those are quite difficult things to get over. To actually try to say to each other, however long you’ve been together, we’ve been together for forty-one years, and there are still things that you can’t say. And that’s why I did seek help outside home and family, initially, with the counsellor that I met. And I was extremely lucky to meet her. So I could do all my outpourings there, so I was a little bit more careful what I said here, which sometimes isn’t a good idea because I think sometimes you need to just say whatever is on your mind. But if you’re aware that the other person isn’t really up for hearing it, you just hold it in and that doesn’t particularly help. But it makes you feel better that you haven’t burdened the other person, so it’s a bit of give and take and… I know that he desperately wants me to be well and that’s all that matters. And I desperately want to be well for him and me.
Jane's husband is ill himself so they have to look after each other but neither has much energy; they 'muddle through'.
Jane's husband is ill himself so they have to look after each other but neither has much energy; they 'muddle through'.
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How’s your husband coped with this?
He’s quite unhappy about it. He’s quite unhappy for me. He’s very phlegmatic about most things. He is unwell himself, so basically some Saturdays we just sort of sit there saying, ‘Make the coffee.’ ‘No, you make the coffee.’ Who’s got the energy? One of us has got to take the dog for a walk. We just muddle through. We’ve been married for a good few years and we just muddle through. He’d rather I wasn’t ill. I’d rather I wasn’t ill and I’d rather he wasn’t ill, so you make the best of what you’ve got really.
Is he a good support to you?
Oh, yes, when I am ill he’ll make sure I’m okay and I have to try and keep an eye out for him. I think the difference is when women are ill they do finally say, ‘Look, you’re going to have to get me a drink, I feel so awful I can’t make it down to the kitchen.’ And sometimes men sort of think you’re going to realise they’re really bad by telepathy, so the poor man can be there for an hour before I realise he really would have liked a drink, or he’s sweating a lot, needs a change of pyjamas or whatever. It’s all a bit sad.
What’s his illness?
He has COPD, aspergillosis, asthma. At the moment his aspergillosis is quite bad and it’s a very unpleasant infection.
Partners often feel helpless when watching their loved one suffer, but finding practical ways to help can relieve that. People said that partners had done the housework, brought them cups of tea in bed, looked after the children, searched for information about the illness, sourced headgear to cover hair loss from chemotherapy, and reminded them to take medication; some even injected drugs for them at home, such as interferon or G-CSF. Joanna got a disabled parking permit to allow them to continue to go out when her husband’s condition got worse.
Since she became ill with chronic lymphocytic leukaemia and breast cancer Janet's husband has been doing some of the housework and gardening that she used to do.
Since she became ill with chronic lymphocytic leukaemia and breast cancer Janet's husband has been doing some of the housework and gardening that she used to do.
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Tell me a bit more about how your husband has coped with you.
He said the other day apart from living on a roller coaster with me I hadn’t done some cleaning. I noticed that the new shower unit’s screens became more and more opaque with the hard water drops. And it had almost got white because I hadn’t cleaned it, and I don’t think men notice the same things that women do when it comes to housework etc. And he finally said, ‘Have you noticed the shower?’ And I said, ‘Yes. I haven’t been able to clean them. I’m just too tired.’ But I said, ‘I’m feeling better now I’m not taking the letrozole so I’ll clean them.’ And I’ve had two goes and they’re coming up all right now.
So he said, ‘You’ll have to regard me as your Molly Maid.’ Well Molly Maid around here is a kind of local cleaning service. So he said, ‘If anything needs doing you tell me.’ He’s very good. When I am particularly, when I was ill with the pneumonia or the breast cancer etc. he does the shopping. He will cook but we rely mainly on ready meals when he cooks. He’ll do the ironing of straight stuff, you know, household linen and his clothes. He will put the washing out and bring it back again, though I have to sort it before we put it through because it’s easier. Otherwise we’re going to end up with pink shirts from red socks or something like that. He does the cleaning. So if you wish to write your name on the television in the dust you’re very welcome to. He will clean the windows but I would love to have the energy to do it myself.
And he does the majority of the gardening now. I used to do a lot of gardening. I can’t bend over because I’m so breathless and also I’m too tired to do it.
Some partners had been present when the diagnosis was given and subsequently told selected friends and family on their behalf (see ‘Telling others about the diagnosis’). Partners often continued to update people on progress throughout the illness and to protect their loved one from other people’s emotional reactions. At times partners had to liaise with hospital staff and be involved in making decisions about treatment.
Joanna's husband was severely ill and on morphine when his leukaemia was diagnosed so she had to talk to staff and take decisions on his behalf; she continued to do so throughout his illness.
Joanna's husband was severely ill and on morphine when his leukaemia was diagnosed so she had to talk to staff and take decisions on his behalf; she continued to do so throughout his illness.
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But by the time he got there [hospital] he was very ill with gangrene, which was a horrible added complication, and from my point of view meant that I had to take over an awful lot of the interface with the hospital and the decision taking and all of that, because he was virtually out for the count on morphine all the time, and having operations for gangrene, which was perineal, which is not a very nice place to have it. And there were two lots of medics fighting over him, because the leukaemia people didn’t really want him to have plastic surgeons messing around, and the plastic surgeons knew they had to do something quickly or it wouldn’t work. And I was left for the first month really handling most of the interface, which actually meant I went on doing it throughout. And that might have happened anyway because I’ve always paid the bills and done all the admin, but I think it was more because he never could engage with what was going on at the beginning. So all the sorts of decisions like going onto a trial and whether to have things like whole body irradiation, and all of those things, ended up being things that he relied on me. It wasn’t that he didn’t take an interest but he relied on me to actually formulate the problem for him, sort it out and come to the decision, if it was one he was going to share, which actually was quite hard work right at the beginning.
It didn’t suit me very well because of the way the hospital is structured. I can relate to people and build up a relationship, and I didn’t realise that they change the doctors on the ward every month. You lose a consultant one month, you lose the senior registrar the next, you lose the house officer the next. Each one of them just does a three month tour of duty. Well, that absolutely threw me.
Many people found it helpful to take their partner with them to hospital appointments, not just for moral support, but also to help remember what was said and what questions to ask. Glyn’s wife took notes of the conversation. Janet’s husband usually accompanied her to the hospital but not into the consulting room. When Elsa was feeling poorly and went to Accident & Emergency she found it invaluable to have her boyfriend there to explain her medical history to staff. Mike’s wife accompanied him on courses at the Maggie’s cancer support centre.
Though in general Beverley prefers to handle things alone she has found it valuable to have her husband with her at recent consultations to help take in all that is said.
Though in general Beverley prefers to handle things alone she has found it valuable to have her husband with her at recent consultations to help take in all that is said.
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I’ve always been a person that I’ll deal with things on my own anyway. I’ve dealt with hospitals and I’ve never ever asked anybody to help, to come with me. But when I was told to attend the hospital after the consultation at Christmas with the GP, and that I would receive the hospital appointment in the January, my husband did come with me for that consultation. And he didn’t attend any of the other consultations up until the last year or so. Now that things have started to become more of a problem, he has started coming with me to the hospital just to be there with me. And yet amazingly enough when I was told last October that possibility of transplant, that was the one occasion when he couldn’t come with me and I was on my own again so… I deal with situations on my own but I do think that it’s worth having somebody else there because they’re listening. You’re trying to take it in and you do take a lot of it in but you don’t take in all of the things that they’re saying to you. And it’s very important to listen to all that’s being said. And I think that other pair of ears are essential to hear what’s going on.
People treated as inpatients said their partners spent much time visiting them in hospital and often brought food to encourage them to eat when hospital meals seemed unappetising. Some were grateful that the hospital was near their home because their partner could easily come and go. Others who were treated further away from home said their partner or other close relative had often stayed overnight in their hospital room. Julie’s partner had slept in a chair or on a camp bed every weeknight; each day he went to work at his nearby office and visited her during his lunch break. Neil’s wife stayed when he had septicaemia but he hadn’t always wanted her there.
Joanna spent most of each day at the hospital throughout her husband's nine month stay; she managed to do some work while there but found it an unusual and lonely existence.
Joanna spent most of each day at the hospital throughout her husband's nine month stay; she managed to do some work while there but found it an unusual and lonely existence.
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I spent, I remember hours and hours sitting in the room, because everybody is in a personal, private room when they’re going through all this, doing my office work on my lap at the same time as sitting there for hours and hours. He wouldn’t let me stay overnight, which was allowed by the hospital, but he said I shouldn’t, so I was endlessly bicycling down there at seven in the morning and bicycling back at midnight, things like that, which was also quite lonely really actually doing that.
And it was very long drawn out. I mean it’s a long process. If they succeed in getting through a reasonable treatment programme it’s the best part of nine months to a year if you’re doing well. And he did, so he got out, in pretty poor shape but he didn’t have serious complications in the course of the treatment. But still that’s a long time to be basically tied to a hospital. It’s very unusual now and most medical people don’t know what that’s like because they tend to have you in and kick you out again within ten days if they possibly can. So although the haematology people know, the rest of them are, you know, your GP and people like that don’t tend to deal with that sort of problem. So you’re actually sort of, you feel you’re carving out a kind of a slightly unknown route at one level.
So that was actually very dramatic and not at all easy but very, very busy so there actually wasn’t all that much time to brood about it.
Juggling the various demands of their lives alongside supporting their sick loved one was a challenge for many partners. Some managed to continue working, others had negotiated long periods off work from a sympathetic employer. While Elaine was in hospital her husband stayed away from work for 8 months on full pay to look after their children and do the housework. Although Joanna found it difficult at times to keep working, she decided not to give it up completely as she would have no income if her husband died from his leukaemia. Marilyn’s husband was retired but he stopped going fishing, cycling and playing golf to spend time at home with her while she was on oral chemotherapy. Some employers were less understanding and people had to leave their job.
Michael dissuaded his wife from stopping work; he thought she didn't need to be with him all the time and would need some respite from supporting him.
Michael dissuaded his wife from stopping work; he thought she didn't need to be with him all the time and would need some respite from supporting him.
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Can you tell me a bit about how your wife coped with your illness?
I think it was much tougher for her than for me. The implications probably sank in a lot more heavily. She was hugely attentive and supportive and alerting all our friends, my friends, her friends to what was going on and what they could do to help. At that stage her main occupation was as a volunteer remedial literacy teacher in a difficult area of South London. And one of the questions in her mind was whether she should abandon all that and one or two other regular things she did. And I encouraged her after the first week or so to return to that regular pattern of work because she didn’t need to be with me all day every day and she needed really to have some respite from the pressure cooker she could be in. So she did that and I think that all worked reasonably well for her. And I think we sat down quite logically and made sure that affairs were in order in case things didn’t work out sensibly.
She had a very good relationship with the doctors and the nursing staff and was always welcomed except by the catering manager who kept finding her using the staff microwave which only the nurses were allowed to use. But apart from that little battle that was fine.
Elizabeth's husband lost his job because of all the time he was spending with her in hospital. As she had also stopped work they were left without income.
Elizabeth's husband lost his job because of all the time he was spending with her in hospital. As she had also stopped work they were left without income.
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Overlooked I think is the financial implication it has on people really. Because it puts you in a position where basically not only can you lose your own income but also if you have a husband who sort of says, right, he has to be in hospital with you and look after you, you have this sort of implication. And we had that problem really because where my husband was working really they weren’t terribly sympathetic and told him, “Well, if you can’t come into work you haven’t got a job.” And he decided that being with me was more important than going to work really. And he couldn’t concentrate on working, and thank God all this has sorted itself out and he’s very happy now and everything, but it was a big problem at the time.
Some people with leukaemia believed that dealing with the illness could be at least as hard for partners as it was for them, because partners had to deal with all the consequences while watching their loved one suffer. Some people felt guilty about the amount of stress their partner was under. Some had to cope with the illness or death of a parent at the same time. Elaine felt sorry for her husband because his mother had died of cancer five years previously, in the ward that she was in.
Joanna says partners cannot fully empathise with their sick loved one as they don't know what it feels like. Coping with her mother's death at the same time as her husband's leukaemia was tough.
Joanna says partners cannot fully empathise with their sick loved one as they don't know what it feels like. Coping with her mother's death at the same time as her husband's leukaemia was tough.
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Again, I took the initiative almost completely because I’d got the sort of calculating side of these things, not the day-to-day living with it, which I think is very hard to understand when you’re not the person living with it, with the absolute threat that this is life threatening. I think actually that’s one of the hardest things about looking after someone is that you know that your whole attitude to the whole process is different and you don’t know how to get into it, and frankly you don’t even want to at one level. You don’t want to be confronted with that for yourself. And you feel bad about not wanting it, and you feel you should be able to empathise at their level but you can’t, well at least maybe some people can but I think they may be kidding themselves.
So what was the worst time for you?
I think possibly the last bit of heavy duty chemotherapy where we were told to get my son home from China, so we did. And it was all happening at exactly the same moment as my mother’s memorial service. And he couldn’t be there and wanted to, and I had to be there and didn’t want to, if you know what I mean. I think that was a pretty bad moment actually. Because I mean she didn’t live far from me and so she’d been a very constant presence in my everyday life, and for years, not necessarily always smooth and easy, because these things aren’t, but there was going to be a big gap, whatever. And to have him apparently about to die as well, simultaneously, was not very good either, which didn’t happen then but, there was a conscientious registrar who said, “I really think you should get your son home.” And maybe the consultant would have been slightly different about it, I don’t know. But I don’t feel he made the wrong call; I think it was the right thing to say. And my son was going to come home anyway for this memorial event, but it wasn’t going to be quite so quickly. It was going to take a few more days or a week or whatever. It was new air fares. Panic introduced into the system, you know, so…
Many people with leukaemia recognised that their partner needed support of their own and were comforted that they had family and friends to turn to for help. For instance, after spending the day at the hospital with her, Frances’ partner would sometimes have a meal and a chat at a friend’s house.
During her illness Elaine's husband received supportive telephone calls from his father, brother, friends and colleagues, and was offered counselling at his workplace if he wanted it.
During her illness Elaine's husband received supportive telephone calls from his father, brother, friends and colleagues, and was offered counselling at his workplace if he wanted it.
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Do you think he had people to talk to about his fears and worries?
Yes I think he did. I think he did. He’s quite close to his dad who lives in Australia but I think he spoke to him a few times. His dad kept in touch. He would phone, obviously to see how I was as well, and he offered to fly over the day that he found out, and, my husband’s like, ‘There’s nothing you can do so there’s no point.’ But I think he spoke to him a few times and he has a brother down in England and I think he spoke to him as well. They kept in touch a lot with him, and obviously friends up here as well popped in to see him and phoned to see how he was keeping. And the work as well, his work were very good, they would phone up and ask how I was and how he was, and stuff like that. And if he wanted to talk there were people at his work he could go and speak to as well.
While Deb was in hospital, his wife received help with childcare from his colleagues and others in the local community. They later decided to send the children to live with family in India; his wife now divides her time between looking after him and visiting the children.
People whose partners die from leukaemia can be affected by the loss of their loved one for a long time.
Joanna has felt exhausted since her husband died and because of other family commitments has not had time to decide how to reshape her life or grieve properly.
Joanna has felt exhausted since her husband died and because of other family commitments has not had time to decide how to reshape her life or grieve properly.
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So how has life been since then? It’s been a few months hasn’t it?
Well, it’s been non-stop roller coaster with other family affairs unfortunately. I mean those were two sad things' that one of my sons got married shortly after he died, and then my daughter had these twins and has moved in with a family of six, which actually means that my biggest problem is not having had time to think about who I would like to be now. Because that’s been my biggest thing, is that I’ve had my own life on hold for ten years, in a sort of funny way, because it’s always been focused on what happens next to the people round me. And it’s still like that with six of them downstairs it’s hardly not going to be any different. And that I do find hard actually. That’s probably, you know, I no longer know how to work out who the hell I am and what I should be doing for me, and in developing whatever else is left of my life into something that I could say is my own as opposed to a support system.
And that’s not comfortable. But I mean it’s nobody’s fault. It’s the way life is.
And did you feel you’ve dealt with the grief?
No, not yet. No, I mean I think that could take quite a long time. I mean I don’t let it, I don’t imagine it’s less than two years at the least, but I think because it’s had to be sort of chopped up and postponed and parcelled out, it may be much less tidy in some ways and much, much more sort of bitty.
Some people were single or widowed at the time of their illness and had no one close to confide in. One woman was glad she didn't have a partner at the time because several people shared the burden of her illness, rather than just one.
Aley was single, his family were all in Pakistan and he found it difficult to deal with his illness alone; at times he felt very low and tried to speak to his GP about it but couldn't access him.
Aley was single, his family were all in Pakistan and he found it difficult to deal with his illness alone; at times he felt very low and tried to speak to his GP about it but couldn't access him.
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The only thing that was very, very hard for me was to go through it all by myself. I did not have any emotional support. And after the transplant I felt very low. I felt very, because I was alone, I was literally lonely, very, very, how can I explain? It’s a very hard thing to put into words, but I was left alone completely. Obviously, my family was not here and then I had to support myself, as my brother, as my sister, as a family member, in one way, and then talk to myself and tell myself to calm down and support myself.
In the hospital and right after the transplant for at least four months I literally had nothing to do but to lie on the bed, listen to the music maybe sometimes, but watch the ceiling of the room. I literally had nothing else, nobody to talk to. Nobody to come and ask have I eaten or not, you know, things like that. Friends, some of my friends were very good but of course you can’t put everything on someone else, so you have to be… But emotionally I did get very, very low after the transplant. I think that was a time when support would have been vital for me but of course I didn’t have support so I supported myself. Maybe it’s very easy for me to say it right now, but it was a mission. It was a very, very hard thing to do, telling myself that, “Don’t worry. I’m going to be all right”, when I know that I might not wake up tomorrow. I was so poorly, used to be very, very poorly ill. Couldn’t even go out for two minutes and I had to go out buy the groceries, come home.
And I went to see my GP once, on those days, and my GP was not there so I tried to book an appointment, which you can do in the NHS, you can book a next day appointment. And the receptionist said that she can’t book me. And I was feeling so helpless and so hopeless or whatever. I said, “I’ve just been transplanted.” And she said, “On the screen it doesn’t say that you have any priorities over others, you have rejoined the queue.” At that time I felt, “What should I do? Where should I go?” I said, “The tablets I take, they don’t allow me get up at 7 o’clock to give you a call and book the appointment.” I said, “I cannot get up before 10 o’clock. Your appointment system closes at 8.45”. She said, “I can’t do anything about it.”
Being single Gilly was glad that no one person had to cope with the emotional trauma of her illness but it had been shared between a number of friends. She had asked a staff member to be her advocate.
Being single Gilly was glad that no one person had to cope with the emotional trauma of her illness but it had been shared between a number of friends. She had asked a staff member to be her advocate.
Sex: Female
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I think the other important thing to say is the fact that I live by myself. And what I realised, which is a really strange thing to say, is that I found it better not having a partner. And the reason was that I have had so many people and friends and communities helping me doing little things, it has meant that not one individual has actually been completely embroiled in the emotional journey that they go on. Each of my dear friends, my very close friends have been, I think, very, at times, emotionally devastated by what’s happened to me. But in a way it’s been carried by many, many, many people. And I can remember at times, going through the ward when I was in hospital and watching relatives and you can just see they were devastated by their loved ones, and the drama that that causes. So there actually is a real upside to being single, many, which, in a strange way, if somebody had said that to me two years ago I wouldn’t have thought that. But I found that that’s been really helpful.
And the other thing is if you find that there isn’t a family member, then I would just ask the staff and say you wish for an advocate, you wish somebody to come and to be, and that’s eventually again I said I kind of, I’m single. My God, how wonderful. And at one point when I found things got very complicated I actually asked for one of the members of staff to become my advocate so that they could, I could kind of say to this advocate what I required, and that they in turn could interface with the medical team.
Because again, being single has got wonderful advantages but at times when you’ve had a really bad experience, maybe, you know, you’ve had a huge reaction to the drug or you’re in pain or whatever and you just want to scream and yell, and at times I was unhappy with what had happened in a particular procedure, you then have to try the next day and say, “Look. I wasn’t happy”, and it gets very convoluted. So I would advocate getting an advocate, if that makes any sense.
* CLL- Chronic lymphocytic leukaemia
Last reviewed: December 2018.
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