Living with the symptoms of CLL
Most people with chronic lymphocytic leukaemia (CLL) don't need immediate treatment when the diagnosis is made. Their condition is regularly monitored by the specialist until the illness changes and treatment is considered necessary (see ‘Watch and wait’). During this time symptoms may develop or change. While some people we spoke to could live normally with their symptoms, the daily lives of others were increasingly affected in various ways.
People with CLL commonly complained of tiredness and lack of energy. Several people were not sure how much was due to the illness and how much to increasing age. A woman in her seventies complained of feeling tired from the neck upwards but her consultants didn't say whether this was a symptom of her CLL or not.
Aged 87, Alex tries to keep active but has to pace himself nowadays. He blames this on his age...
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So before you got your flu what would be a typical day for you? How much kind of activity would you do?
Alex' Yeah, a fair amount. We’ll either go shopping.
Doreen' Once a week we go shopping. Twice a week we go shopping.
Alex' And I take Doreen in the car and…
Doreen' He goes.
Alex' The trouble is Doreen doesn’t drive, and take Doreen shopping. Go round all the places with her, just pick some pieces up. And then if we didn’t’ do that I’ll go on this walk. It took me an hour at first then in the end about half an hour. And now I don’t do very much at all but I’ll be pushing myself just now to do some. I don’t believe in sitting about. I stiffen up very quick.
So you have to pace yourself a bit these days then.
Alex' Yes, I would say that, yeah.
So do you think the way you feel is entirely down to your age or could some of it be the leukaemia, do you think?
Alex' I don’t blame the leukaemia for anything. It’s just probably my age.
Alex' I won’t give in to that. It’s the last thing I want to do and I’m determined to get better.
Some said their tiredness came and went, so they had good and bad episodes. Beverley, aged 54, said extreme tiredness at times had made her feel "twenty years older" than she was, which had been difficult to accept. Sometimes tiredness is caused by autoimmune haemolytic anaemia (AIHA), a complication of CLL in which red blood cells break down, which needs medical treatment.
Maries body would suddenly go to jelly, she forgot what she was doing, and would have to rest.
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So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.
Can you describe the tiredness to me?
Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s generally your body won’t work and you get a fuzzy brain as well.
Deirdre had occasional dips during which she felt tired and lethargic.
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So presumably your symptoms sort of came on gradually after that?
Yes, I’d say for about three years I think nothing happened really. And then, as I say, one winter I got this sort of dip down. I think I might have gone to the doctor then and said, “Look, I don’t feel very good.” But she said, “Well, just carry on and if it goes on too long come back”, or “Go to the hospital.” But it eventually it worked it’s way up and then after that I didn’t really bother because I seemed to come out of these dips on my own. At first I thought, “This is it. I’m going down and that’s it.” But gradually I learnt that it was just a down. I don’t know why it, I think different people have different symptoms. Not everybody does that, you know, but it’s this, I just seemed to get over it on my own. I didn’t have to have any treatment or anything, these dips they just came and went, went and came, I think, whatever.
And can you describe to me how you felt when you were in one of those dips?
Very tired and, I don’t know, just generally lackadaisical and not sort of really wanting to do anything. I don’t think I felt terribly ill, you know, you could still get up and go but you had to drag yourself about. It was just like sort of having flu or something like that, I think, without the cold. But just feeling generally sort of not well and not particularly ill but just unwell and just very, very tired I suppose. But you could get about and do things but you just didn’t want to.
Janet said that a hormonal treatment that she had for breast cancer made her tiredness worse. Jimmy blamed his tiredness on interrupted sleep caused by feeling hot in bed. Day and night sweats can be symptoms of CLL but Jimmy said that his predated the illness and Jane couldn’t be sure that hers weren’t due to the menopause. Marie also complained of difficulty sleeping sometimes.
Other symptoms mentioned were a vulnerability to chest infections, breathlessness, palpitations, muscle cramps, aching bones and joints, swollen lymph nodes, bruising, nose bleeds, cuts and injuries taking a long time to heal, and an increased sensitivity to insect bites and stings. Jean had an episode of chest pain due to severe anaemia; Deirdre had a bout of food poisoning that left her gut very sensitive for a few months. Marilyn thought that stress at work and depression before the CLL probably added to her fatigue.
After living with CLL* for 16 years, and having had several courses of treatment with remissions...
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But you had a couple of years of watching and waiting before you had any treatment didn’t you? What was it like being on watch and wait?
When I’d accepted it after the first month I sort of got a built in strength that I didn’t care, and it wasn’t going to, I wasn’t even going to think about it. In fact, all the way through I have never ever thought about it until I know that I’m getting a bit tired where I’m not concentrating very well. And I get a pulsing in my head and I think, “I’m in trouble. I need help.” Then I will have a blood test. And also as I’ve gone on I’ve realised that I’m bruising all over my body and I then, because of experience now I know platelets are going down. So it’s only after years of having it I know the symptoms. Bruising, it has to be platelets. Pounding in the head, it has to be the red cell count going down, and the fatigue it means the white cells are going up as well. So I begin to know what’s happening to me. I know my body now.
Over time people with CLL had developed ways to manage their lives that allowed for their tiredness. Learning to pace oneself and taking afternoon naps were common strategies. Beverley said she prepared things well in advance, such as packing for a holiday, cleaning the house for guests, or just making the evening meal at lunch time. When Deirdre was in one of her ‘dips’ she would do only what she had to do and leave other things undone. Several people said that if they did too much on one day they would be flaked out for several days afterwards and have to rest more. Jane and Marie said that to counter tiredness they tried to keep as fit and well as possible; Deirdre tries to keep her mind occupied and consider those who are worse off than herself.
Jane can be active for only half of each day. She plans her life much more than before and takes...
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The first few months of being retired or semi- retired were very difficult. I eventually learned to pace myself so if I want to do something specific, like I want to go to a pilates lesson, I will make sure that I go to bed early the night before. I will be prepared to have a quick meal and a nap when I come home after it. I don’t always have to do so but I have to plan my life a lot more carefully than I did before because of the fatigue.
So what would be a typical day for you in terms of how much you could do and your energy levels?
Over the week I get about half of each day. I might get the whole of one day and not really be inclined to do much on another. If I’m not inclined to do something I’ve stopped berating myself with being lazy and just sat back and done very little, done the basic and let the world flow past me. So on the whole I get about half of a day to do something exciting like do the gardening for a little bit, you know, not heavy digging or anything, just weeding or whatever. It’s easier if I’m working on the computer but again I’ll reach the point after about three hours where I’m too tired to make any sense of what I am doing so it’s best to stop. It’s better to have a break and see if I’m better later and if I’m not better later then go for an early night, start again the next day.
If Beverley does too much on one day she feels shattered and can't do anything on the next, but...
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What happens if you get it wrong and you overdo it one day?
I’m absolutely shattered and can’t do anything. I do do it and I know that I do it and I know that I’m saying to myself, “Well, that’s your own fault”, and my husband saying to me, “You shouldn’t have done it. Why did you do that? Why didn’t you wait for me to do this?” But I then just accept that day and I may not even get dressed on that day. I may just lay around all day in my dressing gown with the heating on if it’s winter time, with the heating on. I’ve noticed that the sun and warmth help the joints, which they do with everything. They don’t help the tiredness obviously and I’ve noticed that I now start becoming breathless as well with it but I think that’s because of the white cell count and the red cell count altering that the breath, you start getting a little bit breathless with the leukaemia.
So it is a case of just accepting. It’s awful to think so but you just do have to accept those days. It’s taken me eight years now to get to that point of saying, “Right, this is a bad day. I’m going to just accept this really bad day.” But I don’t tell myself off for having done the whole garden the day before or being out in the garden the whole day, because I enjoy my garden, I enjoy doing something like that. Or if I’ve gone out with one of my children somewhere and gone, I don’t know, if we’ve gone shopping or something like that, yes, I know that that day, by the time I get back it’s going to be, the following day will be an awful day, but I enjoyed that day so why worry about it?
As a result of tiredness and other symptoms people with CLL said they could no longer do all that they used to do. They accepted that they would miss out on certain things they wanted to do. Some went out less to shop or to social events because travelling was tiring, some couldn't manage to go to things in the evenings. For some, this meant less contact with friends and family and a growing sense of isolation. Some people avoided public places at times in order to avoid catching infections. This occasionally kept Beverley away from her grandchildren. Housework and gardening were also a problem, especially for those who couldn't afford paid help and had an unwell or elderly partner. Beverley weeded her garden in stages now, whereas before she would have done it all in one day.
Janets activity levels and social life have dwindled; shopping, entertaining and driving are...
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I mean I now am no use after three o’clock except for cooking lunch. All my social activities have stopped. I used to cook for the WI markets. Can’t do that anymore, haven’t got the energy for that. I used to help run the local WI branch. Certainly now I can’t do that because I’m too tired to go out in the evenings. I tend to have put on a bit of weight. I mean I know I’m a bit weighty but I have put on more weight because I haven’t got the energy to go out because I’m frightened if I go out I can’t come back. I used to do thirteen, fourteen mile yomps and I don’t do those. I’m nowhere near.
In fact when I was suffering from the chest infection and also the lack of oestrogen it was all I could do was to go round the shops in our local town on a Saturday morning to collect and do just the shopping in the supermarket. Once round the supermarket mid-week and once round the small shopping area I hadn’t got the energy. I was delighted to see that I could walk at a moderate pace instead of just plodding recently. But now because of the continual chest infections I’m so breathless that when I came, I’m doing a patchwork, City and Guilds patchwork, a guild thing and I went back to the work room the other day having popped down to the library to get some photocopying done and a fellow student said, ‘My God have you been running?’ And I said, ‘No I’ve got bad lungs now.’
So, enough, yes my health has deteriorated. My social life has deteriorated and whereas I was renowned in the family for feeding the five thousand, and I entertained people all day, I can’t do that now. I can give them either tea or I can give them a lunch but I can’t do the whole day. So the contacts with the family are actually decreasing and I’m becoming more and more isolated.
I would like to swim but I’m frightened of going to the local pool to pick up any bacteria. If I had a swimming pool in my own garden I would love to swim. But again I need to have everything at hand so that if I’m too tired I can go and rest. My mother lives about an hour’s drive away and the roads are particularly appalling at the moment and it’s very hard driving in the ruts over to her town. And by the time I’ve got there I’m quite exhausted with the traffic conditions and the road conditions. She is not in very good health being ninety-one and I feel unable to do anything for her because I know I’ve got to drive myself back again. You could say my husband does some of the driving but no, I am such a bad traveller and I can be travel sick anywhere. I have so little confidence in him. He’s had his cataracts done recently so he does see better but I’m still frightened of his driving because he is quite a lot older than me and his reflexes are a lot slower than mine. So I don’t like being driven. I really am travel sick.
Janes tiredness forced her to retire from work and limits her daily activities. Her husband is...
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But no, I was very cross. I’ve got an awful lot I want to do. I’d never even considered retiring at this age and it’s limited what I can do. So while I make the best of what I can do I sometimes get a little bit peeved that there could be more that I could be doing for myself, for other people, for my family particularly, that it’s limited me, so just cross basically, bad tempered, grumpy so…
Tell me about how it’s limited your daily activities.
I have to plan and I have to be willing to not do things. I can get up knowing that I should go, for instance, shopping for something and just realise that there is no chance that I’m going to do it. And go around, do the minimum, go back to bed with a cup of coffee and then find I’ve fallen asleep reading a book, wake up three hours later. It’s very pleasant to be able to do that. It’s much better for me to be able to do that without having to drag myself out to work. But it is limiting, but there we are. A lot more fortunate than some I’m sure. Sometimes you find you’re tremendously with it in the middle of the night, particularly if you’ve had a bad week and you’ve had a lot of sleep and you suddenly find there you are two o’clock in the morning, you’ve got all the energy in the world and you’ve missed three things you wanted to do in the past four days. And that’s a bit irritating, but that’s when I go on the net and do some work for the CLLSA or just talk to people around the world. So at least I can still do something; thank God for the internet.
So with the two of you not too well do you have any help around the house and garden?
Some friends come up occasionally and do gardening for me about once or twice a year. Other than that we try and set things up so they’re easy care. You know, we don’t have carpets, we have hard floors. Any furnishings we have will go through the washing machine. Basically if something looks pretty but it’s got a label on it that says, ‘You must do X, Y and Z’, then we go somewhere else and get something not so pretty that’s easier to take care of.
Janet put on weight through inactivity and didn't have the energy to go shopping for new clothes. She had to cancel holidays and her reduced social life and increased isolation made her feel depressed. But she had not let her brain moulder. She did an Open University degree and other courses and is doing research to mount museum exhibitions. Some people continued all their daily activities despite their symptoms, even while having treatment. Marilyn suggests that people should try to accept the illness as part of their life.
Jimmy carries on doing everything he wants to do despite feeling tired - hell snatch forty winks...
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So how do you manage your tiredness?
Just get on with it all.
Do you pace yourself at all?
No, I just whatever comes comes. If we’re going out somewhere, well, we’re going out so I’ll just go out. I mean it doesn’t mean to say if I can’t snatch forty winks I won’t, I will, but I just get on with it. I’ve always been like that. I’m a fighter. I don’t give in to anything. But sometimes it’s the wrong thing because I put up with things when I shouldn’t do.
So is your leukaemia interfering in your daily life, you know, with the tiredness?
No, I just go on. I mean there’s jobs to be done in the house that I’m not physically capable of doing any more. How much of that is old age I don’t know but I did a job in the garage for my brother, converted a room into a toilet for customers. And I did everything bar the plastering because there’s just no way I would attempt that now. But I fitted the door, did all the plumbing as well, with help, I mean I didn’t do it all on my own, painted it all and it was great. Yeah, I was tired when I came home from work. I’d come home, I’d sit down and she said, “Are you all right?” “Oh, yeah. I feel great but I’m just so tired.” But I just got on with it. I mean there were times there when I was doing it when I thought, “Oh, I’ll have to sit down.” But I thought, “The minute I sit down I won’t get back up again to start. So carry on”. So no, in that respect it doesn’t affect me.
Beverley’s CLL symptoms were relieved somewhat by giving up work, which she did because of health problems unrelated to the leukaemia. Some people had received treatment which had alleviated their CLL symptoms temporarily. Some were enjoying a symptom-free remission when we saw them, while in others the symptoms were getting worse again. After several courses of chemotherapy and immunotherapy Michael’s (Interview LEU22) CLL appears to have been cured by a stem cell transplant. He is as fit and well as he has ever been. Stem cell transplants are not used routinely to treat CLL but may be used after all other treatments have been tried, or as part of a clinical trial. Rani says her symptoms have gone away without medical treatment; she has altered her lifestyle and used a variety of complementary approaches (see ‘Complementary approaches and lifestyle changes’).
Marilyn has recently finished her second course of treatment for CLL* and is happy that her...
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So nowadays do your energy levels fluctuate? I mean on a good day can you do everything you want to do or do you pace yourself?
Yes. Being that I’ve just had the four treatments, my energy levels have risen extremely well in the last three weeks I should think. Not as well as I was expecting but I think I was expecting to be leaping around like a two year old, which I’m not, so, you know, you have to suddenly think to yourself, “Well, no, in normal sort of circumstances you wouldn’t be leaping around.” Having said that, I’ve been down the park today with my grandson and I’ve been climbing the apparatus with him and that made me feel really good. I suddenly realised that this is what I want to be doing and that if I felt tired later I could come back and rest. So I think you have to get it into perspective of my age anyway, the fact that the leukaemia can wear you out and the chemo can wear you out.
* CLL – Chronic lymphocytic leukaemia
Last reviewed: December 2018.
Last updated: December 2018.