Although symptoms depend on the type of leukaemia, most people with acute leukaemia tend to feel generally unwell or run down, accompanied by any of the following:
• tiredness, breathlessness and looking pale (due to a lack of red blood cells),
• frequent infections (due to a lack of white blood cells),
• unusual bleeding or bruising (due to a lack of platelets).
Patients with chronic leukaemia may have some or all of these symptoms but often are diagnosed by chance when having blood tests for other reasons.
People found it hard to describe their sense of feeling generally unwell. Elaine said, 'I just didn’t feel quite right'. Neil said that one day when he was driving he knew he shouldn’t be on the road. It could be difficult to distinguish between symptoms of illness and the effects of stress, the menopause or natural aging, and often the significance of certain symptoms was recognised only in hindsight.
Ann is a civil servant. She is divorced with no children. Ethnic background' White British.
It was January of 2000. I got married the previous year in the August and I just started generally being unwell. Various little niggling problems but nothing that I could put my finger on until about the March, and I suddenly had a really bad attack of tonsillitis. I got rid of that. I had to be off, I was off work for quite a few days with it it was that bad. I then got another one in the May and I had problems with my ears and generally was just extremely lethargic, couldn’t get out of bed. There was nothing that they could tell me that was the matter apart from they were possibly going to remove my tonsils, which I was arguing against and said I didn’t want it to happen. I was given antibiotics, which I was allergic to.
And then I went back to see my GP. When I went to see him he actually sort of said to me, ‘I think we’d better take a blood test.’ And it was a bank holiday Monday that I was very, very ill and I actually had a rigor but I didn’t know what it was, to do with basically my body fighting the infection. The following Thursday I distinctly remember that my appointment at the doctor’s was at half past three. I had a blood test taken at half past three in the afternoon, at quarter to nine at night I got a phone call telling me to pack a bag and go in to the local hospital, which I did. I was just about to go to bed at the time so I do get very grumpy when I’m tired anyway so I wasn’t in the best of humours.
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Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic background: White Welsh.
I think we should start maybe back in around July or August of 1999, when my life was a bit hectic, to be honest with you, I was very busy at work as a detective constable and then acting detective sergeant in the police force, which was dominating my life at the time, it was everything.
Family life was really difficult because of that and my wife actually moved back to [town], she’s from [town], and we didn’t split up, but we were really struggling to live up in North Wales together, and work and the language issues and lots of other things were making life difficult for us. So she’d actually moved down to [town] leaving me up there working on my own and coming down here on weekends or whenever I could, really.
And it just got to be very, very stressful, all the lifestyle then, and I ended up going to the doctors. Foolishly, I think I mentioned the word ‘stress’, which they sort of seized upon, and said, ‘You’re obviously stressed. Take some time off, you’re ill.’ Over the next few weeks my health just kept deteriorating, the doctors kept saying I was sick, I had pleurisy, I had all sorts of symptoms but nobody mentioned cancer, nobody mentioned leukaemia.
The tiredness that some people had was different from any they had felt before. Dianne called it ‘a very peculiar type of tiredness’. Janet said it felt as though her batteries were run down. Several felt lethargic. Many had struggled to get up in the mornings or to stay awake during the day. Some were exhausted when they got home from work and had collapsed on the sofa and slept. Jane, a teacher, had not felt rested or refreshed after the school summer holiday. Tiredness often interfered with people’s ability to do their normal daily activities, and some people could not cope with normal levels of physical exertion, such as playing sports or rambling, and assumed they had become unfit. One woman felt so unfit that she employed a personal trainer. Gilly said she felt as if she was walking through treacle. Some people also became breathless, for example when going upstairs or rushing to catch a bus.
She is a shopkeeper and businesswoman. She is divorced with one child aged 11. Ethnic background: White British.
I’d had a pretty miserable marriage. Came out of it and really spent some time getting my life back together. I sold a property in London so I was ready to do things I wanted to do. But I was tired, seriously tired, and I couldn’t understand why because all my worries and stresses had gone. I was divorced, the husband had gone, I’d got a super new chap in my life and money which meant I could do what I wanted. And so I got a personal trainer, I thought I wasn’t fit enough. And I remember him saying one day, ‘Come on you’re just not trying hard enough.’ And I was giving it my all. I’ve always been sporty. And friends said, ‘Ah yeah but you’re getting older.’ And I thought, ‘No.’ You know, Margaret Thatcher survived on four hours sleep a night and I’d always been a night person.
There was clearly something going on and, yes I was a mother but by four o’clock in the afternoon I actually couldn’t get upstairs. I was crawling on all fours. I fell asleep reading to my son every night. However many people told me I was fine, I was not fine. I remember going to one friend’s house and she said, ‘How are you?’ I said, ‘I’m exhausted.’ And she said, ‘Oh people don’t really want to know how you are.’ It was so so hard to get out of bed. I knew there was something wrong.
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Rani is a home maker. She is divorced with one child. Ethnic background: British Asian.
About a year before I was diagnosed with leukaemia I was feeling down, under the weather, like, and not feeling quite all right. And I actually went to my GP and said, “I don’t have that energy which I used to have”. And he teased me about it and said, “Ah well, you’re getting older now, aren’t you?” But I knew something was not quite right inside me but could not pinpoint what it was and I felt my energy level had gone down. And I was not coping well.
What do you mean not coping? How did that manifest itself?
It was a bit of a struggle to get through well all the things I need to do and I had to put in so much effort. And there were times when I felt “Oh no, do I have to do this?” Like that, you know, sort of not quite up to it, that feeling I had.
So what did you do next?
Well then of course I was still at that time looking after my mother as well, and her condition got worse and worse. She had a minor stroke and then in August she had a big heavy one and she needed quite a bit of help to go up the stairs. And I remember one day she went, there was only one more step for her to do and she just refused, I’m not sure if she lost courage or she felt she couldn’t do it any more, and I had to literally pull her up, and she’s heavier than me and it took, it was hard work, and she needed so much care and constant attention, what with looking after my daughter and doing all the things. And I felt very irritable I should think. I was getting cross with everybody too. I was just trying to do so many things at the same time, getting cross with my mother as well.
Many people reported having frequent coughs, colds, viruses and ear infections that kept recurring despite antibiotic treatment. Thelma had an eye infection, Ann a boil on her leg, and Jeff had an infected navel. Ann also had continual vaginal thrush (a fungal infection) that would not go away despite using antifungal creams and removing all yeast-based foods from her diet.
Frances is a Project Manager. She is in a civil partnership and has no children. Ethnic background' White Scottish.
Okay. I’m somebody who’s generally always had pretty good health. Never really had any health problems. And I think when I started my job, my job’s got quite a lot of stress, and I used to always find at the end of the year, you know, between maybe October and December, that’s when I would feel quite run down. And what happened in 2004 was the start of 2004 I noticed that I was getting lots of niggly colds and flus, things that I would never normally get.
Also I started getting throat infections and ear infections, again things that I’ve never ever had. And I just kind of put it down to the fact that I’d had a very stressful year before and my body was just adjusting. Maybe I was just a bit burned out. But it just, it never ceased and I mean I look back now and I think, ‘Why did I not go to the doctor? Why did I not phone the doctor?’ But I didn’t. I just kind of put it down to, ‘Oh my immune system is a bit knocked because I’m burned out, I’ll take vitamins’.
Some people complained that minor injuries were slow to heal. Others had bleeding gums or unusually heavy menstrual periods. Chanelle had a blood vessel burst in her eye causing visual problems. Often the smallest knocks caused large bruises and some people developed a rash of purple spots on the skin.
Michael is a retired charity director. He is married with one adult child. Ethnic background: White British.
I guess this story starts on the 8th of September 2004. That was the day when, under pressure from my wife, I called my GP in London about a little problem that did not seem like a medical emergency. And this arose from a few, a couple of weeks earlier I’d been out of town on holiday, among other things tending the couple of roses that we have in a little garden in Dorset, and they’d scratched my hands a bit. And when I got back to London I noticed that the scratches weren’t really healing, so I thought, ‘This will go away in a day or two’, and after a week it hadn’t. So my wife said, ‘You really should go and see the doctor.’ And in traditional male format I said, ‘No.’ And then I one morning I thought, ‘Well, yes, I’ll call the doctor.’
So I called the surgery expecting to be offered an appointment the week after next and was completely astonished to be offered an appointment at 5.10 that afternoon. This was under the new NHS regime under which he kept one day a week free for walk-in appointments and I happened to have called on that one day. So I went off to see the GP who’s about two hundred yards from my home. He poked around a little and said, ‘Well, I can’t see anything obviously wrong with you but it’s just worth having a blood test. This may well prove to be some kind of viral infection that we can’t do anything about and it’ll probably clear itself up but if you go down…’, not to the major London teaching hospital, which was about ten minutes walk away, but to a satellite of it about fifteen minutes away, ‘and you get there at the start of the day you’ll be in and out in forty minutes or so.’
Other, less common, symptoms of leukaemia may be caused by a build-up of leukaemia cells in a particular area of the body. These include: aching bones or joints, raised purple areas under the skin, swollen lymph nodes, swollen gums, a feeling of fullness or lump in the abdomen due to an enlarged spleen, which may also lead to indigestion or loss of appetite. Some people also experience fevers or sweats, weight loss, generalised itching, weakness or chest pain.
Bone or joint pain was common. Two people mentioned skin rashes. Several people developed swollen lymph glands on the head and neck, chest, groin or armpits. A few people had spleen enlargement, one saying it caused a dull ache, another complaining of a heavy feeling in the abdomen. Some had lost their appetite or felt full after eating very little.
Several said they had lost weight but did not necessarily worry; one woman had been trying to lose weight anyway, another had been training for a marathon. Marilyn, in her fifties, described hot flushes but couldn’t be sure whether they were caused by her chronic lymphocytic leukaemia (CLL) or by the menopause. Deirdre experienced swollen hands some years before her CLL diagnosis and wasn’t sure if this could have been the first symptom.
Marie is a housewife. She is married with two adult children. Ethnic background: White British.
1989 I began to get pains in my body. I wasn’t quite sure what it was. I put up with it for a bit. I went to my local doctors. He thought that it was because I’d returned from the tropics and I was facing the cold winter and this is the cause of my aches and pains. He also thought it could be a form of rheumatism and treated me accordingly. But then a year later, I developed a pain in my groin.
Right at the very beginning of your CLL was your only symptom a lump in your groin, was it?
No, my first symptoms were pains in my neck, pains in my arms, pains in my legs, so much so that they thought I’d got…
A rheumatism, a form of rheumatism. It was only a year after that the pain in the groin started, the right hand side of my groin, very low down in my groin, and it was then I think my local doctor at the time, I think alarm bells were ringing. And I think he knew what I’d got even before I did.
What was that pain like?
It was just as if you’ve been running very hard and you’ve got the stitch. But that’s the kind of pain it was. But it didn’t go away. It just nagged and nagged and not a sharp pain, just a nagging pain and I just knew that that there was something else wrong.
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Mark is a voluntary charity secretary. He is single and has no children. Ethnic background: White Welsh.
It started when I was having all sorts of different symptoms' aching limbs, very tired, night sweats, day sweats, headaches, which had followed on from a period of having a bout of depression, and I thought it was still physical symptoms manifesting themselves from the psychological side. But as it went on it didn’t seem quite right, but the doctors couldn’t find anything in particular that was wrong. In December 1995 I actually asked if I could have a blood test, which they did, and they did a full blood count and nothing was found to be wrong. By August 1996 I was still getting very tired. I had been to the doctors and said about the sweating and was actually flippantly told that it was summer time and that’s to be expected. But the extent of it obviously meant more than that.
I was off work for 2 weeks in August 1996, and having injured my shoulder I went along to the doctors to see about it, where he gave me an examination and decided to do a full blood count, I believe because he thought it was something to do with my heart. And I had been unable to carry out any decorating that I wanted to do that week, and also my father had been in hospital having back surgery, and the cafeteria was on the top level of the hospital in [city] and I found I couldn’t get up the stairs without being totally out of breath and soaking with sweat.
In acute leukaemias, the symptoms usually come on suddenly and may continue to worsen between diagnosis and when treatment starts to work. Within 24 hours of having walked into hospital Dianne’s body had turned black all over from bruising, she was doubly incontinent and could no longer do anything for herself. Similarly, Gilly said that within three days of admission to hospital she was moved to intensive care. During his chemotherapy for acute myeloid leukaemia (AML) Deb developed back pain and problems with speech and balance that were caused by the leukaemic cells spreading into his cerebrospinal fluid.
Not everyone experiences or is aware of symptoms in the early stages. Their leukaemia may be diagnosed on a routine blood test or when investigating other conditions. Brian had a blood test to investigate the cause of a problem with a tendon in his hand. Susan was having regular blood tests to monitor a mild heart condition when her MDS myelodysplastic syndrome (MDS) was discovered. MDS is a bone marrow disorder which is often diagnosed by chance but some patients become anaemic and have an increased tendency to infection and bruising. About a quarter of patients with MDS will progress to acute myeloid leukaemia over a period of months or years. Blood tests taken before or after a hip replacement operation led to two people’s leukaemia being diagnosed. A private health check, which included a blood test, led to the discovery of Len's leukaemia. Some people recognised their leukaemic symptoms only with hindsight after the diagnosis.
Susan had no symptoms when her MDS was diagnosed and has had no treatment but is now feeling increasingly tired and has had two nasty bouts of bronchitis, to which she is vulnerable. Elsa, whose treatment for MDS consists of regular blood transfusions, knows when she needs one as she recognises the symptoms: exhaustion, breathlessness, feeling emotional and fuzzy-headed.
Michael is a semi-retired university lecturer. He is married with 3 children aged 15, 17 and 25. Ethnic background: White British.
Yes, I was diagnosed with CLL in March 2000 …, or April I think it was, …2002. And it was a shock because I’d felt perfectly well, as is often the case I understand, and I’d been to my doctor. I suffered occasionally from slightly high, slightly raised cholesterol and had been advised to have fairly regular cholesterol checks. Went along to the GP and asked for a cholesterol test and she said, “Well, why don’t you have a full blood test?” And I said, “Well, nothing to lose.” And I did that and then, of course, you know, the next day I get a phone call from the hospital and from my GP saying to go along. And at first my counts weren’t that high and they thought it could be possibly I was fighting an illness. But they ran later tests and then confirmed that I had in fact got CLL.
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Aley is an administrator. He is single and has no children. Ethnic background: Pakistani.
On October 2006 I decided to donate blood. And at that time I was in very good health, I was running, I was having a very healthy diet and at that time I had intentions to run a London marathon in 2008, so that’s what I was preparing for. And I got an appointment for fifteenth of October, which was not convenient for me because it was a fasting month and as a Muslim we can’t donate blood when we are fasting. And so what I did I cancelled that appointment to 31st October. And when I went to donate blood they drew a little sample of the blood before they took it, and they put it in a kind of liquid and it’s supposed to float. And it did not float and they said the haemoglobin level was too low. And I was very embarrassed at that time because I had a very good diet, I was in a very good shape as well. And they said they had to take a sample and send it away for further investigation.
The next day I received a call from the blood transfusion centre and a doctor said to me that I had to go and see my GP because they found something weird in my blood. And I booked an appointment with my GP. The next day I went to see him and the doctor from the transfusion centre said that he was going to fax the report straight away. But my GP lost the report and he advised me to go and have another check up, another blood test. So I went on the following day for another blood test and on the 9th November at 7.30, I remember exactly, I was watching Channel 4 News, my doctor rang me and he said to me, ‘Whatever you are doing go to that London hospital.” So I asked him, I said, “Is anything wrong?” He said, “No, nothing is wrong, just go and see a haematologist who worked there. They are expecting you.”
So I put some extra clothes on because it was quite… cold. And I went to see the doctor. And I went to emergency and they asked me what is wrong and I said, “I don’t know.” And because it was a very busy A and E they didn’t like it. But to be very honest I didn’t know what was wrong. So a doctor came to see me and he asked me what I was there for. I said, “Well I don’t know. My GP asked me to come and see you.” And he said, “Well, we don’t have any record of you here.” I said, “Well, he asked me to come and see the haematologist.” Anyway, he called the haematology department and there was a junior doctor, on-call doctor or whatever they are, and she said, “Yes, we were expecting him just ask him to..” And I think she had mentioned it to the doctor that we think that he has got leukaemia. And the doctor came back and the smile he had before was gone. And he said to me, “Just have a seat and the doctor will be with you shortly.”
Anyway, the doctor came and she said to me that they have a suspicion that my blood is not up to a level and I might have a leukaemia.
And I never had any symptoms whatsoever about my leukaemia. That is very unusual because the first thing you have you have out of breath if your haemoglobin is low. That’s what I learnt later. But I was running at that time. You know, I never had that symptom. I never had any symptoms in fact.