Most people we spoke to had been shocked to be told that they had leukaemia or myelodysplastic syndrome (MDS). Luke said, ‘It was like a jolt’, Mark said, 'it hits you like a train, your head is spinning'. Others said they had gone unusually quiet inside. Frances said that she felt ‘invaded’ because it was a cancer of the blood. Some said the diagnosis was shocking because they had so few symptoms or because they had never been ill before. Suddenly needing to be admitted to hospital, and in some cases being told their life expectancy was shorter, had been a tremendous shock. At first some felt very scared about the future and feared that they would die. Others who had been experiencing a variety of symptoms were relieved to finally have an explanation for them. A few people said they had suspected leukaemia or some kind of cancer because they were so ill or because the kinds of tests that had been done suggested a blood condition. Marilyn had wondered about leukaemia because her father had had it.
Michael is a retired charity director. He is married with one adult child. Ethnic background: White British.
I mean I was completely staggered by this diagnosis. I felt fit. I mean for instance I played a cricket match in the week before I went to my GP in the normal way. I mean I’m an ageing medium paced bowler but that requires a certain amount of energy output and I had no sense of being unable to do it. I was still doing my nine mile round trip by bicycle to my office every day and everything else was normal. So this was, I had no sense that I was unwell.
One of the things I’ve discussed with doctors and others since is, given that I presented on the surface as a fit and healthy man in his late fifties, and that many other leukaemia patients tend to come in on the back of some other illness which has basically developed on the back of a compromised immune system, pneumonia is an obvious case, how long was it going to be until I really felt ill and went to the doctor for reasons other than scratches weren’t healing? And originally I thought the answer would be some months, but more recently the indication was it would have been a matter of weeks, and I don’t know the answer to that, but I had no symptoms that I was aware of, I had no sense of being unwell. When I went for the blood test I’d taken my GP at face value when he said, ‘I think this is probably a viral infection that we’ll never trace and it’ll clear up of its own accord.’ I’ve talked to him since and he claims he knew there was something wrong. If he did he was concealing it very well.
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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.
So did you understand that it was a cancer when they gave you the diagnosis?
Yes, yeah I did, I’d sort of, in fact I knew I had cancer, I guessed cancer before leukaemia, if that makes sense. When I was admitted to hospital I said, ‘I’ve got cancer here’. And then when they said leukaemia it made sense, given the way I was feeling it wasn’t localised or anything, it was all over, just aches and pains. And yeah, it just sort of made sense.
What made you think it was cancer?
I was purely so ill. I thought, to be this ill it has to be cancer. It’s nothing else. I think I’d gone through everything in my head that it might be, the pleurisy, the…, and I said, ‘No I’ve got a cancer there.’ Because I’ve never felt so horrendously low and in pain and really, you know, just, there was nothing of me. I was gone. I think I really was at death’s door.
What kind of cancer did you think you had?
No idea. I think testicular came to mind for some reason. I don’t know. It was just cancer. I didn’t get more specific than that, maybe just my testicles or something inside, my bones possibly, I think the bones came into it as well.
How did you feel about thinking those thoughts?
I thought, ‘I’ve got to get a grip of this. I really have got to get a grip on this’. But I was feeling so weak. It’s funny but once, it was good for me to accept it is cancer. I’ve got it and now I have to deal with it. It was actually a bit easier for me to cope with my situation then actually, there was a reason. Whereas in the weeks before and that morning there was no reason for why I was so ill. But now I actually knew, ‘Well you’re ill because you have cancer, leukaemia, so that sort of helped me in a way actually, in a strange way.
Deb was diagnosed with acute myeloid leukaemia (AML) while on a temporary stay in the UK and said he couldn’t believe the diagnosis and wanted to speak to doctors in his native India before agreeing to treatment. However, he was advised that any delay in starting treatment could be life-threatening so he didn’t do this. Luke was diagnosed with a rare form of leukaemia called ‘hairy cell’ and said he felt slightly special to be part of a small clique who had this rare condition.
Some people reacted by feeling the need to find out lots of information and take some control over their illness. People who had been told they needed immediate treatment often took the attitude that although they were shocked they needed to get on and deal with the problem. Being told they had a short life expectancy prompted some people to put their affairs in order. A diagnosis of chronic myeloid leukaemia (CML) used to mean a short life expectancy but nowadays can be managed long term with medication and has a good prognosis in most cases.
Elizabeth is a retired NHS administrator. She is married with two adult children. Ethnic background: half French Mauritian, half White British.
But the minute we walked in the local hospital I had a panic attack. Totally, I couldn’t breathe and I burst into tears and I was like a complete wreck really, without even knowing what I had. But I knew deep inside that it wasn’t good. So we made our way to haematology and this consultant. I hope she’s had some patient liaison training since then really, back then ten years ago. And she said to me, “Oh well, I haven’t got good news for you. You have leukaemia”. And, “But there’s a few things we can do”, and all that. And I sort of said, “Well, how long have I got?’ “Well, three years at most. It depends how you respond to what treatments we have to offer you.” And she said, “Well, look, let’s face it, you could get run over by a bus really but none of us know how long we have.”
And I was sort of looking at her and thinking, “Do you realise what you’re telling me? You’re just telling me I’ve got leukaemia really and sort of so matter of fact really.” My husband would probably have passed out on the floor by that time. And I was saying, “Okay, okay.” And then she told me, “Well.” And I said, “Well, what type of leukaemia have I got? What have I got?” And she said, “Oh, you have chronic myeloid leukaemia.” And from then really I left that hospital and I sort of thought, “There is no way I’m going to let that woman treat me.”
And I went back home. I rang all my doctor friends, I sort of said what the diagnosis was and that’s when I started to research my disease one hundred and fifty per cent. I’m not one of these people that could just put myself into the hand of a doctor really and just let him do what he wants with me. I’m, you know, it’s just not me. I had to know every single detail. I bought a book on haematology for medical students and researched blood and found out what was happening to my blood and read about the condition and really what was chronic myeloid leukaemia. I had a follow-up appointment at the local hospital and I saw a different person, another consultant there who was actually the head of haematology at that hospital. And they started talking to me about all various trials they wanted to put me on with interferon and there was also the possibility of a bone marrow transplant at the time. And I have two brothers and a sister and so they had to be tested to see whether they were a match.
So we came out of that meeting with the consultant a bit like, you know, everything was being thrown at us about, “Oh, we’ll try interferon and then we’ll see about a transplant and donors”, and etcetera really. So, you know, more things to research. And then I sort of thought, “Hang on a minute. This is the local hospital here and I’ve got leukaemia.” I went back to see the consultant. We’d half walked out of the hospital and I walked back in again and I said, “I’ve got one question for you.” I said, “Who is the best person in this country for chronic myeloid leukaemia?” And he said, “Ah, but this is this professor who works in London.” And I said, “Okay. You refer me to this professor because I am not coming back here.” And he said, “But we can deal with this, we can do this, we can do that.” So I said, “No no no, I am not coming back here. You refer me and I will take it from there.” I dread to think what kind of referral letter he got after that. But I was referred to a centre of excellence for treating leukaemia in London. And to me that was, you know, I was in the right place. I knew I’d done the right thing for me and I had to wait a bit for the a
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Chanelle is a project manager. She lives with her partner and has no children. Ethnic background: White British.
But I remember very clearly when I came home that night my mother said to me, ‘There’re some pamphlets for you on the kitchen table. Maybe we could read them together.’ And I went to go and pick up the pamphlets and they said. ‘Living with Cancer.’ Now I still don’t understand how this escaped my attention but at the time I thought, ‘Oh I don’t have cancer. I have leukaemia.’ And then my parents had to explain to me, ‘No this is what leukaemia is. It’s cancer.’
And it was almost like having a shock all over again, and that’s when I realised that actually I’m an adult and I have to face up to the fact that this has happened to me and I’m going to have to, you know, do this and this is happening. And despite all the medical procedures over the first two days it was that moment that said to me, ‘It’s time to step up to the plate and deal with this and find out what’s going on.’
Some people admitted that they had been scared. Claire said she felt that she didn’t belong in the hospital and wanted to go home. Those who had young children were most concerned about staying alive for them. Others worried about the need to put their lives on hold for several months while they had treatment (see also ‘Intensive chemotherapy’). A few said they felt guilty about the effect of their illness on those close to them and the pain it would put them through (see also ‘Support from a spouse or partner’). Seeing other people worse off than themselves, particularly young children with leukaemia, helped some people to put their feelings into perspective.
While people who were diagnosed with chronic lymphocytic leukaemia (CLL) were shocked by the diagnosis because they had assumed that leukaemia was always life-threatening, most were also reassured by being told that the condition was slow growing and may not need treatment for months or years. However, not everyone was able to take in everything they were told and went away with partial information, causing unnecessary worry. Some had been too shocked to think of questions to ask during the consultation and didn’t know who to ask later.
Alex is a retired sales manager. He is married with two adult children. Ethnic background: White British.
At first the doctor thought I had …
Was it anaemia?
Anaemia, yes, and then I went on tablets. Didn’t get much better or worse and then I went to hospital. I had an interview with a specialist there and he said, “I think you’d just be on the edge of having leukaemia.” Quite a shock when he said it. And he says, “There’s nothing I can give you for it because you’re not bad enough.” So I went, “Oh, that’s all right.” “We shall keep an eye on you from now on.” So I went over to six monthly visits when they weighed me, took blood and then we had a chat and, “Oh, you’re no different. It’s just as it was right from the beginning”, which was quite heartening really because I had a cousin just died with it but I didn’t know anything about it because it wasn’t here. And now I just forget about it. Carry on as if it’s not there because sometimes I think with these things the least you know about it the better it is. And I don’t worry about when it gets worse the specialist who I still see, will say, “We’ll have to do something for you.” What I don’t know. But it doesn’t worry me. I’ve got plenty of other things to worry about medically. So I just carry on hoping it keeps like this. Ah, there’s nothing else I can say about it. It’s difficult.
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Marie is a housewife. She is married with two adult children. Ethnic background: White British.
I went to the local hospital in 1992. I was called in by the consultant who informed me, “You have CLL, a form of leukaemia.” He explained that I would probably live to a great age, but frankly I didn’t take anything in. It was a shock that I’d just been told that I’d got leukaemia. I also had lots of mixed feelings that I’d just come back from Africa and it was decided I should come back because I thought if I stayed too long I wouldn’t get employment here, I’d be too old. I’d just settled in a job. I met my second husband who was then not married at the time, and I seemed to have everything to live for. And all of a sudden I couldn’t see anything but I was going to die.
He then said would I like a few minutes to ask questions and I couldn’t ask one. I was just too numb. I came away and my husband was very upset and I suddenly burst into tears. I was going to die and I’d got a little grandson who was two. I wouldn’t be seeing him grow up. I don’t know what would happen to my daughter because she’d be alone because her partner, well her husband had left her when my grandson was six months old and I was the only support she had. I was looking after my grandson at intervals, and my world fell apart. I talked it over with my daughter and I rang a friend who was a nursing sister together in Nigeria and we worked together here. And she burst into tears.
So everyone around me was crying and it didn’t help me but made me feel miserable. I went to bed and I decided, “Right, this is not going to beat me.” I wish I’d asked lots of questions and I didn’t ask any. I made an appointment to go back to my local doctor and the list of questions that I could have asked the consultant and didn’t, and everything was explained' that it might take some time before the CLL needed treatment, that I was at very, very early stages, and that I should, basically, get on with my life, have regular blood tests and it’s hard but forget it. And I made up my mind that was what I was going to do.
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Beverley is a retired medical secretary. She is married with three adult children. Ethnic background: White European.
Then after the Christmas I received the appointment through to go and see a consultant at my local hospital who again, did more blood tests and said that I had CLL, chronic lymphocytic leukaemia, and that at the moment, everything, I would have joint aches and pains and tiredness but I probably wouldn’t suffer too many symptoms for some time, that life expectancy was about fifteen to twenty years but I wouldn’t have any problems for a good few years yet and that I’d live to see my grandchildren. They were all the questions that I asked and, you know, am I ever going to see my children have children? How long am I going to live? They’re all the questions that everybody wants to know but he just said that, “Don’t worry. This will all go okay and nothing will happen until you’re way into your sixties.” And I’m thinking, “Oh, that’s miles away and I’ve got plenty of time to think about these things”, and came away.
I must admit that after a couple of days the actual diagnosis then hits you because you then realise that you have got a form of cancer. It isn’t just that you’ve just got aches and pains, there’s something going on in your body. And you then start thinking quite morbid thoughts at that time of, “Maybe I ought to do this, maybe I ought to do that.” But it gradually eased down. I had lots and lots of questions that I wanted to ask but I really just didn’t know who to ask. Somebody suggested that I contacted the hospital again and speak to the haematology nurses, which I did and one of them was quite helpful but the questions often come up when you’re not there and they’re not available and you don’t like to disturb them, and things like that. And I tried to do as much research as I could by looking on the internet and, because of my profession anyway at that time, I felt that I could sort of ask my employers what they thought about things, and they just sort of said the same thing, “Well, you know, you’ll be fine for a long while yet. It’s very early diagnosis.”
And I continued like that for I think after about three months things gradually started to sort of subside, the worry started subsiding and you realise well, life was carrying on the same and that you weren’t go to die that minute, and things like that.
Having other people present when the diagnosis is given can help to absorb all the information and to think of questions to ask. Some people we spoke to had a partner or other relative with them when they were told the news but others were alone. While most people who had been accompanied were glad of it, one woman said she regretted having her husband there because he panicked. Others said they preferred to do these kinds of things on their own but one man said he regretted having being alone.
Mike has retired from working as a solicitor in the civil service. He is married with two adult children. Ethnic background: White Scottish Episcopalian.
So I turned up at the due date. They took their bone marrow extract, which is, for me it wasn’t as bad as people have said, but it wasn’t a pleasant experience. And I then had to wait, I think if I remember correctly, about a week for the cultures to be in a state that they could say precisely what it was. And I was called in, as it happened while I was also being given a scan because they’d obviously found other things in my urine samples. And the registrar, the duty registrar said, ‘Would you like to come and we’ll speak in the professor’s room’, he by now being on holiday. And I remember being caught like the rabbit between two cabbages. I should obviously go with the registrar because she’d asked me to do so, but I wanted my wife to come and she, the registrar wasn’t indicating that was proper or not, so there was that terrible pause, but in the end I went in by myself and I really did regret that.
She said fairly straightforwardly, and on reflection I felt, as often is the case with people, quite brutally, ‘It’s leukaemia but it’s an odd one, quite rare, it’s hairy cell.’ And she said, after a small pause, ‘Well I suppose it’s not a bad one to get if you’re going to get leukaemia.’ And at that stage I didn’t launch into the questions that inevitably you do want to ask but much later because you’re actually dealing with just being told that you’ve got leukaemia, and for a lay person, or the average lay person, that takes a lot of absorption and certainly very little understanding.
Some people found it difficult to come to terms with having been given a CLL diagnosis at a time when they had no symptoms and treatment was unnecessary. For instance Len’s CLL was discovered on a blood test taken as part of a routine health check he had requested privately. He demanded an urgent appointment with a private haematologist who confirmed the diagnosis the next day and explained that his condition was in the early stages and no treatment was needed. Len now regrets having had his health check. Others felt it had been better to know their diagnosis and several said it had taken some time for all the information to sink in and for them to accept it.
Len is a retired chartered accountant. He is married with two adult children. Ethnic background: White British (born in South Africa).
Can you tell me a bit more about how you felt when you were told you’d got leukaemia? You said you were shocked.
Well, it’s a shock obviously because you suddenly realise you’ve got cancer. And that’s why I really was shaken. And that’s why I was desperate to get to a haematologist. I really couldn’t wait. I just took the first appointment that I could get. It didn’t matter who or where or what it was. I had to get to see a haematologist fast. So yes, I was pretty shaken and you think, Lord knows what you think, you know, leukaemia, of all things to have, leukaemia. You think the end of the world has come, you know, this is terrible. And it’s only when I saw the haematologist and he sort of calmed me down, in a way, by saying that nothing’s going to happen, you can’t treat it, you can’t do anything about it, you just watch it and you’re only in the early stages. And from that point of view he did calm me down because I began to realise that it wasn’t as traumatic as I thought it would be. I thought, “Here I am, you know, chemo and all sorts of things, what’s going to happen to me?” You don’t know. You just don’t know what’s going to happen. And once he explained it, well, he explained it technically all about the blood and the platelets and the lymphocytes and all that sort of thing, which I didn’t understand. I don’t even want to understand it. It doesn’t matter. It’s not relevant.
Do you ever regret having had that health check and getting the diagnosis?
Well, I suppose so in a way because I wouldn’t have known about it and I would have carried on merrily. It wouldn’t have even changed my life because I haven’t changed my life except for this Tenerife thing. Do I regret it? Well, I suppose so, yes. If I hadn’t have done it I wouldn’t have known about it and we wouldn’t be having this interview. Yes, I suppose I do regret it.
You don’t feel that actually it’s a good thing that you know even though nothing can be done at the moment?
While I have no symptoms, no I don’t think it’s a good thing that I know. If I had symptoms then obviously I would need to know. But because I’m perfectly fit and healthy in my own way and I do whatever I want to do, knowing doesn’t help me.
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Deirdre is a farmer's wife. She is married with three adult children. Ethnic background: White British.
So were you satisfied at the time with their explanations of why they weren’t going to treat you?
Yes, I thought they told, well, the doctor said it was a chronic one which is incurable, but she said, “Don’t be too upset.” She said, “They can give you drugs to prolong your life”. And I thought, “Well, it’s something I’ll just have to cope with.” But I’d have rather she’d said, you know, that you got something, we can cure this or something but being the chronic one of course they can’t. I don’t know. I think in a way I was quite pleased because they said they’d lay off treating me as long as they could, and I did think to myself, “Oh dear, is it going to get worse and worse? Why don’t they treat meet now?” But afterwards I thought, “Oh good, the longer I go without treatment the better it is.”
And the other thing was people say, when I was feeling well, “Were you sorry?” I think it was the doctor said to me, “Were you sorry we told you at the time?” You know, and they, I think they have to tell you, don’t they, if there’s something that’s happened. And I said, “Well, in retrospect, no, not now because it’s all settled down and I know, and had you told me now when I was beginning to feel ill I think it would have been worse. When I was feeling well, you could cope with it better than when you’re feeling, you’ve starting to feel ill. You probably would have thought the end was nigh”, sort of thing but as I was well and nothing happened for so long it was much better to have it, you having been told early on I think, yes.
Jane had felt angry about her CLL diagnosis because the symptoms were limiting what she could do in life and had made her retire from a job that she loved (see also ‘Living with the symptoms of CLL’).
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