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Beverley - Interview 68

Age at interview: 54
Age at diagnosis: 47
Brief Outline: Beverley was diagnosed with chronic lymphocytic leukaemia after complaining of tiredness and joint pains. She has been on 'watch and wait' for seven years but her symptoms are getting worse and she expects to start treatment soon.
Background: Beverley is a retired medical secretary. She is married with three adult children. Ethnic Background: White European.

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Just before Christmas in 1999 Beverley went to her GP because she had aching joints and was feeling very tired and lethargic. The GP did a blood test and told her she had a kind of leukaemia and referred her to a consultant. After Christmas she saw the consultant who explained that it was chronic lymphocytic leukaemia and that she would be okay for a good few years yet.
 
She started on a programme of ‘watch and wait’ involving reviews of her condition every six months. In 2003 she was advised to retire from work due to other medical problems that she had that were unconnected with the leukaemia, but found that this did relieve her symptoms somewhat.
 
In 2007 it was suggested to her that she could have a bone marrow transplant at some point in the future and was invited to ask her siblings to have their bone marrow tested to see if any of them matched. Unfortunately neither of her sisters were a match so an allogenic bone marrow transplant is out of the question but there would be other treatment possibilities. Beverley’s white blood cell count has risen quite high and she has started to get chest infections so expects to start treatment in the not too distant future. Meanwhile she paces herself in order to achieve the things she wants to do.
 

 

 

Beverley’s physical experience of sex had not changed as a result of her chronic leukaemia but...

Beverley’s physical experience of sex had not changed as a result of her chronic leukaemia but...

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Has it had any effect on your sex life?
 
No, not really. You sometime, yes, I mean I think most cancer sufferers have this feeling of you’re infected and could you pass on, or anything else? I know very well I couldn’t but there is still that little part of you. There’s that tiny, tiny little grain there that at the beginning that you think that. But no, no it’s exactly the same as it always has been. There’s nothing to see, is there? There’s nothing to see anywhere with leukaemia, so there isn’t anything that’s going to be any different. Obviously, the only other way that it does affect your relationship is that you are so tired, that, you know, “Forget it. I’m going to bed.” And it doesn’t matter whether it’s eight o’clock in the evening or whether it’s ten, eleven o’clock in the evening. And I think after the length of time my husband and I have been married, he’s so used to me just if I’m too tired, to go to bed and I just go to bed and he cuddles into the back of me or I cuddle into the back of him and fast asleep we go. And so what if we don’t have sex that night? We really don’t worry about it.
 

Beverley has had chronic lymphocytic leukaemia for 7 years; she feels depressed on some days and...

Beverley has had chronic lymphocytic leukaemia for 7 years; she feels depressed on some days and...

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And I actually, I admit some days you have depression because you, well not, I don’t say that I have depression now with it, with the leukaemia, I actually feel down some days, it’s not depression, it is a case of just feeling a little bit down. It’s pouring with rain outside, it’s a horrible grey day and it’s going to be a bad day, it’s a bad day. But tomorrow might be sunny and it might be a bright day or there might be a phone call come through and I speak to my son in Australia or I speak to somebody else and it brightens the day up and then it’s all past, and you’re feeling, you know, you might be absolutely feeling absolute grot but by just accepting what’s going on, and I think it was just that that helped the acceptance. Whether everybody goes through doing something like that or going and doing an art course or, I just think if you can channel your thoughts into something else it helps a lot. I think that you just have to do something. 

 

After having her CLL monitored for 7 years, Beverley's specialist raised the topic of possible...

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After having her CLL monitored for 7 years, Beverley's specialist raised the topic of possible...

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Then in 2007 I went for a review again to the hospital. I’d been feeling a lot more tired, a lot more lethargic, and just no energy at all to do anything. Mentioned it at the hospital, but I also saw a different consultant this time, who then said to me that, did I realise that I had exceeded half my life expectancy?, which was a real shock when I’d gone along to the clinic expecting them to just say, “Fine, everything’s okay. Go away. We’ll see you again in six months”. And she just said, did I realise I’d exceeded the life expectancy?, because at diagnosis it was fifteen to twenty years. And I just sort of was taken aback quite a bit with what she said. And then she said that, would I consider a bone marrow transplant?, which was the first I’d ever, ever heard about bone marrow transplant. In the literature that I’d read up myself I’d found that there were stem cell transplants but it was only done in exceptional circumstances. Certainly this was the information I’d had in 2000 to 2002. And obviously this was something totally new for me to sort of consider. 
 
She then asked if I would speak to my siblings to ask, because that’s the only person that can actually give the donation, and to ask them if they would then consider having testing. 
 
And I then went, I contacted the hospital and I actually spoke to the haematology nurses again, who said that it would be an idea to come back and speak to the consultant but not in a clinic time. So she arranged for me to go back to the hospital to speak to the consultant, who explained that she didn’t necessarily mean that I was going to have a transplant there and then; this was something to be considered for when things get worse but that she would still like my sisters to be tested so that they actually have the records for it. And I actually came away from there feeling even more confused, if anything, because one minute you’re being told you’re going to have a transplant, the next minute, “Oh no, you’re not going to have a transplant. This might happen in five years time or it may not happen at all”. And you’ve just then told sisters, “Well, I’m possibly going to have a transplant”. So everybody was completely confused with the answers that I was told. 
 
My sisters were tested before Christmas, and it took two and a half months before you get, they get, they receive the results. You’re not allowed to receive or be told the results in any way. It’s up to the person concerned, whether they are possible donors or not, to tell you. My sisters contacted me and both told me that neither of them were possible donors. 
 
So I now know that I haven’t actually got a family donor. And I went back to see the consultant again at the hospital, who explained that she would wait until things got any worse before putting me on a donor list. There may be a way of treating me with other forms of treatment, and she listed, she explained what those were' one being chemotherapy, on a low dose system where you would take a tablet every day; and then the other form would be a more aggressive form of chemotherapy and radiotherapy, and explained that if I did have to have a transplant I would have to have chemotherapy and radiotherapy and be in hospital to receive all of that but it would only be via a transfusion and nothing worse than that to go on. 
 
I have continued to have the tiredness and the pain and the joint pains but they’d actually asked in the clinic in the latter part of 2007, had I had any chest infections or anything like that?, because apparently that’s another symptom of leukaemia developing and increasing intensity. And in fact I’ve started gettin
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