Michael - Interview 112

Age at interview: 60

Age at diagnosis: 54

Brief Outline: Michael was diagnosed with chronic lymphocytic leukaemia after a routine blood test. After a period of watch and wait he had various chemotherapies and antibodies and an allogenic stem cell transplant. He nearly died from pneumonia before his transplant.

Background: Michael is a semi-retired university lecturer. He is married with 3 children aged 15, 17 and 25. Ethnic Background' White British.

More about me...

Michael went for a regular cholesterol check and a full blood count revealed that he had chronic lymphocytic leukaemia. After about 20 months of watch and wait he started chlorambucil chemotherapy tablets, which reduced his blood counts for a while. A few months later he felt tired and became breathless when running. One day he suddenly knew there was something wrong with him and went to the GP. A blood test showed that his red blood cells were haemolysing (breaking down) so he was admitted to hospital. Blood transfusions and steroids had no effect. Eventually an antibody called rituximab cured the problem and after three weeks he was allowed home.

 

He continued on rituximab and also had fludarabine and cyclophosphamide chemotherapy, which reduced his blood cell count to near normal. He was then given an antibody called Campath as preparation for an autologous stem cell transplant. After a while he had an abnormal reaction and the drug had to be stopped. A stem cell harvest yielded insufficient cells so his brother was tested as a possible donor and was a perfect match. Before the transplant could go ahead Michael developed pneumonia. Antibiotics had no effect so he was moved to intensive care and put on a ventilator. Having been expected to die, after a couple of days he rallied and slowly recovered.

 

Three months later he had the stem cell transplant and was in isolation for five weeks. He had several infections and graft versus host disease. Since then Michael has gradually recovered, his blood counts are normal and he is as fit as he has ever been.

 

Michael took early retirement during his illness but has continued to work part time and is about to start training as a Citizen’s Advice Bureau volunteer. During his treatment he also developed a melanoma on his face, which was excised before it had spread elsewhere, and he wonders whether the leukaemia made him more vulnerable to other cancers.

 

Michael is in remission from chronic lymphocytic leukaemia and takes daily antibiotics to keep infections at bay; the drug makes his stomach a bit sensitive and he sometimes feels slightly nauseous.

 I’m going to have to take prophylactic antibiotics for the rest of my life, but it, you know, occasionally apart from makes my stomach slightly sensitive, more sensitive, and occasionally I feel a bit sick when I get up in the mornings, but it’s very, very minor. 

 

You know, I’ve not been called back for anything. You know, it’s still, well, I mean curiously on Monday, you know, I’ve not had a temperature for, since those last two occasions after I’d come out of hospital when I had to go back in, and suddenly I got a temperature on Monday and I thought, “Oh, you know.” Not much of one but it was there. And I thought, “Dear oh dear. What’s going to happen?” You know, but, the next day was back to normal.

 

In the middle of his treatment for chronic lymphocytic leukaemia Michael discovered he had melanoma (skin cancer); he thinks he read somewhere that he was at increased risk.

So do you want to talk about your melanoma that you got subsequently?

 

Yes, about, must have been now three or four years ago, I had developed a skin melanoma, I’m sure I didn’t, no, I just got a brown mark on the side of my face there. And I eventually went and got it checked out and they said, “Oh my gosh, you know, this is malignant.” Fortunately, they got to it just in time and cut it out, it hadn’t spread. But there’s a certain depth, and if it goes, mine was just below the depth at which they worry that it might have spread to the lymph nodes, and they checked those all out. And I was very lucky because I had some surgery, plastic surgery done on the side here, was absolutely first class and you can’t see anything at all now. 

 

And at the time I was told that it was, you know, this was all I needed, one more thing to worry about. And at the time I was told that it was almost certainly sun, you know, too much sun when I was younger, probably. And although I’m reasonably dark skinned I’m apparently, I always thought I was fairly dark skinned, by their standards I’m not. And they thought it was unconnected to the CLL but I have read somewhere that there might well be a connection between the two. And I’ve never had a satisfactory answer. People sort of shrugged when I’ve said it, consultants but, as I said, I read somewhere that’s there’s an increased likelihood of it. I think it’s actually in my CLL book. So I don’t know whether that’s something that people who’ve got CLL might want to be more wary of. 

 

Michael had been a keen runner before developing chronic lymphocytic leukaemia. Since being in remission he has returned to running and explains that this has been very important for his self-image.

The other issue is about returning to, is about self-image and being diagnosed with the disease and how you can help repair it. And what was very important for me was to try and get back to the level of fitness that I had beforehand. And okay, I’ve got the disease, I may or might have it forever, it may well come back, but if I can do everything that I, you know, was able to do, albeit, you know, age is, takes its toll anyway. And for me what was very important was running, as I used to jog and run before. I’ve had to stop and intermittently start it again. And over the last year, yeah, it’s almost a year now, I’ve started to run regularly again and gradually got a bit faster and faster and felt fitter and fitter. And that has been very, very, very important to my sense of well-being and my self-image. And of course it’s not for everybody, I know that, but I think it is important to try and go back to all the things that you used to do and enjoy. 

Michael is feeling optimistic about his future having probably been cured of chronic lymphocytic leukaemia by a stem cell transplant; his time horizons have changed since being in remission.

How do you feel about your future?

 

Well pretty optimistic actually. There’s always, your time horizons start to change. I mean when you’ve got the disease, when you’re going through the treatment you’re just looking for the next day, when you’re in intensive care you’re looking for the next hour. But your time horizons start to change. And people always say to me, “Surely having gone through this you’re not phased by anything anymore, you know, nothing can matter because you’re alive?”, and all the rest of it. And yes, that’s true when you reflect on it, but I still get irritable and I still feel, you know, I still get certain things completely out of proportion, so I don’t know. But another, and the other thing as well of course, as you, as the disease recedes and becomes less part of your life, your horizons start to, you know, you start to think about, “Well, I’m going to be around for a few more years now”, so, you know, you don’t, you can’t live for the day or, not that you ever really do, but your horizons start to change as well, and you start to think about a future. I’m optimistic. I mean part of me thinks that, you know, “I’ve come through it all so I must have some, you know, some strength”. 

 

Michael was sad to retire, and now that he finds leukaemia is playing less of a major role in his life, he wishes he was still working.

Yes, I do have some regrets actually. Because I think I’m still fairly young and I still, I had lots of papers that were sort of, you know, halfway, your revise and resubmit type things, and I just stopped really and put them to one side. And they’re not things now you can, you know, two or three years later you can’t go back to the journal and say, you know, “Remember me, you know, two or three years ago”, because things move on. And I have, I’m not sure whether, I mean I suppose in a perfect world none of this would have happened, I’d have carried on until I was, you know, probably sixty-two or sixty-three, and retired. But, you know, this had happened, I was able to get a very favourable financial deal from my employer and I was able to take retirement and still work part-time. So in that way it worked out very well. But I still felt I had a bit of my career to run. 

 

And I have found it quite difficult to make adjustments to finding things that I find worthwhile, particularly, I suppose ironically, because the disease now takes up less and less of my time, you know, I’m only having now to go, touch wood, to hospital once every three months. I was discharged from the melanoma treatment, which is a different hospital, a few weeks ago they decided I don’t have to go back again at all. So having, it being a central part of your life, it has now become a peripheral part, and at the same time your work has become a peripheral part. And although my children are at an age where they do actually need quite a lot of help in some respects, they’re also, in a year or two, will be off. So there has been, I mean my wife’s younger than I am, she’s ten years younger than me and still mid-career really in some respects. So I’ve had to make some adjustments and think about what else to do.