Michael - Interview 22

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.

No one would advise Michael on when and how to tell his younger children about his CLL*. He decided to be open about what might happen and how it could affect family life.

One of the hardest decisions we had was whether we should tell our two younger children, whether and when. With hindsight I think we got it about right but I could never find anybody who, nobody would give you the answer because it all depends what the children are like, what you’re like, the relationship you have with them, the state of your disease, all sorts of variables. Consultants can’t really advise you on that at all, nor can the support nurses at the hospital, well, they’re nurses. And that was one of the things I found hardest to deal with I think. That was very difficult. And I certainly, I remember talking it over with several of the people, we’d already decided then to tell them but I remember talking it over with people and you just get a range of views on that.

 

So how did you go about doing that?

 

How did we do it? I think we just sat them down one day and said, you know, “I’ve got this.” Explained I’d got this disease and I mentioned leukaemia and I said, “But there’s many variations of this.” And, of course, the first thing they say is, “Are you going to die?” You know, they say it almost straight away, and you have to go through it, all the possibilities and saying, you know, just tell them what you know, the truth of it. And we started, we told them when I started the chlorambucil, because I thought there’s a possibility my hair might drop out and they might need an explanation for that. So it was when there was a possibility of some external symptom being there that would, if they didn’t know there was something going on they’d be even more frightened. I remember my sister-in-law hadn’t told her children, who were a bit older, and they found it, and when I went into hospital, the haemolysis, they couldn’t understand why I wasn’t getting better straight away. So I think it was the right thing to, I’m not saying that she made the wrong decision in not telling them, but I think we made the right decision in telling our two then.

 

By that stage they would have been how old?

 

So I haemolysed in 2004, one was fourteen and one was eleven.

 

How would you advise other people to go about telling their children about cancer?

 

I think you have to stick as near as possible to the likely prognosis as you can. I think you also have to say that there is always hope that... Also prepare them for what is likely, how it is likely to impact on them, because I think that’s the most significant thing. If you know that you’re going to be in a hospital for certain periods of time there’s certain things you can’t do with them. They need limitations on their lives in, say, travel or things like that, loss of energy, various other things. I think that’s also something to tell them. I mean it’s interesting in a way I suppose, would you tell them that it’s likely to make you infertile? I mean we didn’t tell them that but then we didn’t tell them I was infertile anyway, you know, that I’d had a vasectomy. So what do you need to tell them for? It’s, I don’t know, you know, that’s just occurred to me really.

When having bone marrow samples taken Michael found that the anaesthetic only numbed the flesh and not the bone, but the pain was short-lived.

You mentioned having bone marrow samples taken and it’s not very pleasant. Can you tell me a bit more about that?

 

Yes, you’re sort of turned over on to your tum and then they dig into you to get a sample from your bone marrow. And they give you a local anaesthetic but they can’t anaesthetise the bone. So when it goes in through the flesh it’s not too bad, but then when it actually hits the bone it’s just very uncomfortable. But we’re talking about a minute of discomfort, it’s not something… I think I’ve had three and I have to say the doctors vary. You know, one I remember was not, well, I was a difficult patient for her anyway, let’s put it like that. The other two were, I was, and that was the first one I had as well, and I was dreading the next, second and third and they weren’t quite as bad, or maybe I just got used to it. But it’s not something you look forward to. So that was a bit unpleasant.

Michael's CLL* was diagnosed on a blood test for a routine cholesterol check.

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.

Michael told close colleagues about his CLL* in case he had to call in any favours and to avoid...

So as it’s an invisible illness for a lot of the time does that affect decisions about whether to tell people? Who to tell?

 

Yes, it does. And in a sense it comes back to self-image, I think. You start to think of yourself as an ill person but in fact in many respects you’re not. And you’re concerned other people will see you as ill and make allowances and not include you in certain things when actually you’re able to do almost everything. And that was part of my thinking about, particularly people at work, should I tell them, should I not? But I thought on balance it was better to do it, that I would rather people knew so that if I ever needed to call in any favours, or whatever, then it wouldn’t come as a shock, because I think it’s, you know, you then eventually end up having to tell people and they would feel that you’d kept it from them because you didn’t trust them. And I think that was the down side of it.But I can quite understand and sympathise with people who don’t tell others because why?, you know. If it doesn’t interfere with your life and if you don’t want to be thought of as an ill person, why tell them? So it’s not an easy decision.

Michael had rituximab to cure his haemolysis and later alemtuzumab (Campath 1H), both intravenously, which meant spending most of the day at hospital but that was better than being an inpatient.

And then they found a, I think it was a type of rituximab, I think it is, and they use that, and they were able, I don’t understand the science behind it, but apparently it can sometimes work to solve the problem [of haemolysis]. And gradually my counts, my red cell counts, having gone as low as 4 - and the normal is 12, 13 - started to increase slowly. But I was, as I said, I was three weeks in hospital and when I came out it took another couple of months really before I was in any respects better and able to cope. So I was in bed and at home quite a bit.

 

And then they tried me on something called, I carried on with the rituximab after I came out and that certainly helped. And then they tried something called Campath, their plan was that they would try and get a grip on the disease, try and flatten it as much as they could, suppress it as much as they could and then go for an autologous transplant, which is basically where they take the cells, my own cells and then put them back into me at a later date. And apparently this can work, stem cells.

 

That was the plan and as the first stage in that they gave me this Campath and it had a miraculous effect on my counts. It brought them right down to, you know, the white cell count very low, right down to the low end of normal. And it sort of stayed there and I thought this was absolutely terrific. And so we were now, this was in November 2005. They weren’t able to give me all the Campath treatment because there’s a reaction that you sometimes get, and I got the reaction and they have to stop the treatment if you get that, but I’d had quite a bit of it, probably about forty per cent of it.

 

And then I felt all right. My counts were pretty low and now there was a big debate, you know, how long would it last? Would the counts come up again? Was I cured?, if that’s not a meaningless word in this context, because they never actually ever tell you you’re cured. What was going to happen?

 

Okay. So how was the Campath administered? Was that intravenous or was that tablets?

 

It was intravenous. I was treated as an outpatient. I had to go, it was quite intensive, I think I was maybe three, perhaps four times a week, and it took most of the day. It was quite time consuming but at least I wasn’t an inpatient. So that was good.

 

And what’s the rituximab like? How’s that administered? What’s it like having it?

 

That was also administered intravenously and again that was quite time consuming. And you often feel, actually I think it was the Campath that caused, you know, to prevent a skin reaction you have to have some Piriton (chlorphenamine), and that makes you feel drowsy, so you have to wait quite a while before you can drive home afterwards. So the whole day really is in a sense wiped out. And yes, rituximab was also administered intravenously.

Michael's pneumonia didn't respond to antibiotics; he was moved to intensive care and put on a ventilator. He expected to die and said goodbye to his family, but recovered.

And I remember also it was my daughter’s graduation a couple of days later and it was pretty hot and I was determined to go to that but I really didn’t feel very good at all, but I went. And then on the Friday, I can remember this, the following day I decided, I spoke it over with my wife and we decided that I’d better go and get checked out. So I went to the hospital, I went in through A & E, and I was breathing with a bit of difficulty and I had sort of slight chest pains as well.

 

Anyway, I went to A & E and they said, “Well, we think there’s something on your lung, we think you might have something there and we’d better admit you.” Anyway, it turned out I had pneumonia and it’s quite likely that this was a consequence of the Campath. Anyway they hit me with some very heavy antibiotics but it just had no effect at all, and I went in on the Friday and by the Sunday I was in very serious trouble and they said that I would have to go into intensive care, it just wasn’t responding at all. And I remember this experience is etched on my memory for all time really. And I can remember lying on the bed and I could hear the doctors discussing me and it was bad news, I could tell that much. And in fact they said that I would have to go on a ventilator. It was the only hope I had. And my wife was told I had only a three in a hundred chance of living.

 

Anyway, I was in there for a couple of days and then I rallied a bit and they were able to take me off the ventilator and put a tube through my throat, a sort of tracheostomy thing. But even then I was not out of the woods. And I can remember also before I went into intensive care just saying to the doctor, “I just want to go home.” I thought I was going to die. And I just wanted to go home and die at home. Anyway, she called my wife in and persuaded me to stay in.

 

Anyway, I was able to slowly and steadily recover and that was the time when I suppose the will to live was very important, and family, I mean that was the time when my family were supportive. Because it was a difficult time, the children had come in and I’d said the final farewells and so on before I went into intensive care. But I did pull through but I was in hospital for three weeks and I had to learn to walk again. I mean it’s a whole week, once out of intensive care I recovered very quickly.

Michael is a keen runner and wanted to return to doing that after his stem cell transplant. He had to restrict his travel until he could have the necessary inoculations.

The other issue 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 was able to do, albeit age 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.

 

And we’ve also obviously had to curtail the travelling for a while, particularly when I was neutropenic, but that is another thing now we’re able to go for. And one of the things I hadn’t mentioned, that you’ll come across, is that everybody who has a stem cell transplant has to start all their inoculations again, so you have all your childhood inoculations, MMR and all the rest of it, again. And of course you shouldn’t really travel until you’ve had those done. So there’s just two extra points, thoughts that occurred to me.