Luke - Interview 127

Age at interview: 64

Age at diagnosis: 59

Brief Outline: Luke was diagnosed with hairy cell leukaemia after feeling very tired. A six week course of intravenous pentostatin as an outpatient put him into remission. Five years on he still gets tired and has other health problems.

Background: Luke is a retired journalist with four children.

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After recovering from surgery to treat peripheral vascular disease in his legs he started feeling very tired. His GP did some blood tests, repeated them and referred him to a consultant, saying he had a kind of leukaemia. At the hospital the consultant told him it was a rare but eminently treatable type of leukaemia called ‘hairy cell’.

 

He was treated with a chemotherapy drug called pentostatin. He was given the drug intravenously once a week for six weeks, which gave him no side effects and put him into remission. Following treatment he developed a condition called polycythaemia in which the red blood cells are too numerous and had to have some removed.

 

He continues to see his consultant every year for blood tests. He still gets periods of intense tiredness but the tests show his leukaemia has not returned. Since his leukaemia he has experienced other health problems including a type of skin cancer called melanoma.

 

After having Hairy Cell Leukaemia, Luke was diagnosed with polycythaemia (too many red blood cells); his consultant was unsure whether the two conditions could be related.

There was sort of two knock-ons. Curiously, as soon as my leukaemia seemed to have been cured I then developed polycythaemia, which is the red cells started going out of control, so I was having to have, not blood transfusions but blood taken out, which was rather painful, not very pleasant for a while. But anyway that settled down.

 

Is there any relationship between polycythaemia and leukaemia, do you know?

 

Well, it’s unusual to have them. From what the consultant was wondering was whether it was because one had sort of got rid of the rogue white cells, or that somehow it had allowed the red ones or something - I mean I’m no expert so I don’t really know - to sort of take over a bit. But I know that since when I’ve mentioned it to other consultants they’ve said, ‘Oh that’s interesting, you don’t often get these two together.’

 

But I don’t know much about it, you know, apart from my…

 

It’s a new one on me.

 

Yes, it’s also rather sort of mediaeval practice, you know, to cure it. You just drain blood out of the patient, which… There we are, that seems to be the way.

 

But it works?

 

Oh yes, yes, it worked, yes.

 

Just thins the blood I suppose, you know. 

Luke says he could have used his leukaemia as an excuse for giving up smoking and drinking but he didn't; he has since quit both things but not because of his leukaemia.

Have you made any changes to your lifestyle as a result of your leukaemia?

 

No, no, not really, though I could have used it as a, you know, excuses for, you know, stopping smoking, stopping drinking, all sorts of things, not that that affected leukaemia of course but I, you know, I could have said, ‘Well, now I’ve been given, not a second chance but, you know, I should sort of smarten my life up’. But I didn’t, no, no.

 

But you’ve had other illnesses as well, so…

 

Oh yes, yes, yes.

 

…it’s not the first time you’ve faced that kind of thing.

 

No, no, as I say, I’ve had melanoma, at the moment I’ve got prostate problems, I’ve got, I keep forgetting what they are, I’m on piles of sort of medicines. But so I’m well used, until I reached the twenty-first century I’d never been in hospital, nothing, and then suddenly bang, everything happened. So the last six years I’ve been in and out of hospital and so that’s why I get involved with medical things now because I’ve got some patient experience. But no, since a couple of things have happened. In fact I have actually finally done the thing that, you know, I haven’t been, you know, I’ve stopped drinking completely, I’ve stopped smoking completely, so those have been some more achievements. But I can’t say I necessarily feel much healthier for it. My bank balance is doing well. Yeah.

 

And you didn’t do those things specifically because of your leukaemia?

 

No, no, no. No I don’t think it impacted, no, not really, no, no. So…