Mike - Interview 08

Age at interview: 66

Age at diagnosis: 62

Brief Outline: Mike was diagnosed with hairy cell leukaemia in 2003 after a variety of symptoms. Five daily doses of cladribine chemotherapy put him into remission. During diagnostic tests he was also found to have kidney cancer, which was removed surgically.

Background: Mike has retired from working as a solicitor in the civil service. He is married with two adult children. Ethnic background: White Scottish Episcopalian.

More about me...

Historically Mike had been a frequent hill walker but in late middle age did so less often and began to gain weight and was breathless on exertion. He noticed that cuts didn’t heal as quickly as usual and he got a lot of fungal infections. In 2003 he and his wife walked the Cotswold Way but he found himself looking for excuses to make it easier for him and carrying his rucksack bruised him. On their return home his wife suggested he go to his GP, who did a blood test. The results were back in two days and he was given an appointment to see a haematologist a few days later. The specialist asked lots of questions including whether he had experienced any pain in the area of his spleen, which he had, and arranged for him to return another day for a bone marrow biopsy and a scan. After the tests he was told he had an unusual type of leukaemia' hairy cell.

 

After a few days he returned to hospital for 5 daily doses of cladribine, a type of chemotherapy delivered intravenously, which caused him no significant side effects apart from tiredness. The treatment put him into remission, but he was told to adopt a neutropenic diet for a few weeks until his blood cell counts returned to normal. The scan also revealed a cancer on his kidney and once he was no longer neutropenic it was surgically removed. He needed no further treatment for this as it had been caught very early.

 

Mike feels he has been lucky as he has never felt particularly unwell through his illness experience.

Mike regretted that although his wife had accompanied him to the hospital she had not been invited in to hear the diagnosis and he had not had the presence of mind to insist.

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.

Mike was happy to adopt complementary approaches to deal with stress and to aid recovery but would never consider using alternative medicines instead of NHS treatment.

Have you thought about or used any complementary remedies in connection with your leukaemia?

 

Have to mention a name. Maggie’s offer things that deal with logical practical ways of dealing with stress, how to try to increase your sleeping so that you can recover well that way, diet, nothing faddy, perfectly straight forward sensible diet. So not alternatives but complementaries, and I certainly go in for anything that I can see that seems to be helpful. I’ve never been inclined to opt for alternative medicines. I consider I’d be foolish to back away from the National Health Service. I mean whatever your criticisms of it are it’s not out to get you. And alternative medicine somehow or other doesn’t speak to me of being totally logical in that you’re removing entirely from the field of trained medical experience, so no, nothing else.

Mike, aged 66, has experienced some impotence but his GP thinks it is due to his blood pressure medication not his leukaemia treatment; he has discussed it with his wife and it doesn't worry him.

Do you think having this illness has affected the way you feel about your masculinity at all?

 

You asked for it you’ll get it in technical terms. Some of the chemotherapies made me wonder about my virility in the real sense of could I have an erection. I think we boiled it down, because I did go and speak to the GP, I think we boiled it down more to being the things that they’re treating me with for ordinary blood pressure. And we worked out that they’re likely to be damaging to the libido, but then I’ve got to consider my age. I’m not necessarily going to be Picasso. No I don’t feel in the sense less masculine. I did at times feel less able to be masculine but I don’t worry about that now. I think I just accept it as part of the age I am and the treatments I’m receiving. And we get along fine.

 

Did it cause problems at the time?

 

Not, well for the first time, I have never been in life a person who couldn’t be typically male and have an erection almost as I needed. After treatment I found that was much more difficult and so my psyche was to an extent struggling with that and that’s why I went to see the GP. But I think I’ve chatted it out and my wife and I talk about it so I think we’re not in the least worried now. Just, you know, that’s the way it is.

Mike obtained factual information from Cancerbackup (now merged with Macmillan) and attended stress reduction courses at his local Maggie's centre.

So did you seek out more information for yourself or did you just go with what you knew from them?

 

No. I looked on the web in as much as I could then understand what I recovered, because I did tend to go to medical sites and it did tend to come out in very technical language, which wasn’t terribly helpful. But I went to a charity called Maggie’s and they were exceptionally helpful. Mens corporea, mens sana, they dealt with the whole lot, so where my wife and I were getting agitated about what this might mean they were very good with stress related courses, dietary courses, how to encapsulate your thoughts and get rid of them, so they were good from that point of view. I got a lot of information from them.

 

BACUP [forerunner of ‘Cancerbackup’ now merged with Macmillan] Ah Cancerbackup, I had information from them. But hairy cell is not that common and even BACUP didn’t have one of their big thick glossy ones, they had to produce a smaller version altogether for what hairy cell was.

Mike said that his wife reacted calmly to the news, his elderly mother took it badly and his grown up sons went quiet but were helpful and could discuss it.

So how did she take it? How did she react?

 

I can only tell you how I felt she took it. She was very sanguine I suppose you would say that. She didn’t get emotional. She was practical and she was quite agreeable to coming with me to find out as much as we could. I did most of the looking to find out what the web told us but she was happy to come to Maggie’s and join in the courses there. And I think we both learned in our own way. Inevitably my interest was greater than hers but she was good and didn’t close off, I could talk to her about it.

 

But in fact I talked to my family. I have a mother who’s now eighty-nine, will be eighty-nine in a few days, and I went through to tell her specifically. I felt that it was only fair that we should see each other when I told her that. She took it very hard initially and didn’t want me to do this and didn’t want me to do that. But with regard to the treatment for the leukaemia she just accepted that that was necessary. I think probably had a similar view that I might have had that it was fairly likely to be terminal in the longer term if not in the shorter term.

 

What about your kids? How did they take it?

 

Kids are a bit more difficult. They were quite quiet. One is, what are we now? One will be forty this year and the other one therefore will be thirty-eight this year. They both went kind of quiet the way men would tend to do but they were quite affectionate, they didn’t remove themselves from my company. And the younger one was due to be married and the only thing he said to me was, ‘I hope you’ll be still here when…’, you know, agitatedly, you know, ‘I hope it’s…’ And I said, ‘Oh yes. I think there’s no problem about that.’ And it went through perfectly. So, natural, worried, anxious but able to talk about it, they didn’t remove themselves. They were helpful. One daughter-in-law very good. The other one who hadn’t by that time become a daughter-in-law simply had to learn about it later.

Mike had already retired when he developed hairy cell leukaemia. His symptoms made him drop some of his voluntary committee work.

Were you still working when you had your illness?

 

No.

 

You’d already retired?

 

I’d taken early retirement. Happy to. Should never have been a solicitor but I was and so when the opportunity came I said, ‘No I’d like to try for retirement.’ And I got it and so I went.

 

So how much did your illness interfere with everyday activities?

 

Well my illness was not apparent until it was actually diagnosed, although I’ve described how the symptoms made me less able or willing to do things. I suppose I’d come down an element in what I was doing but post-retirement I’d got very involved with the Scottish Inland Waterways Association, and I was secretary when I had the diagnosis, and so I dropped that. I dropped a committee for the Episcopal Church which I was engaged upon, which was the development in church terms within the south east wedge, which is a development of the city on the south east sector. And that would have been quite promising to have gone on with. In a way I look a bit fraudulently at it now but equally I’d done my whack and put a bit in so I think it was probably as well to let other people take it over.

 

I’ve come back to do church things. I don’t do anything officially for the canal people now but we go out with the boat from time to time. So in a way I’ve just sort of come down a notch or two. I’m less prepared to take on the administration of things but then in things like Leukaemia Care I’ve added a lot more that I’m doing positively.