Michael - Interview 16

Age at interview: 61

Age at diagnosis: 58

Brief Outline: Michael was diagnosed with acute myeloid leukaemia after scratches on his hands acquired through gardening did not heal. He was treated with two cycles of chemotherapy and an allogenic reduced intensity bone marrow transplant. He is in remission.

Background: Michael is a retired charity director. He is married with one adult child. Ethnic background: White British.

More about me...

Michael scratched his hands on some roses while gardening. When the scratches didn’t heal his GP suggested a blood test. The next morning he went to a nearby hospital for his blood test before cycling to work. Later that day the hospital called saying they wanted to admit him that evening for further tests and he was advised not to cycle. At the hospital he felt that the doctor was being indirect so explained that some of his work covered the leukaemia field, at which point the doctor told him this was what he had but they needed more tests to determine which type.

 

He was allowed home for that night and returned next day for a bone marrow test and was told he would be fitted with a central line on Monday and start chemotherapy on Tuesday. At home over the weekend he made a series of phone calls to inform people of the situation, including his employer, saying that he aimed to continue working from his hospital bed.

 

On the Monday Michael was told the specific diagnosis of acute myeloid leukaemia, warned that a bone marrow transplant was likely to be needed, had his Hickman line inserted and was installed in his isolation room. He only left the room for a weekly x-ray and had to eat a neutropenic diet to reduce the risk of infection. He was able to work via an internet connection. He stayed in hospital for a month for his first cycle of chemotherapy, which caused fluid retention in his legs. He was allowed home for 4-5 weeks before being admitted for a 2^nd cycle, during which his hair fell out and he lost his sense of taste. His recovery from the second cycle took longer than expected so the consultant omitted the planned 3^rd cycle, moving straight to a reduced intensity bone marrow transplant using material donated by his sister.

 

He was allowed home 5 weeks later and in a few days had to be readmitted for antibiotics to treat an infection in his Hickman line, which was removed. A few weeks later, despite being on prophylactic antibiotics, he developed shingles, and the dose of his antibiotics was increased. Three years on Michael is still in remission.

Michael had been shocked by the diagnosis of AML* because he had so few symptoms and felt well.

I mean I was completely staggered by this diagnosis. I felt fit. I mean for instance I played a cricket match in the week before I went to my GP in the normal way. I mean I’m an ageing medium paced bowler but that requires a certain amount of energy output and I had no sense of being unable to do it. I was still doing my nine mile round trip by bicycle to my office every day and everything else was normal. So this was, I had no sense that I was unwell.

 

One of the things I’ve discussed with doctors and others since is, given that I presented on the surface as a fit and healthy man in his late fifties, and that many other leukaemia patients tend to come in on the back of some other illness which has basically developed on the back of a compromised immune system, pneumonia is an obvious case, how long was it going to be until I really felt ill and went to the doctor for reasons other than scratches weren’t healing? And originally I thought the answer would be some months, but more recently the indication was it would have been a matter of weeks, and I don’t know the answer to that, but I had no symptoms that I was aware of, I had no sense of being unwell. When I went for the blood test I’d taken my GP at face value when he said, ‘I think this is probably a viral infection that we’ll never trace and it’ll clear up of its own accord.’ I’ve talked to him since and he claims he knew there was something wrong. If he did he was concealing it very well.

Michael went to his GP when scratches on his hands sustained while gardening were not healing. A blood test subsequently identified AML*.

I guess this story starts on the 8th of September 2004. That was the day when, under pressure from my wife, I called my GP in London about a little problem that did not seem like a medical emergency. And this arose from a few, a couple of weeks earlier I’d been out of town on holiday, among other things tending the couple of roses that we have in a little garden in Dorset, and they’d scratched my hands a bit. And when I got back to London I noticed that the scratches weren’t really healing, so I thought, ‘This will go away in a day or two’, and after a week it hadn’t. So my wife said, ‘You really should go and see the doctor.’ And in traditional male format I said, ‘No.’ And then I one morning I thought, ‘Well, yes, I’ll call the doctor.’

 

So I called the surgery expecting to be offered an appointment the week after next and was completely astonished to be offered an appointment at 5.10 that afternoon. This was under the new NHS regime under which he kept one day a week free for walk-in appointments and I happened to have called on that one day. So I went off to see the GP who’s about two hundred yards from my home. He poked around a little and said, ‘Well, I can’t see anything obviously wrong with you but it’s just worth having a blood test. This may well prove to be some kind of viral infection that we can’t do anything about and it’ll probably clear itself up but if you go down…’, not to the major London teaching hospital, which was about ten minutes walk away, but to a satellite of it about fifteen minutes away, ‘and you get there at the start of the day you’ll be in and out in forty minutes or so.’

Michael's view from his hospital window was depressing, the heating and air conditioning worked badly and water started running down the wall so he was moved to another room.

Here I was in an isolation room in a Victorian wing of a hospital constructed so that I looked out on a window into a similar room in the next ward. Red brick, decaying concrete and pigeon droppings with the occasional appearance of a very fat pigeon on the window sill opposite me. And that is dispiriting, to say the least, that even though this hospital was on the edge of a park there was no way you could see a blade of grass except for one that grew in some crumbling masonry.

 

There were various alarms and excursions during the hospital time. In the first period there was a terrible problem with temperature control in the room and I got pretty angry about that. And then one evening water started streaming down one wall, obviously related to the failures of the heating and air conditioning system, and when the charge nurse saw what was going on she said, ‘Clearly this won’t do in a room that’s supposed to be in near sterile conditions.’ So I was moved into a room which actually proved to be far better and where, by careful positioning, I could get a reflection of the park through a window on the opposite side of the structure for several hours a day, which was a surprising sense of triumph about being able to see something in the outside world.

Michael complained to hospital management when he found a cleaner flicking dirt around his isolation room with a duster because her mop had gone missing and she hadn't been given a replacement.

There was another incident when the lady who was the regular cleaner for our part of the hospital reappeared. She’d been abroad for a while and she’d actually gone through some touching up of her hair so I didn’t recognise her for a day or two. And then I realised it was the same lady having had a few years taken off by a treatment her daughter had ordered while she was abroad. And she was using a duster to flick around the room and large clumps of dirt were flying across the room in this special isolation room that I described before. And I said to her, ‘Is that really the best way of doing it?’ She said, ‘Somebody stole my mop while I was away and I’ve reported it several times but they tell me I can’t have a replacement.’ And I really got very angry about that and eventually I think made enough fuss for some senior person to come in.

 

And I said, ‘Look, if it wasn’t for the fact that I’m confined to this room I’d walk up the street and spend ten pounds on a new mop. But given the standards that you’re trying to retain in this room this just isn’t working. It’s absolutely stupid and whatever protocols you are applying on the replacement of a missing mop they’re not right.’

Following discharge after a stem cell transplant Michael's central line became infected. He was readmitted for antibiotic treatment and had the line removed.

So I think probably five weeks after I’d gone in for the transplant I was discharged from hospital in February 2005. I was very weak at that point. And within a couple of days I started to feel still weaker. And at one point I was due to come in I think for a blood test, which I was having every day or every second day in the outpatients unit of the hospital. And when I got to the street entrance to the hospital I had to call ahead to the outpatients room because I wasn’t sure that I was going to be able to walk that distance. And they took a very quick look at me and decided that the Hickman line that I mentioned right at the beginning of this was now harbouring quite a severe infection, something that had been hovering around me at various points through this, so they had to remove the line in a hurry. I was rather sorry to see it go. The great thing about the line is you don’t have a new needle in every time a blood test is taken, and when your blood is being tested at least daily, as well as things going in the other direction, having the line is in a way quite reassuring.

 

But we got over that. I was back in hospital for three or four days in a ward which was no longer an isolation ward, and after the privilege of having a room to oneself I actually found it rather harder for those three or four days when I was at a pretty low ebb in those surroundings. So given heavy doses of antibiotics and discharged.

Keeping in touch with work during hospital treatment enabled Michael to return to normal work performance within two months of hospital discharge; he later wondered if he'd gone back too soon.

I managed to continue operating at usual capacity probably within two months of discharge from hospital I felt I was back as much as I had been. And then I reread some of the literature and saw the advice that people undergoing this sort of treatment should expect to return to their normal work routines steadily over perhaps twelve months or so. So I used that as a reason for going to my employers and saying, ‘Actually, perhaps I came back a little bit prematurely, and as my daughter will be getting married in America in mid-November I want to be there for that and I’d really like to stay in America through to Christmas that year, and so take a bit of delayed convalescence at the end of the year.’ But that was for personal convenience rather than because there was any great need in my own mind for it.

 

Once I got back a reasonable degree of physical strength, I found there was no problem about finding the mental energy to do what I’d done before. And part of that was that I had stayed in touch with what my working role was throughout the period of being under treatment. I think it would have been much more difficult if I’d cut off completely for that period of 6 months and then coming up to 59 it might have been much, much more difficult to get back into and much more difficult for my employers to see any logic in my getting back to it probably.

Michael dissuaded his wife from stopping work; he thought she didn't need to be with him all the time and would need some respite from supporting him.

Can you tell me a bit about how your wife coped with your illness?

 

I think it was much tougher for her than for me. The implications probably sank in a lot more heavily. She was hugely attentive and supportive and alerting all our friends, my friends, her friends to what was going on and what they could do to help. At that stage her main occupation was as a volunteer remedial literacy teacher in a difficult area of South London. And one of the questions in her mind was whether she should abandon all that and one or two other regular things she did. And I encouraged her after the first week or so to return to that regular pattern of work because she didn’t need to be with me all day every day and she needed really to have some respite from the pressure cooker she could be in. So she did that and I think that all worked reasonably well for her. And I think we sat down quite logically and made sure that affairs were in order in case things didn’t work out sensibly.

 

She had a very good relationship with the doctors and the nursing staff and was always welcomed except by the catering manager who kept finding her using the staff microwave which only the nurses were allowed to use. But apart from that little battle that was fine.