Brian - Interview 01

Age at interview: 61

Age at diagnosis: 60

Brief Outline: Blood tests for another condition revealed low neutrophil counts, which led to a diagnosis of myelodysplastic syndrome but he was later told he had leukaemia. He was treated with 4 cycles of various chemotherapies and is in remission.

Background: Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.

More about me...

Brian went to the GP about a raised tendon in his hand and had blood tests done, which showed that his neutrophil count was low. When he asked what was the worst possible cause of it he was told leukaemia. The blood test was repeated and he was referred to a specialist. He had tests done over a six month period and was eventually told he had a type of myelodysplastic syndrome called refractory anaemia with ring sideroblasts, which carried a small chance of transforming into leukaemia and was only curable by a bone marrow transplant. He was too old to have a full transplant but could have a mini transplant ideally from a sibling donor. He spoke to his sister and they both went for tests at which point he found that his neutrophil count had dropped even lower.

 

After a few weeks he had a bone marrow biopsy and a blood transfusion and was told he had acute myeloid leukaemia. He found it difficult to understand that he could have such a serious illness as throughout the period of investigations he had felt completely well and had been living a normal life.

 

He started on a course of chemotherapies at a specialist hospital. He had his own ensuite room to minimise the risk of infection and was treated as an inpatient. He had four cycles of chemotherapy administered via a Hickman line, each scheduled to last 4 weeks. His blood counts recovered very well from the first cycle but were slow to recover from the other ones causing the following cycle to be delayed. He was able to attend his grandson’s christening after the 1^st cycle, had to miss an important party during the 4^th but was delighted to be able to attend and take a full part in his daughter’s wedding after completion of treatment. Side effects included mouth ulcers, nausea and vomiting and hair loss. He developed pneumonia during the 1^st cycle of treatment and the hospital superbug C. diff. during the 3^rd cycle.

 

He is in remission but is unclear as to whether he did or did not have MDS before the leukaemia or whether he still has MDS. He also wonders what could have caused his illness. He feels anxious about check-ups in case there is any bad news. He talks of positive outcomes of his illness such as new hobbies, closer friendships and family relationships. He is looking for new challenges in life.

After first leaving hospital Brian worried about having no blood tests done for a month; he was anxious before his first check-up that the results might be bad.

So the story so far is quite promising medically. But I don’t know how it’s going to evolve. What you do find is, when I first came out after the end of the fourth cycle, initially I was going back to the hospital two or three times a week to have tests, then it went to once a week and then it went to once a month.

 

You go through, I mean, the first month I was really, when it went to a month, I was really quite worried in that first month because I thought, ‘Heck’, I know how quickly it came up on me when I was first diagnosed, ‘There’s an awful lot that can happen in a month’, and, ‘What sort of state am I going to be in when I go back in a month? I don’t know what the counts are doing.’ So I’ve gone from having a count every day, or even twice a day sometimes, to suddenly having a count once a month. It can be quite worrying that. And as the day approaches you get more and more nervous about what you’re going to hear, because you don’t want to hear bad news, you want to hear the counts are still at least the same as last time, or up a bit.

 

When I went back after the first month my haemoglobin had gone up - good news - but for the first time my neutrophils and my platelets had gone down. They weren’t at serious levels, but they certainly had gone down and the platelets were really quite low. Consultant' ‘I’m not worried. This happens. Your counts will go up and down. You will probably live with low counts for a long time. It can take a year. It can take more than a year for your body to recover from what it’s been through with all the chemotherapy.’

 

And it gives you confidence for a few days but you still worry about it because I’m still not quite sure what’s going on. The best thing to not worry is to socialise, to meet people, to talk to people, to go out, to do things, to engage in all sorts of activities. And I found that helps quite a lot.

A pain in Brian's back turned out to be due to pneumonia. He stayed in hospital for an extra week on antibiotics, but didn't feel too bad.

The other thing was that one morning I woke up and I felt a pain in my back, and it was like a stabbing pain and I told the doctor about this and, a bit uncomfortable, anyway they did an x-ray and they discovered that I had a slight case of pneumonia, again, which is, I think, a common side-effect, if your immune system is knocked out. Again, this is something that sounds quite worrying initially, pneumonia, you know, that sounds quite serious, but in fact they put you on strong antibiotics, again, it’s not tablets, but it’s injections they give you, and all through the line, and it took about a week to clear up.

 

The only trouble is, I got this pneumonia almost at the end. It should have lasted four weeks, this cycle of chemo, and my blood count should have been recovering after four weeks, and, as it turned out they were, but the pneumonia came just about the end of the four weeks, and they kept me in for another week as a result. So in the end I was in for five weeks on the first cycle.

 

But if things go well normally each cycle of chemo in this particular instance is four weeks, in the hospital, in this room, being treated, which is quite a long time. And you do begin to feel institutionalised a little bit after you’ve been looked after for four weeks, with everybody giving you lots of attention.

 

Again, although the pneumonia sounded serious, I didn’t actually feel too bad. I felt a little bit rough for a few days, but the antibiotics sorted it out, and it didn’t stop me watching the television, doing my work, using the hi-fi and so on, and seeing visitors, I felt pretty reasonable throughout.

Brian's friends and family were shocked at the diagnosis because he had always been healthy. He thought they tried to conceal their true feelings by presenting a positive front.

I mean, the first thing that you do notice is that the friends initially were, you know, a lot of my friends, and they’re spread all over the place, and family, I mean, were initially shocked, because Brian is such a healthy person. How could he get anything? And, why? Why? You know, why do you get leukaemia?

 

One of the things people expect, one of the things I discovered fairly early on is that your friends and relatives are obviously very concerned about you, and, well, as I was but, I sometimes feel that it’s worse for the friends and relatives than for the person going through it, because they have absolutely no control, they’re not a part of it, they can’t do anything. But also they’re concerned, they fear what might happen. You know, they’re going to lose some loved one. And I think, I mean they tried to cover it up, I think, to some extent, and everybody tries to be incredibly positive. They’re giving you lots of positive messages and sort of saying, ‘You’re going to be okay.’ And I got positive messages in all directions.

Insertion of Brian's central line was quick and easy under local anaesthetic; he soon got used to having it and had no problems with it, but removal after 6 months was less easy.

Oh yes, there’s a bit I forgot actually, because the other interesting bit of the experience was they told me that I would have four cycles of this chemo, but also, because I was going to have so much chemo, and also they were going to, obviously, be taking blood samples all the time, they need to put a line into me and this is, well, it’s called a Hickman line, and what they did was, they drill a hole into your - and it sounds nasty this, it’s not drilling -they basically just put a hole into your chest and they take a line up, a plastic tube it is, under the skin, over the collar bone and down into the jugular vein. It sounds horrific, and when you hear it you think, ‘What’s that going to be like?’ But in fact they put it in under a local anaesthetic. I was awake throughout, I didn’t feel a thing. It was again, quite an interesting experience because I’d never had any of these sorts of things before.

 

And it went in, and they dressed it all up and really, I mean I lived with that line for the next six or seven months, and it became part of me, and I even became completely unaware of it after a relatively short time. Looked a bit odd but it was, you know, I didn’t have any problems with it.

 

I do know that some patients do tend to reject the line and if that happens they have to take it out and re-do it, and that can be nasty. In my case, I didn’t have any problems, and I’m sure, I think it does vary from individual to individual, it became a part of my body, and in fact the worst bit was taking the line out again six months later, because they couldn’t get it out, the flesh had actually grown around the line and they had to cut down with, again, with a local anaesthetic, and sort of cut around the line before they could pull it out.

Brian's 3rd course of chemotherapy was delayed because his blood counts were too low. A longer break after the 3rd course meant they recovered better, but it was slower each time.

Anyway, went home. My grandson, who was how old then? He’d been born the year before so he was about a year old, he was getting christened in the May, and I was home in time for that, so we had a nice family party at my son’s house. Went to the christening of my grandson and enjoyed it, and the day after that I went back into hospital for the third cycle.

 

I went in, they took a blood count, and he said, ‘Oh, your counts aren’t high enough. They’ve actually dropped back down since you came out.’ A week, it was only two weeks gap. They said, ‘We can’t start you unless your counts are above a certain level. The neutrophils we like to have above one.’ And I think I was on about point six or point seven, so it wasn’t very good, much lower than when I’d come out at the end of the first cycle. And most of the other counts hadn’t fully recovered either and, I mean, the general consensus was, you’ve come back too quickly, you need more time.

 

And, of course, from my point of view it was slightly disturbing because my counts had gone zooming up on the first cycle, they’d gone to the highest they could, and now all of a sudden they’re struggling to even get to the minimum to start the third cycle, so it was quite worrying.

 

And, of course, I was also thinking about the fact that the longer we left it, the less chance there was for me to go to this party, which may sound like, you know, nothing I should be, something I shouldn’t really be worried about, but at the time I really, it was a family thing, the whole family were going. You know, we all wanted to be there.

 

Anyway, I went back a few days later, had another check and eventually they started, I think I was still home another fortnight and by this time the chances of going to this party were fading rapidly. And the outcome was I actually never made it to the party, I mean I was in hospital having the third cycle of chemo.

 

But we eventually started, I think, the second week in June we started the third cycle.

 

The consultant said to me that before coming back for the fourth cycle, because of what I’d gone through on the third, I could have a few extra weeks, and in the end I was home for eight weeks. So I had a really good long recovery spell, but I was pretty much up and running again within a few weeks, cutting the grass, you know, digging the garden, visiting friends, getting around, doing all the things that you normally do. I mean I really was up and running relatively quickly and that was always a good sign.

 

The counts recovered fairly well. They didn’t zoom up again, they went up slowly, but certainly the neutrophils got into normal range, the haemoglobin was nearly there, platelets is the other thing that they were all worried about, that’s the cells that help the blood to congeal.

 

And what they did, they seemed to be very slow coming up on the third cycle. They were fairly slow on the second cycle, but the third cycle they really were slow, and they never, I don’t think they ever got up above sixty-five. The beginning of normal range is about a hundred and fifty, and mine never rose above sixty-five when I was home between the third and fourth cycle.

After three weeks in hospital Brian's taste buds had changed and his appetite reduced so he enjoyed hospital food less. Family and friends brought in food from home instead.

So for the most part it wasn’t a bad experience. I think the teeth were the thing that irritated me most, when the teeth and gums started playing up, and of course the other thing is it does affect your appetite, the chemotherapy. Things begin, you’re not aware of this because it’s subtle changes, but the taste of things does change.

 

Now, I was eating NHS hospital food, it’s not brilliant, the hospital I was at they’ve got quite a good reputation for the food that they serve. And initially, and particularly on the first cycle, for the first two or three weeks, I was fairly happy with it.

 

But I began to get fed up with it and I think my taste buds had also changed during that three weeks, that I did begin to find that I didn’t enjoy the food very much and my appetite dropped down. It was quite good in the hospital because they allowed the patients’ relatives and friends to bring food in, and you could get it heated up in a microwave, so you could have some alternative choices.

 

And that’s the way I got through the first cycle, towards the end I began to eat, the number of hospital dishes that I liked, I think, had gone down to one by the time I got to the last week, but we managed to top up food from dishes that my wife brought in for me and that friends brought in for me too.

Brian achieved remission from his AML* after his first course of intensive chemotherapy but went on to have three more courses of treatment.

So have you actually been told you are in remission?

 

I was told I was in remission, and this is very interesting this is. After the first cycle I was told I was in remission because when they did my counts, they did a bone marrow biopsy after the first cycle - this might be of interest to people- I had something like fifty per cent leukaemic cells in my bone marrow when they did the first bone marrow biopsy; by the time I’d had the first cycle it was less than three per cent. Morphologically - the consultant used this word - he said I was in remission. I mean they basically said, ‘If you came in with that we would just say you were.’ And then, looking at the fantastic counts I had, they would have said I was in full remission at that point. They carried on doing the next three cycles because it’s belt and braces. I mean they really said, ‘We need to consolidate what we’ve done. We reinforce what we’ve done in various ways, and best practice is you have four cycles. The fact that you’ve responded so well on the first one is fantastic news, it’s very good. It means that there’s more chance that the second, third and fourth cycle will be good.’

 

I did wonder at times whether or not I needed four cycles having had such a good response in the first cycle, particularly when I discovered my counts were recovering so badly, so slowly, I wondered, ‘Well, did I really need the second cycle? Maybe I should have gone straight to the third one’, which was a different combination of drugs.

 

And it did go through my mind, but the consultant was adamant, ‘No, four cycles it is.’ So you can’t fight the experts.