Neil

Age at interview: 50

Age at diagnosis: 44

Brief Outline:

Neil was diagnosed with acute myeloid leukaemia after feeling weak and lethargic and having a respiratory infection. He spent 7 months in hospital having 5 courses of chemotherapy as part of a clinical trial, which put him into remission.

Background:

Neil is an accountant. He is married with 2 children aged 17 and 15. Ethnic background: White English.

More about me...

Neil had been feeling weak and lethargic, needed antibiotics for a respiratory infection and still didn’t feel right. His acupuncturist recommended he see his GP. The doctor took a blood test and phoned him the same day to say he should go to his local hospital that evening where there was a bed waiting for him. Being a busy man with a business to run he was initially reluctant to drop everything but the doctor was insistent. Once at the hospital he asked why he had been admitted and was told he probably had acute myeloid leukaemia.

The next day the diagnosis was confirmed and he had a Hickman line inserted and treatment started the following day. He was given a chemotherapy regimen called ICE which initially made him feel a lot better but as a side effect developed a swelling in his scrotum, which went away with further treatment. After receiving treatment for a month he was declared to be in remission and allowed home for a few days to recuperate before starting the 2^nd course. His Hickman line was replaced between the first two courses because of an infection. The third course was a different drug combination, which made him more sick than the ICE had and caused mouth ulcers for which he was given morphine. Other side effects included weight loss and hair loss and after each course of chemotherapy he developed septicaemia.

 

After his third course of chemotherapy he had his bone marrow harvested in case he needed a bone marrow transplant in future, as his only sibling had been tested and was not a match. He agreed to take part in a trial to compare the effectiveness of 5 courses of chemotherapy versus 4 and was randomised to receive all 5 courses. The start of his 4^th course of chemotherapy was delayed by low blood counts and a swollen lymph gland in his armpit. At the beginning of the 5^th course he couldn’t face another month in hospital and suggested having the treatment as an outpatient, but after two days he realised that wouldn’t work and stayed in hospital.

 

After five courses of chemotherapy and seven months in hospital Neil was discharged having completed the treatment.

Neil had frequent blood samples taken via his Hickman line during his treatment for AML* and became very knowledgeable about what the results meant but has now forgotten it all.

And then obviously throughout your treatment on the, I was going to say on a daily basis, it wasn’t a daily basis, but every second or third day when you were in hospital you had a blood test.

 

But because of the Hickman line it was very simple, you know, injection or syringe into the Hickman line, extract whatever blood they needed and send them off and a couple of hours later the results came through. And at that point that was one of the things that when you’re going through it you know all about your blood counts, you know all about, all the figures you need to know about you’re on top of. You actually become quite nerdy about it and it’s only once it’s all finished you go, ‘Well I suppose it was important at the time but can I remember it all now? No not really.’

 

I knew that my red blood cells needed to be up at this level and my whites needed to be below that level, and the neutrophils need to be at this level, and until I got to a neutrophil count of one I wasn’t going to get out of the hospital so I needed to work it out to get those up.

Neil had septicaemia repeatedly during chemotherapy when his defences were low. He felt generally unwell each time before a rise in temperature. At the time he hadn't known how serious it could be.

Yes. Septicaemia, the first time I got it I can remember as clear as day because my neighbour, another of my neighbours, had come down to visit. And he’s a very, very bright, erudite man and very quiet. And he’d come to visit me and he’d brought some magazines. And it was the Saturday before Christmas and I appreciated him giving up the time at that time of the year to come and see me. And he’d been there about half an hour and I just turned and said, ‘I’m sorry I’m going to have to ask you to leave.’ And I literally, those were my words. He looked at me and I said, ‘I don’t feel very well. It’s nothing to do with you. I’m just going downhill.’ So, ‘Fine. Okay. No problem.’ And off he disappeared. And it was just something inside me wasn’t right, is all I can say. And that was at about three o’clock. By nine o’clock that evening my temperature was high, I was up at a hundred.

 

I didn’t realise what was septicaemia was, or the significance of septicaemia. You’ve heard about it. You know that you’ve read stories of somebody might have died about it, but that’s other people, it doesn’t happen to you. At two o’clock in the morning now my temperature was well over a hundred and four and I was so low I couldn’t actually reach to pull the call to get them to the bedside. So I’d waited and I’d sweated through and gone through and by the time I actually got the strength and the temperature down, the strength to pull the thing, I was down at about a hundred and three, when all hell broke loose and I was not in the good books. And then it’s straight onto antibiotics and everything else to kill off the infection. Because that’s really what it is, it’s an infection in the gut in the body.

 

But because of how virulent it is, and how fast-acting it is, that’s why they’re glad to have you in hospital. But what it meant was that I learnt from that, so when the next one attacked me on phase two I was at home, and again I was meant to be going to see something at school and I said to my wife, ‘Look I don’t feel up to it.’ And when she came back in the late afternoon, early evening, she said, ‘How do you feel?’ I said, ‘I think I need to get back to the hospital.’ And again it was the onset of septicaemia again and it’s just because your body defences are so low, and often when you’re out for a period of time after your first course of treatment it’s in that.

 

They’ve finished giving you the drugs, the drugs are having their effect so you’ve gone neutropenic i.e. you’ve got no defences. But there’s nothing they can do and they’re just waiting for your defences to come back, and that’s the time when you’re likely to get, or certainly in my case, hit with whatever it was that’s going around.

A specialist nurse supported Neil; he could talk to her about things that he wouldn't raise with his consultant.

So you hadn’t got another patient to talk to but did you have support from other people around you?

 

Yes. I didn’t have, as you put it, I didn’t have another AML patient to talk to, but without getting too specific, the consultants were very supportive. And the clinical nurse specialist, well if it were up to me I’d make them mandatory in every hospital that does it, because they fulfill a role. They’re the link between the medical profession, they are the medical profession but they seem to be that link between the consultants and you the patient. There are certain things that I talked to my CSN [clinical nurse specialist] about that I wouldn’t have spoken necessarily about to the consultant, but they were able to say, ‘Actually you need to talk about that’, or… And because they’re not on the ward the whole time, or in my instance, they had more of an overview, and whilst extremely busy, not rushed off their feet in the same way that the ward staff are handling one thing and another thing and just constantly going round and, treadmill. So yes I mean I got that support.

Neil asked the specialist to allow him a few days to sort out his consultancy business before starting treatment for his AML* but was told that delaying treatment meant he might die.

So what were you doing at the time of your diagnosis? You were working full time and…

 

I was working.

 

…what happened to your life?

 

Life goes on hold. And this was one of the biggest arguments I had with the hospital. Initially I’d said, the consultant and I had a set to, and I really had had a set to. I mean it wasn’t a screaming match, but we were both very forceful on the points that we were putting across. You know, I had clients to service. I had work to do and I needed to get it done. ‘Leave me four or five days, I’ll get it done and I’ll come back in and start treatment.’ It was explained to me that if I had done that I probably would not have seen Christmas. So the choice of course was mine but understand we were in a situation where treatment needed to start, and the longer you left it… So yes I mean I was self-employed, consultancy business, that went away, because it was newly established.

Neil was impressed by the hygiene precautions staff took when he was in isolation but surprised that his wife and children did not have to take any precautions when visiting.

Can you tell me a bit about being in isolation when you’re having treatment and what sort of precautions you and others had to take?

 

Yeah. The hospital I was in had a series of, well they referred to them as one-bedded wards, but basically, I mean fundamentally it would be like going to a hotel with a single room and ensuite facilities. It’s all very clinical, very clean, and off the room you had a room with a shower, a basin and a loo. And the reason you’re in isolation is because they don’t want you to pick up germs from other people. It’s not that you might infect others, it’s that you might be infected by them. And normally when I was in there nurses would come in and administer treatment and always washed their hands and put on the surgical gloves. And when I was neutropenic then quite often they might be wearing a plastic apron. I think I’ve heard this referred to somewhere as barrier nursing, it really is creating a barrier around the patient to prevent the germs from getting in. But of course all that’s undone when visitors come to see you because they’re not in the same way. And you can’t stop the family coming in and I wouldn’t want, you wouldn’t want them to because, you know, greatest thing to me was for my wife or the kids to come in.

Chemotherapy gave Neil painful mouth ulcers. Morphine tablets relieved the pain but he didn't like the highs and lows it gave him so he was later taught to self-administer it with a syringe driver.

The pain from the mouth ulcers was something I’d not experienced before, so they put me on the, oh Christ what was it? morphine. But they gave it to me in tablet form and I couldn’t get to grips with it. It was because of the - and being somebody who’s fairly anti-drugs anyway - it was the highs and the lows. When it worked, fantastic. But when you came off it the pain came back with a vengeance. So I got to the point after two days, or a day or two days and said, ‘Look. Forget the morphine. I’d prefer to be in constant pain which I can manage rather than the highs and lows.’

 

And the nurse specialist came and said, ‘You can’t do this. This is ridiculous.’ And I was introduced to the syringe driver. And if you don’t know about it and you have pain it’s worth investigating because it was a 24 hour supply of morphine. And it was great because it then made me able to manage that side of it.

Neil had no stem cell donor so had bone marrow taken from his hip bone in case he needed a transplant in the future. The procedure was done under general anaesthetic and he felt sore afterwards.

Okay. Then at one point you harvested your stem cells for a possible transplant.

 

Yeah.

 

Can you tell me about the harvesting process?

 

As I said, I was sent up to, I was given the option of going to a hospital locally who had just started this practice, or going to London. I decided that actually I would prefer to go to London where it was a routine procedure as opposed to a newly established procedure. And effectively what happened is you’re really not aware of any of it because you are under a full anaesthetic. You go into the operating theatre and they drill four, five, six holes into your pelvis.

 

And they’re going into the bone, into the marrow, and then taking out the bone marrow. And that is then cleaned and stored in an ice, however, refrigerated, and that’s held for five years. And as I say, I looked at it as an insurance policy. Wasn’t going to need it. I knew I wasn’t going to need it. I was convinced I wasn’t going to need it but as there were no other people I knew who were a match, because they’d done the test on my brother, who was the only sibling I had, and he wasn’t a match. And the chance of being a match was only one in four so it’s not as high as you might have expected. And so I thought, ‘Well for the sake of a couple of extra days in hospital you’d be kicking yourself in years to come if you had a relapse and you had needed bone marrow transplant and you’d had the opportunity and you hadn’t done it, so why not?

 

Had the harvest, came away, I think I’d describe it, I mean I went up by train and I came back by train and it just felt as though somebody had kicked you. They did say I’d feel as though I’d been kicked by an old, by a mule or a horse. And again I think I was relatively fortunate because it was an extremely old nag that had kicked me rather than a young frisky thing.