Jeff - Interview 29

Age at interview: 68

Age at diagnosis: 67

Brief Outline: Jeff was diagnosed with acute myeloid leukaemia on a blood test after developing an infected navel. He was at increased risk of leukaemia by previously having treatment for polycythaemia. Three courses of chemotherapy put his leukaemia into remission.

Background: Jeff is a retired parcel courier. He is married with three adult children. Ethnic background: White British (Welsh).

More about me...

Before his leukaemia diagnosis Jeff had been treated by a haematologist for polycythaemia (an excess of red blood cells), and had been told that the treatment could increase the risk of developing acute leukaemia.

 

Jeff went to see his GP about an inflamed belly button but was otherwise feeling extremely fit and well. The GP gave him antibiotics and took a blood test. The next day Jeff was phoned by his haematologist asking him to see him immediately. He had a bone marrow biopsy which confirmed the diagnosis of acute myeloid leukaemia. He was told it was lucky that he had been diagnosed so early as if he’d been diagnosed much later he might have died. Within 4 days he was admitted to hospital, had a Hickman line fitted and started on chemotherapy as part of the AML16 trial.

 

The chemotherapy caused hair loss, mouth ulcers, lack of appetite, frequent urination, and weakness. After the 5th dose he had a brain haemorrhage caused by his platelets having dropped very low, and he collapsed. He needed a life-saving operation to stop the bleeding, after which he resumed his chemotherapy and had repeated brain scans to check for any further problems. He remained in hospital for 6 weeks instead of 10 days.

 

After a break of 10 days at home he was admitted again for a second course of 8 doses of chemotherapy. On the 5^th day he developed an infection which was treated with intravenous antibiotics and lengthened his hospital stay again. Jeff spent 5 weeks recuperating at home before starting a 3^rd course of 5 doses of treatment. He developed another infection after the 3^rd dose and once again spent an extra 5 days in hospital. Jeff has been home from hospital for three months, is in remission and recovering well.

 

During his treatment Jeff developed diabetes as a result of the high doses of steroids that had accompanied his chemotherapy. He takes insulin and has to watch what he eats but his blood sugar levels are steadily reducing.

Jeff's niece, a hairdresser, shaved off his beard and head hair but he regretted asking her to...

So did the hair loss bother you at all?

 

No, as I had hardly any hair at all, what’s a few more strands? It’s nothing. The only thing, I had a beard for twenty-odd years and that came off as well because I didn’t want bits falling here and there and I’d look like something from the deep. So I shaved everything off. My niece who runs a salon, she took it all off for me and I looked like a boiled egg. I shouldn’t have shaved my eyebrows off, that was ridiculous. I looked like something from a concentration camp. You know, straight out of the Munsters.

 

But they’d have fallen out anyway so…

 

I don’t know. I don’t know but I know one thing, I used to have, I couldn’t shave a wet shave. I had to have, Joyce bought an electric razor, which I’m no good at, because up until I had this white hair I used to be very dark. And if I shaved in the morning and had to go somewhere in the night I’d have to shave again, and I could grow a beard in twelve days, and my brother is exactly the same. But now I shave sort of every other day, but it took a long time for my hair to grow back on my head. And I don’t think I cut my hair for about six weeks. And then of course I could see it forming and then I would take it down. I always cut it sort of a number two. I used to take it right down to the bone but I don’t do that no more. I’m under strict orders.

Jeff had never felt he had to prove himself as a man, and felt more of a man than ever when he...

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

 

No, not at all. I am who I am and what happened to me was no-one’s fault, just the luck of the draw, and it doesn’t make me less of a man. It makes me more of a man actually.

 

In what way?

 

That I could stand up to this damn thing and beat it, with the help of others. And I don’t need to prove that I’m a man to anyone. I never have done. And I know exactly where I’m coming from and I get on with things. You know, I don’t sort of, well Joyce and I, all the years we’ve been married, like all families you have your ups and downs but you’re always there and never have to prove anything to one another. And I think it’s people who, they come close, the human being what he is, none of us are the same, and there are people feel less of who they are, and I’ve never done that.

Jeff drew support from being prayed for and his belief that an external power was looking after...

What about your faith? You mentioned that earlier. How has that helped you?

 

Very strong. Without it I don’t know, coupled up with the care that my wife gives me and those nurses, but I’ve held a belief for a very long time that there is a power in prayer. And the first time the priest visited me I was on my own and I felt dejected and Joyce was on her way down. And what he said to me and the prayer that he said over me for Joyce and myself, I felt a different man from there on. And I firmly believe, like I told you before, someone up there is looking after me. And I’ve always had the faith. When I go to church I feel in this up-in-your-face, modern world that we’ve got today I find peace and contentment. And I firmly believe if something does you good, whatever it is you shouldn’t knock it. And people who’ve known me for years don’t even know I go to church because Joyce and I, we’re what I would term myself as a quiet Christian. I don’t shout and bawl about my faith but I know that I have it and it’s good enough for me to know that I have it. And it helped me a lot because my own church when I went back that day I was in tears with the welcome that I had and they welcomed me back in from the vicar and I’ve been very, very fortunate. Because I think without something to believe in I think you live in a very negative little world. And sometimes I feel our young people, not that they should go to church because it’s entirely up to them, because you can’t go dictating terms to nobody, but unless you have something to look forward to I think you live in a very negative world.  

Jeff twice had infections and had to have intravenous antibiotics for 5 days. He had been advised...

And on the fifth day of the eight courses of chemotherapy I caught a chill and had a rigor and as a result I had to go on intravenously-fed antibiotics and I had to spend an extra five days in hospital, so that meant a fortnight.

 

I came out of there feeling very ill and very weak and I was home for five weeks and I improved tremendously. And had a random test down in [name of city] they put my name on a computer and pressed the button and it said that I must go back in for another five courses and that would be the end of it, which I did. And on the third course of chemotherapy I had another rigor and I caught an infection and again I had to be put up on an intravenous drip of antibiotics. Well, I spent an extra five days in hospital. On coming out of this lot I was absolutely floored. I was ill. I felt on, like the first lot I went in, that I was going to die. I was so ill.

 

How many times did you have those infections with the rigors?

 

Twice.

 

Twice.

 

On the second visit and on the third.

 

How long did those episodes last?

 

Over a period of three days I had to be put on I.V. antibiotics for five days. I had to be put up because if I had come home and caught an infection I’d have to go straight back. I’d not to go and phone up any other hospital. I had to go straight back into that hospital where they treat me straight away, because they explained to me that if you do get an infection remember you’ve got nothing to fight it and if you don’t come in you’re silly. And I had to have my temperature taken every day, and if it was above a certain amount I’d have to inform them. But if it was above a certain amount I’d have to take it in an hour again. And if it was still there then I would have to take steps to go back to hospital.

During Jeff's first cycle of intensive chemotherapy two blood vessels burst in his skull. He...

Okay. Tell me about this awful brain haemorrhage that you had. How did that come about?

 

It came about, according to the neurosurgeon, as a result of the aggressiveness of the chemotherapy that they were giving me in this AML16 [trial]. And I was told this before I went into hospital that what I was going to have would be aggressive, and if there was any weak points it could find it. And the worst part of it all, it was a double bleed running against one another. And if it met it could have expanded and burst further causing perhaps my death or brain damage.

 

And they rushed me down to the… I don’t remember anything about it. Apparently I was delirious. And one of my children was there and he was very upset, one of my twins. They did the operation and I came round in another ward where I was recovering overnight, and within twenty four hours I was back in my own ward. And my head was covered in steel, all these steel things they clip onto you, over your head to cover it. And I was like the tin man, and it was amazing.

 

And I hadn’t shaved and I had lost four stone in weight from the time I went in until I got back, which was, I would say, in ten days I’d lost four stone in weight. My legs were so thin and I was always fifteen stone, not big big but I wasn’t small. And when I saw myself in the mirror I thought, “God, I’m going to die.” I had jowls down my throat here and I hadn’t had a shave and my beard and my whiskers on my face were growing and this thing on my head. I looked absolutely ghastly and when Joyce came down with my watch, I could put almost my wrists and my arms were that thin. I had lost body weight. My legs were all thin and skinny. I’ve never been like that and it was not nice but, as I said, they did the job and I bounced back.

 

So did they actually open you up to sort it out?

 

When I woke up I had a pipe in my head, a drain pipe for drainage. And the ward sister that was the expert for that type of recovery ward, “Are you ready to go, Jeffrey John?”, she said. That’s what they were all calling me. And I said, “Yes, where are we going?” “Back to your ward”, she said. “Great, hang on. Before you go”, she said, “Don’t take our scrap metal with you.” And she took the pipe out of my head. “Count to three”, she said. On the two she took it and I didn’t feel a thing. And when I got back then the nurses took the steel out in about three weeks. The nurses then took the steel things out of my head and I didn’t feel a thing.

 

So were they clips?

 

Clips. They were about that long, wide and about that long. All put in unison over my head. When I first saw it I thought, “Goodness me”.

 

Have you got a scar? I hadn’t noticed it.

 

I’ve got one there. Hang on, there it is, hang on.

 

It’s obviously not big because it’s not obvious to me and you can’t find it!

 

There it is. And there’s a gap in the back of my head which I can put my finger in. I tend sometimes, if I have a headache I tend to think, “Oh.” But then I don’t worry about it because I take a paracetamol and I thought to myself, “Well, I mustn’t do silly things like that because you don’t tempt providence.” You just get on with it and think better thoughts. And so far everything has been fine.

 

So did you feel peculiar before