Ian - Interview 97

Age at interview: 43

Age at diagnosis: 35

Brief Outline: A period of stress and tiredness led to a diagnosis of acute lymphoblastic leukaemia. Treatment included chemotherapy, total body irradiation and autologous stem cell transplant. He is in remission.

Background: Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic Background: White Welsh.

More about me...

Ian felt stressed and generally unwell and went to his GP with a variety of symptoms including tiredness, pain and swollen lymph nodes on his head. The GP sent him for an x-ray and advised him to take some time off sick. Later the same day Ian felt worse and phoned a colleague, who came round and called the GP out. Ian spent five days in intensive care while the doctors figured out what was wrong. He was given dialysis for kidney failure and was started on high dose chemotherapy.

 

Ian was diagnosed with acute lymphoblastic leukaemia and told he would need 6 – 8 weeks in hospital for chemotherapy. During treatment he developed a deep vein thrombosis (DVT) in his left foot and needed heparin injections in his abdomen. Ian was eating poorly because he found the hospital food unappetising and the nurses told him to eat otherwise he would die. They gave him high energy drinks and he began to pick himself up physically. After about six weeks he broke down and begged to be let out of his hospital room and was allowed to be wheeled around the hospital grounds, which helped him to keep going. He was later allowed home for a visit and spent increasing amounts of time at home between treatments over a period of four months. He was then enrolled onto a clinical trial and received total body irradiation followed by an autologous stem cell transplant. It took three weeks for his immune system to recover. This put him into remission.

 

Ian’s chemotherapy was administered intravenously through a Hickman line and some intrathecally (in his spine). Treatment side effects included mouth ulcers, hair loss, diarrhoea, vomiting, rash, night sweats, and he has been left with numbness in his feet. He experienced complications including pneumonia, sight loss requiring cataract operations, and a second DVT that went from his leg to his lung. He takes warfarin daily to prevent further DVTs.

 

After about a year’s absence Ian returned to work on light duties but soon decided to retire from police work. They moved from Wales to England and he became a house husband while his wife worked. After a while he felt he wanted to do something else again and retrained as an occupational therapist (OT). His job soon took over too much of his life again so he decided to become a self-employed locum OT instead.

 

When Ian became ill he was living in his native North Wales working as a police detective, a job that dominated his life. His marriage was suffering as a result and his wife moved back to England, only seeing Ian at weekends. Once he had been hospitalised his wife came back to attend to him while their children were looked after in England by her parents. Ian says his illness made him realise how much he loved his wife and they have been together ever since.

 

He had pneumonia during his leukaemia treatment and 8 years on still gets chesty; having moved area he has to explain to his new GP the urgency for antibiotic treatment for his chest.

No, no I’ve had, when I was ill I had pneumonia as well, which was another issue I had to deal with, I think. My chest is not the best and I and do struggle at times, so I get a bit chesty or stuff, I have to down tools, so to speak, quite quickly now, which makes you think, ‘Oh what’s happening?’ You know, ‘Where am I going, what’s heading?’ And I do get a bit, but invariably it is what it says on the jar, I’ve got a chest infection, I’ve got, but I do get check outs and have antibiotics quite soon now. But I again I have to explain to doctors, we had to tell doctors exactly where I’m at in life because they don’t know you, they don’t know your history and you really do have to persist with them I think.

 

And explain to them why I don’t want to have a chest infection regardless of, you know, how it will come or go or whatever, that I need it to be cleared up for my well-being really.

 

Yeah.

Ian had decided that his family was complete before his leukaemia diagnosis; his doctor was clearly uncomfortable raising the topic of infertility so Ian was able to assure him that it didn't matter.

It’s just occurred to me, presumably there might have been some fertility issues with some of your treatment…

 

Yes.

 

…I haven’t asked you about.

 

No no it’s okay. 

 

Tell me all about that.

 

Yeah that was quite funny actually because it was one of the, I think one of the doctors, his dreaded speech, and I was able to say to him, ‘You don’t need to worry. I’ve had my two children. We didn’t want any more. I volunteered to have a vasectomy.’

Ah right.

 

And I’ve had a vasectomy a few years before.

 

So the doctor, after working himself up to quite a state, to tell me there might have been issues, because you would have been too late, that’s right, for me to... Because sometimes they can take samples and store them.

 

It would have been too late for myself and that’s why he was working himself up, because it was too late. And when I told him this he just he just went, ‘Phew’, you know, ‘Fine’. 

 

Because I’d always decided two children for me in life is enough to look after, regardless of, you know, how things, because all my friends are divorced or what have you, and that’s two children for me is enough, and happy with that, I look after those two as best as I can. So it wasn’t an issue.

 

Good. 

 

Luckily enough. Yeah.

Ian has had two deep vein thromboses since his leukaemia so has to take warfarin for the rest of his life to thin his blood to avoid further clots.

I was admitted to hospital a Monday a few months ago with a DVT in my right leg. On that morning I was admitted I was at the haematology specialist’s and I told him that I wasn’t feeling very well. I told him I was thinking of changing jobs because I’d been a bit, struggling with it all, and, ‘Your blood’s fine.’ That’s what I was told. ‘Oh well your blood’s fine.’ So I said, ‘Okay, thank you.’ And we left it at that. 

 

And that evening I was actually admitted with a DVT because my leg had swollen. 

 

And I think on that day when he said, ‘Oh your blood is fine’, I should have said, ‘Yeah but my leg hurts as well.’ I didn’t. I just said, ‘Okay thank you.’ And off I went. 

 

So you know it’s, and I wish I could change that a bit and be a bit more accurate. Maybe I need to plan a bit before I go in to see them and say this, that and the other, because I forget and I’m gone and oh, it’s afterwards and I think I should have said this and that and the other.

 

So what’s it like having a DVT?

 

This second one shot into my lungs, so it actually got into my lungs. The first one just stayed in my leg, quite a big one, painful because my feet are numb from my treatment. The soles of my feet are actually numb.

 

Are they?

 

Yeah. Yeah they’re just totally numb, so I deal with that, and now on top of that I have two swollen ankles and they tend to swell, I need to keep them up if I’m at home, and keep active on them. At the time it’s really painful and it swells up and it’s quite a lot of pain in terms of pain, but in comparison to the pain that I went through with the leukaemia and the treatment it’s, if you call that a ten, it’s a five.

 

Okay.

 

Still very, very uncomfortable. 

 

And so I had to have Clexane injections again into my stomach, so that was revisiting an old friend for a week at [my local hospital] and now I’m on warfarin for life, so I’m going to clinics every week, every two weeks to check on my blood. But hopefully that’s, you know, that’s where I am. 

 

So warfarin is one pill a day is it or…?

 

One, yes it’s different doses. They haven’t quite got me right yet and I take, so they take my blood and they give me the dose for the next week. And it’s just fluctuating a bit, they’re trying to get me to a therapeutic level and that’s, as we get to that hopefully the tests will become less and less and they reckon it could be, you know, every couple of months, three months or whatever, which will be fine. I just need to be patient with that.

 

So being self-employed gives me the opportunity to go and give blood that, like I work thirty hours instead of thirty-seven now. I think thirty-seven is too much for me, to be honest with you.

 

So thirty hours seems to do me fine. Yeah.

 

Do you mind taking pills every day of your life?

 

I forget sometimes, not now, when I was younger and hard, a bit hard-headed, just a few years ago I’d have said, ‘Oh God no.’ But I very quickly adapted to it and I take them tea-time, into a routine so if I forget, it’s very rare. It’s happened once or twice but it’s part of my routine of taking them at tea-time. And I think by doing it like that it’s not to