Ian

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 her native 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.

Before his leukaemia diagnosis Ian said he knew very little about it, just that it was a serious blood cancer that affected children.

Did you know anything about leukaemia before all this happened to you?

 

Not a lot. Not a lot. I knew it was something that maybe children, it was something a lot of children would have. And it was a cancer type illness. Probably related to the blood, but that’s about, very scant details really, yeah. It was quite a big word, I know that much, it was quite a big word. I knew it was not something that you you’d want to be told about.

Before his ALL* diagnosis Ian had suspected some kind of cancer because he was so ill. Once diagnosed, he felt relieved to have a reason for his symptoms.

So did you understand that it was a cancer when they gave you the diagnosis?

 

Yes, yeah I did, I’d sort of, in fact I knew I had cancer, I guessed cancer before leukaemia, if that makes sense. When I was admitted to hospital I said, ‘I’ve got cancer here’. And then when they said leukaemia it made sense, given the way I was feeling it wasn’t localised or anything, it was all over, just aches and pains. And yeah, it just sort of made sense.

 

What made you think it was cancer?

 

I was purely so ill. I thought, to be this ill it has to be cancer. It’s nothing else. I think I’d gone through everything in my head that it might be, the pleurisy, the…, and I said, ‘No I’ve got a cancer there.’ Because I’ve never felt so horrendously low and in pain and really, you know, just, there was nothing of me. I was gone. I think I really was at death’s door.

 

What kind of cancer did you think you had?

 

No idea. I think testicular came to mind for some reason. I don’t know. It was just cancer. I didn’t get more specific than that, maybe just my testicles or something inside, my bones possibly, I think the bones came into it as well.

 

How did you feel about thinking those thoughts?

 

I thought, ‘I’ve got to get a grip of this. I really have got to get a grip on this’. But I was feeling so weak. It’s funny but once, it was good for me to accept it is cancer. I’ve got it and now I have to deal with it. It was actually a bit easier for me to cope with my situation then actually, there was a reason. Whereas in the weeks before and that morning there was no reason for why I was so ill. But now I actually knew, ‘Well you’re ill because you have cancer, leukaemia, so that sort of helped me in a way actually, in a strange way.

At first Ian had felt less of a man because he was weak and vulnerable and giving up his job as a police detective meant losing his identity. He later felt his masculinity had been restored.

How do you feel about your masculinity? How has this affected how you feel about yourself?

 

Given where I came from, the job that I did and how important masculinity was within my role, because I’d very often be knocking on somebody’s door and because I was involved in some serious crime investigations, including drugs, be throwing somebody to the floor, basically, to try and make sure that we got the evidence. So masculinity was a big part of my life.

 

I felt vulnerable when I was ill, I felt really vulnerable and for maybe a couple of years afterwards, felt very frustrated, I felt very weak and frustrated. And I think that’s to do with physically not being able to do things, but also that I had no role, nothing. I’d been a police officer, I was a police officer, I was a detective constable, acting detective so I was somebody whereas all that had been taken away from me.

 

I was lucky that we moved here to [town], to another location where people didn’t know me as Ian the policeman. If I’d have stayed where we were I think I would still have that on my shoulders and it would be difficult, but down here they don’t actually know me as Ian who was in the police and did this and that. So that’s made it a bit easier for me.

 

And I think I still like my masculinity because I’m playing football again, five a side for two hours a night on a Friday with the lads and I’m playing badminton. So yeah I think I’m back to where I was and I’m enjoying them even more now than I used to, so my masculinity I’m proud I think it’s still there. Yeah.

Ian's mother-in-law looked after his children. He didn't want them visiting him in hospital because he looked so ill, but when he did see them it was a tonic.

I want to ask you about your family and your children because they were very young when you first had this.

 

Yes.

 

How did they cope and how did you talk to them about it?

 

Well they were down here with my wife.

 

Right.

 

Which actually was a bit of a blessing, so they stayed down here. My mother-in-law actually lived with us at the time so, and there’s a lot of family around here, so they would save up here, which was good that my wife could then focus on me, and for months I said, ‘No, they’re not coming up, they’re not seeing me like this, they’re too young. They don’t need to see their dad in this state really. Let me get better. Let me at least look presentable’, because I was just shallow and pale and I think I’d lost about four stone.

 

And yeah so they didn’t come up for quite a long time and they were quite, my decision, very much my decision, and I didn’t want them seeing me like that. And when they came up it was really hard seeing them actually. It was really quite emotional seeing them, and of course they didn’t really grasp it but it was a tonic seeing them as well, yeah.

 

And slowly but surely they came back to live up in North Wales with us, and went back to school there. And they were really good actually to have around then. Quite a tonic seeing them, and it was a good age, they were I think seven and five. I think my son didn’t really have much idea at all what was going on whereas maybe my daughter did have a bit of insight into what was what. But they were really good with me.

Ian's life was very stressful before his ALL* diagnosis so he and his doctors found it difficult to separate the physical from the emotional symptoms.

I think we should start maybe back in around July or August of 1999, when my life was a bit hectic, to be honest with you, I was very busy at work as a detective constable and then acting detective sergeant in the police force, which was dominating my life at the time, it was everything.

 

Family life was really difficult because of that and my wife actually moved back to [town], she’s from [town], and we didn’t split up, but we were really struggling to live up in North Wales together, and work and the language issues and lots of other things were making life difficult for us. So she’d actually moved down to [town] leaving me up there working on my own and coming down here on weekends or whenever I could, really.

 

And it just got to be very, very stressful, all the lifestyle then, and I ended up going to the doctors. Foolishly, I think I mentioned the word ‘stress’, which they sort of seized upon, and said, ‘You’re obviously stressed. Take some time off, you’re ill.’ Over the next few weeks my health just kept deteriorating, the doctors kept saying I was sick, I had pleurisy, I had all sorts of symptoms but nobody mentioned cancer, nobody mentioned leukaemia.

Ian found it helped to present a positive front and use humour when telling others about his leukaemia.

How did you go about telling other people, you know, family and friends and so on?

 

Very straightforward actually. I didn’t hide behind anything and come out and tell people who visited that I’ve got an acute leukaemia. You know, there is going to be a tough few months, but also that I was going to keep battling. I mean I really for most of the time, there were blips, but for most of the time I was really positive and I wanted to let people know that I was positive. So I’d just come out and say it. You know, well this is where I’m at, this is what I have to deal with, you know, it wasn’t, I sometimes have a laugh and a joke, it seems strange but I did with some of the lads who came round we had a bit of a laugh and a joke about things. And we just coped with it and other times we wouldn’t speak about it at all. Yeah.

Ian describes having chemotherapy injected into his spinal canal; he had no problems with the lumbar puncture.

You had some chemotherapy injected into your spine.

 

Yes.

 

Tell me about that.

 

They went through that in some details with me about how it was, about how it could be quite painful and why they were doing it, because they had to gain access I think up to my brain and what have you, and I think I had about five doses. I was okay with that. I think I was, it was done in my bedroom because I had a private suite most of the time.

 

So we were standing in the bedroom and it was a case of me leaning over the window I think, and I would just have a look out the window. That’s the agreement we’d had, and that I’d calmly look out the window. And in fact, one of the doctors was doing it, he was quite inexperienced and I was asked if I was okay for him to do it. And I looked at this South African gentleman and I thought, ‘Well he’s got to do it some-, somebody’s going to have to, you know.’

 

And it was fine, absolutely fine. He was very, very careful. Probably more careful because he was new, and he did another couple of times, so I was okay with it. I know some people have got quite big reservations and concerns about it and it’s obvious from the way they were talking to me, but it’s something that I was quite calm, quite happy with to a degree, and I just I was very good with keeping that advice of staying still.

 

It’s good hour afterwards in fact that I’m sure they told me it was more like half a day if you can, the longer the better, stay still because headaches and what have you were mentioned I think, and dizziness. So I did, that’s where I was at the time, I was quite happy to just lay down and sleep and watch some awful telly. Watched some awful telly, yeah. Yeah so again I followed, I listened to what they say on that one, yeah.

After 6 weeks isolation Ian begged to be allowed out of his room. He was wrapped up warmly and his wife took him around the hospital in a wheelchair. That helped him to face his remaining treatment.

I think maybe after about the six weeks I did start to climb the walls. I’d been in this room for quite a long time, been nowhere. Been showered and bathed by nurses, had very little independence, virtually no, but I was getting better. And I had a breakdown. I just broke down completely, cried my heart out and one of the team, medical team this time, came in, sat with me, and just listened to me really, to be honest, she didn’t even talk a lot, she just listened to me. And I remember pleading, “Can I? I just need to get out”, and so they agreed.

 

Longer than it was worth me getting out, so I was wrapped up nice and warm and I was put in a wheelchair and my wife pushed me round the hospital, which was fantastic for me. It was, you know, fresh air, I’d never put such an emphasis on fresh air before, it was so important. And my wife was pushing me as well and it was a big step.

 

So we came back, that helped me. That helped me tremendously as well to keep going.

Although initially daunted by having to adopt a neutropenic diet at home after treatment, Ian and his wife quickly adapted to the necessary changes.

And you’ve mentioned the neutropenic diet,…

 

Yes.

 

…the clean diet. I didn’t really ask you very much about that. Was that a terrible hassle?

 

Oh yes. It made life very interesting. Biscuits, sealed, everything had to be sealed. So I had to cut the seals so sweets would have to be like Quality Street with a specific wrapper. You know, you couldn’t have a Rolo for instance, that would be no good because once it’s opened they’re all contaminated. Hot meals, well-cooked meals. And no salads really.

 

Something that we got into very quickly. It sounds quite daunting, oh you got to do this that and the other and keeping clean, but it’s something that you adapt to quite quickly and I had hot meals and finding the right snacks. Crisps for instance you can have if you open the packet you had to eat them and I wouldn’t have the energy to eat a whole packet of crisps so it’d be a waste. And fruit had to be cleaned properly and so it was quite a task for people around me to make sure that I was kept clean when I was neutropenic, because I was neutropenic for quite long spells, very low immunity, so yeah. But initially you think, ‘God, what can I do here?’ You quickly adapt and get very fussy with cooking food.

 

Right.

 

And making sure everything is well cooked, properly cooked. So it’s quite a good, in a way it’s quite a good thing. A skill there I think.

Treatment made Ian extremely tired and he had to rest more. Having previously been a fit man, he found it hard to accept the change to his lifestyle.

Fatigue - very much a factor. Absolutely shattered, constantly absolutely shattered. A big lesson, had to change my lifestyle completely for a while, and take down-time, afternoon naps, watching television became a big part of my life, silly things like Diagnosis Murder, I mean I can’t watch it now on the telly, Dick van Dyke, because it just reminds [me] of where I was. And I laugh about it, I’d quickly change channels because I used to just watch them because I just needed to be relaxed and calm because I’d get tired.

 

And then I’d have my walks. Bonus, plus side of me resting was that I’d have a walk in the fresh air, come back and have another rest. And I had to learn to deal with that fatigue, accept it for what it was. Because I did pride myself on being a fit young man, or fit middle-aged man, or whatever I was, I’m not sure, but I was still playing football, still playing squash and badminton and still very active, and so I had to really back out of all of that big style, yes. But the fatigue, the sickness, the diarrhoea, yeah.

Ian was struggling to eat during his treatment because he found the hospital food unappetising, but he picked himself up after two nurses gave him a telling off, warning that he could die.

A good example of that is that I was struggling to eat. I had very poor diet intake because I just couldn’t be bothered, the food was horrible, or I perceived it as horrible. And one evening two nurses came and sat either side of my bed and they gave me a telling off, a real telling off for not eating and that if I wasn’t careful then I’d die anyway. And not because of leukaemia, because I was wasn’t looking after myself. And I felt like a naughty schoolboy.

 

I picked myself up from that. It was a bit of a low and a high point, I picked myself up and I started to work on the eating, started to eat and I remember having the pots of, I can’t remember what they were called now, the high energy drinks, starting eating them and the steroid. And to me that chapter was just as important as everything else that went on. It was a really important moment, and two nurses, and I’ll never forget them and all the team, and it worked, just them sitting down that night, after their med. runs, and telling me, to my face basically, ‘Pick yourself up.’ And slowly but surely over those two months I did.

Ian's doctor found it difficult to broach the subject of infertility after having started him on life-saving treatment, but it was all right as Ian had already had a vasectomy.

Yes that was quite funny actually because it was, 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 it 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 went, “Phew, fine”.

 

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