Alex - Interview 38

Age at interview: 87

Age at diagnosis: 85

Brief Outline: Alex was diagnosed with chronic lymphocytic leukaemia after a blood test for an unrelated health problem. He has regular checks but has had no treatment. He doesn't worry about his leukaemia because he has other, worse health problems.

Background: Alex is a retired sales manager. He is married with two adult children. Ethnic background: White British.

More about me...

Alex has had a variety of health problems in recent years including a heart condition, a hip replacement, back surgery, gallstones and a hernia. A blood test he had in dealing with one of these problems showed that he was anaemic so he was put on iron tablets for that. About a year later he saw a specialist who told him he was on the edge of having leukaemia, which was quite a shock initially but he ceased to worry after being told that he wouldn’t need treatment.

 

Alex is not aware of having had any leukaemia symptoms and does not know what to look out for. He has had no treatment and doesn’t know whether he ever will. Alex has a check up with the specialist every six months where he is weighed, examined for any swollen glands and has blood taken. So far his leukaemia has not progressed. Because of his other health problems Alex’s leukaemia is relatively unimportant to him and therefore he hasn’t told many people that he has it. He has been feeling a bit run down in recent weeks and is recovering from a bout of flu that made him very ill for a couple of days.

At first Alex was shocked to be told he had CLL*, but when told it didn't need treatment he forgot about it and carried on as normal; he has other worse health problems.

At first the doctor thought I had …

 

Was it anaemia?

 

Anaemia, yes, and then I went on tablets. Didn’t get much better or worse and then I went to hospital. I had an interview with a specialist there and he said, “I think you’d just be on the edge of having leukaemia.” Quite a shock when he said it. And he says, “There’s nothing I can give you for it because you’re not bad enough.” So I went, “Oh, that’s all right.” “We shall keep an eye on you from now on.” So I went over to six monthly visits when they weighed me, took blood and then we had a chat and, “Oh, you’re no different. It’s just as it was right from the beginning”, which was quite heartening really because I had a cousin just died with it but I didn’t know anything about it because it wasn’t here. And now I just forget about it. Carry on as if it’s not there because sometimes I think with these things the least you know about it the better it is. And I don’t worry about when it gets worse the specialist who I still see, will say, “We’ll have to do something for you.” What I don’t know. But it doesn’t worry me. I’ve got plenty of other things to worry about medically. So I just carry on hoping it keeps like this. Ah, there’s nothing else I can say about it. It’s difficult.

Aged 87, Alex tries to keep active but has to pace himself nowadays. He blames this on his age rather than the chronic lymphocytic leukaemia.

So before you got your flu what would be a typical day for you? How much kind of activity would you do?

 

Alex' Yeah, a fair amount. We’ll either go shopping.

 

Doreen' Once a week we go shopping. Twice a week we go shopping.

 

Alex' And I take Doreen in the car and…

 

Doreen' He goes.

 

Alex' The trouble is Doreen doesn’t drive, and take Doreen shopping. Go round all the places with her, just pick some pieces up. And then if we didn’t’ do that I’ll go on this walk. It took me an hour at first then in the end about half an hour. And now I don’t do very much at all but I’ll be pushing myself just now to do some. I don’t believe in sitting about. I stiffen up very quick.

 

So you have to pace yourself a bit these days then.

 

Alex' Yes, I would say that, yeah.

 

So do you think the way you feel is entirely down to your age or could some of it be the leukaemia, do you think?

 

Alex' I don’t blame the leukaemia for anything. It’s just probably my age.

 

Right.

 

Alex' I won’t give in to that. It’s the last thing I want to do and I’m determined to get better.

Alex didn't tell his sisters or his son and daughter about his chronic lymphocytic leukaemia for 2-3 years; he told them it wasn't affecting him so they don't worry about him.

Alex' And to tell you I rang both my sisters over the weekend in north of Scotland and told them. I said, “I’m having a nice young lady come up to see me.” “Oh, that’ll be nice for you. What’s she coming for?” “Oh.” I said, “About the leukaemia.” “What leukaemia?”

 

Oh, right. So they didn’t know?

 

Alex' They didn’t, neither of them.

 

So how did they react?

 

Alex' Oh, one of them did a bit. She’s a half sister and she works in hospitals. She wouldn’t know a lot about it. And my other sister, she’s in her eighties and has very bad eyesight, and she didn’t… They both said, “How long have you had it?” “Oh”, I said, “About two or three years.” “You never told us.” “Oh”, I said, “It doesn’t affect me. I just forget about it.” “Oh, well that’s good.” So that’s how easy off I’ve been about it. I never bothered about it.

 

How did you tell your son and daughter about your leukaemia? Or indeed have you told them?

 

Doreen' I don’t think we have, have we?

 

Alex' I told my son. I told him a young lady is coming to see me.

 

Doreen' I don’t think he knows much about it either does he?

 

This is your son is it? You told your son…

 

Alex' Son, yeah.

 

…because I was coming to see you?

 

Alex' Yeah.

 

Okay.

 

Alex' Ah yes. I’ve told my daughter as well.

 

You have. How have they reacted to the news?

 

Alex' They didn’t.

 

Because you told them it wasn’t affecting you?

 

Alex' Yeah.

 

Yeah. So you don’t think anybody’s worried about you in that respect?

 

Alex' No no no.

 

Good.

 

Alex' They don’t worry much about me. Doreen does the worrying.

Alex has six-monthly check-ups with a consultant; he is unaware of having any symptoms and doesn't know what to look out for; he doesn't think about his CLL* as he has other, worse health problems.

So how often do you have to go up to the hospital to see somebody about your leukaemia?

 

Alex' Every six months.

 

And what do they do when you go there?

 

Alex' They weigh you, blood, and then we go and have a chat.

 

Doreen' To check him.

 

Alex' Oh, they’d feel around you.

 

Oh, they check you for glands.

 

Alex' Yes.

 

For swollen glands.

 

Alex' For glands, yeah. Some do and some don’t. The thing is I don’t see the consultant himself very often. She’s usually the one who’d help us out. Whatever.

 

So did they ever find any swollen glands or anything when they check you?

 

Alex' No, they’ve never found anything like that, or my own doctors.

 

Yeah. And do you follow the results of your blood tests yourself or do you just leave it to the doctors?

 

Alex' Leave it to the doctors.

 

So as far as you know it’s all just still the same?

 

Alex' Just the same, yeah.

 

So would you know what to look out for…

Alex' No.

 

…in terms of symptoms? So what do you expect to happen, if anything, with your leukaemia?

 

Alex' No idea.

 

And you don’t care.

 

Alex' I don’t want to know. Well, you can have it if you’re okay today and in six months something’s happened. A lot can happen in that time they told me.

 

Yeah. So you’ve had quite a lot of health problems in the last decade or so.

 

Oh aye.

 

Doreen' In the last six years, yes.

 

Alex' Yes.

 

So in the grand scheme of things, how important is the leukaemia to you?

 

Alex' Very unimportant at the moment.