Jean - Interview 23

Age at interview: 71

Age at diagnosis: 70

Brief Outline:

Jean was diagnosed with chronic lymphocytic leukaemia after noticing swollen glands in her neck. After watching and waiting for a year she became tired and severely anaemic. She has since had regular blood transfusions and is taking chemotherapy tablets.

Background:

Jean is a retired tea lady. She is widowed with two adult children. Ethnic background: White English.

More about me...

After having swellings in her neck for a couple of months Jean went to her GP. After having a blood test Jean was referred to a haematologist and was surprised how quickly the appointment came through. At the hospital Jean was shocked to be told that she had chronic lymphocytic leukaemia and could expect to live about 7 to 10 years.

 

Jean was started on a watch and wait regimen of check-ups with the specialist every four months. For about a year everything was fine, then she started to feel tired and had pains in her chest and arms on exertion. At her next check up the specialist explained that she had become anaemic and that the pains were caused by angina and she was at risk of having a heart attack. She was kept in hospital for three days where she was given blood transfusions and started on chemotherapy tablets.

 

Jean took the tablets for about two months but continued to need weekly blood transfusions because she wasn’t making any of her own blood cells. A bone marrow sample was taken and she was swapped onto stronger chemotherapy tablets (fludarabine and cyclophosphamide for 3 consecutive days each month), and the frequency of blood transfusions reduced as she had started to produce her own blood cells again.

 

Jean has had two courses of the fludarabine and cyclophosphamide so far and the swelling in her lymph glands has reduced considerably. The chemotherapy makes her feel nauseous and her hair is thinning. She also sometimes feels too tired to do the things she wants to do and has to pace herself and take afternoon naps. She also sometimes feels depressed.

 

Jean is due to see her specialist again in about two week’s time and hopes that no more blood transfusions will be needed. She expects to have two more courses of chemotherapy and then need no further treatment for a while.

Jean was pleasantly surprised that having a bone marrow sample taken was painless; it caused no bruising and only a slight ache the next day.

Yes, and she came with me when I had the needle into my, bone marrow taken, that’s right, I forget sometimes, and she was holding my hand, so that was okay.

 

So they just gave you a local anaesthetic on the skin for that? No other sedation to make you relax and sleepy?

 

No.

 

But it was painless?

 

Yes, I was amazed. She had the instruments covered up and I wasn’t going to look, and you lay on your side and she said, “You’ll just feel a pushing and a pulling.” And that’s all you did. I was amazed, because first of all she took one bit out and then they took a little bit of bone out afterwards. And all there was on the skin was a pin prick and there was no bruise at all. Because I thought, “God, I hope it’s all right because I’ve got to have another one at the end of the treatment.” But yeah, it was fine.

 

So the pushing and the pulling wasn’t too bad at all?

 

No, and all you got next day was a just a slight ache. That was all. It was nothing bad. Nothing you couldn’t cope with. I was amazed. I thought I’d be scraped off the ceiling.

Jean would like to join a support group where she could chat to other people about leukaemia, but doesn't know of any in her area; she doesn't drive.

Have they suggested any support organisations to you or anything?

 

No, no.

 

Do you know of any?

 

Somebody did give me a leaflet for CLL, which I haven’t filled in yet.

 

For a support group?

 

Well, yes they will give you information, because I don’t know of anything round here that would be a group. You know, like these sort of ones where people can go to and chat. Nothing like that.

 

Would you like to be a member of one of those if there was one?

 

If there was one locally, yes, because I don’t drive or anything. So yes,

 

I wouldn’t mind. As I say, if there was a local group where you all discussed it like they do in Alcoholics Anonymous, I wouldn’t mind that. But no, I mean to say there isn’t anything local. You’d have to travel wherever. I don’t know.

Jean had a blood test done after showing her GP the swollen lymph glands in her neck. The GP telephoned her on the next working day with the results and referred her to hospital.

Yes, it was August 2006 and I’d had some swellings all round my neck and I’d had them for a couple of months, they didn’t hurt. And I thought nothing of it and I was going on holiday in the November and I thought, “Well, I’d better get them checked.” So I did. I went to the doctor and he made noises, “hmm hmm”, and I thought, “Well, that’s not good.” So he drew a blood test on the Friday, which he did, and the nurse said, “Oh, it’ll probably be about Thursday before you hear.” Well, Monday morning about 20 past 8 the doctor rang and said for me to go in and see him and he’s going to make an appointment to see a haematologist at my local hospital. And that appointment came for that in about two weeks.

After having chest pain Jean was given chlorambucil chemotherapy tablets alongside blood transfusions but they didn't work so she was given fludarabine and cyclophosphamide instead.

Of course, when I went for my check-up the doctor nearly went spare. She said, “You’re terribly anaemic”, because I have to have a blood test two days before I go, and she said, “That was angina pain.” She said, “You could have had a heart attack”, which frightened me and she said, “You can’t go home. You’ll have to come into hospital now and have some blood and be checked over.” So that was panic.

 

So I had to give my daughter-in-law a list of where everything was, and I was in there for about three days where they gave me three lots of blood and started me on some pills. And I was on those for about two months but I was having to have blood transfusions, first of all it was monthly, then it got down to weekly, because it just, I wasn’t making any red blood cells. So she said, oh, she’d have to change the tablets I was on to stronger ones, but before she could do that I needed to have bone marrow taken.

 

But these new ones have worked much better so I’ve been cut down from once a week to once a fortnight, and my next transfusion, if it’s necessary, is in three weeks time after I’ve seen the doctor. And because she said that now I’ve started to make my own blood cells again. So she hopes that I’ll only need four months treatment, so that would take me to September, then I’d have to have another bone marrow test to check it’s all right and then hopefully I’ll come off them for a while. And that’s it.