Interview 32

Age at interview: 75

Age at diagnosis: 72

Brief Outline:

She was diagnosed with chronic lymphocytic leukaemia on a blood test after a hip replacement operation. She was on watch and wait for two and a half years then had chlorambucil chemotherapy and is watching and waiting again. She feels very tired.

Background:

She is a retired PA to social workers. She is married with one adult child. Ethnic background: White English.

More about me...

She had chronic lymphocytic leukaemia (CLL) diagnosed on a blood test following a hip replacement operation. She had no symptoms at that time. The diagnosis was confirmed by a bone marrow biopsy.

 

She started on a programme of ‘watch and wait’ in which she saw one of a team of three consultants every three months for a check up. During this time her white blood cell count was gradually rising and she felt increasingly tired. After two and a half years her white blood cell count reached 51 and one of the consultants gave her a two week course of chlorambucil chemotherapy tablets to take. Another consultant who she saw after the treatment said that in his opinion she hadn’t needed the chemotherapy yet and he wouldn’t have given it to her. She also felt that it hadn’t been necessary. She experienced no side effects from the treatment but it caused a liver problem which cleared up on its own. The chemotherapy reduced her white blood cell count temporarily but didn’t help her to feel any less tired. After the treatment she resumed her three-monthly check-ups and doesn’t know what will happen next.

 

She feels her leukaemia is dismissed as insignificant by the professionals who are looking after her as well as by friends and family. She says that she has been given no information about her condition, what the symptoms are and how it will affect her. She has to ask what her white blood cell count is; the information isn’t routinely volunteered. Nowadays she suffers from an overwhelming depressive tiredness that affects her from the neck up but her doctors have not explained to her whether this is part of the CLL or not. She tries not to let the tiredness interfere with her normal life and does what needs to be done despite feeling awful. She has other health problems too and cares for her husband who is also unwell.

She sees one of 3 consultants at her 3-monthly check-ups, the consultations are very short, the doctors don't ask her how she feels, take little interest in her and dismiss her symptoms.

Then I went back to this strange other consultant who wasn’t quite so clever and I went a fortnight ago and I had a ten past two appointment and I was seen at half past three. He had two people in front of me and he just does not bother. He takes people in and you hear them laughing in the consulting room and they come out with bits of paper and then fifteen minutes later you’re, or another patient is asked to go in. And I had another appointment and I knew I wouldn’t be very long with this particular man because he doesn’t seem to know what he was talking about. And he regarded me as completely insignificant. And I was in and out in one minute and a half. That’s it.

 

So how did you feel all that time that you weren’t having any treatment?

 

Invisible.

 

How did you feel about it?

 

Completely invisible.

 

Can you expand on that?

 

Well, nobody seemed to take any notice of me. The consultants weren’t interested. I asked them the symptoms and they didn’t give me any answers. I said, “I’m so so tired. This depressive tiredness is overwhelming feeling.” They just still didn’t say that it was connected. I don’t know if it is or it isn’t.

 

Okay. So but how often did you go and see somebody in that period?

 

Every three months.

 

And what were they doing at those check-ups?

 

Nothing. They just ask, they just, previous to the consultant’s visit I have a blood test the week before. They just look at my blood test, tell me the white blood count and make an appointment for the next three months.

 

Okay. So in the meantime, you’re back to going up there every three months are you?

 

Yeah.

 

So you’ve had two different consultants so far.

 

Three.

 

Three? One that you weren’t particularly enamoured with.

 

Ah, dreadful man.

 

Would you like to expand on that?

 

Well, he is long winded in as that he fumbles around with papers, he can’t find your notes, he just looks at you blankly, he doesn’t examine you, he doesn’t ask you any questions. The other two are much the same really but they do seem to be a bit, they seem to show interest whereas the other one doesn’t. But there’s no, I’m only ever in there two minutes at the very most at any time.

One of her 3 consultants started her on treatment that neither she nor another consultant thought was necessary at that time.

From that point I had regular three monthly check-ups with a lovely consultant, really, really nice man in the local hospital. Then I was transferred back to the local area here and was going for three months and the blood count went up and up and up and up. And it got to 51 and I saw a particular consultant who was rather tricky. And he put me on chemotherapy tablets with gout pills and anti-sickness pills and it was rather daunting, very, very daunting because I didn’t want to take them. I didn’t feel ready, that I was ready to take them or the situation was ready to take them, because they’ve always been extremely blasé, the consultants, with me' “Oh, there’s nothing wrong with you. You’re all right. I’ve got people with blood counts of 200”, which makes you feel great, you know, because you feel totally invisible, completely invisible.

 

And then the next time I went to see, after the chemotherapy, it was a two week course, I went to see this nice consultant again and he said, “You shouldn’t have been on that. I wouldn’t have put you on that. You’re not ready for that.” I said, “Well, why did they do it?” He said, “Well, you could have said.” I said, “Me against a consultant. I stand no chance. I have to believe that they are doing the right thing.” And since then I’ve just had three monthly visits and that’s it, no information whatsoever.