Deirdre - Interview 33

Age at interview: 72

Age at diagnosis: 55

Brief Outline: Deirdre was diagnosed with chronic lymphocytic leukaemia eighteen years ago after developing swollen lymph glands in her neck. She was on watch and wait for three years and has had two courses of oral chemotherapy since. She is currently very well.

Background: Deirdre is a farmer's wife. She is married with three adult children. Ethnic background: White British.

More about me...

Deirdre developed lumps in her neck and as they didn’t worry her she did nothing about them for about 5 years. Then she pointed them out to a doctor at a well woman clinic. The doctor took a blood sample and a few days later telephoned to ask her to come to the surgery, which she did. The doctor told her that she had chronic lymphocytic leukaemia (CLL) and sent her to the hospital for a bone marrow biopsy to confirm this. As the leukaemia was not affecting her at the time, and there never seemed to be a good time to tell the family, Deirdre only told one friend about the diagnosis. But after about five months she plucked up courage to tell her husband and teenage children.

 

Some time before she had noticed the swollen lymph glands in her neck Deirdre had had swollen hands. The GP had suspected a viral infection because her white blood cell count had been high, and the swelling went away without treatment. After the leukaemia diagnosis her consultant told Deirdre that she had probably had her leukaemia for several years prior to diagnosis, going back to the time of her swollen hands, so Deirdre assumes that this was part of the problem but has not had this confirmed.

 

After diagnosis, Deirdre was put on watch and wait involving frequent consultations at the hospital. After about three years she began to feel very tired and lethargic but these feelings gradually disappeared. Another such dip occurred about a year later and thereafter dips occurred more frequently. During these episodes she did all the things she had to do but didn’t feel able to do any more than that, so some jobs remained undone.

 

About 5 years after diagnosis it was decided that Deirdre was ready for treatment. She was given chlorambucil chemotherapy tablets (one a day for several days each month for 4 months). This gave her no side effects and made her feel better for a while. Three years ago she had treatment again, this time 4 months of fludarabine and cyclophosphamide (3 days in each month for 4 months), which made her feel quite sick but put her into remission.

 

Although her white blood cell counts are increasing again Deirdre feels very well at present. Over the years she has been admitted to hospital 4 times with infections and once had a bout of food poisoning that left her gut very sensitive for a while afterwards. Deirdre regrets that there is no local support group she could join as she would like to support other people with CLL.

Deirdre confided in a friend but didn't tell her husband or family about her CLL* diagnosis until five months later because there had never seemed a good time to tell them.

I think the very worst thing at the time was how to tell the family. The children were I suppose eighteen, sixteen and fourteen or something like that and, being teenagers it’s a fairly shattering time for them too I think, teenagers. And so I thought, “Well, I won’t say anything yet because I haven’t got any symptoms or anything.” And the only person I did tell was a lovely lady who used to help me for a bit because, my mother-in-law used to live in this house, and she used to help her all the time, and she sort of stayed on and helped me. And she was the only person I told. And that was for about five months.

 

Well, over that time I suppose the emotional strain of keeping it to yourself and trying to find a time when it was best for them, to tell them, like being on a farm we had sort of hay, then harvest and there was always something going on at the time and I thought, “I can’t tell them now, I can’t tell them now.” And eventually I think it was before harvest and I thought, “Well.” I was thinking if anything happens to me what would they say? What would they think if I hadn’t told them? And I think especially my daughter, she would have been shattered that I hadn’t let her know. Anyway, I thought, “I’ve got to tell them.” So I plucked up courage one morning and told my husband. Well, I think, I don’t know whether it’s farmers or men in general but he wasn’t, he didn’t look as, sound as though he was particularly worried about it. It was, I’m not criticizing him but I think it’s probably just a shock for them isn’t it? And I don’t think at the time he, when he thought about it he could really handle it. So he sort of shut himself off from it and carried on as normal.

 

And the children were, they were old enough to understand of course but not old enough to sort of be of emotional support or to, I don’t really, you know, it’s just that I think they weren’t, I think they were concerned but, you know, you can’t expect them to really take it in at that age, put it that way.

Deirdre had occasional 'dips' during which she felt tired and lethargic.

So presumably your symptoms sort of came on gradually after that?

 

Yes, I’d say for about three years I think nothing happened really. And then, as I say, one winter I got this sort of dip down. I think I might have gone to the doctor then and said, “Look, I don’t feel very good.” But she said, “Well, just carry on and if it goes on too long come back”, or “Go to the hospital.” But it eventually it worked it’s way up and then after that I didn’t really bother because I seemed to come out of these dips on my own. At first I thought, “This is it. I’m going down and that’s it.” But gradually I learnt that it was just a down. I don’t know why it, I think different people have different symptoms. Not everybody does that, you know, but it’s this, I just seemed to get over it on my own. I didn’t have to have any treatment or anything, these dips they just came and went, went and came, I think, whatever.

 

And can you describe to me how you felt when you were in one of those dips?

 

Very tired and, I don’t know, just generally lackadaisical and not sort of really wanting to do anything. I don’t think I felt terribly ill, you know, you could still get up and go but you had to drag yourself about. It was just like sort of having flu or something like that, I think, without the cold. But just feeling generally sort of not well and not particularly ill but just unwell and just very, very tired I suppose. But you could get about and do things but you just didn’t want to.

Deirdre felt it had been better for her to deal with being told about her CLL* while she did not have symptoms rather than later when she was feeling ill.

So were you satisfied at the time with their explanations of why they weren’t going to treat you?

 

Yes, I thought they told, well, the doctor said it was a chronic one which is incurable, but she said, “Don’t be too upset.” She said, “They can give you drugs to prolong your life”. And I thought, “Well, it’s something I’ll just have to cope with.” But I’d have rather she’d said, you know, that you got something, we can cure this or something but being the chronic one of course they can’t. I don’t know. I think in a way I was quite pleased because they said they’d lay off treating me as long as they could, and I did think to myself, “Oh dear, is it going to get worse and worse? Why don’t they treat meet now?” But afterwards I thought, “Oh good, the longer I go without treatment the better it is.”

 

And the other thing was people say, when I was feeling well, “Were you sorry?” I think it was the doctor said to me, “Were you sorry we told you at the time?” You know, and they, I think they have to tell you, don’t they, if there’s something that’s happened. And I said, “Well, in retrospect, no, not now because it’s all settled down and I know, and had you told me now when I was beginning to feel ill I think it would have been worse. When I was feeling well, you could cope with it better than when you’re feeling, you’ve starting to feel ill. You probably would have thought the end was nigh”, sort of thing but as I was well and nothing happened for so long it was much better to have it, you having been told early on I think, yes.