Pat – Interview 48

Pat was interviewed jointly with her husband Glyn (interview 40) who has a type of chronic lymphocytic leukaemia that resists chemotherapy and hence has a poorer prognosis. Pat talks about supporting Glyn through his illness and its effects on her.

Pat’s husband Glyn was diagnosed with chronic lymphocytic leukaemia (CLL) two and a half years ago. When his leukaemia didn’t respond to chemotherapy they found out that he had a chromosomal abnormality that made his leukaemia resistant to chemotherapy and hence his life expectancy is much shorter than is usual with CLL. After several unsuccessful chemotherapy and immunotherapy treatments he is now doing well on an experimental drug called lenolidomide (Revlimid).

Pat feels that her husband’s illness has brought them closer together because they have done everything together since his diagnosis. Their social life has been somewhat curtailed because Glyn has been cautious about mixing with large numbers of people in public places so as to avoid contracting infections. They have also restricted themselves to UK-based holidays for the same reason and because travel insurance would be more expensive for Glyn than it was before his illness.

Pat and Glyn’s journey has been an emotional roller coaster because of the changes in prognosis. As Glyn’s condition has been steadily improving over the last year they are now feeling optimistic about the future and hope that they will be able to resume a more normal social life.

Pat found dealing with her husband Glyn’s leukaemia an emotional roller coaster and sometimes…

Age at interview 63

Gender Female

Perhaps I can ask Pat one last question, take advantage of the fact that you’re here and talking in the interview. What does it mean to you, Glyn’s illness? Hows it been for you as a, horrible word, ‘carer’?

Frightening because it was unknown, not knowing how he was going to get through the treatment, especially when he was in hospital, and coming home every night and having left him there and he wasn’t well. So, yes in terms, sometimes it’s been frightening, it’s been like a roller coaster, you have times when things aren’t going well when you’re really down quite low, and then other times when the bloods are looking better and there is some improvement, it goes up and your optimism goes up and then it comes down again. I think that’s the hardest thing especially as the two types of drugs he’s been on, have been either a clinical trial or a trial period. They can’t say, With this drug in x months or x years it’ll be cure, or, You can have this for life and that life is twenty years They can’t tell us that, so all the time it’s the unknown, which I think makes it like a roller coaster. But the caring is, he’s quite an independent sort of person and if he’s not well he takes to his bed. And he’s not one who would lie there and moan and whine andSo I’ve not had to be a carer in that respect, and thankfully he’s always been able to see to his own personal needs, because I know you can sometimes, if there really is then, you become more like a patient, more like a nurse really. I’ve not had that. it’s just the emotional side, which has been traumatic, to say the least.

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