I think the effect of living with someone that has a condition like mine needs a lot of research. It’s the partner that suffers, it’s the partner who’s in 24/7 contact that has to cope with the mood swings, of which there are plenty. There is a very good actual course that one can do. It’s called The Expert Patients Plan, and that helps you to live with long term conditions regardless of what they were. I actually did that, and there were people with emphysema and people with arthritis who were in a great deal of pain, and as it was a group situation we all fed in how we felt, what our problems were, and how we could problem-solve. And our facilitators were absolutely marvellous, and we really gained a great deal of benefit. But really I think if people could work and help the partner and perhaps possibly the wider family as well, the effects on them, and how they can best assist the patient, that would be extremely useful.
Has being in the trial had particular implications for your partner?
I don’t actually think of it as a trial. I think of it as just another treatment. And he’s been through this third lot of chemotherapy, and each of the chemotherapies has had a different side effect. But he’s been extremely supportive and has taken over lots of domestic roles, like washing up and things like that, which really is fantastic. This time, actually, I haven’t been able to stand quite as much as normal. I’m supposed to sit with my feet up, and so therefore there are things that I had been doing heretofore but find it far more difficult to do now. So he’s, I’m afraid, had to be landed with that, as well as having his own heart condition. So it’s tough, but we, we rub along.
