I think I'm very lucky, in that I don't dwell on it [tearful]. But it does occur to me, and it does scare me. And I think, you know, sometimes when you, you see - certainly meeting doctors for the first time and explaining my history and telling them that I've had it for three years, and their response is, “Well, well, that's good, isn't it?” And I kind of think, “Well, it was for the first two, and now it's getting harder,” [tearful]. I still, I still have a good quality of life - very good. But I do worry that as that diminishes the progression will still be slow. And that worries me.
Have you actually put anything in writing about your wishes, or [shakes head] - no?
No. I think I've - it's only really started to occur to me just really in the last three or four months - and not in an overwhelming way, you know, just every now and again, and it won't upset me. Every now and again I just sort of think, “Hmm.” Or, you know, little things like, “Ah, so I am going to have to think about winter. Hmm. I was only banking on having a summer to summer, and you know, hmm, winter's going to be hard. Hmm. I would rather really opt out of that.” So not all of it is heavy thoughts, but it is starting to occur to me more, and it's something that I'm going to have to face. And I think it's just something that I've been working through, as I've been thinking about, “Oh, right, Rilutek. Right, will I start taking that? And actually, hmm, no. Why, you know, why, why would I, maybe?” And it's not that I'm, I'm suicidal or wishing my life will end, because every day generally I have a lovely time. And, and I think, “Phew, I wouldn't have wanted to miss that.” But it's worry for the future. I think if I really push myself on it, yes, I am, and worried for what my husband's going to go through as well [tearful].
I, do you have views about what you'd want to do?
No, that's too far away, far too deep. No, I haven't really got that far at all. I haven't looked at what my options might be. I'm quite a shallow person, so I'm quite able to keep myself in the moment, [laughs] and as long as it's sunny I'm happy. So, yeah, I think about the nice treat that I've got next round the corner, yeah.
Yeah, I'm, I was brought up Church of England and, and was in the church choir. And that was a very strong - my parents have both got very strong faiths. But I don't, that doesn't really do it for me. It's really more a, yeah, I'm much more neutral, I think. But I, I do think that it, it sort of, having the illness and doing the course [a 'mind-body- spirit' training course] has made me think about life and what life means. And what, I kind of get things in perspective and that, although I've got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it's emotionally and something, or something that doesn't have a label on it, or whether people are, you know, do have an illness. You know, everybody's got something. And, and that in turn allows you to see what is rich about life. So if, if you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either. And that helps me, yeah.
As a bigger picture, that helps me. And the smaller things, when I can't reach things or I just can't do things, that doesn't really help me [laughs]. That's just bloody frustrating. But there's a bigger picture, yeah, and that gives me calm. |
