Yes, I mean she was really from, from well, I mean I’ve already explained when, when she went into the hospice, it was almost two months that she spent in the hospice and really the level of care that she had at the hospice was very, very good indeed and I felt it was an appropriate kind of care that she was receiving. I felt it was totally appropriate that she was at the hospice and, and that she was allowed to be there for all that period.

Now, if you reflect back to that, do you feel that has, was a good decision for coming back here, you know, you still live here?

Yes.

And so the last time she was here she was not

That ill.

that unwell?

Exactly, yes. I think it was a really good decision that she, she suggested that she didn’t come home but she did say to me, Look, I’ve decided I really want to stay in the hospice. I don’t want to come home and the reason I want it is because I don’t want to take my condition, my sickness, home for you to have to feel it in the house She said, I think it’s much better for me to be here. Do you agree And I thought about it, really quite briefly, and said, Yes, I do agree. If you’re happy with that, I agree that it will help me to cope with being in that house And, and I’m sure it was the right decision and I was happy about it. I didn’t feel that I really wanted her to be at home with me. I wanted her to be with me, of course, but not feeling the way she did. I didn’t want her to feel sick and be with me.

I’d like to know if you felt you had enough information at each stage? Did you feel you were informed and in control of what was about to..?

Well, this again was a slightly odd situation because Chris has said to me as soon as she’d been diagnosed and had started the treatment, she’d said to me, I don’t really want to know very much about the details about my treatment And, again, because that was her choice I went along with that. So she was never given very specific details unless she asked for them except, and this was the one real sort of black period, when she was with the, she was under the consultant of the hospital, who was governing her treatment. That the chemotherapy, basically, the choice of chemotherapy, this was not the consultant to do with the surgery. This was the chemo.

We went for an interview with him and he, he said to her, I understand from the, the staff that you’ve already talked to, that you don’t want to have very many details about your treatment And she said, That’s right And he said, Well, unfortunately, I believe that I can’t give you the correct, my own chosen level of care unless I give you all the information that I have and I’m going to insist that I give you that information And she said, Well, I’m not happy about this He said, Well, look. I insist and I’m going to give you this information And he went ahead and told her what her condition was, exactly what the name of her condition, what her likely prognosis was, that the possible treatment and the likely prognosis. And I could see that she wasn’t very comfortable with this and I didn’t break in here because I didn’t feel that it was really my place to say anything but after that interview with the consultant she was really beside herself with, you know, she was in tears.

She was really, really unhappy and the nurse, the Macmillan nurse, gave us a great deal of sort of comfort then and said, you know, I understand that maybe he overstepped the mark by going against your wishes And I still believe that that he was wrong to do this but after this, again you know, I didn’t feel I needed to know the tiny details about her cancer and about what stage it had reached. She was only given enough information to know that that it had started to grow again and that it was affecting the operation of her body.

The care that she had from the, the replacement consultant on the oncology unit, not, not the consultant who’d originally gone against her wishes, but the, the new one was very, very good and Chris was always very complimentary about the way she was treated by that consultant and the way she was spoken to, the conversations they had, the information that she was given, the help she was given. She had very, very high respect for that.

She was then put in touch with the staff at the other hospital and again, she didn’t have an issue with the care but she felt that it was a little bit focussed on, We want to make you better come what may Or, We want to treat you the best way we know how regardless of how you may be reacting to it The, Regardless of the actual palliative care that maybe we should be beginning to address They were more concerned with the medical outcome rather than the actual care that she was experiencing and I was aware of that because I met with the consultant there as well with Chris and I got the feeling that it was, although she was very nice and, you know, we could understand each other on an intellectual level, I felt that it was just slightly focussed on something that that didn’t seem appropriate to Chris.

When you think about your relationship do you think it changed as her illness started to take hold? Did you feel the balance of your relationship change?

Yes, but in, not in a bad way. I mean I felt that we actually drew closer together because we began to really talk about some things that we’d maybe not bothered to talk about before because it didn’t seem to be important. But we began to talk much more about what we meant to each other and the things that we’d experienced that we’d really enjoyed together. So that was a positive thing.

That, in another way, our relationship changed in that I began to take a little bit more, what’s the word, responsibility for things that she tended to have taken responsibility for before, like she always she actually really enjoyed shopping and I hated shopping. We’re talking about, you know, day to day shopping, shopping for food and things, so because she was happy to do it and because I hated doing it, she always did the shopping. She always did the supermarket run. Well, of course, I now had to do it. And I was quite capable of doing it but I was a bit out of a practice so I had to kind of really focus on making lists and things of what to get. So yeah, that balance changed slightly, from the point, yeah.

If you reflect back on the whole journey, if you were talking to somebody who was at the start of that journey, what would you, what advice would you give them?

I would give them two bits of advice I think. First of all, discovering that your partner is terminally ill and does has a limited time, to try to make the most of the time that is left, not in the sense of rushing around trying to do everything possible, but just trying to focus on a handful of things that you’d really like to do, if possible, to just try and do those. don’t try and cram as much as possible, just do a few things.

And then the second thing is, and this wouldn’t apply to everybody, but to, to realise that the best thing is not to try and remain alive for as long as possible for its own sake but to retain the quality of life for as long as possible and to engage with palliative care on, on a proactive basis say, I want the palliative care to allow me, not to stay alive as long as possible, but to remain as well and as enjoying, enjoying of life as possible during that period

So from a partner, carer’s, supporter’s viewpoint is there anything you would advise a supporter to do to help that process?

Well, again, I suppose in my case, although I desperately wanted her to be with me for longer I was also aware that to help her, it was best to accept the facts that my time, that for the time that remained to us together to be as bearable as possible, it was also important for it to be shorter. And to just accept the fact that that she wasn’t suffering for any length of time more than necessary.