And I said to the doctor at the time‚Ķ and the ward doctor was my HIV doctor at that point, because he was the head of HIV services and so he did the wards as well. I said, ‘What is the scenario here, what is the worst-case scenario here?’ And he says, ‘The worst case scenario is two months to live. And I thought okay, okay, what do I do here‚Ķ And I said okay now get me one of the counsellors, I need to speak to one of the grief counsellors, because when I was admitted, they do it as kind of a standard you know. You had‚Ķ if you needed to speak to you know a chaplain or a grief counsellor or any of those things‚Ķ any psychological support that you wanted and I have always said no. I’d been hospitalised before and I have said no, no, no I will deal with this with positive thinking. And I said no, get me a counsellor. And I think it was only the second time I’d ever cried over the situation. I cried when I got my AIDS diagnosis‚Ķ And I cried to that counsellor and I just have to accept the fact that at that point, it was quite likely that I would die.

It is quite a shift from hope of going out dancing just a few weeks ago…

Ugh hum. To moving into a new flat, and then bang and it being kind of‚Ķ Yes. I was angry as well obviously. I went back to the anger that I had got when I’d got my AIDS diagnoses. When I talked to the counsellor she asked me how angry I was. And I used some choice words. And it was‚Ķ Yes, it was, it was for me finally like okay this finally maybe the end. And I did that thing of actually getting in touch with people and saying come and visit me because I thought I don’t know, I don’t know whether this is going to be okay or not.

And then when I got the (Aids) diagnosis I thought okay I have spent these last three years learning how to live with something that is life threatening. And how to have a good life and I had, I had a fantastic, you know they had been the best three years of my life ironically.

And why was that.

Because I lived I was so present in my life.

What do you mean by present.

Well when I was at college, and I was drinking and clubbing and having fantastic fun, the focus of my attention was going out getting drunk and dancing all night. That was where my attention was’ Secondary to that was trying to get a bit of study done so that I could finish my degree. No concept about what I was going to do with that, or why I was really doing it, because it was just what was done. College was what you did after you finished school for me. Whereas once I’d stopped drinking, and I’d made a few decisions when I’ve stopped drinking that all of the money I used to spend on my cigarettes and on my drink would be put towards things that I wanted for myself, whether it was holidays, theatre, opera, cinema, galleries anything that inspired me and made me feel good and enriched my life. That was what all of that money was going to do for me now. And that is how I lived my life, on a daily basis that you know everything was for my advancement, everything was for my enrichment, that really you know’ if I was going to have a good quality of life for what ever time I had, it had to be done there and then. And you know I can recommend it as the best way to live, with responsibility, not thinking that this could be the last day I live, but to think of well if it was, how would I want today to be for me. I would want to be productive, I would want it to be enriching, I would want it to be happy. So what is the point in living through a crappy day that gives you nothing, that only gives nothing to anybody else. There is no point in that’ it is a waste.

On the other hand, it [facing death] was in some ways liberating again because actually well theres nothing I can do now. There was nothing. I had already taken the medication I had said okay now I’m going to do this because I think it is the right time and it did and I suddenly felt better but then this happened and it was worse. It’s like well actually I have no options here now, it is not like I have not taken the medication and I could say do you know, I know its late, this is really last minute to say this, but now I am taking the medication. Too late, you are already taking it.

To be fair they’d really been fantastic, they had always been there for me. I just hadn’t always recognised it that they were there for me. I always felt in my head that actually there what judgements about me being gay, there were judgements may be about me being HIV positive, which actually there weren’t, but my mind told me that there were. And that was my negativity not theirs and that was the difficulty. What they weren’t particularly good at was expressing themselves, and so because they didn’t express themselves, I always thought that they were thinking the worst, whereas they weren’t. They just weren’t very good at expressing themselves. Which is exactly the way I was of course. So you know parents who don’t express themselves very well, it is kind of natural that the son is not going to end up growing up being very good at it. And what happened of course as I started to develop the where with all to explain how I felt and talk about what was going on with me, and talk about those things with them, is that they have actually changed with me, and they’re very different now than they used to be. In terms of the things that they will talk about’ in terms of being physically affectionate.

For me the most important thing is peer support. That is why I am doing this now, because I believe that other peoples experiences are the key to finding out what you need to do for yourself. I’ve gone to therapy, I have done personal development seminars, but the thing that really help me most was being in different kinds of support groups where people who had been through the same experiences talked about their experiences. And talked about ways that they had found to get out through the other side and feel OK about themselves. So peer support was the main thing for me.

And so that was the tough one when he (the doctor) said, ‘You know it is KS. So I said, ‘This means then that I guess I have got a new diagnosis. And I couldn’t even bring myself to say the word. And I asked him to give me the diagnosis and he said, ‘Yes, you know you now officially have Aids. And that was the worst. The HIV diagnosis was a shock because I was not expecting it. But this was worse because I had spent the last three to four years fighting not to be in that position. And determined that HIV was not going to equal Aids. In my case. I was going to beat this, I was going to be a long-term survivor, I was going to be healthy, so getting that diagnosis for me was, was such a horrible feeling of failure. And I was really angry, and I felt like I was being punished. And you know I kind of had this whole thing with I use the word of God very loosely, because I don’t have any kind of religious background. But I developed a sense of some kind of a power for myself, that I felt I had something to trust, something that was bigger than me. And I have this kind of thought that you know that this was not right. I have done all of the right things, why the hell should I have to put up with this now. When I have looked at my diet, I’ve stopped drinking, I have stopped smoking. I am doing this, I am working on’ I have been a good person and now I have got this and it is just not fair. I was furious absolutely furious.

It sounds like a grief reaction?

Yeah and because you know’ there was’ I spoke about that kind of the borderline between denial and healthy scepticism and I you know, I was closer to the denial side than the healthy scepticism obviously.

(He was) an older doctor and was very much ‘Whow! No this medication will be good for you it is the only thing we have. And I said, ‘Yes, it is the only thing you have but it is not doing people any good. ‘Agh well it could prolong your life this much. I said ‘Well prolong at what cost? I don’t want what the people I have seen taking it have. I am OK at this point. And this was say in the early Nineties still before I became ill, and so I refused it and then the doctor changed. But at that point you had a new doctor every six months practically. Because I was at a teaching hospital and as most of the hospitals were with the HIV units attached’ they were teaching hospitals and so the doctors would be on rotation, they would do six months in paediatrics, six months within sexual health, six months here, six months there, sometimes maybe a year. But generally you did not see a doctor on a regular basis, so you couldn’t develop any kind of relationship really. But what happened was then as younger doctors came through they seemed to be a little bit more respectful of my choices. And really after a couple of years a particular clinic I went to started to ensure that the doctors that they had were there and that they stayed there. That those people who chose sexual health and HIV in particular, that there was their choice for their career.

And then when I got the (Aids) diagnosis I thought okay I have spent these last three years learning how to live with something that is life threatening. And how to have a good life and I had, I had a fantastic, you know they had been the best three years of my life ironically.

And why was that?

Because I lived I was so present in my life.

What do you mean by present?

Well when I was at college, and I was drinking and clubbing and having fantastic fun, the focus of my attention was going out getting drunk and dancing all night. That was where my attention was’ Secondary to that was trying to get a bit of study done so that I could finish my degree. No concept about what I was going to do with that, or why I was really doing it, because it was just what was done. College was what you did after you finished school for me. Whereas once I’d stopped drinking, and I’d made a few decisions when I’ve stopped drinking that all of the money I used to spend on my cigarettes and on my drink would be put towards things that I wanted for myself, whether it was holidays, theatre, opera, cinema, galleries anything that inspired me and made me feel good and enriched my life. That was what all of that money was going to do for me now. And that is how I lived my life, on a daily basis that you know everything was for my advancement, everything was for my enrichment, that really you know’ if I was going to have a good quality of life for what ever time I had, it had to be done there and then. And you know I can recommend it as the best way to live, with responsibility, not thinking that this could be the last day I live, but to think of well if it was, how would I want today to be for me. I would want to be productive, I would want it to be enriching, I would want it to be happy. So what is the point in living through a crappy day that gives you nothing, that only gives nothing to anybody. There is no point in that’ it is a waste.

My way of dealing with it was to try and inform myself. Once I got a diagnosis I spoke to my friends about it, and told my friends, the people I was living with who was supportive. I told another friend who was incredibly practical and said okay let’s go and find out what we can about this, let’s go and research and meet people and talk to people about this and’ which is exactly my way of dealing with things as well. And so that is what we did, we went to a drop-in centre, and chatted about everything and took away a whole load of information and leaflets and brochures and things. And then I kind of having I guess having informed myself to a level where I knew all of the fundamentals about it, I decided that I really didn’t want to think about HIV anymore. And there was nothing I could do, and so until there was something I could do I should just carry on with my life and get on with it and do what I needed to do.

And then my oncologist came in. Now the oncologists at that time, unlike HIV doctors, were still on rotation. And so I’d had this particular one for six months and he was very much an old school doctor where I prescribe – you take. He didn’t really work very well with me on the level that I had been used to. And he said well you know the one that you have had hasn’t worked and we are going to switch you now to this one other option. I cannot think what it was called, but it was something that had been used in the States. I think it had been used for ovarian cancer, it is highly aggressive and he said you know, he said we think that it may work for KS, there have been some trials in the States and it does seem to be working for KS. Now it is much more aggressive than the other ones you have, he said. So you know it will have quite a negative impact on your white blood cells, and you will lose your hair, and this, and he went through this list of side-effects’ these are the possible things that could happen. And hes standing there telling me this at my bedside and my clinic doctor is there standing next to him making notes.

And he finishes up and [name of HIV consultant] my doctor turns to him and says what, and you really think he is going to take that? And ugh [name] the oncologist says ‘Well. Yes’ He looks at me and I look back and look at him and I just laugh and [name of HIV consultant] laughs back, and I said, ‘No I won’t take that. He said that you have to because it’s your only choice. I said, ‘No, no, no it’s not the only choice. What I will take is the medication you were giving me before. But I will take it again at three weekly intervals, not four weekly. He said that doesn’t make any difference, he said, me moving it a week wouldn’t have made a difference. I said you moving it a week made the difference, I tell you. I know my body. I know how I felt after every three weeks when I had the chemotherapy, the soothing effect of that I felt.