And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz was’ I think it was’ either had only just been fully kind of released or it was still on large scale clinical trial. But up to then, I think, you know that, you, you, you kind of you were hearing all these horror stories about, about treatments failing, or treatments with horrendous side-effects. Not a very good success rate, even, even back, back, even in 2000. So you, know it is a complex, it is a difficult decision to make.

And I am very, very grateful to my, to, to my doctor, because he let, he allow, he allowed me the time to make that decision. Even though when I was diagnosed my, my tests were pretty low and’ and I have heard since of other instances where the doctor said well you must really start treatment now because But he, it was a full, a full, and I think it was eight or nine months before I started. And I was determined to, first of all to establish whether I… whether I definitely needed to start treatment now. Because I felt that you know the, the treatment itself has probably some bad side-effects in the long term. And so I, if that’s the case, I want to start as late as possible.

And the other thing that was going through my mind and which my doctor mentioned to me at the time. He said sometimes when you, when you have just been’ when you have just contracted HIV you can go through a short phase where the HIV count is, is, is very high, and you can recover from it and keep going for quite a while without actually needing treatment. So I also wanted to establish that’ that I wasn’t, that wasn’t the case. I also wanted to, to take time to understand the various treatments available, what they do, what good they do what bad they do. And talking about’ about life instinct and about death wish and about all these things yeah, it’s actually a very ambiguous position to be in because You, you read all the, all these horror stories about, about the treatments and you know a few years before then, monotherapies had been used and with disastrous effect. And anyway so, so you carry’ and it’s very difficult to kind of decide where your life instinct lies.

I looked at the role of, you know the thiamine derivative drugs, you know the, like the AZT, DDI. And I noted that most of them they, they are the ones causing you know, mitochondria DNA toxicity, and to some extent, lipodystrophy. That was my understanding. And of course one of my drugs was that one.

And in February this year there was, you know the Aids Conference in Boston, and there was one paper which presented to there where was a treatment whereby you can use two drugs minus the thiamine derivative. So when I went in for my appointment with my doctor I said, ‘Well look can’t we try this?’ So it was quite a, a very sort of dynamic discussion, yeah.

So he said, ‘OK we can try it. Because what we have seen from this paper they presented is that you can actually be on this one and actually thethe effect of long term in terms of lipodystrophy isn’t that bad. Although it cannot be completely be reversed. But I think it is the effect isn’t that bad for long term.

So that was sort of looking at, you know the length of time I’ll be on the treatment. I said, ‘Well that sounds fair. You know sensible to go for that. Then the, secondly I think the only downside to that combination, two combination, was that I think you ran the risk of having a high cholesterol level. But obviously I said, ‘Well I mean it’s something I can monitor by what I eat. So we somehow, between myself and my consultant we agreed.

And my CD4 count has been creeping up year by year and mymy doctor said last time, when I’d said this is the highest in my life. The time before last that is, and 380 I think, he said, ‘Well don’t, it might go down. He said, ‘I like to warn people because these are, things are variable. So when it was done the next time it was 410! And viral load undetectable, so I’m, I’m very cheered by all that. But I’mI do have some problems with treatment, there are side effects which are not in considerable, but I’m fearful of changing because I just don’t want to give upif I’m going to live another 20 or 30 years like a lot of my family, then I don’t want to have given up things that still work if I might need all the options in the future.

Yes. Well I mean there, theres been quite a few, you know, occasions when I’ve picked up the pieces of material, leaflets and booklets and stuff, you know, on HIV. And, and reading about the, you know, the new, new forms of medication. Because they keep coming up, don’t they? New, new different forms of medication. And you just read, I just read through it and think well no, just stick to what I’ve got [laughs]. You know, it, it was [pause] it was painful enough to find out that I’d got this illness to start with, let alone me trying in any way to deliberate on how I was going to deal with it from that day on. Luckily for me and, and from’ for’ Luckily for me and, and as a result of the support and assistance of other people, I’ve, I’ve been able to remain alive up to now. And hopefully for quite a number of years to come. You know but I don’t want to change anything. The way, the I don’t want to change anything as it is now. I don’t want to change it. I don’t want to change the medication or anything like that. I just want to leave it as it, as it is. You know? And if the worst comes to the worst so be it. You know, ‘che sara sara’ and all the rest. That’s what I believe in. Yes.

Went to the [name] clinic, oh back in, God knows how many years, seven years’ was it seven years ago? And I met an old friend there who was absolutely booming. And I said, ‘Well what happened? Last time I saw you, you could barely walk and you were gasping and you were booking funerals. He said, ‘Oh I’m taking the pills. They’re wonderful. And I thought well heavens above, this guy’s 10 years older than I am and if this is what they’re doing for him, then I’m going to have some.

I can remember him (the HIV consultant) saying we did another test and weve measured your T cell count, your T cell count is 400, that indicates that your immune system is on the brink. Now I clung to the fact that it took ten years for’ ten years for you to progress from initial infection to AIDS and death. But here was I finding my immune system was already half gone and I was like oh my God, I didn’t have a clue what a T cell count was. And then he said you’ll probably have to start AZT immediately and then it was explained you know’ then I was like out of his office and there was obviously the counsellor who was actually completely different you know, he was much more sympathetic and human. He took some time to explain things and make an appointment, a follow-up appointment for me. And you know I mentioned the AZT and he just said don’t worry about that you know’

But I think the most helpful I’ve found is just the talking to me. I think it did a lot of good. I thought both teams, my, my tropical doctors ones and my TTP (Thrombotic thrombocytopenic purpura) ones, they were very good at communication. They were really, really good. Like they disseminated results of bloods in time. I don’t think I had any problems. And they kept me up to date as to what was going on.

Why is that important?

Well, because I suppose that helps your planning and focusing as well. And looking forward to the next day. Like one example I’d give you is like when they told me they had found HIV, that I was HIV positive. And the next thing they told me was, ‘Were going to start you on retrovirals. And the following day they started me on the retrovirals. Which I thought, this is quick. They only diagnosed me yesterday, and today they’re, they’re starting me these tablets. I thought that was quick. It was done very quickly. And theyI thought that was good. Because, as they say, that they need to treat the HIVstart treating the, the HIV so that they can treat the TTP as well, you know.

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.

In-grown toenailsThe nails, instead of growing outwards, they can grow back in and it’s very, very painful. And it won’t stop doing that unless you stop taking the medication. So I had to go for surgery for my toes, that’s a reallythey had to pull it out and cut off a big chunk of it, it was quiteit was very problematic. So I had to complain to the doctor. I would say my doctor was slightly difficult, I know she was just aiming at a very good CD4 count but I was really suffering… every time I went, I complained about the headaches, the rash, my skin really got bad. She explained again that it’sagain because my immune system’s going up, so that’s why I was getting the rash. I was tired, breathless as well. I used to get breathless, yeah. But when I really had the ingrown toenail I really couldn’t take it anymore, I said no that will have to change