Sometimes I think you get the information too soon. It’s because, certainly again in terms of my injury which is a very long term thing, and it takes you a while to realise just quite how grave it is.

You get given a whole bundle of notes and information and it’s as if it relates to somebody else, not you. You don’t really take it in. I sometimes think that maybe it could come a little bit later in the process or maybe it could be repeated later in the process.

I also think there isn’t nearly enough information given about the downside and the possibility of infection. I mean in all the literature I read on, I was given and I read on catheters, drainage, urine drainage, there is absolutely no, nobody’s telling me Yes but you’ll probably get infections all the time.

It’s not something that is, obviously the health service don’t want to talk about it. But it’s, I think people cop out a bit. I think there is an awful lot of turning a blind eye to it. Especially when you hear about the amount of resources that are devoted to treating knock on infection rates from bladders. So theres a lack of forthrightness I think on the part of the information put out about different kinds of catheters, success-rates.

I was very upset in London when the biopsy was done because the consultant said ‘I operate on you right away. Now I had read up things meanwhile and I was terrified of either incontinence or well lack of sex.

I saw this consultant who had done this biopsy, under whose direction it was done, in fact he had directed himself and he was insistent that he would operate on me and I was really upset. He said ‘I’ve done 400 of these and only 10% go wrong,’ [laughs] and I said ‘Yes but I, I don’t want to be 1 of the 10%.

My wife kept pestering me in a very nice way that I should think about it and my children, well they live in different countries apart from one in London, one in Scotland and the others are phoning me up every month and saying ‘How is it going dad?’ even 2 years later and it’s very sweet but I don’t really appreciate that very much.

Yes, I mean I think, when I went for the scans this time, when I was pregnant this time, the information that we got sent before the scan actually was very good at telling you that. It said, you know, ‘This is a serious, it’s a serious medical proce-‘ – you know, not in those kind of words, but it was a serious medical procedure, that it wasn’t there just for, there was a lot of things that could be found out and it wasn’t always good news.

And that was in the information that we were sent. And it was really good that that was included in the information. And it said things like, ‘If you have other children it may be a good idea to have somebody else looking after, don’t bring your children with you because it could be that you get bad news and do you want your children there?’

And I felt that that was very positive that they dealt with it like that. I thought it was really helpful, really helpful information, very clear and actually my experience of finding I was pregnant that time and, and the first time was poles apart in terms of the kind of level of support and information I got.

So you had a session with the midwife?

So I had a session with the midwife. Now that might been because I’d had the early scan, so I knew at eight weeks that the baby was OK at that stage, but I saw the midwife immediately after I’d had that first, very early scan and she was…

Was that their, that was their invitation?

No, I made an appointment to go to the, to our GP and I saw the midwife then, and she was brilliant and just spent absolutely ages with me, going through a whole pack of information about all of the different options that, all of the different tests that would happen, what the processes were, getting information about me and medical history.

It was much more what I thought my experience was going to be the first time. So it included information about where you could get the nuchal fold scan in that information.

At some point, I can’t recall exactly when, in this frantic time, it may have been after I had the second opinion, I then wrote to my surgeon and faxed him the letter with some more questions that I had. By then it was why he was proposing to take lymph nodes away when DCIS was all about non-invasive cancer. There might be invasive cancer but they would find that out after I’d had the surgery and wouldn’t it be better to just remove the tissue and only attack my lymph nodes if they discovered there was invasive cancer after I’d had my mastectomy. And so these were the kind of questions I had. So I faxed him this letter and I put on the top my email address. I didn’t actually say I’d like to do this by email, but I thought at least I’ll show I’ve got an email address, and he faxed me back the same day a reply, a good reply to my letter and actually said, "If you would like to communicate with me by email I’m very happy to do so", which was a thrill, an absolute thrill.

And from then on my relationship with my surgeon and all these problems about information went into a different gear. We weren’t over all the problems, but I had numerous exchanges with the surgeon, and he was so quick at responding. He would look at his emails between surgery operations as far as I could see. And he was extremely good, and bit by bit I got through some of my questions. But it was not without its trauma, because a week before the surgery I still had some important questions, which I never got to the bottom of, about the lymph nodes, and that was what – I was far more terrified about the surgery on my lymph nodes than I was about losing my breast. And that was because, although I didn’t want to lose my breast, it wasn’t going to interfere with the rest of my body. Taking away lymph nodes was actually going to interfere significantly with my immune system, and I’d read all these dreadful things about the possibility of lymphoedema, and what’s the point of doing this if it’s not actually essential?

Alright. As I say the menopause hasn’t been easy. I haven’t had what you call HRT but I know there’s lots of things out there you can take and in your body. I think I’m quite a stubborn person in that way. I’m not, as I say, I don’t drink, I don’t smoke, I don’t take anything into my body unless I really know a lot about it. When I did go to the doctor I didn’t find him very helpful, it was like, Well there’s HRT or you get on with it more or less So I just thought, At the moment I’ll get on with it
See I don’t know much about that because when I went to the doctor it was either, Take that or, that’s how I felt, or Get on with it so I took the option of getting on with it.

When you went to the doctor did he explain about what HRT was?

He gave me a leaflet which they all do, but I’m slightly dyslexic anyway, so of course somebody just shoving a leaflet on me.

It doesn’t work.

it’s not as if I can just read it, I have to have somebody to read it, or I’ll read it and think that didn’t make sense to me. So I’d have to have somebody else.

So do you know what it’s for? Do you know what it does?

Not really no.

And so it’s learning to trust my own instincts about who I am and how I’m gonna respond to things, that’s really important. And if a doctor tells me something and I disagree with it, trusting myself to disagree. And ideally if I do disagree to ask them about it, and to have a doctor that can say, Well this is why I think you should do this. And to treat me like an equal partner in, or an equal player in the endeavour of making my life better.

And that’s one thing that I sometimes haven’t gotten from doctors and usually when I do then I [laughs], I stop, or I don’t do any of the things that they’ve suggested, I might still see them but like, it’s just like, Okay well, if you aren’t gonna give me the info I’m not gonna put whatever this chemical is in my body, cos I don’t know what it’s going to do to me, and you haven’t proven to me that it’s going to actually make things any better. And I know that some medication can make things worse.

Yes, I think objective information, I would like to see there, really objective information, not coloured in any sense, really giving both advantages and disadvantages. Statistics, as much as information is possible, statistics, both sides of information, pros and cons, really pros and cons about the MMR. But really, really objective. That, that, that I really would like to see. That, that’s the only thing in my opinion that really helps parents. Anything else is unfair I think, because anything else is just scaremongering, one way or the other. Because at the end of the day, the day it’s both scaremongering. You know, people say, No, don’t do the MMR, you don’t need MMR, you don’t need any vaccination because vaccination is this and tha. It, it’s scaremongering. And there’s so much information out there that’s not true.

Certainly in my case, and I think it most likely would be true for many others, if it’s through an accident or something of that sort anyway, you go from knowing nothing whatsoever about catheters, to suddenly having one implanted. And the amount of information that you are given is grossly inadequate. I can only remember the most rudimentary things being passed onto me. And it was rather, You don’t need to worry about that, the nurses will do all that you need. And, unless you take a personal interest and ask a lot of questions, you don’t get told. You’re just done to rather than become a part and a controlling interest in what is being done to you.

I believe it’s something like 37 years since the Foley Catheter was invented. The first thing is I think that every patient should be shown before the catheter is inserted in them what actually happens. Because you’re told theres a balloon. You’re not told whether this is a balloon on the end of a sort of string that floats around inside your bladder like a party balloon or what. It’s not explained that it’s like a lifebelt, tightly round the catheter itself and how it’s inflated. All of these things, because it’s inside you and you don’t see it, I daresay most people haven’t seen a catheter with the balloon blown up. I think you ought to be shown so that you know how it stays in, why it stays in. How much of the tip of the catheter is there, if you pull on it, what you’re pulling against, and similarly that the tip of the catheter, if that’s rubbing against your bladder wall consistently, the irritation that that’s going to cause. All of that I think should be explained in the early stages, when you’re first fitted with it, or in a brochure that you’re discharged with.

These were more PSA tests, they in fact took about a month to come through and each day I was phoning the consultant’s secretary, first of all getting to the hospital switchboard "Could I speak to the consultant’s secretary," she might have been out and then each time she would have to shuffle through a set of papers to see whether my results were in. Each time it seemed to me like waiting for an order of execution of death and this went on day in day out and feeling this terrible feeling of apprehension, cold sweaty hands, ‘am I going to live, am I going to die’ kind of feeling.

If PSA is brought up in the course of a medical interview when people are really thinking about other things, they are not going to take it on board. I mean I don’t think at the end of the interview I could have gone out saying PSA stands for Prostate Specific Antigen. I didn’t think of it as a test for prostate cancer. I’m sure he said something at that time but I don’t think I gave informed consent if you like.

And there seems to be a sort of general assumption that for all men the objective will be to live as long as possible and I don’t happen to agree with that view point at all. It may be appropriate for many men, particularly family men, with growing grandchildren and so on, they want to see their grand-daughter getting married or their great grandson getting baptised, whatever. But for other people it will be the quality of life and the quality of life means being, or at least feeling, healthy that’s the more important thing. And I would have liked very much to discuss these kind of issues with a counsellor, possibly trained by the consultant himself or herself.

I wish I had never had the very first PSA test. But it was my own fault, I can’t blame the urologist in Washington, I could have asked for more information or thought about the consequences, it just did not occur to me, it did not seem to be a major thing at the time. It wasn’t presented as a major choice to me and I didn’t think through it.

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, ‘We’re 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.

Because I had a good experience with the doctors; I think that they levelled with me. They…..being told I was depressed, you know, clearly being told that was the case and all these other things that were going through my mind were a symptom and not a cause felt good to me. I think the doctors spent time with me I never felt rushed at all and we talked about me and my emotions and how I felt and I really valued that. I really valued feeling cared for and someone took an interest in me more than anything else. And I think I may not have taken the tablets if I’d come out of there thinking Oh it’s just another patient to be given drugs to shut up,’ or whatever.

The doctor who prescribed the treatment said think about it, you’re not under pressure but from where he was sitting he thought it would be a good idea, but he didn’t want me to do it unless I thought that it would help me. And yes I just felt looked after, I felt that they took an interest in me and I felt if it all went pear shaped they would be there to help me out.

You felt well supported.

And if it went well – fantastic. So I had a really good experience from the general practice I should say.

But I think a lot of men are getting more conscious now aren’t they, because with the internet and everything, it’s there for you to find, the information is there for you to find, so therefore you’re only an idiot now if you don’t want to look for it. Because that means you’re really walking around with blinkers all the time, you know what I mean. Because it’s there for you to find, you know so.

Well, that’s a good link to my next question, which is how have you found out more information? Have you used the Internet?

Yes, because it’s there, it’s on, it’s there 24 hours a day and provided you’ve got access to it then why not use it, you know what I mean? Because nobody’s perfect, nobody knows everything, right, and no disrespect to anybody but you know, not even the doctors know everything. And the best way to find out anything in life is through personal experience.

I think that’s how we did it, actually, because my niece was with me, we did get some answers because I’m trying to get into this heart thing, you know what I mean? Because I had the and it brought up the diagram of the heart on there and I said, ‘I’ve got that at home on one of them pamphlets,’ and I says, ‘Oh yes, there it is there,’ and then she was saying, ‘Well, what’s wrong with you?’ And I went, ‘See that one there, it’s blocked, it’s narrowed, and you see that there it’s pumping too fast, the valve,’ and she said, ‘Oh… and then she got an insight into it as well so, you know what I mean? It was nice, it got us a bit closer actually, but then she started to worry, ‘Oh, you’re not going to be here much longer are you?’ and I went, ‘No, don’t start!. But you know at least she could see for herself what I was going through, you know what I mean. So if I was walking up the stairs at my sister’s now and I felt a bit out of breath, they could understand. He says ‘Oh, it’s the old ticker, isn’t it?’ ‘Yes,’ and we started to make a joke about it and you know that’s the way you get light-hearted man, and you know you’ve got to be! You can’t take it too seriously, you know you’d be in a coffin already, man, I’m telling you!

Theres a series of pamphlets which were useful in the beginning. The Heart Association pamphlets they produce – I think there are over a dozen of them – little booklets. I have those upstairs and I read each and every one of them about twice, they have all sorts of diagrams and they talk about other things like diet. They explain various procedures and they talk about medicines but not in as detailed a way as I thought I wanted to be informed.

There are American websites which give you a lot of information and I’ve been able to get diagrams of the heart. For example I had to undergo anangiography and I got full explanations. The doctors here were very, very good- I got diagrams from them and they drew pictures and so on,but I got a lot of things from the Internet and articles about angiography and also abstracts and full accounts of medications.

So basically we were thrown back onto our own resources without any real medical support and by this time I had a frighteningly thick medical file and I could see the doctors sought of quailing as I approached.

I was sort of the classic heart sink patient unfortunately, and this went on for a number of years but the only good thing that happened was I began to try to find out for myself what had gone so horribly wrong and why I was still in pain. Now this was well before the internet and it was quite difficult to get access to medical journals and the sort of information I wanted.

But I was very fortunate because a local self help group for people in chronic pain was set up locally by a nurse who had actually also damaged her back very badly lifting a corpse while she was on duty and she had not been able to get any help either and had ended up going to the [name of hospital] which at that stage, had I think, had the one and only chronic pain management programme in the country. It was sort of imported from America and she had found it so helpful that when she came home her home near me, she decided to set up a self help group to try and pass on the sort of strategies that she had been taught.

So I got involved with that and it was such a huge relief to find other people with chronic pain problems, we all had different stories and we all had different conditions, although the majority were back or neck related problems but other people with facial pain, or phantom limb pain or arthritis pain from MS, all those sort of things and we formed a very supportive group which I found enormously helpful because at last I could talk to people who understood where I was coming from.

And you’re obviously very active in the diabetes support. Can you talk in some detail about your experience of being part of a support group?

Yes, well, it started off, there again it was the practice nurse that said, Oh, what you ought to do, theres Diabetes UK, and you can subscribe to the Balance magazine and join Diabetes UK. Which I did. I got the magazines and found it quite interesting. And in the magazine it said about local support groups. And I thought, Well, interesting, I’ll go along and see what it’s all about. Went for a couple of years and very interesting. They asked me if I’d like to be on the committee. So I thought, Yes, that can’t do any harm. So ended up on the committee. Then the chairman retired and they said, Would you like to become vice-chairman? And I said, Well, yes, that’ll be all right. And looked at the chairman, who was then, who, the vice-chairman then became chairman. And unfortunately about six months later he died. So I ended up chairman. Which is not what I wanted at all, but I suppose I do enjoy it.

We organise six events a year, three south of Bristol, three north of Bristol, to try and encourage people to come along. It’s not like Alcoholics Anonymous, not that I’ve ever been to Alcoholics Anonymous, where you’ve got to stand up and say, I’m a diabetic. But most people there are diabetics or carers of dia-, people with diabetes or people who work in care homes and doctors and nurses. They all come along because we get quite prominent people to do talks. And then it’s question and answer. So it’s very low key, very friendly. It’s free. And we just encourage people to come along.

But what, if, if you imagine somebody asking you the question, What, what would somebody get from a support group?

Sharing experiences, realising that you’re not on your own. Either the chance to talk to a consultant, a professor of diabetes, which you wouldn’t normally do, but more importantly, to talk with other people on, either on just a one-to-one basis or in a little group. And I’m sure the problems that those, you know, one person has got, everybody’s got, you know. So it’s just a feeling that you’re not on your own. You don’t have to go. You can go to some meetings, you can go to other meetings. It’s just to, to help with support and awareness, and to meet other people with diabetes that have got all the problems you’ve got. So you, you think, you know, I’m not alone here.

There were quite a few stories in the media about HRT and over time about it not being so good, about there being some health risks

Yeah.

Were you aware of those stories?

Oh yeah, I read them all. Yeah.

And how did that make you feel about being on it?

Well, I wasn’t very happy about it. If I’d known there were alternative treatments for the bone density I probably would have preferred to switch to that. Because you have to really weigh risks up carefully I think. I certainly don’t base my judgement on what I read in the newspapers because there is some incredible rubbish written in newspapers. If I read a story in the paper I usually check it out against other things on the internet. I talk to people about it, I talk to, well I mean I would talk to the GP about it and the practice nurse. I also talk to friends who are in the medical profession and see what they think about it. So I wouldn’t just base a decision on something I’d read in the paper because I think most of the stories are there to sell papers really.

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.

But the other thing I did was go on the internet, but I was searching in terms of topic, I didn’t know any websites to go to, so I just searched by topic then in terms of, you know, diabetes and social diabetes, and sex with diabetes, and food, and looked through those and read those, and, and really while I might not have a specific book or a specific website to, to recommend, what I do recommend is just soak yourself with information, information, information. Because it helps you (a) in terms of making decisions about how you’re going to conduct your life and (b) in terms of understanding the condition that you have, because if you don’t understand it it’ll be extremely difficult to, to get around it, life and it’d be extremely difficult to manage it, and, to comply with what the doctor tells you, because you might think the doctor’s just, you know, giving you grief, but in effect he’s just, you know, giving you the correct information.

But of course having said all of that it, it’s up to you, really how you respond and how you deal with it. If you take it as a challenge and a positive tone yes but if, you can see it as a burden and you say, Well I’m gonna adjust my life to accommodate the diabetes and hope for the worst and, you know, I’ve given myself five years to live and so forth Then you will have five years to live [laughs].

They went to great lengths, as I said between, between the doctor the dietician and, and the diabetes nurse, between the three of them they really gave me a thorough [laughs] update on what was going on. So I’d a lot of information then and of course, you know, whatever questions you come up with at the time, they’re just a phone call away so I always used to phone them, Oh what about this? And I’ve just thought of that So, they gave me a lot of information from the onset, it was really more of me absorbing what they were telling me. They also gave me a lot of literature, in terms of reading material, so, you know, you read for yourself the pamphlet – there’s a standard pack that they give you – and you read through that and it is really very handy because it gives you all the information you want to know. And if you’re not too sure you can always ask them.

But they gave me so much information that, you know, I was able to cope, from the beginning but it just depends. I think also how they presented it to me, helped me in that, you know, they said to me, Look this is what you have and this is what can happen. You, you won’t, you don’t necessarily have to think you’re going to die from it, you can live with it, you can manage it, but, you have to do a, b, c, d so, you know telling me that it’s something I have but I can live with it and I can cope with it, straightaway gave me the hope to say, Well okay so it’s not as bad as it seems to be

I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, And what can I do for you And I’m saying, Oh I’ve got Parkinson’s Yes but why are you here And I thought, you know, is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.

When ropinirole, which is one of the treatments that I’m on, when ropinirole first became available for, for me to take, I went up and I asked, I said that, you know, I would like to be put on to this because it’s a better form of treatment for me at the moment because it, it was better for you when you’ve had first been treated for Parkinson’s And my GP just kind of looked blankly at me. He just didn’t have a clue, knew nothing at all about the treatment or anything. didn’t even understand really what, what it was all about, and we had to come home and run it all off from the internet and run off sheets and sheets about it. Take it up to them and eventually after about three or four weeks I got put on to the ropinirole and it’s been great ever since, you know, it’s a really good treatment, well I feel it is. I don’t suppose, I suppose like any other treatment it’ll depend on the person theirselves you know? But it’s been very good for me, it’s helped me a lot.

And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz wasI think it waseither 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 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 andand I have heard since of other instances where the doctor said well you must really start treatment now becauseBut 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 beenwhen 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 thatthat 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 aboutabout life instinct and about death wish and about all these things yeah, it’s actually a very ambiguous position to be in becauseYou, 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 carryand it’s very difficult to kind of decide.

And have you always felt that you’ve been involved in the decisions about your treatment?

Yes because it’s usually me that does most of the talking.

Okay.

They come up with the prescription or the solution whatever but it’s me that’s telling them what the problem is and what I think I need etc. and then as I said we might discuss about going on to a higher dose so it’s often down to me. She might say Oh I think you should double it,’ and I’ll be saying Maybe not…but if that’s what you thinks’ best I’ll do what you thinks’ best. Or I might say to her as happened in the last one, I’m feeling a lot worse than I had done because of the extra pressure, could we discuss increasing the dose?’ and then shell say yes’, so. I do think I’m very involved in it.