And I know when I started to have the symptoms of the menopause I went to see my GP, when I could no longer manage it myself, and I took their advice and I think that goes back to my working class background in that I’ve been brought up to accept what other people tell me and to deal with it. But actually in hindsight, I shouldn’t have done that, I should have taken more responsibility for my own wellbeing and done that research earlier and asked for that second opinion earlier, asked for that expert advice earlier. But I think going back to my working class roots GPs were Gods and you didn’t think to ever challenge or question their advice to you. And we need to be doing that more because as I get older and I get more educated and I learn more, I realise they’re not Gods, they’re like everybody else they’re doing the best job that they can with the limited amount of information and limited amount of time that they’ve got.

They didn’t explain anything in those days. Nothing whatsoever, everything was hidden away as it might be. It was like having a doctor who said ‘Come in, sit down and what can I do for you?’ with a very straight face, and that was that, and then you went, and nothing was explained whatsoever. I’ve learnt more about things in my older days than because now they tell you all about different things.

I’ve picked up a leaflet once or twice from the Heart Foundation, when I’ve been at hospital and I’ve seen these little booklets about high blood pressure, but I still wouldn’t know what causes it. I do like to know things but I just I don’t know enough. I mean some of the books you get from the library they’re too technical. You can’t understand them so it spoils it really.

I don’t think I’ve ever come across anything to do with blood pressure which I’ve understood. I think I understand more of this doctor that comes on the radio. I can’t even remember his name but hes a great person, people will phone up about medical things and he will explain it completely down to earth, he doesn’t go into all the technical things which is nice.

Yes, I think that today, going back on when I was in hospital in ’47, that over the years there has been a closer, far closer co-operation between doctor and patient, and nurse and patient, than ever there was, but it’s got to be even better. And I feel that if the doctors, I know again they’re under pressure, they’ve got a big volume of work to do and they can’t spend too much time with a particular person, but if they could make that small amount of time they have count, by answering a question, allowing a question to be asked. Because in some cases, some patients who are rather timid will not ask. Now I would because that’s part of my makeup but those that are timid can be reassured on certain aspects or if they’ve got a weak heart, ‘what do you mean a weak heart?’ ‘How’s it affecting me personally?’ and ‘Should I do this?’ ‘Should I carry on living like this?’

We know that you have this aftercare and we know that you get this little booklets and things like that but it’s not the same as the doctor or the consultant at the point of being sent home, telling you the main operative things or answering a question. ‘Are there any questions you’d like to ask me?’, providing it’s not long, they may have to readjust the whole thinking but I think that won’t take place until we have more doctors, more nurses, more places, and people have got more time to do what they would like 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 (Karposi’s sarcomas), 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 he’s 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.

While I was under the care of the [hospital] I remember having some real issues with the difference between the way consultants and doctors treated patients in this country and the relationship that I had with them in the United States, which to me was much more human at the time. In the USA a patient was able to talk to her physician, ask questions, challenge and be part of the healing process, where in Britain, patients were expected to be good listeners and do what they were told. I found that very, very challenging.

I remember asking my first UK consultant why I should trust him with my life when I got to hospital, and [laughs] his reaction was anything but positive as far as I was concerned. He was trying to blind me with science, which he couldn’t because I understood all his big words, and I wondered why he felt I shouldn’t I be able to ask him what he knew. However, I got good medical care. I don’t want to fault the care, and after about fifteen years, they cut me loose. They said, Well you’re done. You’ve survived fifteen years. it’s not going to come back. You’ll be fine

They didn’t have lumpectomies so it wasn’t so popular at that time.

And I know I was recommended a book to read afterwards on breast cancer and it said if you’re told you’re going to have a mastectomy ask for a second opinion.

I found that amusing as I’d already had mine when I read this. But I didn’t think of asking for any other treatment or anything. I just took it that doctor would know, or the surgeon would know best, and I never sort of knew that there were different treatments. But I did find out, we had a talk from the breast surgeon and they sort of divided the breast up into sections and mine was right near the nipple. And apparently that area they prefer to do a mastectomy anyway rather than just a lumpectomy.

So I was quite relieved about that. I thought’ “Oh well, I did have the right treatment then,” you know. And I was grateful because really it’s a case of a gift of life more than anything. So I’d never ever think that a surgeon was giving me the wrong treatment.

I think it’s difficult for people nowadays if they’re asked which sort of treatment they like because it’s quite a responsibility. And often people, although the surgeon explains, I think it’s often people feel they’d rather just be told what the surgeon would like to do.

Apparently nowadays that is the choice, well it is in our breast clinics – that they can have a choice of just whether they want the whole breast off, whether they want a lumpectomy, or whether they’d like to leave it to the surgeon to think what he’d like best.

And I’m sure I would leave it to the surgeon for what he thought was best if I had choices like that.

I had tamoxifen for two years. Then I was told the newest thing is that now you go from tamoxifen to Arimidex. Which I did.

And then my oncologist, Professor [doctor’s name], is very well known. He came back from the San Antonio conference in America, which is the big one, and said, Oh I’m putting you on Aromasin now. So I went onto Aromasin. But I had side effects from all of those. I had the most ridiculous things, carpal tunnel syndrome, which people think is repetitive strain injury. And I stopped working. I couldn’t use a computer. And then discovered that was a side effect of one of the drugs I was on. And had injections and that cleared up.

Then I went to see, I had problems with my heart and I went to see a very eminent specialist Mr [doctor’s name], and he said, Oh you need a seven hour heart operation And I said, Is this due to my cancer drugs Oh no he said, but about six months later I had some research information from John Hopkins in America, and also from Dana Farber, two of the world’s top research places, and they both said anybody on those drugs, twenty five percent of us will have heart problems. And I’ve now picked up osteoporosis from the side effects. And I’m having problems at the moment with the drugs that deal with the osteoporosis.

I don’t mind, if I’d been told you’re going to get the side effects I would have fully have accepted it. But that was my choice. But at no time did any of the oncologists tell me, Oh well these are the possible side effects They just tried to brush them off.

Do you know which side effects came with which of the drugs at all or

Well I know that the blindness came with the tamoxifen, and I know the skin lesions came with tamoxifen. But now I can recognise the preliminary signs of skin lesions, where my skin gets incredibly dry and I start itching, as though I’ve got fleas. I know that’s more skin lesions happening and I had that with both Arimidex and Aromasin. But thank goodness for Roche Posay. I just slap on two or three times a day, the products, and that sort of calms my skin down.

Oh they argue. They do, they do. Some wanted to operate, some didn’t. Some said this was good. Some, one doctor come along and said I don’t want you to get out of bed at all, now you stay right there and you do not move for twenty four hour.

Another doctor comes along, What are you doing lying in bed, I want you walking up and down this ward I said, Well I don’t know how I’m going to lie in bed and walk up and down the ward at the same time, it cannot be done doctor.

It can’t be done. Doctor so and so told me to lay in bed, you’re telling me to get up And he marched off, so he probably went and had a row with the doctor that said this before, I don’t know what happened. So I compromised and stayed in bed for a while, then I got up for a while, it seemed to work.

I think it was just too much to really remember. I was just devastated, but numb I think. I just didn’t really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don’t think the full extent of it had hit us by then.

We sat waiting for the consultant and she came in. And she was absolutely great. And she came in and she said, Hi Mum, hi Dad to us. And she was a really nice woman – a bit eccentric but really nice – and she said, Look, this baby is not very well, the abnormalities we’ve found with the heart and the limbs and she said, At the moment it doesn’t look like. The problems the baby’s got are looking like they will be incompatible with lif. That’s the words that she used.

And again that was a shock because a hole in the heart is something what you think can be operated on, and short limbs, well, maybe they would grow or they, we did, it wasn’t something we were expecting, I don’t think, that she just said. So from pretty much the word go we were told that the problems the baby had at 20 weeks were incompatible with life.

Which really, from that moment on I felt I didn’t have a problem with making a decision. So that wasn’t part of the problem for us. It was, the decision in a way was taken away from us because we were told, Your baby will not liv. So we didn’t have that choice of saying, Well, we could have a disabled baby or we could have a baby with this problem or the baby would need x amount of operation.

Pretty much from the word go we were told that the baby was ‘incompatible with life’, and it would be a case of between the 20 weeks and the full term that the baby wouldn’t survive and really it just depended on the timing I think.

We had no problem with her having the other immunisations, the normal ones, but the MMR was quite an issue obviously, as it was for everybody. But even more so really because [our daughter] had had, she’d always had viruses and ear infections and then she started with bowel problems. And the decision was just a dreadful one to make for that. And then we decided eventually after much anguish, listened to what was on the television, what was being said, that we would take her to have measles only done, privately. So we went to a clinic in Liverpool, and by this time she was coming up to 2½ and we hadn’t had the first MMR done yet. So we took her to the clinic in Liverpool and when we got there they wouldn’t do the measles injection because she’d had antibiotics the previous week for something else. And we didn’t know that she couldn’t have the measles injection. Anyway they sent us packing, sent us home.

And we went to see our own doctor who, but, you know, he, who persuaded us and staked his career on the fact that this MMR wouldn’t harm our little girl. And he said he’d even give her the injection himself, just to prove how confident he was in it. And he hasn’t given an injection to a child for a long time. Anyway he gave her, gave it to her there and then before we could change our minds or have time to think about it. And we were just, in just such a state. I couldn’t tell you how worried we were.

And these health professionals, I’m trying not to say the names, they were sort of, they’ve got no reason to say otherwise. If they for one minute thought that there would be a problem with MMR it’s more than their careers are worth to push me to give it to my little girl. And in the end that’s where I thought, Wel because my doctor who is a family friend and, as well, I just knew he wouldn’t, he would not have staked his career on it. And, you know, I mean he just said, Come on, give her here, I’m going to do it no. And, and he did it. And it was, and it was talking to them really and realising that they wouldn’t say those things if they didn’t truly believe them, you know.

So you trusted your doctor?

Oh, yes, yes, I trust him with anything. And I hadn’t actually spoken to him himself, we went over another issue with her. And it was, I thought, Oh, I should have spoken to him long since reall because he was that last bit of reassurance that we needed, you know. And it was a good thing, it was, you know, the best thing we did.

What about treatment decisions, were you involved with your doctors in deciding what the treatments should be or was it just a case of them saying ‘This is what you need’

Entirely up to them. I had no input at all into that. I don’t know if I, I wouldn’t have had any knowledge to be able to say ‘yes’ or ‘no’ to something and I wouldn’t have had the courage to say ‘no’ to anything. Whatever he said to me I went along with, I trusted him implicitly. Still do. If he said to me now ‘You need some chemo’ I would discuss it with him and find out why, but I’d go with it, I would definitely go with it.

I don’t think I personally couldn’t have done it any differently, I would have to trust him a hundred percent to know what was best for me. I wouldn’t, and if I didn’t feel like that with him I wouldn’t be able to be a patient of his, I would have found that very difficult, but straight away it was good and it worked – fortunately.

Did you at any point, then, consider that there wasn’t, because you were very well, and had just had this terrific walking holiday, did you ever think, Why do I let myself in for this operation

Not at that stage. I just didn’t think there was an option. I knew that most pancreatic cancers present very late with painless jaundice and they can’t operate. I mean the, in fact the gastroenterologist said, You know, you’re one of the lucky 10 or 20 per cent because .. I don’t know that I felt lucky but Because it’s operable and it looks to be very small At that stage they were thinking it was about 0.8 centimetres. In fact it turned out to be 2 centimetres. But, and I mean they were saying, you know, it’s operable. It could be curable Although I didn’t quite believe that, and I’m not sure I do yet. And, you know, it’s got such a, and there was, there seemed to be no other option really.

And I didn’t want a second opinion, and I didn’t want to know more about the operation than I already knew. I really, I didn’t want to know more. I just wanted someone to look after me and make the decisions at that stage, and tell me what to do. I suppose I knew enough to know that it was not going to be nice, and I didn’t want to know more than that really.

The first time I went I saw a female GP and I think that was quite useful, she put it into perspective for me. I was very afraid that if I went onto HRT I’d be on it for the rest of my life or I’d be on it for 15, 20 years and it’s still to a certain extent an unknown quality and quantity. She said, You have to deal with the here and now, you have to deal with the 50 mile journey, the busy job, the two children going through their own problems, the husband with M.E she said, Look upon it as a safety plaster to get you through the next two to three year. She said, don’t think upon it that you’ve got to be on it the rest of your life, think upon it as a short term solution to get you through this period in your lif. And I think putting it into perspective like that I was more able then to consider it and give it a go and that’s what I did. And again, after five years, I just thought Right let’s come off it, let’s see if I can manag and I have and I am.

Did you have any concerns about the HRT, about going on it in terms of risk?

Yes I did because obviously it was big in the press at the time, the long term effects of it. I was quite concerned particularly six years ago, the year before I started going through the menopause, I had a lump on my breast removed which turned out to be benign. But having had that removed I was very conscious going onto HRT was I encouraging more lumps to come, would the next one be malignant. It was a big big decision for me to make and I was very anti the HRT for that reason. I think I was really concerned that I might get breast cancer from it. I think that was my biggest concern having had this lump removed. But I just got to the point well it was, I couldn’t have functioned without it and it was, well do I risk breast cancer or do I risk losing my job, my home, my family and everything else. So I felt at the end of the day I didn’t really have a choice to be perfectly honest.

He is – well he has been on everything but he’s been Strattera, Ritalin. Also they use the Epilim for the epilepsy, they also use some of that for the ADHD because it can control. And now he is on Imipramine which is three tablets taken at night time and basically what the Imipramine does is it helps him concentrate a little bit better but it mainly helps him to sleep and if he doesn’t take them he is awake because that was the other thing, that the first six, seven years, he would be up at three, up at four, up at two in the morning, you know completely wide awake. So you know it was affecting all our sleep patterns.

Then having another baby was like the baby waking up every hour and a half plus the child waking up as well, plus my husband having to wake up at 5.30 to go to work. So it was very, very intensive in that respect. We were all very tired. So I felt that although it doesn’t control his behaviour as much as probably I would like to, I think the fact that he is sleeping has got to be better, so that is why with the psychiatrist we are trying to stay on that at the moment, because I think if he has a good night’s sleep then you are able to cope with things better during the day, but I think during the day, he could do with having another one, but it is just the fact that it affects, it has other side effects. It could affect his heart beat, so that is other thing, is that you know you give them medication on one hand, and it helps with certain things but it could aggravate others and one of the things that the medication can aggravate as well is the epilepsy, so you are forever having to juggle this decisions and medication is a very complex subject as well.

A lot of parents don’t want to medicate but if you don’t medicate when they get to be teenagers all the problems are a lot worse. So it is a very fine line, it is a very, very difficult one, and one that we feel guilty about as well. Until my psychiatrist said, Would you feel guilty of giving insulin to a diabetic child This medication for the brain is for the chemical reaction in the brain so we mustn’t feel guilty. But you know you are always still borderline with that. So yes

When it was first suggested to me that I took opioids, I was not happy because one thinks of a) of addiction and b) of something much worse coming up later on. If you’re going to get something that really is painful, like terminal cancer, when you’re going to need all the pain relief that you can get, then is it wise to become dependent to some extent on strong pain relief now? What would there be left if it became essential, you know, for pain relief in a real terminal illness?

My GP talked to me and said If you need pain relief, you need pain relief and have the one that’s going to work for you and if it came to needing pain relief for something like terminal cancer, then it would not be denie. They would still find some way of making sure that you had adequate pain relief then. So, I sort of did an about turn I suppose from no I don’t want it, to yes I’ll give it a try.

So I’m trying it, an increased dose. I’m still not too sure whether it’s enough. Today it certainly isn’t enough to take the pain away, yesterday it was, see what tomorrow brings.

Anyway, on the Thursday, apparently I was discussed at the multidisciplinary team meeting. And I got a phone call to say, no, you don’t need radiotherapy after all. And that was devastating. I felt like I should be jumping up and down for joy, but instead I felt that I wasn’t getting the treatment I should be having. And that’s when I started getting really emotional.

You can’t, you know, well I was emotional and angry; I marched up and down this room. This doesn’t feel right, why, how can you be given three reasons as to why you need radiotherapy, cancer cells were too close to the chest wall, the cancer cells were all high grade, and they also found Paget’s, two lots of cancer as they described it. And now, I haven’t been given any reasons as to why I don’t. Apart from you don’t have radiotherapy for DCIS unless you’ve just had a wide lump excision. If you have a wide lump excision you’d have radiotherapy, but not if you’ve had a mastectomy, the idea is that it’s all gone.

And I really didn’t feel very confident at all. I phoned the Breast Cancer Care helpline, spoke to somebody there. She suggested really that I try to find out a little bit more information, that I ask to see the consultant, which I did do, and I got an appointment for the following week.

Following on from that I went into see the plastic surgeon. The plastic surgeon had obviously been told by the breast care nurse that I was worried cos I wasn’t having radiotherapy. He bounced in because he’s quite a character and said, I’m pleased you’re not, don’t need radiotherapy, it would have played havoc with my implant Oh like this. And I said, Well I’m glad somebody’s pleased And he said, Why, what is it about, what is it that worries you And I said, I just feel that I won’t know because the implant is there And he said, No, no, no he said, Your chest wall is now on the top, not underneath the implan he said. Because your chest wall, the muscle was lifted to put the implant underneath, it’s your chest wall that’s holding the implant So this bit here is chest wall, muscle, my chest muscle. So the breast is sat on top of this bit. So he said it’s now on the top. So he said if there was any hint of anything that was left behind, you would get a local reaction. And that’s when I felt more confident. I walked away and I said, Now I’m happier

He was someone, I, with [my son] being premature I saw a consultant, when he first came out of hospital, every two months, then every four months, then every six months. So a doctor that had worked with [my son] in hospital, so someone that knew me and knew [my son]. And I knew he had kids. And he didn’t think twice in saying, Get it done.

Did you ask him if he’d done that with his own children?

Yes, yes.

Did that make a difference?

It made a difference to me. I just talked to not lots of doctors, but I just thought, He’s a really smart guy you know. I mean he’s a consultant for premature babies, he’s so smart. I just don’t believe in my heart that doctors would give you that information if for one minute they thought it would cause a problem. And I do believe that. I mean he’s a very smart guy. And I think if he believed that maybe there are problems he would just say, It’s your choice. I can’t say. But he did actually really promote it and said, It’s really important that he gets it. I mean it was still ultimately my choice, but I felt like he, you know, he’s a smart guy, he works in the field, he works with babies all the time and I’m sure he sees the problems of not immunising children.

So I went back to him to talk about it, the GP, and I said, The only thing that puts me off, I don’t really want to be having periods if I get to 80 and I’m still on it and I don’t want to be having periods. That’s ridiculous So he said, Well, I could put you on another one where you don’t have the oestrogen And he said, Most I remember him saying something like, Most of the ladies that I’ve prescribed this find it much better and they don’t really have bleeding. Occasionally, you might get a bit of spotting So I said, Fine So he prescribed this so I started taking that and I suppose I was taking it, I don’t know how many years, perhaps two three years, which was, on top of the previous year’s I’d been taking the combination one.

I said, I am going through the menopause, I’m on HRT and I’m having a bit of trouble settling with the tablet. I went back to the GP and she said, don’t worry Carole she said, we’ll try you on another on. Excellent I thought, so I tried another one, that was okay for a while but then the nausea came back again. So, bless my lady doctor, she’s got such patience, I went back again and she said, Well let’s try patches, because they’d be absorbed through the skin rather than through the stomach and the live. So I went on Evorel 50, two patches a week on the thighs. Great. Fantastic. Relief. After about six months I started to get a reaction to the patches on my thighs. I would have square patches like that red raw, itching and I was using a different leg each time hoping that that red patch would heal before I got back to that side and I had at the end of about I suppose about another six or seven weeks I looked like a patchwork quilt. It did, it was red raw, it was stinging, it was itchy. I did a bit of research on the internet mainly with the help of Menopause Matters and one of the ladies on their suggested I might try a different patch but I went back to the doctors and she said, It does sound like you’re allergic to the adhesive, although I was a bit apprehensive about that. But anyway she tried me on a Fem 7 patch. I put one on and it was even worse, it looked like somebody had got a Hoover, put it on suck on my thigh and just bluk, and it was within about one day. So that had to come off. So then I tried the gel which was top half of your arms, once a day and that was alright for about two weeks and then it all flared up again. Doctor said to me, You’re probably allergic to oestrogen full stop

So I’m seeing my GP. So we spend four months stabilising me and getting me on to the tablets that I’m now on. We tried metformin and gliclazide and I was up and down like this, my blood sugar was all over the place, it just wasn’t stable. One minute I was 10 point something, the next I was 3 point something. And there was no relationship to the type of food I’d been eating, it was just, it was all over the place.

My blood pressure was being stubborn and not coming down. And my cholesterol had come down but not come down enough, so there was increasing the statins and they’re horrible when you first start taking those because they really, you take them last thing at night and you just spend all night with like indigestion when you first take them, and it’s pretty uncomfortable.

Eventually we moved me from metformin and gliclazide to a new tablet called Avandamet, which is metformin and Avandia. It is a very strong dose of metformin it’s a 1000 mg twice a day, combined with a low dose of Avandia – the 4 mg now this, I can’t remember the proper name, but I think it’s ‘rosiglitazide’ [rosiglitazone] or something. There’s a big fuss about this tablet because it apparently has an increased risk of heart problems, for people that take it.

I discussed this with my GP because he said, Look, are you concerned about taking this tablet I said, Well no, because taking this tablet has reduced the risk to me from all the other things that diabetes gives me. So overall, my risk of getting something is lower and if I don’t treat my diabetes I’ve got a higher risk of heart problems anyway

I don’t, I haven’t had since I’ve had the medication all my chest pains have stopped. So, no I’m my only concern is that they will take the tablet away from me not that, you know, they’ll say no we can’t, because I’ve looked at all the alternatives – I’ve done research on the internet – and the side effects of all the other alternatives are worse, in my view, than what the Avandia has, so I’m comfortable with that. I reassure my GP every time I see him that I’m happy with that.

And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, ‘You can’t come off it because we don’t have anything else to give you. And I said, ‘Well I’m not taking it any more because’ It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren’t really too bothered. They said, ‘If you’re not on it then you know you’re, you’re not going to be healthy enough. And, I didn’t care. I didn’t care if I couldn’t do anything, I just didn’t want to be sick any more.

So I went in and various different doctors came to talk to me ‘cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, ‘No, I’m not taking it. You can’t make me take it because I don’t care if I’m, if I’m under 16 I’m not going to take it. And I just said, ‘No. And they said, ‘Well well give you anti-sickness tablets. And I had tried those, they didn’t do anything. I said, ‘But they don’t work so I’m not taking it. So they eventually [laughs] sort of, they listened to me.

I’m very involved in how it’s managed and I make it my right to be involved as well. I think some people, I wouldn’t say they get walked over but they feel that they don’t have the right to say no because it’s difficult, I must admit when you’ve, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.

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.

I’m working in partnership with a team rather than being passive patient if you like and feeling, feeling that you can only have things done to you, rather than being part of the decision making process and full, fully informed, which we did very much feel when I went and had the liver section.

So it’s all a waiting game, you have to wait again for scan tomorrow and then the results and, you know, it could well be that you get recurrences, that have moved on anyway without knowing, but we’ve gone, jumped from sort of 3% survival at 5 years up to 40% survival at 5 years, and you know, it’s a it’s taught me that it’s not so much what is said today about your condition, there are things happening all the time, there are developments going on all the time and things change all the time and it’s keeping yourself abreast of those developments and making, making choices based on your information.

Information is power and I mean it can be that, you’re asking yourself to do those sort of things, find out those sort of things at your most vulnerable and most weakest time in your life and a time that you’re sort of absolutely strung out in fear and foreboding but it can help so much I think because you know it does give you a feeling of, of autonomy to some degree and it’s making those choices. I know that’s not possible for everybody and I think that’s what this sort of project is so valuable for, cause it is important to have [laughs].

It was difficult, but you dust yourself off, you go home, you read up your books, you read the Internet, you know. And it’s great because there is so much information out there. And you know, I think about if my parents had gone through something like this, you know, where would they get the information from?

I mean we’re talking about thirty plus years ago. Where would they get that information from? You know, they’d have to rely on the doctors. And we’re very lucky now that, you know, all of that information is literally at your finger tips, and we were able to read out – and I think you’re able to then make informed choices.

Because you know, Ignorance is blis people say, but I just, you know, I think if you know, about what, you know, what’s potentially happening to you, you’re better placed to be able to make the decisions that are going to, you know, maybe affect the rest of your life.

Were there any points where you felt you needed more information that you didn’t get at the right times?

I don’t think so. I mean we, because we were going up to London quite a lot we were able to read up about things and ask the relevant questions to the doctors. So they were able to give us a good opinion at those particular junctures when we were having those scans, because we had the information at our finger tips.

You know, I don’t think, I mean I think the doctors were, if you ask them straight questions they’ll give you straight answers, you know. There’s nothing to be gained for them, or for us, by them hiding information from you and being soft on you. And we knew from very early on what we were dealing with – as you say, from Down’s to chromosomal defects to heart disorder.

We knew, and we read up about everything so we were able to go in and ask those questions. And I think if you’re honest and straight with doctors they do, I mean our experience certainly shows that they were, they’re very responsive and they will give you straight answers.

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.

But the radiologist was extremely good. He outlined the options, he said ‘Surgery,’ he said ‘well your consultant doesn’t think that would be an option,’ he says ‘now with the radiology,’ he pointed out the side effects, loss of potency and saying well there were ways of still enjoying your sex life and all the rest of it you know and but the thing that really, what worried me was the prospect of sort of double incontinence. Now that really set me back a bit you know and also this may seem trivial but this treatment would have to be conducted in Y Town. Now I thought it was, I was so naïve I just thought it would be a one visit. Oh no it’s going to be half dozen visits. I thought how the devil am I going to get to that town and back you know, you can’t, the wife does drive but she only drives up to the village shop and back you know I thought get up early in a morning and sort of with frequency, I’m not worried about the driving but with frequency and problems it’s a very great worry. Anyway we discussed it at length with the doctor and he said ‘Well,’ he said ‘Or you can just wait,’ I said ‘Well if I just wait I’m getting older, would that option still be valid or available to me? ‘Oh yes,’ he said ‘yes,’ he said. ‘Look,’ he said ‘here’s my home telephone number,’ he said ‘any time,’ he says ‘You want me to take action,’ he said ‘ring me up.

That’s nice.

Oh I thought it was wonderful. I think he was conscious possibly that there had been such delays before because of clerical problems. So I thanked him, I thought well I can’t, I’ll wait because that was one of the options that they gave on the video.

Did they, did he give you the option of being collected in a hospital car if you did decide on the radiotherapy?

No that wasn’t given as an option.

So the transport was one of the reasons why you decided not to go for radiotherapy and the worry about the incontinence?

Well, yes

To what extent do you think the video helped you make a decision?

Yes it did, it did make a serious contribution. I think it was, had an American bias and so they’re much more advanced in their, or seemingly advanced in their treatments and their surveys, it gave, you were loaded with statistics and they were not really pertinent to the patients in the UK because the backup treatment and the facilities in the States possibly were sort of much better than here. But nevertheless the options that were available and so on did need clarifying being on a video you could switch off if you were feeling, well I’ve had enough of this, and you could go over it again, so yes that was quite, quite valuable.

And one of the options was watchful waiting?

Watchful waiting, yes, oh yes very much and I thought well, so that was the

Had the surgeon and the radiologist also mentioned the option of doing nothing, of watchful waiting?

Oh yes the radiologist certainly he said, he said ‘I just have not got a crystal ball,’ he said ‘I’ll look into it,’ he said ‘but I can’t really advise you,’ he said ‘if you go down that road of having the radiology treatment,’ he said ‘all I can point out,’ he said ‘These are the possible side-effects. He said ‘You may not experience any of them. And so I thought well there’s still this worry over double incontinence, traveling and so on, I thought well I’ll wait another 3 months.

I must admit when I read the results from the Internet, cryotherapy struck me as being useful rather like Brachytherapy but they’re using a very, very cold Argon gas that freezes the prostate to death.

I spoke about all the various possibilities with the consultant, and he said cryotherapy is not available in England. So I said ‘In that case let’s go for Brachytherapy,’ which I understood then was available in Leeds and in London. And he went off to refer me for Brachytherapy. Literally the next day I saw in the Telegraph that Mr X down in X Town was in fact going to start up with Cryotherapy and I went back to see the consultant, and said ‘Oi what about this?’ and he read the article, took a photocopy of it and promptly referred me.

And I put this to my GP and he said ‘Yes you’re absolutely right but at the present time we have to put certain treatments out to tender and cancers are covered for our particular practice by [Hospital] so if you like your treatment has already been paid for in advance and that’s somewhat different to having to come up with the cash to pay for your treatment now. But he said ‘Leave it with me,’ and a month later he came back and said ‘It’s fixed. So I was very lucky and I was treated under the National Health.

I went down to the operating theatre somewhere about 10, 11 in the morning I was given a general anaesthetic and the next thing that I remember I was in bed and it was 4 o clock in the afternoon and everything had gone well.

After the cryosurgery I was a bit battered and bruised down below. One of the things Mr X had to guard against is that whilst he was happy, willing and raring to freeze my prostate to death, once that had happened it would be absorbed into the body, there were certain parts that he didn’t want to freeze and so warm saline solution was pumped in and out of those parts to keep them warmed up. But I was pretty badly bruised and swelling and all the rest of it and he decided that he should give those working parts a bit of a rest and I had a secondary plumbing system inserted just about the navel, and I wore a bag for about a month. That was inconvenient.

This is for urine?

That’s for urine yes, that was for urine. It was inconvenient but certainly the month I had the bag all the bruising went and the stitches were removed and the bag was eventually removed and I’ve had no urinary problems since.

And what about sexually because that’s another thing a lot of men worry about, particularly with the other forms of treatment where you can have problems with erections and things like that?

Well yeah I have had a problem there but I was warned that that might be the case and might last for a year or so and yeah I still have a problem there. If I was 30 it might be a greater problem but I’m not.

I would say that at no time prior to or after my treatment have I ever had any pain or any reactions to the treatment whatsoever.

We have a very supportive surgery. The nurse there was very happy to talk to us. I think there is, I suspect the GPs feel that there isn’t any case to answer and that MMR is safe and for many children it probably is. But they were open-minded, they were happy to talk to us, and we have had absolutely no pressure at all from them to vaccinate any further. They understood our concerns, they understood our reasoning for the decisions we took, and have, if not, I wouldn’t go so far to say that they’ve been supportive, but have been understanding.

But many times we had done far more research. And at the end of the day a GP is a general practitioner, they can’t be expected to be experts in every field. But what frustrates me is when you get to see somebody who is sometimes an expert in a particular field and they are still very reluctant to acknowledge bowel damage, that lactose intolerance truly exists and that both children had had it from birth, which we are led to believe is very unusual.

So there was a, you know, we felt quite rebutted a number of times. But in many ways it, it worked well for us because it gave us a natural scepticism about I guess the medical profession. And so that’s what drove us to then do our own research and do the amount of research we did. Whereas, you know, maybe if people had just said, Oh, yes, you’re righ or, you need to do thi we wouldn’t have actually been driven. But because we were being, I guess people just didn’t know that much or, you know, if they did, they didn’t have the depth of information that we actually felt we had to do ourselves. It was up to us to make that choice for our children, it was up to us to do that research. So that’s the path we led.

I think for anyone who is newly diagnosed, I think the fact is that they need information. And it’s notif they feel that they’re being preached at by someone, get someone else’s advice. And if you’re not happy with the way your treatment is being given to you or your medication or medical advice is being given to you, go somewhere else. There’s always this attitude that if you’ve got a doctor or a GP and you’re not happy with what theysome people just feel they have to sit there and take it. If you’re not happy with your GP or your doctor at your hospital, move. There is nothing stopping you, there is nothing in this country to stop you moving your healthcare to anywhere else.

Before I left [city] when I was very poorly, my wife and my two children were called out, and I remember them being called out by one of the physicians to tell them how dreadfully ill I was. And then they came into me, it was, I think there were four surgeons there as the doctor who spoke to me painted a very bleak and black picture in fact which concerned [laughs] me somewhat even though I wasn’t, you know, fully compus mentus.

But they wanted there and then really for me to decide to have my hand and both my feet amputated. And I said no. I said I’d wait and see how I got on. And fortunately it was the right decision because within a couple of days I felt that much better and, as I say, [consultant’s name] took me under his wing, took me down to [city]. He’s a brilliant chap really. And he skin grafted my hand because the back of my hand was completely eaten away. And the first graft didn’t take. Then he did another which did take and is almost healed now. And he amputated one of my fingers. Took off one of my fingers off my left hand there and then.

And subsequently I stayed in hospital until February and then he let me out for about a couple of days, you know, which was very good really. It’s nice to go home. And then I went back in and they amputated my toes. And again they are healing up very well. It’s the pressure sores on my heels really that are causing, you know, the most problem at the moment but they’re improving. And then he finally. And then I came home again after that. Then he had me in just for one day for a local anaesthetic and he took the tips of two other fingers on my right hand. And he doesn’t want to see me now until the middle of September.

What about information. Where do you get your information about diabetes from? Because it is quite useful to have?

Internet. If you look probably in your local paper, you’ll be a diabetic meeting. It is worth going along, to one of them. Or whatever, going along to many. Because there are loads of people there with diabetes at different levels and it’s nice to have a chat to people who are at different levels, and how much it’s affected their lives and what they do to control it. And how they have sort of sorted out and that’s the best ways you will get it.

Doctors can’t tell you too much, because the doctors haven’t got too much experience of it, unless they are a diabetic themselves. You go to diabetic nurses, they are trained, but they are only trained to a certain level. They can’t, if you haven’t got experience in that sort of case or whatever it is, then you won’t get any sort of information on it. You’ve got to go and talk to a person who has got it. And you’ll find if you, if you do go to a diabetic meeting it will open your eyes a lot. How it’s affected people’s lives. And how they have controlled it and how they advise you on things you can do, and what you can’t do. And it, it is a good thing. The internet will give you a lot, but again I find, you’re better off talking to somebody rather than reading it.

You can buy all the books you like, but the books can’t give you experience. Only a person telling you can give you the experience. How they’ve done it, and how they’ve got around it. So it’s worth going to a diabetic. And they are all over the country. They’re all in local papers, what dates they are, and where they are. Just give them a call and go along. There’s loads of diabetic centres about.

I told the man in charge, you know the type of difficulties that I had and the kind of support that I needed, but it just seemed, he just wouldn’t listen you know. I felt as though it all fell on deaf ears, which was very distressing for me.

Anyway after a while this other lady started coming on her own but it didn’t work out. And I told this lady how, I wrote some things on, some information about how I needed her to relate to me but she got rather defensive and upset, you know, and I didn’t like that. And so I sort of told the man in charge and things like that and he said, Well actually she has got family troubles she is not coming back And then I thought of emailing the chap and said this is what I want to see in a support worker. I need somebody that is patient and kind and have a high level of understanding of Aspergers syndrome. He said, Well I know that you want this, but we can’t guarantee i which I thought was a bit strange and so I decided I just can’t cope with this. You know. So I rang my friend up and said, Look I am not happy with this. I don’t want the service any more. Could you ring up the man to explain that And she did and all the man said, was that I was asking too much, you know, you know asking for somebody who was patient, but I thought that was a bit ironic because that is what people like me need, you know, and I felt as though I had been treated very unprofessionally and because of that I just don’t think I could cope with having any outside support because I have lost my faith in them.

I think the best form of help is telling you theres help there, them telling me I can go to them, rather than them telling me, Oh we want you to do this now, or We want you to take this medication. You’re going to be in hospital at this time. Because now like I’ve got, before the care plan which has been made up for me, but now they include me in making like a care plan like they’ll say, What do you want to do if you feel depressed? Do you want us to take you to the hospital? Do you want to talk to your, is there a specific person you want to talk to, not just a professional? Do you want to talk to a stranger? Do you want to talk to someone you know? And sort of just including the person in the care that they’re receiving, is the best thing, rather than just telling them.

I then went to, , my doctor, made an appointment with the local, hip person, I had a steroid injection in the hip – what do you call it – cortisone injection in my hip, which did get rid of the pain for about three weeks, and then it came back, and it was, you know, just as bad. So we discussed surgery, I was shocked that I needed to do that at my age and I’d always been physically fit so, and I was at this point, maybe in my middle fifties, so I was shocked that, I needed this at such a young age.

And anyway my husband and I did a lot of research on hip replacements at this point, since it looked like I was going to have to do this, and of course you can even see… even an untrained person can see from the… from the x-ray what… what… that… that you can actually see, I mean it’s… it’s not a subtle thing, the hip is a great big ball and socket joint, and you can see when there is no cartilage in between and the bone is wearing away and so even I could see on the x-ray that it was not what it should look like.

So I did a lot of research and as I say, my husband is very into being autonomous and well informed and making decisions for you, even medical decisions for yourself, and so we looked at a lot of different types of hip replacements, and of course here in [city] the [Hospital name] has got some very good surgeons who do conventional hip replacements, you know, very well, I’m sure, but I was intro… I read a lot about the Birmingham hip replacement which uses titanium, and uses a very big, it’s much more… it’s called Birmingham Hip Resurfacing because it conserves much more bone than a conventional hip replacement, and it involves a large ball, , section, and both of these things are very good if you’re younger because if the conservation of bone means you can have a conventional hip replacement should you need, further, a… revision of the surgery, and that’s a problem. If you’ve had a conventional hip replacement once it’s very difficult to do a revision of that. And that’s why people often say, Oh, you’re too young to have a hip replacement, you just have to soldier on,’ even though you’re, you know, you’re really in pain, and you… you… Because if we do this now, you know, it’s not going to last you out. So this was one reason to go for the Birmingham resurfacing, and the second reason was that with the very big ball section, it doesn’t dislocate very frequently, and for both those reasons, because I’m younger and I thought I might need to… I thought I might outlive a conventional hip replacement, with a bit of luck there, I hope I outlive it, and because I wanted to… I wanted to play tennis still and walk my dog, and ride my bicycle, so that’s why I… I plumped for the Birmingham resurfacing.

I think that to others I would say You direct the process you’re i, You tell your GP what you wan, You ask those questions about services of your GP and even if they’re not there so that we do get them through our demand of the. So it’s good to ask for a woman doctor if you would prefer a woman doctor. Or it’s good to ask for half an hour with the nurse just to talk about it. So, sort of pushing the services forward through our demand I think is important. And get a good gynaecologist that you feel confident in and stay on his or her books through the process. Try and be able to go back to them even if things are going okay, you can still go back.

And then I think when I came to the booster one at 8 months that was fine, I just went ahead and did it. But I did start to worry after that when the 13 months sort of started to come up that the MMR thing, you know, this whole big debate. So I think basically I did a lot of reading, I spoke to a lot of people, spoke to about three or four different doctors, and I was very, very tempted to go for the single jabs, and I was prepared to pay the money because I was just too, you know, too concerned about the, the link with autism. But then, I don’t know what it was, it was almost as if there was something inside me that suddenly just decided to get, to get her done.

And I’d spoken to a very good private doctor who’d convinced me that actually there was nothing wrong and he would go ahead and do the triple jab. So I went ahead and I booked her in and I got the, the injection done. And then literally the next afternoon at nursery there was a mumps, or was it, no, there was a measles case. And, and I don’t know why I, but I just, you know, there was obviously something inside me that I had to do it that particular day, and then the next day this measles case came up. And, and she was, you know, she was fine, she hasn’t, she hasn’t got it. And so far she hasn’t shown any strange behaviour, things towards the, the MMR. So I think in the end I was quite happy that I made the decision because, you know, having measles obviously is ten times worse.

She [the oncologist] told me that it would be only a few months if I didn’t have any chemotherapy, I would only have a few months and, that the chemotherapy that she was offering was a gold, what she said, her words were Gold star treatmen and that it was very well worth having. Because I’d explained to others I didn’t want to have, just have chemotherapy and not have any quality of life, having just watched my friend die of cancer, so, you know, I was very, that had only happened 6 weeks ago, so 6 weeks before I’d seen the gy, I’d seen the oncologist.

So I did explain that to her but she said it was, you know, I would only have months if I didn’t have it and it was a very very good treatment and it, and there was even at my stage, stage 3, there was a very good chance that it would, you know, it could get rid of the cancer altogether and, you know, there’s, there’s a very good, you know, there’s a very good chance still. She had, she said she had actually discharged people that at my stage but she said everybody is different and, you know, but it is well worth having, having the chemo. It’s also a very kind chemo, the chemo, the carboplatin she said was very kind, you don’t lose your hair with it and, it’s, you know, it’s not one of those that makes you feel dreadfully ill, although it’s not pleasan. So I said, well I’d go away and think about it, and I went away and thought about it for a few days and then I went, I phoned up and said, I’ll have i, and I started virtually the next Monday.

The hysterectomy, I remember we were in this room with the surgeon and the oncology team and, because all this happened at the time when there was a lot of news reports and cases brought against gynaecologists, and he was saying about "well this is the chemotherapy you need and, you know, you might want to look at a hysterectomy," but it was the way it’s put "you might want to look at a hysterectomy." And then, you know, you dig a big deeper "Okay well what’s the best way of walking away from this? So if it’s going to be awful and sheer hell for a year as a family, how are we going to, how am I going to create the best chances of us walking away from it all?"

And, you know, it’s like "Well you don’t have to do it but, you know, to have the hysterectomy and to lose the next ovary would probably be the best thing, but the choice is yours." And there was a reluctance to turn round and say it purely because there was all this litigation in the news at the time. And so it’s like okay well I really think the only way round it is to have the hysterectom and as soon as I said "Yes we’ll have a hysterectomy," they all went phe, you know, because it was just so bizarre, you could see the relief, it’s like okay well that is the best decision.