Shared decision making

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.

 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 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 so I was referred by my GP in London to a specialist, I suppose they are obstetrics and gynaecology people but she was actually a specialist in managing the menopause, and she put me on HRT; which was like a miracle. I mean it was completely rejuvenating. I was still having occasional periods, maybe once every three, two maybe two, three, four months, and it was something called, “Do you want me to mention the name of the drug?” it was called Premique Cycle and I went on to that and it was like being rejuvenated. All that weight I was putting on dropped off, I felt my libido came back, my whole ambition, all that kind of I want to make my work really work. I was running a medical research charity at that time called [name], and it was a very very busy job and a lot of pressure with lots of staff and very hard work. And I felt I was capable of doing it again. It was really marvellous. So my experience of HRT was unfailingly excellent.

 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 hours”. 

“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'?”

 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?”

 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.

 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?

 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.

 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 tablets”. I went back to the GP and she said, “Don’t worry Carole,” she said, “we’ll try you on another one”. 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 liver”. 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.

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 we'll 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'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. 

 And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz was… I think it was… either had only just been fully kind of released or it was still on large scale clinical trial. But up to then, I think, you know that, you 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, even in 2000. So you, know it is a complex, it is a difficult decision to make. 

 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'. 

 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 think for anyone who is newly diagnosed, I think the fact is that they need information. And it's not… if 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 they… some 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.

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

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.

 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. 

 I think that to others I would say “You direct the process you’re in”, “You tell your GP what you want”, “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 them”. 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. 

 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 treatment” 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. 

 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?"