And is there anything that looking back you feel worked particularly well for you?

My GP letting me take control of it or not control of itI mean he wasI mean I said to him in January, I want one last try to get these under control And he said, Okay, but you’ve said that before And I said, No, I really mean it this time. I will, and then if I don’t get it under control, I will start insulin. And you can put that on my card, that I will do that And he let me do that, you know, without, and he hasn’t sort of, he hasn’t pressured me into stuff that I didn’t want to do. It’s been negotiated. The increase of medication has been negotiated.

The, I mean I said to him about the atenolol, coming off the atenolol when my blood pressure went down. And he said, Oh, I don’t know. Oh, all right then, we’ll give it a try So he responds to my requests. And if my bloods continue to stay the same, I shall ask if I can take lower doses of the metformin. And I’m sure he’ll let me if he thinks that’s okay, as long as I monitor it.

So there’s a lot of, I think for me I’m glad there’s a lot of self-monitoring. And you have to take responsibility for it yourself because it is a lifelong condition – it’s a 24-hour condition. You can’t just take your medicines in the morning and expect to go through the whole day then just doing what you like.

But what I would ask an expert would be, ‘Why don’t you involve patients in your decision making at every stage? Why don’t you ask patients what they want and what they feel they need because the patient is the expert in their own disease?’ Because absolutely every patient is a complete individual and there are no two patients that match each other completely. And I think doctors could learn a huge amount by listening more to patients, mmm;

I find that, quite often problems arise because um theres poor continuity I’ve had this disease now for 22 plus years and in that time there has been an incredible turnover over all these health professionals, the only one who I remember from back then is, is my then registrar now Prof. of rheumatology so you know he, he was able to act recently upon information that hes accumulated from knowing me all those years, well what better way is there o; serving a patients than by knowing them over a long period of time? And now that has to be true of every health professional now if you see a different occupational therapist every time you go, it’s exhausting, exasperating;

I feel almost like being rude, it’s so exasperating to explain to, you know, a 19 year old who’s never met me before. But of course it’s not her fault. Shes just going through things I’ve seen a hundred times before and they’re not telling me anything new, not asking me anything new. Nurse; in hospitals have been sometimes wonderful, sometimes abominable and all stations in between.

I’ve got a very good GP now, I have got a GP who actually knows what fibromyalgia is, he’s prepared just to sit and listen, he listens a lot, he’ll let me try new medications, obviously because of my science background I probably know more about fibromyalgia than he does because I read so much in research papers, but he’s very willing to let me be a guinea pig and to work with me, which I think is important with a doctor/patient relationship, you’ve got to work on this path of chronic pain together.

But you’ve also got to be very honest with your doctor, you can’t just go out and start trying a new treatment without telling him, because then he can’t monitor what’s going on. My doctor likes to monitor what my drugs are doing, and if I want to start a new therapy I will go and tell him, I am going to start this now, and then we’ll discuss it and decide is this actually working, is it actually making any difference, so we can see if I’m wasting my money or not, but also I think you have to appreciate with your doctor what he can do and what he can’t do.

Like he cannot take your pain away, so there’s no point in keep going to him and say Oh I’m still in this pai, there’s nothing that he can specifically do, you have to accept his limits. Like he can refer you to a physiotherapist, he can refer you to occupational therapy, he can help you with…

So if I want a specific referral, I’ll go and say I need to see a physiotherapist at the moment and he’ll just do the referral or I think I need a bit more of this drug, can we just try it, rather than just experimenting on your own, which actually might be dangerous, because the interactions with the different drugs, he’s there to point me in the right direction so we work together and it works really well. But I don’t bother him all the time with things I know he can’t solve, because that is where the frustration gets in, yes it works well.

When you sometimes change the dose is that, do you always have a consultation to talk about that?

Yes I mean it’s, it’s kind of very much left up to me to make that decision now I always stick in the range between 10 and 30 and I will, I will always have a consultation, I mean sometimes it’s just over the phone because my GP knows me very well now and she sort of knows that because I’ve been taking it, I’ve been taking it since my first year so that’s just over two years now, that I’m quite aware of how these things affect me. She’s very happy for me to just, to let me take you know my sort of call with what I want to do.

Do you get a different prescription when you need a different dose or do you just take more tablets – how does that work?

It kind of depends because they only come in tens and twenties so if I take thirty I have to take two and then I take ten so, but normally because I get prescribed like them sort of intermittently on a different… normally I have enough to kind of be able to do it myself without having to be prescribed more. I mean so if they just cut the twenties but yes no so normally it’s not really a problem it’s normally just like, I’m more, I’m more will phone her just to kind of have them just because like I do want to it feel like it’s a joint decision not just like I’m just going off an doing what I want on my own. I’d always want to her say that she felt that was okay but then I’m almost always certain that she will so when I was young I had a lot of sort of anxiety about sort of saying what I wanted to do just because it had been ignored. But very much now I can say oh well this is what I’m thinking then.

When you feel like you need to increase it for example what is it that you’re feeling that makes you want, need to do that?

So mainly for me it’s around the exams would be the normal one it’s just for me probably my trigger thing is just being a bit tearful and like just could be anything just like ridiculous stuff. And it’s not even, sometimes it’s not even that I feel like sad I’m just like overly emotional and I notice it.

A drop in mood…

And then that for me that’s like oh okay that for mes not a good thing.

But where I have been lucky is like I said, my own cardiologist, my GP, the woman who runs the cardiac have just answered every question I’ve had. My own cardiologist has never said, well we don’t do this. Shes always like before shes adding another tablet, she explains why, why she feels the need for this and that and I think you feel a lot better in yourself.

You feel as though it’s being done as a partnership, rather than the impersonal approach of this, this and this, cheerio, well see you in a few months. I think that’s been so important that has, really.

I think, like I say, communication, even if it’s an admission of a lack of knowledge is so important because you really are in no man’s land, because suddenly something’s happened to you, that’s going to affect you for the rest of your life and you know nothing about it because you haven’t been expecting it.

It’s not something that was anticipated and I think whatever they do for people, always explain why they’re doing what they’re doing.

I don’t mean in a crisis slowing down and explaining, but in the general run of things always explain why they’re doing what they’re doing. And even if they say they don’t know the answer to that question, but I’ll go and find out. But theres nothing worse than having anything done to you or prescribed for you and nobody’s explained why.

Well, I suppose I started thinking about the menopause when I was in my forties because I read about it and HRT hit the headlines and at that stage, HRT was said to be wonderful and there didn’t seem to be any disadvantages. HRT was said to reduce osteoporosis, reduce cardiac troubles in those days. There was nothing negative about it so I think when I got to the age of about 50 and started to have just the odd hot flush my reaction was immediately to go on to HRT, partly because my mother had osteoporosis and other members of the family had had osteoporosis and I dreaded getting osteoporosis and I felt it was the right thing to do. I think I started, it’s quite a long time ago now so I think I started on some tablets and then I tried patches but the patches gave me some skin reactions so I went back to tablets. And there was no problem at all. I never had any side effects. I just felt great.

Then of course the headlines changed a little bit. There was more research on HRT, people started to talk about dangers of increased risk of breast cancer, dangers of increased risk of cardio-vascular problems. So I started looking at the literature and read articles in the BMJ [British Medical Journal] and the Lancet, the British Journal of General Practice, the newspapers, everything I could find. And it seemed to me that the dangers and the risks of HRT had been exaggerated in that people didn’t understand risk.

And for me, the advantages outweigh the disadvantages because I dread getting osteoporosis. The risk of osteoporosis is reduced, also I think the risk of bowel cancer is reduced when you’re taking HRT and the quality of life, for me, has been terrific on HRT so I’m carrying on still taking it.

What is your doctor’s attitude to you being on it for so long?

She’s terrific. She knows I look at the literature and have done the research and understand the risks and in fact I went to see her yesterday partly because I knew this interview was coming up. I thought I’d have a discussion about it since I’ve been on it for about 15 years now, and she agreed with me that the extra risk for breast cancer is actually quite small. And she said that you have a similar extra risk if you’re overweight. So we discussed the other reasons for having extra risk of having breast cancer and she was perfectly happy for me to go on with it.

Have a conversation with your patient, I understand that there are times where actually that’s not possible and where you need to be making the decision and certainly I’ve been in positions where all I’ve wanted them to do is say you knew what just to make a decision just give me something I don’t care what it is but as a general rule you need to be actually having a conversation having a two way conversation and saying this is what I think, what do you think’, because, especially if a patient has been on more than one medication before, they know what works for them they know what doesn’t work for them , they know what side effects they can tolerate and they know what they can’t tolerate. I just, you, I can’t stress it enough it’s just so important to talk to them instead of talking at them.

We did talk about the different chemotherapies but my husband and I had already come to a decision about that. The present, or at least the gold standard was a combination of Taxol and carboplatin. I’d found out that the Taxol causes the more severe side effects but the research that they had to hand then was that it produced slightly better results if you used the 2 in combination. Although I believe NICE have recently brought out a new report on that. But anyway, the present gold standard then was the combination of the two.

Now for some women hair loss is not acceptable and they go just for the carboplatin on its own, which is, you know, fair enough. But with Taxol it is almost a certainty that you’re going to lose all your hair. I’d read that a cold cap could help prevent the hair loss but I thought if my hair’s just going to start thinning and look awful, I’d really rather just lose it all and have the benefit of having the Taxol as well.

And I did feel uncomfortable about turning down the offer of going on a trial. And maybe it was very selfish because a lot of people have said to me ‘Well people have got to go on these trials because otherwise, you know, there’s no benefit to others. And I know that’s true but at the time I had to think about myself and my family, and one of the things my son had said at the time was ‘Whatever you do mum don’t lose your hair,’ and I just felt it, I don’t think it’s always taken on board that there are a lot of issues about how you’re perceived that might be affected by the treatment. And for me that was just one of the issues really.

So were you able to discuss with your consultants about which drugs to have so that you wouldn’t lose your hair?

With the carboplatin I didn’t lose my hair, but if I’d gone on the trial and I’d chosen, I’d been chosen to go on the particular arm with the combination, I would have lost my hair. But they just felt it was because of that reason, but I just felt that first of all I’d been diagnosed very early and I didn’t feel it was appropriate in my particular situation to, to be having both drugs. And also I felt that if it did come back I needed to have something in reserve if it returned, so. But I had three weeks to think about it.

We went back and the very smiley doctor looked a lot, even more serious than when she was telling me I had cancer, and I thought, Oh, I don’t like this And she then started to explain, or asked me how much I’d remembered from the previous appointment. And I said not very much because I was so shocked. And then she started to explain about the pre-cancerous area as well as the area of the lump and I just remember turning around and looking at my husband, thinking, I’m sure this is more serious than she said last time

But of course, you know I had very vague memories. And then I remember just saying, Oh in that case I want a mastectomy My friend had had a mastectomy twenty years previously, she was doing very, very well thank you very much, and I just wanted to get rid of it I think. And then my husband said, Well is that really necessary And the doctor said, Well, in situations like this, it’s not ever the wrong decision But I don’t think I really knew what DCIS was at that time at all.

Had they used the word DCIS?

No, she just said pre-cancerous area. And I think, you know in my head I was thinking well, if they’re going to take two big lumps from my breast, they may as well take the lot cos they weren’t that big.

I don’t really remember, oh yes, then we went, had to go and see the surgeon, and he drew a picture of a breast and did lots of specks all over the breast and said, Oh, you know, it probably is a good idea to have a mastectomy And I was going along with whatever was being said to me at that point.

Then a few, you know, a few days later I was getting upset and said, Look I don’t want to go through with this anymore I said to my GP, I don’t want this anymore But at no point did I actually say, I definitely don’t want the mastectomy And I know that, and I also knew that I could make myself sound a lot more confident than I actually am, and she, they probably all believed me when I said, I want a mastectomy you know. Because I didn’t, you know, I didn’t really totally understand what was happening to me. I know I had, I knew I had cancer, I knew I had a lump.

I then, on the day of my pre-op assessment, I asked the breast care nurse to meet me. And I said, You know the surgeon wouldn’t be doing this if it wasn’t necessary And she said, No, he wouldn’t And even then, although I was getting upset, I didn’t want the operation, I didn’t say, I’ve changed my mind

About any operation, or about the mastectomy?

About the mastectomy. I knew I had to have the lump removed. I knew it was sensible to have both areas removed, but I hadn’t, I couldn’t actually bring myself to say, I don’t want the mastectomy anymore Because you know, in my heart I was thinking, well it, you know it would make life so much easier, but I, sort of, at the same time you do, I haven’t got the most wonderful of body images, so the thought of losing my breast as well, you know, it just was just too much.

The other issue was the surgeon, on giving the bad news, said’ “Now you have two options’ either a mastectomy or a wide local excision.” And he said’ “It’s your choice.”

And we went through the reasons for each.

I can’t remember very clearly at the moment but I remember I had Christmas, the whole Christmas period, to think about this. And thank goodness for e-mail. I was able to e-mail my specialists where I’d had my previous operation and said, you know, I wanted their opinion.

And again the woman surgeon said some very sensible and sound, gave me some very sound advice, which was she couldn’t say categorically which way I should go.

She said experience showed, research showed, that in fact in this particular kind of case mastectomy and wide local excision were of equal benefit.

But, once I had made the decision, not to go back on it, not to think about it. Just forget and move on. You know, make the decision. Which was very, very good advice because it’s no good thinking’ “My God, have I decided on the right thing?” And that was a lot of help.

If you can deal with the behaviour without the medication and you, have got experienced expert carers and nurses who are able to deal with it without the medication obviously that’s better. But there comes a point at which they do need medication and my mother is on medication and ‘I think it is right that she is on medication.

I then think that, what doesn’t always happen is the medication is not always monitored enough and I think as with my mother’s case and I am sure is the case with a lot of other people in a lot of homes the medication is used more than is necessary for the convenience of staff because it keeps people docile and it keeps them sleeping in the chair.

And I realise my mother needed medication because she was distressed all the time and anxious and worried and she, so she needed something just to take that edge off. And when I saw her sleeping, sleeping, sleeping, and very confused and I thought ‘how much of this is Alzheimer’s and how much is the medication?’

So I actually went to see her doctor. She is so lucky she has got this lovely young girl – I say young girl; she’s probably in her 30s! – doctor, who is really nice and very thorough and very keen that we work together. And I hope I’m not a threat because we, are nice to each other.

And I actually made an appointment at the surgery and I went to say that, ‘I just want your advice but I’m not sure, I just wondered, I don’t know about these things, but I’m wondering if my mother is very heavily sedated and whether there was any mileage, whether they could lift the sedation and if that made her too agitated whether there was some sort of anti-depressant because I know anti- depressants can work in a different way, they make you easier about life.

She said ‘Oh I see what you’re saying. I don’t actually know but I’ll phone the psycho-geriatric specialist and have a chat. And the message came back that he thought it was worth a try and so that’s what they’ve tried and they’ve lessened the tranquillisers, given her an anti-depressant as well and it may change tomorrow, you know, gradually it may change but at the moment my mother has got back a better quality of life and she’s not.

So she’s talking, she doesn’t talk sense but she’s got the energy to talk. She’ll laugh and when somebody will come up to her and say ‘Hello’ and she’ll smile and if they say something that’s a bit risqué she’ll go ‘Oh I don’t know. And that’s how she used to in the old days, so she’s got back a little bit of herself by the right balance of medication.

So I think if it’s at all possible you don’t use medication at all and obviously the professionals know better than I, when the medication should be brought in but I think there’s a danger of it being used unwisely, indiscriminately if you like. And I think it’s a shame that it can’t be used more wisely that there aren’t, well I think it’s like education isn’t it, health and education are under-funded and under-resourced and undermanned. And in an ideal world if there were sufficient people looked after a limited number of patients then that sort of thing could be carried out. And I know in this hospice in [town] that’s what happens.

I don’t think it would have happened to my mother if I hadn’t been there actually, I think she’d be, have a less better quality of life. Yes, there comes a point at which medication is definitely needed because she couldn’t, it would have been cruel to let her live a life of anxiety all the time and she was pacing and worrying and eaten up with anxiety so she needed something, it was just a question of the right thing. And people being encouraged to take the time and trouble to get it right. It seems right at the moment.
<

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.

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

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.