Jewish Health

 

It’s infuriating actually because I know it’s real, and I know that I’m not the only one who says it’s real. I mean doctors examined me and say it’s classic fibromyalgia and it does exist. It is painful. And I’ve met people with fibromyalgia and it’s, it’s very painful at times. And I know people that stayed in bed, you know, for months with fibromyalgia and just couldn’t move from the pain. So if somebody come and said to me and said, “Oh fibromyalgia doesn’t exist, it’s in your head.” And I’ll say, “You’re talking rubbish. You’re talking rubbish because the fact is it does, and there are a lot of people now, suffer from it.” And more and more doctors that say, “Yes, it does exist. It is a condition.” But there’s always, they’ll always be someone to tell you oh no, you’re talking rubbish and it’s only in your head. There’s always someone like that. Also I had with the Crohn’s, someone who once told me that it was, Crohn’s was in my head. And that’s now physically proven, you know, they took the bowels and like “Look it’s ill. It’s sick. It’s there.” But, there was a doctor that told that it was only in my head, and it’s actually not real.

 

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.”

 

She actually said what it would be and then afterwards radiotherapy. With it being Stage II and being, with the HERS oncogene gene strongly positive, that’s the one that they actually can use Herceptin for. At that stage Herceptin wasn’t available in UK, except as part of a trial. When I asked my oncologist if I could take part in a trial here, he just dismissed it.

 

Anyway and that’s, that’s what, you know, that would be the recommended treatment. So of course, I was a bit confused. So the way I, afterwards, I saw the oncologist I showed him everything that I’d got, and he said, “Oh.” He said, “They have a more aggressive approach in America.” So I said, “Well it’s not the United States, it’s Canada. And they might have a more aggressive approach.” I said, “But they have much better survival rates.” I said, “Britain is right near the bottom in Europe.” At that stage I think only Greece was worse then us. I mean in terms of survival rates for breast cancer.

 

So, he sort of rubbished me, and he said, “Oh you know, there’s risks.” He said, “If you have chemo, it can increase your risks of leukaemia.” And it could be this, and it could be that. Anyway, so basically what happened was that in the meantime, he said, “We’ll start with the radiotherapy.” And then my mum was also coming to be with me.

 

So in the meantime I had an email correspondence, and obviously, and I was speaking to my sister and brother-in-law, because they also said to me, “Don’t go on the web, because there’s just so much information, it can be totally confusing. We will find out for you because we know the right things to find out, the right people to ask and we’ll get back information.

 

Anyway, so, I would send them his replies, then they would send me further information, and then I’d speak to him, and this was going on. In the mean time I also contacted my one cousin in Israel, who, from my perspective, is the doctor that I would trust more than anyone else in the world. Absolutely amazing person. Older. He had been a GP and then he had become a neuroanaesthetist.

But he was up to date and he would find out things. And he found out. And he said, “In Israel, this is what would happen.” And I would be having chemo. A friend good friend is at [town name], also in the medical profession. Not an oncologist, but works at the hospital, so then you can be in touch and everything. Her actually speciality is infant baby breathing. And she found out that if I was in [town name], they would be recommending chemo. So it seemed to me, you know, that was definitely considered the best way forward.

 

In the mean time my mum arrived and when she came with me to radiotherapy and met my oncologist, that was the first time he actually said, you know, “Think about it, and you’ll speak to me at the end, and if you want chemo you will be able to have it.” Anyway, comes to the time, I have finished the radiotherapy and I have a little period of recuperation and I have to meet him and he’s going to see how I am. And it’s my decision.

 

And I said to him, you know, after everything I had done the research. I mean there was, there was a slight increase in terms of statistical stuff, in terms of the risk of leukaemia, but it was .014. So, so that’s like, you know, fourteen thousandths of an increase. And if the actual risk of leukaemia was only like about 2%, you know, it was a very, very small increase. I mean you sort of need to understand a bit of statistics, but you know, weighing up all the things up, I thought I wanted to give myse

 

Variable. Sometimes they talk to me, sometimes they don’t. But on the whole they do talk to me as a person. But the way they, I had my peg changed recently, and they didn’t give us, any information about it. Because they put in a temporary one, I’m waiting now for the permanent one. So there were real communication difficulties with that. But on the whole okay. You know, variable.

 

 

Yes.

 

Maybe they just don’t think I’m capable they don’t want to frighten me or there isn’t… they don’t think I understand… I don’t know. It depends on which train of thought they come from. The more mature doctors think more of themselves, and the younger ones, the not younger ones, the up and coming ones are more open and more understanding.

 

 

It used to upset me, but I’m used to that. It’s more… it’s okay. I listen. And if I understand, I understand. And if not I ask my parents when I come home to verify things.

 

 

 

No. I haven’t looked for it. I’m not a hundred per cent happy about the support from the gastroenterologists simply because I keep seeing different ones, and last week I wrote to the original consultant with a copy to the hospital Chief Executive, saying I wasn’t happy about this and could I go back onto the original consultant’s list. And also they kept on changing appointments and whatever, and I’m still waiting for response. I think okay I know doctors are busy, doctors move on, there’s sometimes shortages and everything’s written in your notes, but, you know, for me, you like to build up some sort of rapport with the doctor and feel that, you know, they don’t know you as such, but that, you know, they’re aware of you, and also, you know, doing that, you then have confidence in the doctor.

 

What I have found particularly annoying, they change the appointments, sometimes two three days before you’re due to go for an appointment, they then make you, offer you, make you another appointment for five six weeks later and the chances are, they could well change that. And it’s... and this is why I did a copy of the letter to the Chief Executive, because who decides, you know if you change the appointment, who decides which patient can wait for five or six weeks or whatever? So I’m waiting for a response from that because, you know, to me this really isn’t acceptable. And fine, I will challenge it, but there are lots of people who won’t.

 

 

I’m sure it is, yes. Yes. I genuinely think that they are not quite sure what to do. It’s got to the point where anything they do is a big dodgy as far as my future health is concerned. So it’s like the status quo can be maintained.

 

 

I don’t know. Because I’ve had this so long, over this period of time, I’ve been seeing a series of different doctors [laughs]. And with one doctor in particular, as long as I turned up, and appeared to be walking, talking, and breathing. That seemed to be okay. And he’d say, “Oh you’re looking well, jolly good. I’ll see you in three months time or whatever.” And you know, maybe I should have complained and nagged and gone on about it, but I was always glad of, and quite happy to be active, and walking around and teaching and doing what I was doing.

 

And maybe I never laboured the discomfort that I felt. But the fact that I was there, seemed to be okay. And, and, an excuse for them to do nothing [laughs]. You know, it was like “keep taking the tablets”.

 

 

Oh no one’s ever said that again. That happened until I was, as I say with this gentleman in Cornwall who funnily enough after this incident of having the nuclear stuff that I drank and breathing in and then seeing the junior doctor rather than the consultant as I should have done. And then seeing the consultant and him getting, arranging the colonoscopy and ringing me up and telling me to sit down after that, instead of keeping him I got another gastroentologist. It was almost as if, you know, I don’t know whether I’m putting two and two together and getting a four or five, but why did they change. Why? Was he feeling guilty? Did they think I’d kick up a fuss? It was strange.

 

No, because they, they just stonewall you there. You know, it’s, it’s a bit like an old boys’ network isn’t it? You’re not going to speak up against another doctor. So …

 

Well they just, their answer is to give me tablets. In the first instance, they are okay, you know, Viagra. Okay. It seems to work, but not terribly well. So I went back and I said, “Who can I see?” And they sent me to the urology department . He gave me some different tablets. Well that wasn’t really dealing with the problem at all, because actually it was the same tablet, but a little bit stronger. It wasn’t addressing my needs at all. And then I went and saw the colorectal nurse and had a frank discussion with her, and she said, “Oh I’ll talk to a clinical psychologist.” And then she rang me and said, “Well he suggested, well rather than go to see a clinical psychologist we’d go to Relate.”

 

 

Yes. And I thought well that’s passing the buck a bit isn’t it. So I feel a bit disappointed with them, that kind of … you know, an operation like that it’s, it’s intensity, I would have thought requires some degree of counselling [laughs]. You know the stoma nurse comes and tells you this is going to happen, that’s going to happen. This is what you do. Blah blah blah. End of story. And that was it. That was all the counselling.