How does that feel if you are experiencing real pain, and you’re being told that it’s in your head?

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

So she did it. But by this time, it didn’t sort of worry me. You get used to it, you know, it’s not a pain, it’s a sensation – really it was nothing after that first time I had it done. She said, And then I’ll see you in two weeks. So we made the appointment. Of course they rang up and said, You can’t have this, you know, the doctor’s not come or something. We’ll send you another appointment. So they sent it for about six or seven weeks ahead. So I rang them again and said, I’m supposed to see somebody within two weeks. And the woman said, Well that’s nothing to do with me. Of course I should have said, It bloody well is. But any way she didn’t do anything about it, I thought well, I suppose they know what they’re doing.

So I went into a Specsavers from whom I had bought glasses, but not the same branch, because at that point I was away for a few days in Bristol. So I went and said, I am a customer. But would you check my pressures? And they did. I mean it’s good people did that without any, you know, worry at all. And it was fine. So I thought well pressures all right. So doesn’t matter that the appointment was put off for so long.

But this eye I still have to use the drops to keep the pressure down. In fact one doctor I saw, I’d never seen before or since, said, You should have that redone. Re-trabeculectomy you see. He told me to ask the consultant. I said, Well I’m not very good at that. No, no, you must make a noise. Make a fuss. I said, It’s no good, I said, I’m not that sort of person. And I mean, they’ll never get my sight back, so I don’t really think there’s a lot of point. But anyway the other doctors haven’t said that so

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-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

So how would you describe your experiences with health professionals?

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.

When you say sometimes they don’t talk to you, do you mean they talk to your parents?

Yes.

Why do you think that is?

Maybe they just don’t think I’m capable they don’t want to frighten me or there isn’tthey don’t think I understandI 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.

How does it make you feel if they don’t talk to you?

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

Do you find that happens with other people or is it just doctors?

Sometimes with other people, but mostly with doctors.

Do you think if you had been more questioning of the doctors at that point, there was something they could have done that early on that would have made your life easier in terms of the Crohn’s?

Yes, I do because it would have given me a greater understanding. And I mean, maybe a lot of it, is to do with the fact how doctors sort of dealt with their patients, you know, years and years ago, doctors were gosh, you just sort of listened to exactly everything that they told you. And, you know, probably I certainly didn’t challenge, whereas these days I do. Yes.

You’ve got support now with your gastroenterologist and the follow up appointments you’re having now. Have you found support anywhere else? Any other form of support?

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.

And they’re very good the hospital, because I’m sixty odd miles away they, when I go up there I go for a whole day and they, if I’ve got to have any tests or anything they arrange that for the morning and then if I’m seeing more than one doctor, then they arrange that for the same day. So I see, I usually see two doctors and I might have an MRI scan or something, all on the same day, so that I don’t have to keep coming backwards and forwards. So they’re very good. And sometimes if they have to make me a very early appointment they have a place up there where people can sleep over night and they let me stay. So, they are excellent. Very, very pleased to be a patient there.

And do you feel that not being informed is a result of the doctors not really knowing or poor communication?

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.

Why do you think it took them so long to actually get to the point of acting then?

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 tablet.

And don’t drink too much.

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.

Have you thought about taking that further and asking?

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

What you and your wife?

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.

Does she goes through the practicalities?&nbs

I didn’t have any genetic counselling as such which I know some people do get. I went to see a psychologist before my surgery which looking back on it I don’t think it was particularly useful at all, because for a start it was a man which I hadn’t really, it didn’t bother me, until I mentioned it to someone yesterday who said, that they thought that was quite weird that they sent me to see a man about breast surgery, because I don’t, I don’t think a man could relate to it in the same way as a woman. But it hadn’t really bothered me at the time.

But he just asked me questions that again now I think back at them, I think, what a silly question to ask me. He said to me, When you’ve had your mastectomy and you get changed in the communal dressing room, how do you think you’re going to feel? Would it bother you I said, Well I have absolutely no idea if it’s going to bother me, because I haven’t had it yet. And if it doesn’t bother me that’s very good, and if it does I’ll come back and see you But I just thought what totally useless questions. And I knew more than he did about what I was going through. And he just said, Well it’s seems like you’ve done a lot of research, so I think you’re fine for surgery. I think he was just trying to see if I was some kind of nutcase that just liked surgery. Yes. So…

Did you think you were given enough information when you got the diagnosis?

Yes, I mean I think that was one of the benefits of going private. The breast cancer nurse there was absolutely fantastic and you know, she spent time with us after we had been told it might be cancer and explained the whole process to us, so any questions And in fact we went back in the next day, so she could explain things in more detail, and we got used to the decision, but all the way through, her, and the other two chemotherapy nurses were fantastic. And having spoken to other people whove been treated on the NHS, I mean the treatment just doesn’t compare really, and I don’t think that’s any fault of the nurses in the NHS, there are just too many people to see, and not enough time, you know, these people have got the time to spend with you, and they’ve always been at the end of the phone. Even now, you know, nearly three years later, if I’m worried about anything, I know I can phone them up, and they will answer the question themselves if they can or they’ll speak to the oncologist and get back to me.

Can you give me an example of something that you would ring them up and ask them about?

Just, you know, as I say after the treatment your breast feels very different after the surgery. Things seem to be in a different place, and even with the radiotherapy, so I might feel something. Has that always been there? or is that something new? And I just go for reassurance. So that’s it. I pop in to see her. You know, you can just do that. Even after all the treatment, they’d say if you ever want to come in for a chat just give us a ring, and come on in.

And I was on the list, you know, it takes time, you are on that conveyor and then I was on a new conveyor belt, which was the ovary removal conveyor belt. So I am on that conveyor belt where once a year I have my counsellor. I am on the conveyor belt of once a year I have my mammogram and MRI. Then I am on the ovary conveyor belt. So I was on the ovary conveyor belt, because its blood and make sure you are healthy, and pre op and all that kind of stuff, and filling in forms and all that.

And, so I was on that and I was waiting. I was told don’t go to the [hospital] because their wait list is too long. And then when I was on the [hospital] ovarian removal department, who also had this genetic cancer department. And, you know, you can’t fault them. Whatever people say about the NHS, they are amazing. I mean absolutely supportive, and the nurses, everybody is just so caring. There is no one situation where I thought oh they’ve been absolutely brilliant.

So you are saying the NHS was really good?

Yes.

Did they give you enough information do you think?

Absolutely. I don’t know if everyone did, but you have a counsellor who is at the end of a phone and you can phone them. The only time there was, not a blip, but an issue, was [hospital] run out of money to do the MRI. And, so it was a wait, it was a wait, it was a wait. And I said, Well what can I do? And she said, Well go through your GP. So, which was fine. So I went to my GP. She was amazing. And I got my MRI through, a local hospital, the [Hospital] and now to be honest with you, it saves me going up to London, now I have my mammogram and MRI through [hospital] and not the [hospital] which saves me a real trek to London, which is ideal.

The best thing so far was conventional medicine. My consultant at the hospital has been fantastic. He’s been so helpful, you know, and willing to try things, you know supportive, being there when I need, when I need him, when I need to talk to someone about what’s going on. And he never gives up, he says, Oh well this can work. Let’s try this, let’s try anything He always has something new up his sleeve, you know, which is really lucky [laugh].

And I’m waiting for the day that, you know, that row of medicines will stop, because some work for a short while and then they stop working and, but, I have been very lucky I believe with him. I was very lucky because I know that a lot of people don’t really communicate like that with their consultant. You know, they barely see them. They go and they see a registrar, a different one every time, and they have to start the story all over again. I was very lucky being able to see the same person for years now. It helps.

So do you feel you’re being well looked after by the health professionals?

Actually without question. There is, in my opinion there isn’t a better place to be because they specialise. I mean the downside to being in a hospital like the [hospital name] is, and I now have a standing joke, with my plastic surgeon’s secretary which is whatever date she gives me, can she give me another one at the same time because I never, ever make my first surgery.

My big surgery, that was very, very, very traumatic because I like to have everything organised in my life. I like to know where everything is, and with [daughter’s name] I had everything scheduled, spread sheeted, everything, went into hospital, and literally I was just about to go down to theatre and everyone was in theatre, and my plastic surgeon came into me and he said, I’ve got something to tell you. And he wasn’t changed or anything. He said, We have to change your surgery. I have to cancel your surgery.

He had drawn… I mean I was covered in black marker. I’d psyched myself up. I was, at this point, a total wreck, because I’m going in for anything between 10 and 15 hours of surgery. And he says, We’ll have to cancel, which was devastating. But the reason I had, they had to cancel it, was because they had another patient who needed the intensive care bed. Which however devastating it was for me, someone else was in a more devastating position. So he said to me, Is there anything he can do to make it better? So I said, Just let me walk out of here with another date, which he did. And we had it then.

And anything else I’ve had since then has always been the second date. My surgery next week, should have been last June, but I opted to cancel last year because I had too much on. And it was, it’s purely cosmetic, it wasn’t medical. So I didn’t, I thought if I put it off it’s not the end of the world. So

Yes.

So we’re now on part two [laughs] the nipples. But, as annoying as it is, it’s inconvenient. It’s not life threatening. It’s annoying. But because you’re in a cancer specialist hospital, you always run that risk. So