Well I’d certainly recommend the Myeloma UK Organisation which is brilliant which has done a tremendous amount in improving the lot of myeloma patients in this country. First of all, in negotiating with the National Institute for Clinical Excellent, is it, NICE? And as a result, largely of their negotiations, they have succeeded in persuading NICE to authorise two drugs; Velcade and Revlimid, neither of which was available a few years ago, but both of which are now said to be, well are major components in the fight against myeloma. And probably in years to come Velcade will be the treatment I’ll have next after the stem cell treatment whenever that comes around and then Revlimid is the next one which again was only authorised by NICE quite recently but it has found to be very effective in latter stages of myeloma.

And the Myeloma UK Organisation has done fantastic work in that. They’re also very, very supportive. They have a telephone number in Edinburgh you can phone up and talk to anybody about any aspect of it, and they’re very, very helpful. They also run support organisations around the country, and they also run conferences around the country. There’s one in London every year, and there are about a dozen around the country, at which they bring the latest technology and the latest experts to talk to people about developments in the world of myeloma.

And I’m involved with the, with the society that’s here. The Familial DSGB and I do have contact with a few people, a few of the sufferers as well. Either on the phone or we meet up occasionally.

And do you like that?

Yes. it’s okay. To begin with I wasn’t that keen on it, but now I am happy.

Why weren’t you so keen on it?

I don’t know. I just, I didn’t think that webeside FD I didn’t think that we had much in common but we do help each other and talk to each other about what similarities we have and Things like that.

Is there much similarity?

Like our walking, scoliosis, pegs. They are similar but people, some of them are more independent than us, than me. They go travelling with a carer on planes, which I wouldn’t do. I’m not a very good flyer. And they’ve written books and things like that, which I haven’t done. Well I’m not planning to write anything. But there are different levels. FD varies from person to person. Sometimes people have more chest problems or spine problems than other people.

Have you sort of got involved with any support groups?

No.

Can

I would really hate to do that. I mean, you know, I went, I had a friend who was ill with it and I used go and visit him, and it used to scare the crap out of me, because you go into hospital you see people whove gotI mean I’ve led a normal life with it. But if you go into hospital then you see people with the same disease with you that are living hospital lives. it’s absolutely terrifying.

This guy, who is a very good friend of my younger brother, he pretty much got hooked on the codeine and abused it. And he’s a weak person. And, I think he got, he got terrible depression. I mean catastrophically for him, he managed to use his Crohn’s to get himself on disability benefit which has ended his life. Because he had a £100 a week which isn’t enough to live, but it’s enough just to keep the wolf from the door, you know, he used the codeine the wrong way. He used other pharmaceuticals that he ended up getting prescribed as a result of it. And I don’t want to sound sanctimonious, I suppose it does sound a bit sanctimonious but I believe he had something largely similar to what I had.

Maybe, he probably had it a bit worse, but he just messed his life up. He just had no, maybe he had it a lot worse than me, maybe that’s a harsh thing to say. But his life was… I mean I gather now, he’s now talking to his family, but his life was basically ruined – by having this. But I also think the worst thing that could ever happen to him was disability benefit which is just a way in which you don’t deal with life, you know, you’ve got just enough money to feed yourself. So you don’t go and get a job, and he’s spent his whole life feeling sorry for himself. And taking the pharmaceuticals taking I can’t remember what it was, I think he got into other things as well as the codeine. I can’t remember what it was now, but it destroyed him, the Crohn’s, just destroyed him.

But I never needed a support group and I’ve got my sister there anyway. And I’ve got three sisters. One has serious Crohn’s like I’ve got, and the other two have really got Colitis or Crohn’s too. So it’s permeated the entire family in my generation.

And the only support you’ve said, you’ve had your sister?

Yes.

You haven’t felt like seeking support outside of

No. No I mean I’ve got Crohn’s, I’ve got Crohn’s Association stuff, but I always, I never really had active Crohn’s and so, not after that operation. I didn’t think there was much in it for me, and it was, as I said, I don’t, I didn’t even, when I had those check ups I didn’t like going to hospital. I don’t like being around other sick people. I don’t like seeing other Crohn’s people looking shit. You know, there’s no use you having depression, you just soldier on.

Did you read much about it?

No.

Have you ever looked on the internet?

No I don’t want anything to do with it. Every now and then if a new cure has come up I might have a look at it, but I didn’t, I didn’t consider myself, I consider myself to be leading a normal life afterwards. Notwithstanding I went to the toilet a lot. Occasionally there’d be something in press about oh this big new cure, I have a quick l

I have meet a few people that have had it yes. Actually two people I’ve met. One of them had it severely worse than I did, and another one was working at the World Trade Centre on September 11th and so yes, I’ve met some interesting people who have got the illness. FD, FD is the other name for it. So, not many people, unless you’re Jewish, not many people know about it, know about this illness so
And have you joined a support group or anything like that?

No I haven’t. I’ve always been asked if I wanted to but I haven’t no. I don’t, I don’t know, I’ve gone to disability days that have happened in New York. There hasn’t been any in this country, maybe there has been. Because there’s only about four or five of us with it that live in [city], the rest either live in New York or Israel. So it’s a pretty un-well-known illness. I mean one good thing about this film that I’m doing and doing this review it’s going to tell people more about FD. So and hopefully that’s what we want, and this thing I’m doing in America to help the genes and the growth and things like that about, I mean how different science is now to what it was like 30 years ago, even before I was born. So yes.

And what about support? Have you joined any support groups? Or ..

Support or Sport?

Support.

Before the operation I was, while in Israel, Dr [name] was the head of the Movement Disorder Unit in Tel Aviv. He said, Well we’re establishing a, a support group. Why don’t you join? There was nothing I couldn’t think of anything worse, than going into to a room full of people with my condition. It was my absolute nightmare. I was in denial, I wouldn’t say in denial. It was just I didn’t want to walk, I hate, I didn’t want to look in the mirror and an analogy if I looked at people with the same condition, physically. There was a little pavement in the Kibbutz, which at the end of it was it all sort of reflecting mirror, I wouldn’t walk on that, on that bit of pavement. I just couldn’t stand to see myself walking, let alone seeing someone or seeing someone else with the same condition.

So now that I’m over the worst, I can easily see myself engaging in such.. happy to speak to, or share my experience, but when I was in the midst of it, I didn’t want to associate myself with anyone with that condition. So, I didn’t join any support group prior to the operation. We are now members of the Dystonia Society in the UK. In the UK, it’s the only society that deals primarily with other types of dystonia, so they’re not quite it’s not that niche, which is the Jewish niche if you want. They focus on a wider group of torsion dystonia.

I did get involved with the NACC when I first was ill because I wanted to understand and I didn’t want to feel alone. Over the years I’ve disconnected from those kind of groups. I will do any help that I can for them, if it’s a charity. On Saturday I’m going to Manchester to headline a gig that’s to raise money for the NACC. In the beginning of August I’m over in Guernsey for another gig that’s to raise to money for the NACC. A couple of weeks ago I did a gig that was at the Comedy Store to raise money for a hospital that specialises in Crohn’s.

I’ll do that, but I feel now like I don’t want to be around a room full of people who have got Crohn’s and it’s not about wanting to feel like I’m the only one and it’s my thing. It’s more that I, like in the past when I’ve gone to the AGMs for the NACC and things like that, brings back some bad memories really and I’ve moved beyond, well yes, I like to think I’ve moved beyond them and I obviously have. But those kind of, being around too many of those people sometimes brings it back and there’s an element amongst patients of any illness, I think, of competition, of having more operations, or I’ve had, or my Crohn’s is worse, or I’ve had, and I’ve met people like that, and fair enough if that’s you choose to conduct yourself, but I’ve made a point of I can’t tell you how many operations I’ve had on my belly. I know it’s a lot, but I haven’t racked it up. I haven’t got a tally chart, and it’s the same with any part of my body, I just try to not make it on some levels the be all and end all of who I am.

Having said that, at the same time, it is part of who I am within my work, has been part of who I am, within my work and some of the work I’ve got. But I find yes, I find those groups quite difficult now. And also as of any groups they’re full of, they’re often full of people that want some level of power in some organisation. So you’re get your bad eggs in everything and I just choose now to just do my bit and help out, but not really be hands on, if I can help it, you know.

Have you got involved with any support groups?

Yes. I did start with, there are two local groups. One, I only went to once. They used to meet in each other’s houses. They were a lot older than me, and, quite churchy type people and I didn’t feel I fitted in. They were very nice but, I think for most of them their experience was many years in the past. So I didn’t find that terribly helpful.

There’s also a local group that met every month in a local community centre. I went to that about four or five times. And they were a much more mixed group and I did get chatting to a few of the women there and that was quite helpful. And also the [clinic], private clinic where I went for treatment about every four months or so, they organised an evening and invited all the women they had treated in the past, and I find them the most useful I would say. That’s only three times a year.

Why is that useful?

Because they usually organise something relevant. They’ll have somebody coming to talk about menopause, the symptoms, or they had a surgeon there to talk all different methods of reconstruction. Or they had people like Nicola Jane coming with swimming costumes and things like that. And plus it’s just an opportunity to see the nurses again, who you feel quite close to, and unlike the NHS there are only three people you knew you’d see through the whole of the treatment. So we did build up a nice relationship. It was quite reassuring to see them again, and just to see other women who had been through similar things. It just felt more cosy there.

Do you think other people may be getting that from forums? That they can ask questions on forums if they are a bit worried about something like that?

Well I think the trouble with forums is, you’re not getting an expert’s response, you’re just getting other people’s views, and I think people have very different experiences and somebody may have found something they think is another lump and they might perhaps that’s it, they’re worried. Somebody else could just respond, Oh yes, that happened to me. And yes, it was cancer Well I don’t think that’s going to help this person, because theirs might not be. This friend who had the lobular cancer, she had a mastectomy on one side, and she felt something in the other breast. And then there is definitely a mass there and she had to go and have that investigated, and thank goodness it turned out not to be cancer, but the last thing you want to be told is oh yes, that happened to me, and yes, it was. So, I think, they do have their benefits but you’ve got to be careful. I think sometimes you can come off the internet feeling worse then when you went on.

No apart from I like the way of life. Although many of my friends these days aren’t Jewish but it’s, you know, that’s how it is. I mean when I was a child you never had non Jewish people in the house or anything like that. But no, I like the way of life. I like the sense of belonging, even though I’m not a particularly active participant it gives you, for me it gives me a feeling of security. And, you know, I’ve got Jewish friends, non Jewish friends and most of the time we all mix in together and so, yes, I’ve got the best of both really, and, having the whole Jewish thing there, which as I say gives me a feeling of security.

When you say you like the way of life. Can you explain what you mean by that?

I think it’s the fact that I could go to the Synagogue if I wanted. And I know I will be accepted there, so that, that sort of thing. And again, almost of you know, the sense of community if you wish to participate. I don’t participate that much, but I know it’s there for me, and again, you know, almost a safety blanket that you can sort of, you know, run to if you need it. So yes, it’s important to me. My Jewish identity is important to me.

When you say your friends, you had certain friends that were really good. What was it that they did that you really felt

Well one friend just took control of the practical side of it, because I wasn’t able to do school runs, and my husband wasn’t working local enough that he could stay at home to do it. And, you know, this friend and two other friends between them, made sure that somebody was always around to take my children to school and to pick them up in the afternoon. So that was, you know, a big worry off my mind.

And they were there to talk to as well, but, I just, they can’t really understand, you know, if you haven’t been through it, you can’t really understand, you just know you don’t want it to happen to you, and you don’t want to see it happen to somebody else, but you don’t really know what the experience is like.

Did you get any support from Chai Cancer Care?

Oh fantastic yes. I had a counsellor called [name], a mad Israeli woman who was brilliant. She made me laugh. She actually said I didn’t really need counselling, but she liked chatting to me anyway. So we went. So I went and we talked about shopping and stuff. [laughs] And my girls. She I dragged my two along to the first meeting. They were fuming with me. They were not interested at all. They said they’d got their friends to talk to. So I had to leave it at that.

But I kept going back they’ve actually phoned and left a message, which I haven’t got back to her yet, just to see how I you know, to follow through and see how I am months down the line. And I went and I had some massages. Obviously very gentle. You’re not allowed anything deep tissue. But found it really therapeutic and it was all free. You know, you give donations to what you can afford at the time, but basically if you can’t afford anything then you don’t pay anything. Fantastic place. I really think it’s a fantastic place. No I’d definitely recommend it, and I definitely will in a year or so, when I’ve gone through the two years, go back and say, Right I’m now, please God, still in remission, you know, and would like to volunteer especially if I’m not working full time. I feel I’ve got to do something. So yes

When you’ve talked about choices, how difficult is it when you’re faced with choices, did you discuss the choices with other people a lot. Have you tried to resolves these choices yourself?

No I’m a very talky person. I like people and I’m not very good at making decisions and on these subjects I talked to genetic people, certainly medical profession people. [2 sec pause] And I have also spoken to other women in the same boat although that’s not been helpful and I’ve spoken to my close, my husband and my best, my girlfriends. And I have a counsellor. All of which has helped me consider the decision where I’ve, where I am at.

And you said it wasn’t helpful talking to other women in a similar position to yourself?

No, because no two people are the same. And, you know, one girl springs to mind, very, quite negative with her experience. Oh no I can’t face it. I don’t want to live with the fear. I don’t want to live with the fear. Well that’s not me. I don’t want to live with the fear. But I wasn’t living with fear. I was okay. I was working out that I’ve only got five years with my ovaries and working out that [2 sec pause] I was trying to get a good deal for myself. Negotiate a good deal for myself with BRCA. And other women with theirhave been like, Oh God, you must check yourselves. If I get osteoporosis with Tamoxifen I’ve gotrdquo; Talking to other women is not necessarily a good thing. That put the fear in me. More than I had. So
And you haven’t got involved with support groups then if you’ve not been talking to other women, or have you tried to be involved with support groups?

Now I have visited a local, it’s called Chai Cancer Care. it’s near where we live offering all sorts of services for men and women who have cancer. And that’s been okay. But I have actually found that the only person who really did it for me, was this kind of, my own counsellor that I found on my ownand it didn’t really did do it for me there. I didn’t want. It didn’t do it for me. My counsellor does it for me. She, she helped me through chemotherapy, which was at the time my biggest stuff. I found that horrendous. Again it was the lack of control. I don’t do drugs. I don’t do neurofen. I don’t do harmful things in my body. To have chemo was horrendous, psychologically for me. And she’s amazing with tips. She has been the one that’s really helped me through this experience mentally. And other women have been phenomenal in terms of when they found out I wasn’t well, people in the community have offered acupuncture for free, you know, physiotherapy. People have been so amazing. So, in that respect the extended community, alternative people, and I had that. That was amazing as well.