I was very lucky always getting the best medical treatment, and virtually easy access to the highest authority in the neurological world, both in Israel and the UK. Information, since I think since the gene was identified as DYT1 which is the mutation common amongst the Ashkenazi Jews. Information was rather easily available.

Obviously before you go into brain surgery you always have one more questions. I did speak to a few patients who underwent the operation before me, before I had the first one. And, it was always helpful and reassuring and, and, good results. But it wasn’t, if you know what information to look for, it’s very easy to find it, relatively easy. But it takes some investigation and, and trying to activate all the different information agents that you’ve got. But we were able to gather a relatively good information. Albeit we gambled on the wrong horse in terms of the first operation.

In retrospect there’s no comparison between the first operation, which was done privately and which cost us a lot of money, which was covered by the insurance, but we paid an absolute fortune and received a five star service with terrible results. Whereas the second operation which was done in this amazing place, in [hospital B], which is a remarkable centre. I still go every now and again to get the system tested and to get the pacemaker. That’s where they do the fine tuning, so they’re still doing the fine tuning. It’s minor twists of it, but just to get absolutely the most of it, it’s such a great sense of team work, and, dedication and they will go all the way just to make sure that you get the best service.

If the blood is tested and they find out they are a carrier when they’re pregnant, do they then test the father?

Oh absolutely. Now we go into full scale thing, it goes into full scale operation. Whereas it might take four weeks for them to get an answer it’s now done in four days. Obviously there’s an urgency here. We don’t know, nobody knows at this stage if both parents are carriers. So we do the mother, and we do the mother, the full works, we give her the biological testing, and we give her the DNA. We do the father the same way. And then the results are looked at within four or five days, and if there is, if they are both carriers, now it depends on the semester she’s in, whether she’s passed eleven weeks or not. You can’t do the test before eleven weeks. It still isn’t certain that the foetus, at this stage it will be an embryo probably. The embryo is a Tay Sachs embryo because it could be one of the We’re not going to be worried at that stage about carriers obviously. Only the full bloodied Tay Sachs disease. Then she’s asked, whether she wants counselling. it’s highly suggested. And she’ll either come here or may be somewhere else, but usually it’s so few nowadays they come here. And we will tell then, now what you’ve got to do now is etcDo you want me to describe it. I will. it’s your decision, but we’d like you to have an in vitro test at eleven weeks, if you want it at eleven weeks, or sixteen weeks Eleven weeks it’s a CVS is a chorionic villus sampling. At sixteen weeks you can’t do it before this it’s an amniocentesis. Of the two the amniocentesis is preferred, because that’s the least invasive type of requirement. A CVS is invasive. it’s obviously done through the vulva, it’s down in, that sample is scraped? from where the actual embryonic tissue is on the wall of the uterus to get the chorion and all the rest of it, and there is a higher risk of causing a termination that way. it’s about 1% but it’s a risk.

The amniocentesis, and we always tell them information, if you’re going to have an amniocentesis you sit and watch the screen. Make sure the person doing it is a consultant or at least a registrar whos doing it. Watch the screen, and watch what he does, because if he puts the needle into the foetus that’s not a very good idea. And they are more aware of doing it carefully if somebody’s watching it, and has got a little bit of knowledge. Do you understand what I’m saying? So and that cuts the risk down of a termination occurring naturally, down to 0.00%. it’s very, very low. Now if it’s all clear, it’s all clear.

Unfortunately if it isn’t then the patient has a choice. They can go the full hog and have a Tay Sachs child if they are religious or they have a moral view that it’s not the right thing to do and will take the risk. it’s their decision. No one will force them to do anything. Their choice.

But once they make the choice, the choice is made. And if they have the child we now tell them what the situation’s going to be. And how pretty rough it’s going… because they don’t really know what it’s about and it isI even show them a film. I made my own films to highlight this particular thing.

And they’re on their own, because there is no NHS facility for dealing with it, this is terrible, there was never in our day. We only allow the consultants e only allow the child to be taken to a hospital area, because the consultant said if we do they’ll want to study the situation and since there was no, no harm being done to the child at a

Have you sort of like found out a lot about Crohn’s?

Yes, when I, when I first got diagnosed my paediatrician didn’t actually know anything. I was his first, I was his first patient with Crohn’s disease, so I actually got a lot of literature from the Crohn’s organisation, the LACC. And I learned, and I passed on what I was learning to my paediatrician. So I was kind of educating him, more than anything really at the time. And yes, I know quite a bit, and I’ve been very privileged because of doing the stand up. I think I’ve been very privileged in that I’ve been afforded a few opportunities that other people wouldn’t have got. So I took part in a documentary for the community channel which was called Science and Me, Crohn’s Disease and I got to meet sort of five scientists, all working on cures for Crohn’s and got to hear about different theories at sort of grass roots level which was fascinating and fantastic.

And it seems to me from my layman’s position that all of them have credence to their idea. You know, there’s one idea about map bacteria which is supposed to be a bacteria that’s in milk as well as a lot of other things. Now when I was a kid I drank a tremendous amount of milk in my primary school, you know, in primary school days. And when the other kids, you know, when you used to get, have bottles of milk, before Margaret Thatcher stole them back. Well we used to get them, I used would drink the other, you know, two or three of the other kids milks. So I think sometimes well maybe there was something to that, because I did, yes, I had a really big thing for milk, I’ve got something call Crohn’s Disease there’s a possibility, but there are various other possibilities as well.

It seems to me, like I said, that there’s weight in all of them, and actually I remember saying to one of the scientists, you know, It seems like you all have something right. Have you ever considered that may be Crohn’s is a result of a combination of these factors? And not just one alone. He said, Oh I never thought about that. But obviously they won’t meet together because they all want to be the person who finds the cure or the cause for Crohn’s Disease and they need to get the research grants, and, so it just stays as a bunch of separate people, all trying to prove their theory. Just a bit unfortunate really.

When you were given the diagnosis did the doctors give you enough information at that point?

No, nothing like it enough. First of all I asked the consultant I saw what diet I should be on. And he said, Oh its just trial and error Now it is trial and error to an extent but – because you speak to some people suffering from Crohn’s and they can have such and such, whereas you can’t – but there are certain things that most Crohn’s sufferers know don’t agree with them. I mean we, my husband and I always have fresh orange juice at breakfast and the first time I had it, I just wanted to die. It was so painful. Now when I’ve spoken to the other sufferers they say, Oh yes, fruit juice is out Well that must filter through to the doctors. And potatoes are another one. Wheat to a certain extent. I mean, you know.

I was then sent to a dietician, I had forgotten about that, who was absolutely useless, absolutely useless. I think a lot of people and I’ve certainly seen it from the web, are… combine losing weight with diet, even though it’s known that Crohn’s suffers generally are thin. I don’t know if you’ve found that.

I didn’t know anything about Crohn’s Disease and, and I asked people, but, you know, again there wasn’t really any information for theo anyhow at that time, I just went along with it. I had two young, you know, was married. I had two young children. And I asked how, how, you know, how do you treat it? Oh well let’s, you know, treat it with a low fibre diet and then you will be okay.

Have you found much information out yourself over the years?

Yes. An awful lot on the internet which is good, but I found sometimes you can absolutely frighten yourself. This is so much information. And that’s been useful I must admit.

And do you feel that you were given enough information at that point?

Yes, yes. I think I was handled very well. I’m very impressed by the doctors whove treated me at all levels really. Yes, I have no complaints in that area at all.

And have you read much about myeloma?

Yes. I’ve read, I’ve probably done what lots of people do, which is look at things on websites. But they’re all a bit confusing and I mean a lot of it is written in very technical language which I don’t claim to understand. I prefer to listen to what the doctors tell me.

At different times different sorts of information are very useful. In 73, 4, 5, 6, they just didn’t have what they have today, and there was very little. But when I was diagnosed in 99 I certainly got in touch with Ovacome, a support group for people with ovarian cancer. I’m a member of Ovacome and I’m a member of the Lymphoedema Support Network. I have gone to meetings which I haven’t found very useful from Ovacome, but that doesn’t mean that others wouldn’t have. I felt like I was too much of a veteran in a way. I had been around this too long. The Lymphoedema Network are mostly about literature and lobbying. I did that Arm and a Leg Clinic which was like a three week support group. Ovacome were incredibly helpful with information. They have a video about ovarian cancer and what the different stages mean and so on. It was really useful to have the kind of resource in my living room that I could watch slowly and take it in. I found all the various Bacup support materials are very good [now merged with Macmillan Cancer Support], and it just depends what you need at a given time. There are some leaflets on fatigue that are quite useful, but you don’t need to have them until you have the fatigue.

I’m using a cold cap now which is why I still have my own hair. It is absolutely torture, I mean it is unbelievably painful to do that. it’s freezing your head. For the first ten minutes, it’s like agggghhh. I cry from the pain of it, and then I can manage. I change the hat three times through my treatment, so when I have it on for the first half hour, the first ten minutes are excruciating. And then I get the next one and the first seven minutes are excruciating. And that stays on for 45 minutes, and by the time I get the third one, you can’t really tell what’s going on. it’s not so bad, because my head’s pretty frozen by then.

I’ve been learning about chemo and hair loss and the leaflet on hair loss and how to manage that is good. I’m doing something right because my hair is still here. But not everybody is as lucky as I am, and apparently there are two different kinds of caps. There’s the blue one which is the old fashioned technology that comes out of a freezer and there’s this new pink electronic one. I knew one of the nurses very well at the [hospital] because she used to work in the surgery clinic and now she’s on the chemotherapy day unit and she looks after me – she’s one of my little guardian angels and she said, don’t use the pink. it’s the new technology, but don’t use it. It doesn’t work as well. Use the blue

I think you have to have life beyond cancer, and some people are so immersed in it that it’s not that helpful, but I think when I’m ready for information I go looking for it on the web, in libraries, and somehow the right thing tends to fall in my lap.

Molecules of Emotion is a book by Caroline Pert. She was a scientist who began talking about the impact of emotion on the physiology of the body and how that can really help and or hinder your cancer, and just started opening up ideas like the more you can get your endorphins working, the more you can have strong immune system. Whether that’s going to cure your cancer or not is another issue, but it certainly will help you deal with the treatments that come at you. It was interesting in that it was a scientific woman writing about a scientific process and also talked about some of the politics in health research and health development which made me question a lot of stuff that was out there. For me it was a book that opened? my mind to many aspects of things. I felt it was good.

The surgeon at the time did not mention to me that he thought that I might have the BRCA gene, but he did think that I might have due to my age, and being an Ashkenazi Jewish girl. He, alarm bells rang with him that he felt that it would be necessary to test me for the BRCA gene mutation. But he didn’t mention it at the time. Now I’m the reason being when you’re just diagnosed with something like that, there’s so much information thrown at you at once. You know, I was otherwise a very healthy, fit and well person. It was too much information. So he decided to keep that information for a while. And I didn’t get This information wasn’t put to me until after my chemotherapy.

But in most people’s cases I think it’s a good thing to know at the beginning because now I’m faced with the choice that I have to have my other breast off which I’m going to do. So I have more surgery to face now. And I also have the choice to have my ovaries out which I’ve now done. The ovaries are separate because you can do that keyhole. It isn’t so intrusive. But the actual going into surgery again now – I don’t really want to. I’m kind of getting my life back on track. don’t really want to do that. But I have to. If I would have known then I could have had it done, dusted on that first day, back in 13th March 2009, double reconstruction at the same time, if I would have been more aware.

Have you read much BRCA or have you just relied on the information you’ve been given?

I’ve read a fair amount, a fair amount, but it’s quite complicated to be honest. I know there’s three identified genes that they’ve now found that are linked to BRCA, to breast and ovarian cancer, and other cancers with it. And BRCA 1 or 2 is either one of them. And you’ve got a 50% chance of carrying if you’re carrier, of passing it on, of course, to your children.

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.

And do you find the friends that you’ve got who are going through similar experiences that’s enough for you?

Well I mean. I think every case is different really. We’re all unique. It depends on, you know, the size of the lump, where it was, whether it’s spread, you know, the type of cancer. I had the ductal type, another friend had the lobular type, you know, and another friend needed herceptin because she was Her2 positive, so we all had very different experiences. We all had chemo, but their actual diagnoses were different to mine. They are all different.

When you found out and you started doing all the reading about this, and you said you got quite obsessed with it..Was it the figures that worried you or what was it that particularly worried you?

Definitely the figures. If someone says to you, you know, you’ve got a 15% chance of not getting something, you know, you think well I could get this and because then looking back into my family history, having found out whod had it, and it was like six women, grandparents, and aunts. I thought this is, you know, this is frightening. 85%. it’s frightening. And also just reading up, its not only breast cancer, ovarian cancer, there’s other cancers. You just read through this list and it terrifies you. And then you just read more and more and it becomes like a morbid curiosity, and what have peopled suffered with and what have they done? What’s gone wrong? And you know, you read up on absolutely everything, and your head starts swimming, and you do get horribly obsessed with it, and then I wanted to meet other people that had it because as I say, you can make all the right noises if you haven’t got it, but I think unless you’ve been through it, you don’t really understand what’s worrying somebody. So that’s what I found BRCA Umbrella and I met other people who have the mutation. And it was just so nice to talk to people who felt exactly the same way and had, I suppose, irrational fears some of them, but absolutely understood what I was thinking. They have the same issues regarding your children and what if you passed it on to your children, and all of these things.

I met somebody who had glaucoma by chance, talking, and she belonged to it, and said how, you know, she found it useful and helpful, so I, I joined it, and I pay £20 a year I think. Get four, four big magazine a year, and its got a, they give a public lecture four times a year at different centres. One of them is in London, I’ve been two or three times, but it’s a bit way above my head. It’s too complicated really. And people ask questions. That’s the bit I like. But they reproduce a lot of this in the magazine. So it’s interesting you can read, I find that the most interesting part of it.

Why do you find the questions the most interesting part?

Because they usually ask questions that are a bit more, the layman can understand. And then they give an answer that you can understand better. Its usually I find a bit too high falluting, you know, for the ordinary layman.

In terms of information do you read a lot about Crohn’s or have you read a lot over the past twenty years?

I did. I did read a lot. I am a member of the NACC. it’s actually been a really helpful thing to be. First of all they give you this fantastic card. it’s called a Can’t Wait’ card with a lot of shops and businesses recognise and they let you use the toilet ever if there isn’t customer toilet. And I know it seems like a small thing, but it’s a life saver. I would recommend that to anybody with Crohn’s disease. Join the NACC just for that card.

They also have a lot of information on their website and they have meetings with doctors and lectures and update you on new things, send you their newsletter every few months. it’s good stuff. It helps. So I did learnt quite a lot about it. And about other conditions that connect with it. Or don’t, you know, because when my back problems started I was looking to see has it been affected by the Crohn’s. Is it something new? But indeed it really helps with these things which I didn’t have when I was 15. So it’s easier now I think.

I found out most of the information myself, and there isn’t that much there. You can go on the Macmillan’s website or Breast Cancer Care or whatever, and there’s a bit of information, but its, its generally aimed at people whove had breast cancer and so on. There isn’t that much, so

Are there any websites you would recommend to people?

Definitely the BRCA Umbrella which is brilliant. The charity Breast Cancer Care have been running a telephone support group for people with a family history of cancer, which I’ve been participating in which is a six week group on the phone with six women, and we just chat about how we feel. What’s worrying us. So they’ve done that. I’ve had some good booklets from, they’ve got a good booklet on breast reconstruction. Macmillan have got one now on breast reconstruction and hereditary breast cancer. So I think other charities are realising that it is a growing problem and that they need to do more for it.