You’ve said you’ve been quite obsessed and reading lots about it, since you found out you are a carrier. Has that had an impact on your relationship?

Yes. I think when I first found out I got very, sort of obsessed with it and then I was thinking about my surgery and my surgery got cancelled. I was very stressed and apparently I wasn’t a pleasant individual to live with according to my husband. I didn’t actually notice. I thought I was dealing with it quite well but apparently I was quite moody and grumpy and I think I was just so lost in the world of BRCA, I couldn’t relate to anything else. You get totally obsessed with it. You’re so involved in it, nothing else seems to particularly matter. You know, that’s the thing in the forefront of your mind and it’s just always there. So, I think he did suffer. I think I was quite grumpy with my mum and my sister, because I was just so stressed and then being cancelled twice, it just really messes with your head because you’ve got into that mind set that, you know, you are saying goodbye to part of your body, a healthy part of your body, and then it doesn’t happen and you have to go through it all over again. And I think I didn’t know if I could do that again. So, yes, I think it had an impact on my family relationships and the fact that
Did you discuss your options for treatment with your partner, mum or sister?

Yes, more with my partner because he was going to go through it with me. And he needed to take the time off work and look after the children. I didn’t particularly want to talk about it so much with my sister, because I felt guilty, because she is younger than me, has no children, and has no partner, I didn’t feel it was fair for me to make her feel like did she have to do this, was it something she’d have to go through. I just felt like, I didn’t want to upset her so I tried not to talk to her about it, which I think upset her more, the fact that I didn’t include her. And then with my mum I tried to talk to her about it, but I could see that it upset her because you know, obviously seeing her daughter go through something like that, sheI could see she was upset. And I could see maybe she was thinking, is this really necessary? Is this something you have to do? But I think eventually when I got her to read more of the information she realised it was a sensible option. I do think it really did upset her quite a bit, so I tried not to talk to much to her about it.

I mean they get forgotten, the husbands, partners because they’re very focused around you, but they do so much. And my friends. It was, it’s amazing to see, some people are amazing some people surprise you in a bad way. People you expected would be there are not, and people you never dreamed would be there are there. There was someone turning up with dinner or whatever. It’s amazing. But I was very, very dependent on [partner’s name] for, certainly for the first month, six weeks. And then a friend of mine took [daughter’s name] away for a week, when I came out of hospital.

And so how much of an impact, it sounds like you and your husband are really close?

Hm.

Has it had much of an impact on your relationship?

No, not really. No, it hasn’t, we’ve always been very close, and we discuss everything. I suppose the decision to have it, to have the tissue, the DIEP which is the tissue from my stomach was a joint decision. He has a thing about implants which is fine. I suppose it’s a decision that we needed to make together. I wasn’t I didn’t have strong I didn’t have strong feelings at the time, as to which to go for. But once you sit there and talk about it. He’s an engineer, so those sort of things matter to him. And I’m please I did the one I did because I don’t have to think about it. It would have been far easier and far less painful just to have implants. But, my boobs are my tummy [laughs]. And as [friend’s name] and I sometimes go out for dinner. We rub our boobs and say, Ooh I think I’m full now, [laughs].

The only thing I would talk about would be the importance of the support for your partner and recognising the amount of anger that’s around at God, at the system. I know a lot of people, who, Jewish or otherwise, will lose faith at times like this and they want to get angry at something. Sometimes in partnerships it ends up that the partner who gets angry is the one who hasn’t got the disease and they get angry at the one who has. They start grieving for their loss before their partner is dead. You have to really work at the relationship staying both open and connected because my experience is you have moments where you get very close, very teary and very sad, and then there are these other periods where you almost become too distant from each other because it’s almost too painful to be close. I just think it needs a lot of work and that the partner of the person with cancer often feels in the Jewish sense a bit like chopped liver. it’s like Everybody is asking about the person with cancer. What about me? I’m going through something terrible here. I’m losing my wife They need a lot of support in a different way and to be acknowledged when these things are going on.

[Surgeon] always made sure to ask [husband] about how he was, and how was he coping with stuff. The Rabbis that I mentioned earlier also all spent time, (not as much time as they do with me) talking to [husband] to see how he’s doing. He’s not Jewish, but he’s certainly part of our community in a big way, and part of my life, and so therefore they support him. That’s one thing that I think I didn’t talk about that’s quite important.

Why do you think that’s related to your illness the fact that you hadn’t [had a relationship], up until that point?

I thought it was. But then I talked to my doctor in New York, and she said, No, not at all Because people with dysautonomia have had relationships with people who don’t have dysautonomia and they’ve had kids with them and they’ve led a normal life, a normal sexual life. And yes, so you think if they can have some fun and enjoy life and then you see your friends from college married, kids, my brother’s married, got married January last year, and you see how happy he is and you think you want some of that. And that’s what I want eventually. Hopefully I will. I’m not that old. I’m only 38. I think I’ve still got the faculties. And so, yes, and out of all our college friends [name] and I are the only ones that are not with anyone, soBut I’ve got a lot of female friends and they’re fantastic friends to have. And it’s so nice having them there, knowing they’re there, andI mean one of them said to me, You don’t want a girlfriend Sam. You can’t do the things you reallyyou’d have to stop doing the things that you want to do. And you have to make things with the other person, you have to deals with them Not, well you know what I mean, so you can’t. So, and she’s right. SoBut there’s some days you think, when you’re feeling blue you think I’m feeling blue, yes, I want a girlfriend. And other days you don’t think about it.

What about relationships? Have you had relationships?

No.

Would you like to?

Maybe in the future, but at the moment I’m happy. I don’t know. It never really interested me until recently, but I don’t know. I don’t want to like get married and then having them to take care of me or and I don’t feel comfortable to have children and I don’t want, I don’t wantit’s because of my back going through the pregnancy would be no good, so, I don’t know. I’m in two minds about getting married *and I don’t think I’d be a good mother.* (added by participant)

Did you say that you wouldn’t, you wouldn’t feel comfortable with a husband looking after you or you would?

I wouldn’t. I don’tmaybe I would but at the moment I don’t, I don’t want them to be burdened with looking after me. I know I might have a PA – a personal assistant but would that be right? Would someone be happy? I don’t know, to be married to someone that, you know, you know. I don’t know, I can’t tell.

In what ways do you think, you having this condition has affected your parents?

In a lot of ways. They don’t go out much on their own, because they’re worrying about me. They worry that they have to give me medicines a lot and treat me with the peg, and having, and seeing me unwell, if I’m unwell, and can’t be bothered taking, going through with me with operations. When I’m nervous, they’re nervous of course. it’s, they can’t go away on their own if they want to, because of me.

I do have a brother as well whos married. And I think his life was affected as well by it, because when I was younger I was a lot in hospitals with chest infections and things like that. So it wasn’t a very good thing for any one of us. He is helpful and caring as well. He’s qualified as a doctor, but he’s still specialising. [laughs] And going through the system.

But they are helpful. Sometimes I go and stay with them if my parents are invited out somewhere, and when my grandmother died a few years ago, and my dad went, my mum was already in Israel, because that’s where my grandma lived and my dad went out for the burial and he went on the Thursday and then came back on the Monday and I stayed with my brother then. So they are helpful.

I don’t like asking them a lot, but because again I don’t want them to feel that I’m a burden on anyone. But they are helpful. I am glad, I happy to have good brother like that. And my sister in laws excellent. When my mum’s away she sometimes helps with giving me a wash, because I can’t do it myself soor inviting us for meals, me and my dad. So they are good. And my nephew and nieces are adorable [laughs]. And they try to help giving me medicines when I’m there. Yes. They are adorable.

Does it make you feel so different having it?

No. Well yes. Yes, definitely. You feel a bit, I don’t know, not exactly robotic but you don’t feel like a normal being. There was, I mean, the added misfortune in having this, because it was such major surgery, I mean, the surgeon didn’t warn me that there was a 20% chance of becoming impotent. Well I reckon there was a 100% chance to be honest. Because I have been and they give me tablets, but not terribly succbut apart from anything else there’s the feeling that you don’t feel very fresh and very clean. You’re stuck with this thing. it’s there. And because of the Crohn’s Disease it’s, you know, you go to bed, and before you go to bed, you have to go to the toilet. During the night you wake up and you have to go to the toilet. First thing in the morning you wake up, you have to go to the toilet. it’s not really conducive to the sorts of things you might normally have done. You know. So very, very tough on my wife, and very unpleasant for me [laughs]. But well, I’m just saying the hospital didn’t do terribly well.

In what sort of ways?

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

And it hasn’t been a problem in relationships. If anything, I suppose in a way, it’s been a, you know, if a girl really likes you at the end of the day, she’s, love supersedes all, you know, if she likes you, it doesn’t matter that you’ve got this tube, and if anything, on the whole, I tend to get a lot of respect for having it, and not moaning about it. So it hasn’t really, it hasn’t really been a problem. It worries me sometimes, about new, about forging new relationships. That if a girl hasn’t, doesn’t know what I do in my stand up, or hasn’t seen any of my stuff online that talks about it, that I’m going at some point have to tell this lovely girl, oh by the way, I’ve got this tube in my chest.

But if anybody reacted badly to it, they obviously weren’t the right person for me, you know, and they weren’t very cool. And in actual fact my last, not my last relationship, but the previous relationship to that, the first time I was with my partner, and I took my top off, she didn’t, she knew I was a stand up, but she hadn’t really explored what I did at that stage. We met the year I was doing I think it was the year I was doing a solo show about my health. And we were in bed, I took my top off, and she went, Oh my oh what’s that? And I went, Tube in me chest for when I have some fluid blah blah blah. And she was cool.

Has it really constrained your life then over the years would you say?

It has really, because to be honest with you, I mean my marriage split up, not because of that, but it didn’t help. It didn’t help because if we wanted to go away on holidays I had to take all this medication with me, and I mean I was only in my thirties at the time, and I mean I wanted to go to Israel a few times. But dragging all this medication, I mean, it’s crazy. And my husband was a golfer. He was actually a professional at one stage, and it was too restricting to be quite honest. But, I don’t know.

It probably did, it probably did make a difference to my life really. But more so in the, not now, but years ago. But even then I suppose now, I split up six years ago with him. Even to meet somebody else, how do you explain to somebody? Now okay I’ve have met somebody, but he knows what it’s like because his ex-wife was, well not the same, but something similar, I think she had. Anyway it doesn’t matter. But it’s kind of awkward you go out for a meal and it’s oh sorry I can’t go to an Italian restaurant. Or I can’t go to such and such a place. Or when we went to Spain on holidays last year together, and it’s hard to say to him, Well I can’t go there to eat, because there’s nothing I can. Even last Saturday night we were going out with friends, and they said to us, Where do you want to go? They chose, my friends chose this restaurant and I said to them, Look do you mind if I look at the menu before we go. So I went online and I looked at the menu, and I rang them back and I said, Listen can you change and go somewhere else? I said, it was all everything was tomato based, or, and I said, Look, there’s nothing there I can eat. So I mean even things like Italian, Italian is out of the question mostly and a lot of Chinese base their sauces on tomatoes now. So I just stay clear of it. So it tells it doesn’t help. People get browned off. I can’t this eat this, I can’t eat that [small laugh]. We go for a drink. Oh I don’t drink. Why don’t you drink? They don’t believe you half the time. They probably think it’s all, they think it’s all made up but

When you talk about it, you are talking about mutations, do you feel very different in and of yourself knowing you are carrying this gene?

I do feel I’m not the same person I was before I)knew. I don’t know what makes me feel different, but I just feel, I just don’t feel, not carefree. I feel like it dominates my life, even quietly in the background it is always there, even if I don’t talk about it or think about it or I don’t think I am thinking about it, it’s there. And, I do feel different than I did before I knew. Probably because I have the worry of will my children have this? How do I tell them? When do I tell them? What do I tell them?

You know, they’ve seen me go through a mastectomy and they’ve asked me’ why did I go to hospital and what it was for. But with a 6 year old, a four year old and a two year old, you can only say so much. You don’t really, you can’t go into any great detail because they’ve seen one grandparent die of cancer, so I don’t want to mention the word cancer, because they think that’s what makes you die. So it’s quite, you know, it’s always there, so I do feel quite different.

You mentioned about worrying about your children in the future, about passing the gene on to them. Have you been given any advice about how you can deal with that?

Nothing. Nothing whatsoever. I had a 50/50 chance of getting it. I was told if I married, which I have, a non Jewish person that meant they had a lower chance, because obviously if I married another Ashkenazi Jew then they may also be a carrier. So, that made me feel a little better. I’ve been given no information whatsoever. I know they can be tested at 18. I was discussing it last night with my husband, because having been on my conference call with these other ladies, they were all saying how guilty they felt, we were all saying how guilty we felt that we may have passed it on. And that they can only be tested at 18 which is a very difficult age to tell them. I mean if they’re doing A Levels or whatever, and then you say to them on top of that, Oh by the way, you could have this horrible genetic mutation. Let’s go and get a blood test You know, it’s a very difficult time for them.

Dr Koch’ But of course, what it also did, when the two girls went away we didn’t know, our son was what? Four, about four. What we didn’t appreciate at that time was the effect it had on him, the sibling. And you know, it’s still to this day not understood how siblings get affected. Only because I gave a talk in front of the Royal, the Royal College of Physicians at Regents, Regents Square, Regents Park whatever it was, I raised the issue. It was raised and there was no, no knowledge of this. No, no writing in any journals at all.

And what happened was, and we didn’t know this until my son was about 18 years of age. 18 was it, 18, 19? Something like that. When he was at university 18, 19, when he was four, he saw or just before he saw, he saw one baby disappear, then he saw another baby disappear and he never realisedand of course we cosseted him even more so now, I mean, you know, we gave him more love than probably it’s possible to think about. Because he was still there. And this had an adverse effect on him, not the effect that we thought it was having. Because he, in his mind, thought well when when’s my turn, when am I going and never coming back. A thought that we never actually gave any credence to, never thought about it. And it was only when we realised, when he came home here, and he was sleeping here when he was in his late teens, his very late teens, and he wasn’t sleeping. And we realyou know, we started to probe into this and he wouldn’t sleep, he wouldn’t go to sleep. He was frightened if he slept he wouldn’t come back. He would disappear or so on. And it took a long time to get thatI’m not even sure if it’s totally gone today, but at least it’s out in the open which is psychologically a much better position.

So the siblings have to be treated very, very carefully. If you’re bathed in sorrow and all the rest of it, yes you are. You’ve got to give some thought, especially young ones, when their minds and their brains are being developed at that stage. Very, very dangerous for them.

Mrs Koch’ He also said he remembers me crying. I said but I didn’t cry until you went to schoo. You cried before I went to schoo, you know, taking him to school. Because there was a five year period when I lost the two children, my brother died, he was 38, I was very fond of him and my mother died. And in that five years it hit me and the two children. And you get over it. We’ve got two lovely boys now.