Dr Koch’ There was no counselling. Nobody knew anything about it. We then learnt, of course we then realised we were both carriers of the Tay Sachs gene. So, now armed with that at least we decided that we were unlucky in this particular event and the statistical lots for having a Tay Sachs child is one in four. Two in four would be a carrier and one in four would be totally free.

With that knowledge now, we thought, well we’ll take a chance. There was no counselling and there was no clinical diagnostic tools available. So we went in for a second child. Unfortunately that too turned out to be a Tay Sachs child, and we went through the same horrors and trauma. It really is, it’s a terrible thing to watch a child. Although it’s said that the child is not in pain, the child it must be in intense discomfort, it’s deaf, it’s blind, it can’t swallow, it can’t digest its food properly, it regurgitates. It goes blue in fits. There’s all sorts of things that happen, that are not indicative of this child being very comfortable. And it’s a terrible thing for a mother to watch something like that. And I’m going to say in front of my wife here, because I know she hasn’t got over it yet. Is that right dear?

Mrs Koch’ That’s quite right. Yes. Yes.

You know, I’ve made my, wealth as you’d like to put it and we’re giving some back to the, to the population and trying to avoid this horrible problem that we went through, because it’s, it’s, lasts your lifetime it doesn’t go away. It does. I know that. And I know my wife has still not one hundred per cent recovered from it. Neither am I. I buried myself in my work for a period of time. Tried to get through the situation and in effect I managed to do something as a result of it, but you know, it’s not easy, some people just never manage that.

I mean like I’ve said earlier, when I was growing up, up to I became 18, I sor I didn’t think I could do stuff on my own, and relied too much on my mum, and it got everyone else down and I, I the thing is, having this thing you also don’t know if you’ve hurt yourself like. I mean when I fall, I wouldn’t know if I’ve broken anything, because I don’t feel pain. That is part of it, you don’t feel pain so you wouldn’t know if, I suppose you actually would know if you did say break a leg, because that wouldn’t really hurt even someone like me, because I suffer from pain and ..

But I think the main hard thing for me has been my eyesight, especially in the last few years. I mean up till probably about five years ago, I could play pool and do things like that, but now I can’t I realise, my eyesight is not as good as it was, and I can’t seem to play much sport any more which is a big shame because I’m a big fan of sport and I used I used to play pool. I used to have a pool table when I was younger. I used to play pool and snooker and yes, but now I don’t seem to do much of that anymore. So that’s a bit of a shame. Any sort of sport, I do know I was going to the gym twice a week so [laughs]. So that’s, it’s pretty you try not to let the bad things get you down as much.

You try and do things to enjoy so stop you thinking about the horrible stuff, the things you don’t want to talk about and things you. I don’t want to, there’s things from my past that I don’t want to talk about that are a bit dark and may be, things I don’t like looking back, and we used to live in [place name] and, and, which is about five minutes away from here, and when I’m in a cab and I go down there, I close my eyes so I don’t have to see it, and it’s, it’s.

I think I started feeling more happy with my life when I went to college in [county]. Back in ‘89. And that is when, alright there was a lot of people there on site to help you if you had problems and teaching you things like mobility, and life skills and things like that, and, but you, once you’re done past the mobility routes you can do what you wanted to do with your friends. And because I think there was a lot of other people there who… There were other people who were blind and partially sighted. So we were all there to help each other, and that was the best thing about college is meeting my best friend, who I’m still friends with now so. I mean he is totally blind, so, we help each other out and

And so, yes, I mean I try and do as much, many things as other people do, but of course there are some drawbacks sort of things, I can’t do. So you, you, you put up, you have to put up with it. Those are the cards you’ve been dealt, so [laughs]. But things could be much worse so I don’t know what else to say about.

You said that having BRCA 2 is at the core of you, can you explain what you mean by that?

If you have, it’s definitely like if you have cancer I feel, and this is what I’m taking from other people, because obviously I haven’t had cancer. Often it’s something you can get rid of. Not always, but you know, you could have your breast removed, you can have surgery or you can have chemotherapy or radiotherapy and it will go, or maybe you’ll go into remission and it’s gone. But I feel like with having a BRCA mutation that is part of you, that is something that can’t be removed, that’s something that will be with you forever, and it’s the core of you, it’s something that will never go. So, I feel that’s in a way more frightening because you just don’t know what it’s going to do. You don’t how it’s going to behave or, it’s like an un-quantified part of you. So, I find that quite frightening.

Do you, or any of the people you are in contact with, not reframe it in terms of because of developments in technology you’ve now got advance warning perhaps?

Yes, I feel incredibly lucky that I know I’ve got it because when I first found out, and the genetic consultant said to me, You’re one of the lucky ones, because you know what your future could hold. You know what your mutation is He said, Everybody has a genetic mutation, but you know what yours is, so you’re lucky

So I feel incredibly lucky I know what it is, but it’s just frightening knowing what it is. I’m happy, you know, I’d rather know that this is what I’ve got, and this is what the future could hold, then I could have a mastectomy or have my ovaries removed so I can get rid of that, the possibility of suffering breast or ovarian cancer. Whereas there are people who have absolutely no idea what their future holds, and they’re powerless to do anything about it.
So I did feel that knowledge is power. So although it’s frightening, I’m very glad that I know.

Was it a big decision having your ovaries removed or was it

For me, that was the hardone of the hardest decisions I had to make. I mean realistically I didn’t have a choice. I did not have choice. It was, you had to have your ovaries out because you don’t want, you know, you don’t want to get ovarian cancer and then you don’t actually know if you’ve got it. it’s a silent cancer and you don’t recover quickthe recovery’s less great than with breast. In that respect it was a no brainer, but I struggled terribly with actually doing that. I negotiated in my head for so long, for such a long time, about how long I should, how long I’d got that I could, I knew I had to take them out eventually, but do I have another five years? Do I keep them for five years, four years, and enjoy my life, and that’s what I tried to do. I negotiated with myself and I was trying to get the best deal I could to keep my ovaries for as long as I could, because I didn’t want to go into the menopause for many reasons.

Ultimately again, I came to theI was a bit pressurised by family and certain things and I’ve had them taken out, not really wanting to, I cry about it all the time actually. Yes. That’s in a way that for me is almost harder than having, than my first mastectomy. Not my second mastectomy that I’m scared about as well, because that’s choice. Anything with choice is for me harder then being told, right you’ve got to have this done to save your life, okay, absolutely. But, but choosing because it might never be. I might never get ill again and it’s like well you’re doing this and it’s hard for me to make these choices which are going to affect my life in a big way when I’m well at the moment.

I’m just interested in why the ovaries were worst? Was it just the menopause or were you considering having other children or was it symbolic?

It wasn’t symbolic really. A little bit. For me, certainly not about having more children, I’m not really allowed to have children anyway having had breast cancer. It would put me too much at a risk. It wasn’t for the children. It was emotional. it’s an emotional thing. I said, I’m a very positive person, and I enjoy my life and I, you know, for me there’s no point in being miserable in your life, there’s no gain for that. For me everything’s about being joyful, and grabbing good times and living life to the full. That was me before I was ill and that’s me now. But I know that having your ovaries out, you could, one could be put in a place of depression. It affects your hormones so badly and there’s nothing I’m allowed to take. Now for me, being depressed is like the biggest, no, no I could… it’s just not an option for me. And I was fearful that I might become this negative miserable person and out of control with my emotions. I didn’t, I don’t want that for me. And that’s what I fought with. I fought with not wanting to be a depressed person, a moody, whatever it is that I thought we was going to be like, this was before and having had it done, well, I’m not this depressed person that can’t get out of bed, no.

That is not who I am but occasionally I’m finding myself in a situation where I’m miserable. And I don’t know why, and I’m attributing that to my ovaries wrongly or rightly I don’t know because it could be because of what I’ve been through in the last year. But it’s like a whoosh it comes over me and I can’t do anything about it. And that’s like hateful to m

Whenever you get the sense of someone looking at you, it immediately triggers a vicious cycle because the condition is stress related. The level of its manifestation is stress related. So at the end of the day, or if you’ve going through a stressful period, it’s much worse. And the fact that it’s much worse, makes it much more stressful. So going out was always a challenge. I wouldn’t say it’s been reduced to the minimum, but it was always a mental decision, of all right, I need to do it. Be as confident as you can. But there’s always this niggling voice at the back of your head, saying, you look funny.

It’s just, people are looking at you, and they’re saying, is he, is he alright? or is he, is there something odd about him? There was something odd, there was no two ways about it. There still is. But today, it’s such a relief compared to what it was. I was like… it’s incomparable so back then it was like affliction in my mind.

There was a horrible self image. I remember after the second successful operation, going to, at R’s first birthday we went to the, to the London Zoo. And I looked at the pictures and there was a picture of me carrying R on my shoulders, and instead, it was a still picture, it wasn’t a video. I looked at it, and thought for the first time in my life, this picture looks like the picture of a perfectly abled person. There was such amazing, it was like, I’d never seen a thing of myself, in previous pictures there was always something abnormal about my posture.

At our wedding for instance, I didn’t want a video camera, because capturing me on video was always unbelievably difficult to see. So I don’t get, very few homemade videos. There wasn’t an official video, photographer. And even in the stills camera, even in the stills picture you can still see that there was something abnormal about my posture. And I had tremendous pain and tremendous stress. Also stress.

So, yes, I suppose my health bothers me its a bit of an issue. And, and I could look after myself better. I have treated my body badly. Drink. Smoke. In the past I’ve partied and done drugs. And you know, I wouldn’t take back any of it. I’ve had a great life thus far, and I will continue to do so. But I could also show a bit more respect for my body than I do, I think.

But I think when you, you know, when you’ve confronted the possibility of death, and you’ve been as low as I have been, you care less I think. No. I don’t know. There’s part of me that feels I, you know, I always thought I was going to die at 26. And it didn’t happen. And I thought it was a realistic thought to have. I just didn’t die at 26 and I tried to take my own life in 2000. Fortunately I didn’t, but it was a full intention to take my life, that at the point it seemed logical and it seemed the right thing to do and I’m glad it wasn’t. And I saved myself pretty much. But I suppose I also treat my body a little bit with a lack of care because in a way I’ve already died. Like, and it sounds bizarre but I have discussed it before with other people and I do feel like I kind of already went a few years ago, so now I just feel I’m in for as much fun as possible before its all over.

Whereas actually I could look after myself and live to a grand old age of 110, but I also subscribe to you know, there’s a few comedians, Denis Leary said about smoking, you know, they say it takes ten years off your life, well then the ten worst years are the ten adult diaper wearing years, you can have them, I don’t want ‘em. So I suppose my attitudes a bit more like that. Good or bad.

I will always feel like it’s there. I suppose that’s why I still see the breast guys, and I’m sure at some point they’ll send me for a mammogram, and ultrasound, or an ultrasound just to keep me quiet, and get me out of there [laughs]. Just because, I just like to know there isn’t anything.

They’ve removed

They’ve removed my breasts, but they can’t guarantee removing every single cell.

Right.

And they just have to leave one rogue cell. So, there is always, it’s not a 100% certainty. So there’s always a very, very slim chance. So do I feel it’s hanging over me? No. But I am aware of it. It doesn’t cloud my every day life. I suppose I think about it every so often, oh I know I’ve got a hospital appointment coming up. And it will all come with that as a package if that makes sense.

But no, it doesn’t. it doesn’t cloud my decision at all. But I’ve got friend, I’ve got a very, very good girlfriend, who was diagnosed with breast cancer, and the BRCA gene, and did nothing about it. Literally went through chemo and said if she gets it again she’ll have mastectomy. Whereas for me, I found it very, very difficult to deal with that because it’s totally opposite of what I dealt with the problem, like I never had cancer, but there was no way she would entertain having a mastectomy. Even though she’d had it, and her risk was quite high.

Everyone’s different, it’s not something you can say is right for everyone. Some people want to do it, and are focused, some people need to know the positive side of it, as well as how hard it is to go through. But at the end of the day, you’ve got to do, what you’ve got to do, for yourself. Or for your family?

Do you feel like you’re quite tuned to your body and how you’re feeling? Or do you just lead your daily life, just make sure that you eat healthily?

Yes, I think I am, you know, as a result of having breast cancer, I think I am more aware of, of my body, you know what I mean, because I think it’s like sometimes you think, gosh, you know, I’m feeling absolutely fine, but in the meantime, maybe there’s something. So that, you know, that, and in a sense that’s, that’s what I feel really relating to the possibility of developing colon cancer is, you know, I could be feeling absolutely fine, and totally normal, but in the meantime, something could be going wrong inside.

But I mean I think you can get over neurotic, do you know what I mean? it’s like, I’m very happy now, that my check ups are just annually. And from that point of view after I’d seen the consultant I was okay about not having a colonoscopy, you know, not like going crazy, like nagging my doctor and everything, because in a way, you know, like he could say well if you have a check up, then you say oh well I don’t want to wait three years, because maybe we should have it every two years, and then no, no, no, definitely we should have it every year, and then you worry, and you know, you can end up wanting to have, you know, check ups all the time. I mean I think that’s, sort of if you’re reasonably, a person whose reasonably stable you sort of balance your life. You know, that there’s certain risks, you do what you can and just, you know, get on with life and hope it will be okay.

I don’t think about it in every day life, but I am, you know, I’m conscious of it. You have to be conscious of it, because otherwise it could cause problems. So I know that if I have to go for a procedure or something, I have to tell whichever consultant that I’m seeing that I have this problem.

It was about three or four years ago, I fell and broke my wrist, and when I went into have my x rays and cast put on, I had to tell them that I was a bleeder, and of course, they gave me a few more x rays and things like that, than normally a person would have, to check that there was no internal bleeding or anything. But it just so happens it was a, just a straight fracture. There wasn’t any particular problem. It was just a nuisance [laugh] but I didn’t have any bleeding problems from it. So But you, you have to be conscious of things like that, just to explain it, just in case, just to be on the safe side so.

Do you ever think about the fact that the condition is hereditary?

Sometimes, but not that often. I do ask myself why me? Why do I have this? I do think that it’s not a nice condition to have. But it’s what’s thrown on us and we have to deal with it, with our God’s help and with aid and medicines, we just have to get on with it and think positive. So I put that under my e-mail you probably saw. But sometimes it’s easier to preach that than to actually believe in it. But I try my best to cope.

And in answer to your question, I don’t think about it that much that it’s hereditary but I don’t blame my parents for it at all. Because it was given to us and we have to just make the best of it. I am very grateful to my parents for all that they do for me as well. I do appreciate it.

How do you feel about your new breasts?

Not bad, [laughs] I quite like them, they do the job, they look natural. I mean they don’t feel natural at all. I can’t squeeze through small spaces like I used to. You know, they, they poke back, but other than that they don’t bother me in the slightest. They obviously don’t look anything like your normal breasts because they have no nipples and a scar across them. But it really doesn’t bother me, I’ve got used to them, they are part of me now, so. As I said before my, my breasts never defined me as a person, I feel actually more confident with them, for some strange reason.

Why do you think that is?

I know this is really odd, I think it was a nipple thing. Now there are no nipples I don’t feel quite as, as I don’t know. I don’t know what it was. I don’t know. I just feel quite confident and less shy. Not that I ran round showing them to everyone before [laughs] but now, if anyone wants to see them, I’m quite happy to show because I just think there could be one person, you know, such a large circle of friends, there’s probably going to be one of your friends whose going to have breast cancer unfortunately. And if I can make their, their journey less stressful or less painful and show them, that actually you’re going to look like some kind of horrible freak or you know, scars are not horrendous or you know, you don’t have to be embarrassed to go swimming or any of these things. I can do that, then I will.

Is it still a big part of your life in terms of thinking about it?
It comes and it goes. With the first year after treatment was hard. It was on my mind every day. Now it isn’t on my mind every day and some days I even forget, you know, but this is the time of year when it comes back to me, because this is the time when I was going through all the investigations. And I got the official diagnosis on Valentine’s Day. So every year that’s a very strange day. We try to make it a positive day, you know, a day when I’m still here and as far as we know I’m free of cancer, so But yes. And also nine months after I finished my treatment, one of my very good friends was also diagnosed. So I have seen her go through it as well. But that was a positive thing for me, because I felt I could be there for her totally, whereas she and my other friends, had been absolutely fantastic, they couldn’t really understand, whereas I knew exactly what she was going through every step of the way. So And since then another friend, well she’s a friend of a friend. She’s a friend now, has also been through it. So you know, when you see other people going through it, it’s obviously it’s on your mind. You can’t forget about it.

I don’t think so. I mean there are probably questions that nobody could answer, you know, I’d love somebody to be able to say to me, Yes, we’ve got it all. You’ll be fine. it’s not going to come back I think that does bring me to something else which does annoy me. There’s a lot of ignorance out there and people think once you’ve been through all your treatment, that’s it, you’ve got the all clear, and why don’t you just get on with your life and forget about it. And I’ve even had that from a friend, not words to that extent, but she just doesn’t understand that there is a risk it could come back, and it’s a real risk, it’s not just similar to worry, and in the end you have to learn how to deal with that, and I do actually know somebody whose breast cancer is terminal, you know, she’s not a friend of mine, she’s a friend of a friend, and I know her to talk to, and I’ve seen her recently and she’s going through I think about her sixth course of chemo. But she’s been fighting that now for eleven years.

In a funny way it is very much a proof of, well I’m, also I’m interested in history so it does make you feel like you’re part of a strand of history and I did read somewhere that Tay Sachs probably was one person somewhere who had aberration or whatever it’s called in their genes and that, that is a very strange feeling, you know, there’s one person that’s passed it on, and it’s like, it’s always interesting that most Jews don’t have red hair and if Jews do have red hair they tend to come from Poland. So somewhere somebody, I don’t know quite why exactly, you can use your imagination, how it happened, but somehow red hair got into the and that’s yes, so historically, I think it does, I think it feel it’s part of my identity. Yes, I think it’s part of my identity that I’m a Tay Sachs carrier. Not even such a terribly negative one in a way. I think it’s, you know, it’s part of what’s been handed on to you on the you get a whole delivery on the plate when you’re born and that’s part of why and I think that’s the way other people should think about it as well. I don’t think people should feel because now we know about it, it doesn’t have to be, they used to say you’re not allowed to, Halachicaly you’re not allowed to marry across a grave I don’t know how because, you’re not allowed to marry somebody where you know that the children will be affected so severely that they won’t live a normal life.

So if you know, if the person knows they’re a Tay Sachs carrier they are not allowed Halachicaly to marry another Tay Sachs carrier and that’s called they’re not allowed to marry across a grave. So it’s, you know, we have a the positive side of it is, we try and make a positive out of it.

But apart from that the fact that it’s part of your identity and I assume you must think in the same way with them; if the system is in place that they and partners can be tested it’s just part and parcel of who they are?

Yes, yes, yes. I think part of being religious is that you think that things don’t happen by chance. So that in some way, when, whatever you’re given, whatever your circumstances are, you’re not allowed to say ‘oh well that’s not fair. That, that’s the way it is, and that’s what you were given and you’ll be helped. We also have the idea that you’re never given a problem too great for you to deal with. If you’re given a problem, you’re also given the, the, the tools to deal with it. So in other words if, if you’re faced with a tremendous, a tremendous difficulty then you’ll get the help somehow to get through it in some way or another. And people also think about that with illness as well. For the, you know, for, it seems very hard but if people who have a child who gets cancer or something then the reaction to that is not, you know, what did they do to deserve or, or whatever, or that must be for our sins or something, it’s somehow they are going to get the strength to deal with it and that gives you a tremendous ability to deal with things, because you do feel that you’re not abandoned when something like that happens, but that it’s somehow part of the plan however hard that is to internalise.

You know, I consider myself lucky. Most people I accept with conditions and pains. When you hear about other people and what’s happened to them, and justterrible accidents so the fact that I live with one or two inconveniencesI can’t play sport anymore. My God, I’m 57years old, how long am I going to be running marathons for? I know people run them at 80 or 90 and good luck to them. So, but I’ve still got the memories. I won a tennis tournament at the [House] which is like a country club we joined for the summer. And they were a good standard of players. Not that I was any good, but I was so fit at the time, and I got every ball back that they would hate playing me because I got everything back. And I’d lose the first set because all the good players were much better, but I would just win the second set because I’d run them round the court and lob them and they would be finished and shattered, and so I played somebody in the final. I had to play a semi final, my claim to fame this day, I’m sorry I’ve got to mention it Because we were running late, because the guy was away, I had to play a semi final. I think it was I think the Bank Holiday Monday and because the final was aimed at 5 oclock in the afternoon. So I had to play the semi final against a really good player who everyone expected to murder me at 8 oclock in the morning. Again I beat him in three sets over three and a half hours, because every point was a battle. So I finished that at 12 and had to be back at 5 oclock for the final. And the guy was just like me, a fitness fanatic. And they said it was the most boring tennis match in history. The rallies were like 50 strokes and that was a four and a half hour match which I just won.

Can you imagine playing eight hours of tennis? So I got that medal or a trophy and memory. And I enjoy big sporting occasions, hence the football. I applied to be a volunteer at the Olympic Games. I speak a few languages badly, and they’ll probably put me at Victoria Station in a yellow jacket sending everyone off to Strafford. I’ve been involved in Maccab sports, youth athletics, football refereeing, which I hated. I would love to be in South Africa at the moment. All these things are expensive. But I’ve been to world cups and European championships. I’ll be at the next one’s in Poland. And I expect to be at a lot of games there. I’ve got contact, they’ll get me tickets. So yes, yes, life’s good. Medically I could be better off, but I could be a lot worse. And I can cope with anything that my body throws at me. But I ain’t having another hip replacement. That was far worse than my Crohn’s, as bad as that was, it was a cure for me and I consider myself very, very lucky.

So next to it there was a little coffee bar restaurant, and I said to my friends, I think I’d persuaded about seventeen or eighteen people to come and I said, Oh you know, if you want to come before, it’ll be really nice to see you, I haven’t seen you for ages. And I’ll be sitting in the coffee bar. And one or two of my friends, I saw them as they walked in and then they looked, and they were looking for me, and of course it was like, my hair used to be very curly, this, because the doctor, when he said, You know, when you hair grows back it might be curly. And I said, Oh well, my hair is curly. Oh, he said, Then when your hair grows back. He said, It might be quite straight. And I said, Oh, when I was a teenager I used to pray for straight hair. You know, and I said, If you ironed it, it could break off, and if you straighten it I mean it was, you know, one of those things. So this was quite funny, so I had this sort of page boy look.