Before you had the operation the first time, I mean it’s obviously a significant operation, can you remember how you felt, and how your wife felt? It was quite a big decision to have that operation?

It wasn’t really a big decision. It’s a big decision to go under eye operation if you want to get rid of wearing glasses. In my mind that’s a big decision, because the pros are going without the glasses, but the I don’t know what the risk is at the moment, just, that when your condition is so bad and the prospect of success, there’s a real possibility of success, it’s a very simple decision. It was very little There was some concerns because it is a rare operation. And there were, I did, I didn’t say don’t investigate the risks, there was all sort of risks involved, but the decision to go with the operation was a very simple one. There was not a second of hesitation. So

I had a full hysterafter the initial prolapse repair I then had a full hysterectomy. They call it a pelvic clearance and they removed the omentum because it was in that as well, which is everyone has it, it’s like a thin layer of fat that covers certain organs to protect from tropical diseases and stuff, and they removed that as well. It doesn’t grow back. I thought I was going to come out really thin [laughs]. I was getting all excited. I also asked for a tummy tuck. But they, Said no I’m sorry but we’re cutting you the way, it would look a bit weird [laughs]. So I didn’t get that either [laughs]. But no I wasn’t thinner. It made no odds whatsoever [laughs]. He did say, don’t go anywhere where you could get a tropical disease because I haven’t got that to protect the organs now.

That’s gone. So, yes, and that was the surgery. And they’re very pleased with the surgery, he got He said there might be a few little tiny microscopic crescents left, because they can’t literally, you’d be there for hours and hours and hours trying to remove every cancer cell. But the second, the last two chemos should have killed those off, and they call it mopping up after surgery. Anything tiny that might be left, hopefully the last two chemos just zapped it. And so far, so good. So obviously it’s done a certain degree of zapping. But you know, time will tell. I’ve just got to keep being positive and carrying on with my life really.

So I had many tests and the pills they put me on in my late teens, worked very well and [Doctor] told me that I’d probably need an operation one day because all my Crohn’s, unlike a lot of people’s Crohn’s Disease which is located in the intestine, in which you’ve got yards and mile of. People with bad Crohn’s have it in all different places so it’s difficult to operate. In my case it was all located in my smaller bowel.

And he said, When you’re ready, you choose your time and come back for an operation So strangely enough I, the pills slowly waned over probably about an eight or nine year period. So they weren’t working any more. And they put me on steroids, which I avoided taking. I think I went to see him when I was 27 so we’re almost ten years later, on a Wednesday, saying I’m back to doubled up in pain.

I went to see [doctor] on the Wednesday. He phoned the surgeon while I was there and they organised it for the Monday. And that was quite something for the National Health, and all credit to our National Health. Because for all these visits. I had [doctor]’s private number and he said, Just come and see me So he would come and see me straight away. I’d been seeing him for nearly ten years already.

it’s a strange thing when you wake up post operation, which might have taken four or five hours. They cut out half my small bowel, to see tubes in your nose. I mean they’re cutting through the stomach, you just can’t move, but they swept you out of the bed in a chair, and I remember feeling, within a day of that operation I had pains everywhere else in my stomach. I couldn’t laugh. I couldn’t cough. Without being in pain. But I didn’t have the ache in my stomach which I’d had for ten years. That was an amazing, amazing feeling for me. I can remember it now. So I knew it had worked.

But, you know, maybe I’d let it get to the state by not sort of insisting on… the state I’ve sort of got to again, by not insisting on follow up. And, and also I suppose at the back of my mind, I thought, do I really want to have these tests they’re going to do. Years ago I think it would be a sigmoidoscopy and having had a barium enema and I thought no I can’t do all this again. So, yes, at times I have adopted a very head in the sand approach. I had the colonoscopy, it was in November and I’d seen the gastroenterologist before that and about two months before that. And he said, We just want to check how things are going, because I was very surprised that they hadn’t referred me for one, you know, within three months after my discharge from hospital following the operation, the second operation. And he said, Well we like to see, leave things to settle which made sense. So I said, you know, Do I really have to have it And he said, Well no, you don’t have to have it, but he said, I think it would be very sensible And so, you know, I went along with it, and I must admit it wasn’t as awful as I thought it was going to be.

But it was very useful having it done, because it showed up where they’d joined the bits and pieces of gut together, that there was some inflammation which was Crohn’s, so, and the fact now, that I am getting some discomfort, you know, I’m pleased that I went along, had it done, and now it’s being treated. So, whether things would have been any different had I gone along, you know, on other occasions when I’d been having discomfort and pain…but you know, as I said most of the time I felt I could control it by diet and by rest. Yes. So
Can you explain what a barium enema is? For people who might not know what it is…
Yes. A barium enema is a solution which they, put it crudely, they pump up your backside and it’s not the pleasantest of things, I must say, you feel as though you are going to burst and you feel it’s going to come out of your mouth, but, you know, it’s, they were able then to sort of look at what was going on. I mean these days they do the colonoscopies and which in a way if you want you are very much out of it. You are sedated. it’s not very pleasant the day or two before because they give you very powerful laxatives to sort of clean out the bowel. But the actual colonoscopy because you’ve had some sort of sedation you feel very relaxed.

And I remember the gastroenterologist who was doing it, he said to me, You can watch it on the screen And I said, No I don’t want to see it So he said, Oh up to you But, yes, when it was actually happening I watched it on the screen and he was able to point out, you know, I was able to ask him, Well what’s this, what’s that And I felt that, okay sure I was participating, but I actually felt I was also in control of the situation, that I was being treated as a person as well as a patient so it wasn’t the terrible experience I thought it was going to be. And then after the colonoscopy they put you in a recovery room where, because you’ve been sedated, you sort of drift off for an hour or so and then they bring you a cup of tea and, yes, I mean, it’s, it’s, for me it was much better than a barium enema, it really was.

Yes, because it certainly seems with people who get it younger, I believe the optimum age is 19 to 35, they don’t grow out of it. They’ve got it for life. And my relative who has it who is 50 this year has had it since he was 19 and has to have to colonoscopy every year because of the risk of cancer of the colon. So they don’t get rid of it. I think colonoscopy is the worst bit of it. it’s just awful.

In terms of the procedure, you mean?

Well the procedure and also the preparation for it is horrible.

Can you explain a bit about the preparation for it?

Well if you think people want to know. You are given laxatives if you have it at home, which I did, and the same thing happens in hospital. I’m glad I had it at home, because it’s convenient and you’re given enormous amount of laxatives so that you have to empty your bowel, absolutely, completely. So you go on going to the loo when you’ve got nothing expel. And by the time you’ve done that, well anybody who has had D & V, vomiting and diarrhoea will know just a bout of that is bad enough, but if you think of it four times over and you’ve got pains in your stomach anyway, you’re an absolute wreck by the time you go in because you do this the day before and then you go in the next day and have the procedure and you’re a wreck by the time you get there. Also you don’t eat, you mustn’t have anything solid for 24 hours before. And for twelve hours before I think you can only have liquid. So you’ve got nothing inside you to expel [laughs]. And everyone I’ve spoken to you since about the, they all say, Oh it’s the preparation that’s the worst because they put you out for the procedure.

Good. Anything else about the colostomy?

it’s – as a piece of medical equipment it’s extraordinarily unpredictable. it’s, you know, what you have is, you know, this bag, this has to stick over the stoma and, in my innocence when I first had it, I thought oh that’s quite good. And I had so many accidents, which was very embarrassing. And I learnt to deal with it pretty early on. But I had to sort things out for myself. And at first when I first had it, I thought that the bags I was being supplied with were the only ones available, because they were supplied by the nurse. And I later discovered that certain suppliers supply the Stoma Departments with their bags and they hope they’re the ones you’ll be using forever and ever amen. But these ones that I was using in the first instance were so bad, and I was having so many accidents that I eventually found out that I could experiment and try other things. And I ended up with this particular bag that happens to be an American one. it’s very old fashioned, it’s, you know, very cumbersome, but it actually works quite well. Then the company moved their [laugh] their equipment and manufacturing to the Dominican Republic. Since when they’ve kind of deteriorated and they’ve not been as good. So I’ve had to come up with new ideas for dealing with it. You know, on my own.

Is it the fit that’s the problem or is it the actual quality of the bag?

it’s a bit of both really. I mean the fit is, very difficult, because the stoma where it protrudes through the skin changes in size. it’s never quite the same size. So, you know, if you’ve got a particular cut and it grows, you are going to oh oh, so you have to cut it yourself to fit. And then you find that actually, it, it goes over the stoma but it doesn’t fit properly on the other, at the end because where it comes out of your body is smaller than the stoma size itself. And that can cause leakages. But I’ve devised a system where I use these kind of small flanges that you stick on. The first one was okay, but now that’s started to produce leaks. So I’ve now got two on top of one another, but just slightly offset, so they cover all the area to ensure it doesn’t leak. And what’s the word I’m looking for? A bit of a to do to get round the business of making sure you’re secure.

And this is something you’d have to do the eight, ten times a day to make it secure?

Oh no, no, you only need to put it on once in the morning and if it’s a good secure fit, which it now is, we I have only discovered after a couple of days, you can leave it on for a couple of days. If it’s not a secure fit, you have to change every morning or every evening. I mean sometimes, I might need to change once or twice, or may be three times a day if it doesn’t work properly. I mean I have woken up at night and there’s the thing completely off my body, with awful consequences. I won’t describe it. it’s horrible [laughs].

Is it a constant concern even when you’ve got it fitted and you constantly aware of the fact that something might go on?

Yes, I’m a bit more confident now that I’ve worked out what I have to do to solve my problem.

And then it kind of it all came to a head in about ’99/2000. I’d had a tremendous amount of surgery over the years, always had the same scar, my surgeon’s a brilliant surgeon. He always cut the same scar, so I’m not massively scarred. And I was in a very bad way. I was, after more surgery I was in a very bad way. I was vomiting pretty much whenever I ate. And I was just in a really bad way. And I was given a temporary, when I was given jejunostomy which is actually most worse than a colostomy or an ileostomy, because it’s high output so the volume of fluid that comes out is litres.

And that was a really, really tough time, because I’d always said I didn’t want a bag. I’d always said that would be the thing that would finish me off. I would never have one. I would never accept it. And of course you adapt and it wasn’t as bad as I thought apart from the fact that I couldn’t wear jeans anymore, I had to wear springy trousers, and so I was more bothered by the fashion [laugh] problem.

And you had the jeju

Jejunoscopy. It’s, I mean it was down here, but it’s high output, it’s basically coming straight out from the ileum, the top part of the ileum. So literally you’d eat something and within twenty minutes to half an hour that something was coming out to the bag. So I was really bad. I mean it did my head in, completely did my head in.

How long did you have that bag for?

I think because my memory’s hazy on stuff now, I think I must have had it, I must have had it six months to a year, I think. Six months to a year I reckon. Something like that. You know, I mean they did want to leave it there, and it was me saying no, no, just give me another go, and you know.

Why was that sort of something they didn’t consider before then if it’s such.?

Because it’s an, it’s an extreme thing to do. Like I mean, basically this line goes to the main, it goes up over the clavicle or under the clavicle, I’m not sure, up here, and you can see the line there, and it goes into your main artery to your heart. So what it means is it’s like sending it into the best distribution centre in the world, which the nutrition very quickly hits my heart and then gets pumped right round the whole body. It’s brilliant. But it wasn’t something they wouldn’t have considered before then because it’s expensive, it’s extreme, they’ll do them temporarily for people sometimes if they do bowel rest and stuff. I mean I had, when I had the naso gastric tube, I didn’t have to have it, I could have drank Fortisip and Ensure which are like high protein drinks and Build Up. But both Fortisip and Ensure made me heave, made me want to vomit.

I chose instead to go through the rigmarole of sticking a tube up my nose, because that was easier than me drinking this horrible stuff, that really was, because I just couldn’t stand up the build up stuff at all. So that’s what they used to do for sort of bowel rest.

And there’s probably, there’s a fair amount of people in the UK who have these lines now. But it’s a very expensive, like, I cost more to keep alive than I earn, you know, which is a weird one. I’m looking forward to the day when I earn more than I cost to keep alive, very much so. But I think a bag of my nutritional feed is about, the price has gone down, it used to be worth about £150 a bag, now it’s about £120 a bag.

I have eight of those every two weeks. So there’s a thousand pounds there in just

Anyway I had the operation. He preferred to do a biopsy and then, and then a week later, do the lumpectomy and then I met the oncologist. That was the first time I met him. It was after the operation and he said to me, It was Stage II But he said, Good news But he said, You know, won’t need chemo, just radiotherapy And I said to him, Well that might be your opinion, but you do know that I’m sending all my results to Canada, where my sister and brother-law are both doctors I said, So, you know, I’d be, they’re interested, and they want to know, then I’ll see what happens

Anyway so I got my macroscopic and microscopic results from [hospital] and sent them off to Canada. And what came back straight away was, effectively like a second consultationlike a second opinion, because the hospital where my brother-law works, he’s a cardiologist, the associate professor of oncology in Toronto was there, and she looked at all my results, and said that basically had I been a patient there what would happen is, that I would have chemo and I’d have combination therapy. I’d need six sessions.

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 than 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

I tried many different drugs and I have been on drugs for twenty years, and with very little effect if any, well positive effect, but some quite disturbing side effects, which were primarily drowsiness, being rather weak, but feeling uncomfortable like that for many years, is quite disturbing.

And at that point, at the age of 30 or so, we started to hear rumours about this new operation for treating torsion dystonia in a patient which was a brain operation. It’s called DBS deep brain stimulation and it’s a rather dramatic operation but the results appeared to be quite good. So I started making further enquiries and once again found ourselves flying to England to see [Dr A] at [hospital B], who gave me the first assessment, and said it would appear to be a good classic case for the operation and I would be a good candidate for the operation. The same was said by, by [Professor B] who was my specialist in Israel. He said, Your gait is sufficiently bad. And it has a sufficiently bad effect on your everyday life, for it to justify such a drastic action. And so we met this Professor here in, in the UK and he said it sounds like a good idea, and something that could potentially give me good results. It could also significantly improve my quality of life.

So a year later [L] and I packed our stuff and moved to the UK, and in December 2004 I was in the operation room in [Hospital C] under the hands of [Professor C], who is a renowned neurosurgeon.

I expected to be, I wouldn’t say cured, but I expected to see a great relief in the condition. I woke up the following day. It’s a rather, from the patient point of view, it’s a rather simple procedure. It was done under full anaesthetic. It wasn’t very painful. There’s no bone cutting, there’s drilling through the skull, into a certain part of the brain, inserting an electrode into an area called the GPI Globus Pallidus Interna and inserting a pacemaker under the skin here in the chest and then a cable connecting the two and the theory is, by sending this constant stimulation to this part of the brain, it somehow, I’m not sure exactly how but it does, somehow, relaxes the storm, the electric storm in that part of the brain, and the condition is significantly or the volume of the condition, the volume of the noise, is significantly reduced.

So that operation was done in December 2004, and the anticipation was that in a few mon a few weeks, six weeks later I would see the benefit. Weeks have gone by and there was no benefit whatsoever. On the contrary, there was quite significant deterioration. If I could hardly walk prior to the operation, making the, the smallest crossing the room was practically impossible. I was on the verge of, actually in some ways, I wished I was in a wheelchair, because then, if you’re in a wheelchair you can actually move. You can start putting the – those who can walk, and those who are in the wheelchair – it was being neither here nor there, because I couldn’t really walk, but I couldn’t, I couldn’t bring myself to sit in a wheelchair. So it was a horrible place to be. I’m not suggesting sitting in a wheelchair is good in any shape or form, but at least you are not all over the place and trying to get from A to B.

You get this peace of mind. That’s the way I imagined it. It’s completely, obviously, I always remember that being actually able to get up and walk is a great benefit compared with others. But in my mind, I was in a terrible place not being able to walk and not being able to get from A to B otherwise. And my condition continued to deteriorate as time went by, and I went to see the neurologist, Dr B, and kept on being told that it takes a while befor

So I went up to [street name] to see her. Trouble is she won’t let me pay. So, you know, I can’t keep doing that. And she said, Well you’ve got a lot of blood behind the eye. Anyway to cut a long story short, it’s what they call an occlusion. And something behind the eye breaks and there’s no way you can do anything about it.

She called in a consultant a friend of hers to see me as well. He was a specialist in glaucoma and they were very helpful. But I felt very embarrassed about my consultant here, you see. At any rate the blood cleared. I had to take a lot of Acetazolamide tablet you take by mouth. It makes your fingers and toes like pins and needles and that sort of thing, so you have to be very careful not to have too much of it. But he’d given it to me before, the consultant, when the pressure was a bit high, but he’d only give me three and say, Come and see me in a week. And always it had gone down. But anyway this time I took it for quite a long time.

Anyway eventually I saw the private consultant again, because I was due, I used to make an appointment months in ahead, and I told him what had happened. But he said again dramatically, My God. You’ve had an occlusion [laughs]. He said, There’s nothing you can do. But I can get about with it I can’t read a thing, I can’t read the biggest letter on the chart.

But I can, fortunately read with the other eye. It’s a bit of a strain sometimes, but you know, it’s quite possible, and if you look round my house, you’ll find a magnifying glass here, one in the kitchen, one in the bedroom [laughs].

Any rate, I decided I really ought to change. I had nothing against him, but I mean he was about 75 by that time, and I was about 81. So I thought it was time we parted. It was very amicable and he sent me to the consultant at [hospital], and he said to me, He’ll be all right. I trained him.

So I went to [consultant] and he looked after me. I don’t see him very, because you see all different people, but I would see him if there was anything they didn’t know what to do about. On this occasion the consultant said, I’m going to operate on that eye. It’s not my good eye. The pressure didn’t go down, you see, everything went up when I had this occlusion and they couldn’t get it down again like it used to be.

So he said I’ll have to operate on that eye. And I said do you mean a trabeculectomy. Oh no, he said, we do a modern thing now with a little tube, it’s called an Ahmed tube. We put it in.

I experimented about ten years ago, trying to address the repeated going to the loo all the time, and ended up using a thing called a Kosmed device which is a Russian black box, that works on the same principle as acupuncture and that hopefully would teach your body to mend itself. it’s a very powerful science, but not well understood, and the consequence of it for me, was that it gave me an anal abscess, and that actually made me go and see a wise doctor, at the [hospital], when trying to deal with the abscess prescribed Questran Light. I had been given a Questran product when I was first operated on, but it didn’t seem to work at that stage.

But taking this Questran light fifteen years later had had a miraculous effect on me. It is a solution which soaks up all the bowel salts and means that I go to the toilet once or perhaps twice a day like a normal person. I am as regular as any normal person would be, and have been for the last ten years. So I’m in the very unusual position of having had very ordinary health for fifteen years, but completely normal health for the past ten years, which is very unusual and makes you tremendously appreciative of having good health. Certainly on the odd occasions when I do get a bad week from Crohn’s which will happen if I’m totally stressed out, or it can happen from time to time. I simply can’t believe I lived the way I had to live, but you do.

Can you, you said when you were, after you’d had the operation, did that effectively get rid of the Crohn’s and you were just

Yes, they cut out…I mean the way I understand it, I’ve never, ever in all my checkups post that major operation, I don’t believe I ever had active Crohn’s. I’ve had the odd flare up when I can’t make a stool, and it feels like I am a Crohnsy person. I don’t believe, when they test your blood, I don’t think I’ve ever been really sick since then. However, your intestines, they get shattered; there’s too many holes in them. There’s too many ulcers in them. they’re just splintered as it were.

Ironically using alternative medicine threw me back onto traditional medicine where of course there was a product waiting for me that was ideal and suited me down to the ground and you know, it led to me, a complete recovery, and I don’t know anybody, I suppose somebody who has had cancer, might have had the same feelings, but you know, I would generally most mornings I still feel grateful every morning, because for fifteen years, I would go to the toilet and it would be a very unpleasant affair. So, you know, I’m still am very grateful that I have got this product because it changed my life.

And I initially I went to the hospital to have this drug, because it has to be canulated, injected into a vein, but they taught me how to, they taught me how to self canulate. And then I was able to do it at home on my own leisure. And I did that for about, well two or three years. But the pain in my legs, particularly my shins didn’t really get any better, and sometimes, I would wake up, I would wake up, and I would wake everybody else up in the house screaming in pain. Literally screaming out.

And then all my veins collapsed and I couldn’t, I couldn’t do cannulation, and the organisation who ran, who delivered the drugs had nurses who would come and do the, do the injection if you couldn’t do it. So I phoned up and I said, Can I have the nurse please. I’m struggling. And the nurse came down. I’ll never forget this ever. She, she tried ten times, five times in each arm to get this needle in so that the drug drip could go, and she couldn’t, she couldn’t do it. And she said to me, I’m not going to try anymore because it’s just going to cause you unnecessary pain and you know, I just don’t think I can do it. So I said, Well look, you know, it’s just one of those things don’t worry. And she said, Okay. And she went.

And then [name] my wife noticed she’d left her box of tissues, so she ran out to try and catch her, and this poor nurse was sitting in her car sobbing because she hadn’t been able to do it. But in the mean time they developed an oral drug. And so, again, only on a named patient basis. And this was very, very new. Just come into, what’s it, to use, and had only just been licensed.

So because of the because of the vein problem I got permission, or [hospital] got permission for me to be given it, and I had to take one a day for a week, then two a day, and then three was the top.

When I got it, I did one or two and then I took three for two days, and I collapsed into a diabetic coma and my blood count was 1.9 and it turned out that nobody knew that this drug, this new drug had a huge effect on sugar levels. And nobody knew that because I was the, I was the, as far as I know, I still am, but I was certainly the first person to have the combination of diabetes and Gaucher’s. So nobody knew that there would be an interaction with the insulin and the Miglustat the new drug.

And so I was merely taking three Miglustat and carrying on with the levels of insulin that I was taking and I was effectively, I was, I was overloading myself with sugar reducing drugs. So I came off the Miglustat for a while. And then I cut down on the insulin and I in fact cut down the insulin by 65%. And then I went back on the Miglustat and then I was fine. I was all right. Until I got a letter from [hospital] saying, Stop taking three Miglustat and reduce it to one immediately because we have results of some blood tests that we took last time which show that your kidneys are failing, and this is the result of the Miglustat. So you must no longer take three, you can only take one.

And so that was ongoing chemotherapy, after the initial chemotherapy. And then there was a gap of a few weeks, and then as planned, I had a stem cell replacement therapy in [Hospital], which is where I went in, I think, in late August 2007, and the first thing is the oh before that, you have to have the stem cells removed which is a process of where you go in and they take out, they take your blood your through out of one arm, and back through a machine and back through the other arm. And then, they store your stem cells.

And then a few weeks later I went into hospital and they give a massive injection of a chemotherapy which destroys all your cells, but then they put back your stem cells, and then that repairs your system. I was in hospital for just over three weeks I think, and that is a well known process for dealing with multiple myeloma; stem cell replacement therapy. And that again worked pretty well. Now the theory of that is it gives you relief from the effects of the myeloma for a period of years. Unfortunately there’s no cure known at the moment for myeloma, although there is a series of things, some of which I’ve mentioned and some I will mention shortly, which can stall it, and keep it away for a period of months or years, but there’s no actual cure. But at that time I was told it could keep me clear, in what they call remission for between two to four years. But it’s actually been about two and a half years, and it has now come back. But I’ll come back to that later in the story.

The key measurement of myeloma is the paraprotein. Now when I was diagnosed, it was – the number should be zero in a healthy person – when I was diagnosed it was 60. When I’d finished the VAD, and the initial treatment, it was down to about ten, and after the stem cell replacement therapy, it was down to about 2, and it stayed at just under two, for about two years, and it’s started to creep up now.

Can you describe to me the stem cell process or replacing. How did that feel to have that treatment done?

Oh how did feel physically or ?

How did it feel physically and emotionally?

Oh well emotionally, not an issue really. Physically, well the worst thing is having a Hickman line. When you’re having a continuous infusion of drugs they can either do it, by continually sticking things in your body, in and out, in and out, in and out every day. Or you can have a Hickman line applied which is stays on your body, which means they can just put drugs in and out, very easily. And it is very good. Hickman line works very well. The only difficulty is actually the, well it’s not a difficulty, the insertion of it is a bit of a procedure to have to go through. But it’s done under anaesthetic and it’s not too bad I suppose. It was a bit of a shock first time. Second time I was used to it, and when it happens again, when I have my next stem cell, I’ll be used to it.

Why was it a shock?

Well, because I didn’t really know. The first time when I was really in a very bad way, they didn’t explain to me what was going to happen. I know, I knew what a Hickman line was, but I didn’t really appreciate that I was going to have effectively an operation to install a tube into my chest. And they didn’t explain it well, and I went down to the theatre, and I was really rather shocked by what happened there. But after that it was okay. And having it was okay, although I did unfortunately – one thing I’ve left out – sometime during the whole procedure, I think towards the end of the first series of treatments, I got an infection in

There was a big concern that I was going to be in serious trouble, because the tumour had ruptured, the fluid from it came out as the aforementioned green discharge, which would have left cancerous cells to float all over the place. And they were concerned to try and preserve my fertility. I had lost my left ovary in the first surgery. It was surrounded by a sort of grapefruit sized tumour that I never felt. All the time I travelled I felt a bit of a fullness in my tummy, but I just thought it was from travelling or whatever, but I never had any sense of having had that disease. In order to try and preserve my fertility in my right ovary, they gave me a low dose of chemotherapy. I think it was Taxol.

For about thirteen months following the surgery I was okay and I was having regular exams, first monthly, then quarterly. But then I had one and I could feel I wasn’t okay. The bottom line was that I had a new tumour on my right ovary. We know now that the low dose of chemotherapy probably wouldn’t have worked anyway because my tumour, which was called a borderline ovarian cystadenoid carcinoma, doesn’t respond very well to chemo. So that’s when I had to have quite a radical hysterectomy. Almost anything I didn’t need to survive was taken out.

So I had that surgery. And at the end of the operation they did saline washes, so they told me, and found that there were no cancerous cells left anywhere. So they sewed me up, and the decision was not to give me any further therapy and just watch, and I went for 23 years, with no recurrence.

The gynaecological oncologist I saw at a local private hospital, after carrying out a few tests, felt my case was outside of his remit, and recommended that I saw a fellow named [surgeon] who to me is one of the finest surgeons that this country has to offer and a true gentleman and just one of best human beings that I’ve ever met. I remember going to see him and he did an internal exam and asked a lot of questions and said, Well if this is operable. . Before he could finish his sentence, I said, What do you mean if and he said, Well it may not be He confirmed that I had a very large tumour in my groin and said until he saw pictures, he didn’t know what the story was, but he felt that I was seriously compromised by it.

Anyway I went in for the surgery and it was successful insofar as they could debulk the tumour but they couldn’t remove it all. They couldn’t get a wide margin, which I guess most people will understand, but some people wouldn’t. When you remove a tumour you want a margin of healthy tissue around it, and when they take out the tumour, they ink it and then they see how close to the margins the disease is. The reason they put the ink on is because no matter how amorphous the material is they can always know where the edges were. And where last time they got quite a wide margin, on this particular surgery they didn’t and that wasn’t such good news.

So then the big decision was what do we do now, and what am I candidate for? And what we had established was that I wasn’t a candidate for any kind of radiation either proton or photon. One is more scattered and one is more focused. And where I was definitely not a candidate for the standard scattered type, the more focused one was a possibility but they don’t offer it in the UK other than for eye and brain cancer, but they do offer it in the US.

So my stuff was sent off to the boys at Harvard to see if I was a candidate but I’m not because the tumour is very deep and it’s located near my vena cava and my spine. So, there’s no way surgically to get a big margin and if they shot radiation at that area it would

I was immediately taken into [Hospital] and received treatment which is called VAD – I can’t remember exactly what those letters stand for – but it’s a chemotherapy treatment which worked pretty well. I was in hospital for about two weeks, more or less over Christmas 06, and recovered after that reasonably well.

Then in the follow up… there’s the VAD is the initial treatment, and then there’s a series of chemotherapy which you have at home, which is by… I can’t remember the technology of it, but you have a chemotherapy which is applied intravenously. You have a ball hanging around your neck, and it gradually it goes into your system. And I had that about four times, I think, during spring 07.