It does have one of the main side effects, I’m not sure if it’s a side effect or just an effect of the condition on my speech. There’s a fine balance between, the dystonia taking its toll on the speech and the effect of certain electrodes. Each electrode has four contacts in it, and you take actually take each one of those four contacts, and there are many tricks you can play with. And it depends on which contact you activate, it could potentially have an effect on the speech area of the brain. As we all know the brain’s not divided, it’s not clear cut which part does what. It’s all sort of interrelated, and so we know that by sending a very strong signal it would have a better effect on my speech. If you turn the screw too low it would allow the dystonia to come back so it’s a fine balance, it’s a really delicate job finding the right compromise between not having too much of an effect. This side effect of the operation and the dystonia, both take effect on, on my speech.

Within six weeks of that surgery I had to start chemotherapy, which was kind of scary, because even though I’d had it before I’d never had a full blown treatment and I knew I was going to lose my hair, which was a big issue for me. I had this huge mane of hair which was very thick and luxuriant. It was my trade mark, and it hurt, more than anything, to see all that go. And boy when it went, it went fast. I didn’t realise what it would be like. If I had known I would’ve shaved it all off before because I left this trail of hair everywhere for weeks. Within two weeks of getting that first injection it started to fall out and was pretty embarrassing. But it was a small price to pay for life.

The first wig I got was a synthetic one called Rachel – that was the model name. I had a niece named Rachael. When I had a good one made I named that one Sarah after Rachaels twin. Next I bought a short one for the summer, so that was called Mira after another niece. I think the key thing was having a sense of humour with whatever had been going on.

Did they explain why you went yellow from the was that because of the liver biopsy?

Yes. Yes. What happened was on, when you have chemo, you get your chemo pills and all the pills to go with it and then you get your antibiotic pills, because what happens is the chemotherapy kills all the antibodies. So, you leave yourself susceptible for various diseases. Well, after the first lot of antibiotics I went blotchy red, which meant those antibiotics didn’t agree with me. Then for the second session of chemo they changed the antibiotics and I was still going blotchy red. Eventually they found an antibiotic which as opposed to being in a pill form, was in a liquid form, which is what they only give to children, which is also extremely expensive which is really the end, the last antibiotic that they give an adult. Well it seemed to be working, but instead of sending me red and blotchy I went yellow. And that’s why.

So that’s what led to the liver biopsy?

Yes. it’s actually called atovaquone, the antibiotic

Was there any side effects that you found particularly difficult to cope with after the treatment you’ve had?

Well obviously the chemo was the worst. The first four courses of FEC they weren’t too bad. It was just the initial phase. I mean I would have the treatment in the afternoon and by the evening I’d been feeling quite sick, even with all the anti-sickness medication. And, I would usually be sick once or twice that evening. And then, that was the worst of it over really, and then the next few days you just feel a bit groggy, not yourself. And within a week you’d be feeling reasonably okay again. But that’s the treatment that also makes your hair fall out. So of course I had that to deal with as well. But that wasn’t too big an issue for me. I mean I knew it was going to happen. I didn’t try a cold cap. I didn’t want to go down that route and I had my wig already. And I was quite happy with my wig. In fact I had two in the end, so I could have a change.

And I had a friend come round on the day the hair was coming out in handfuls and I had already arranged with her that I wanted her to shave off the rest of my hair so I didn’t have hair coming off all over the place. And I put on a wig to open the door, and it was a very similar style to the style I had at the time. And she said, Where’s your hair falling out? I can’t see And she thought it was my own hair so that was actually quite positive. So I didn’t really worry about that side of it.

The second course of treatment, the Taxotere, was much harder. It was very misleading. You’d have the treatment on the Thursday, be feeling absolutely fine. Just a bit spaced out with the steroids until about the Saturday evening, and then you felt like you’d been hit by a truck basically. Just aches all over. Totally lifeless. I think I hallucinated at stages as well. It was pretty horrendous. But that was probably just for two or three days at the most. As I said that was the hardest stage.

Every week of treatment I would go down about ten points, but then on my week off, I’d go back up 30 points. So I was playing three steps forward, three steps back, not even two steps back, but three steps back which is depressing because while this new regime isn’t as demanding as the gemcitabine was, it’s still very debilitating and you never get back to your starting point. Most people know that you have chemo and you start at A and you don’t ever recover to A, you recover to A minus 10, and then you have chemo, and then you recover to A minus 20, so you keep going down. And it is harder, and harder to bounce back. it’s just mostly fatigue and numbness in my feet and hands and diarrhoea that are the main things that happened for me. But the diarrhoea isn’t constant, and the numbness doesn’t really stop me from doing what I need to do. it’s just slight in my hands, it’s much stronger in my feet. But I can still walk normally and stuff so that’s okay. But the fatigue really gets to me now.

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.

Anyway, my story continued and over time I got better and went back to work. I found the Feldenkrais method as a way of getting rid of the terrible backache that had developed as a result of my leg being so huge and my muscles being weird. That really helped me learn how to use my body in a healthy way, so I wasn’t getting backache all the time. I had a lot of lymphoedema treatment for my leg, which was fantastic and my leg became less elephantine. After a while I ended going to an intensive three week lymphoedema clinic called An Arm and a Leg, which no longer exists because they can’t get funding for it. There I lost a lot of extra fluid off my leg and learned how to manage the lymphoedema and keep it under control.

Lymphoedema is a terrible secondary effect of cancer that a lot of people don’t talk about and there are areas of this country that don’t have any kind of lymphoedema treatment centres or whatever on the NHS. it’s just so important, because if you don’t deal with it, it can become a very big problem and it’s something that is relatively cheap and easy to deal with, and yet because it’s not a priority, it doesn’t get a front line kind of treatment from the NHS. I have to wear compression garments every day – those lovely thick stockings that grannies often wear. That’s been my joy since 2000. Without them my leg would swell up and I can’t walk properly because I have vascular issues as well as lymphoedema because I don’t have the two main veins going into my leg. As they rebuilt the artery it’s like I have the M4 and M40 going into my leg, but not coming out, the veins are blocked going out. That’s not easy to manage. So suddenly I had a 90 year old’s leg on a 45 year old’s body. That’s challenging to the rest of me at times, so the lymphoedema is something I worked hard on to get as right as possible.

You know, I mean for me the side effects, it was actually very interesting. The two things that were actually the most problematic were gum disease and carpal tunnel. I got gum disease, because the chemo compromises your immune system. And my teeth had always been a weakness, but I’d not had any problem with gums before or gum disease. So that was a problem. And the other one was, and I got, like carpal tunnel, I got carpal tunnel effectively. I could hardly write sometimes. I had all these terrible pains in my hands. And I never said anything to anyone at the beginning, because I thought well I shall have to put up with this, but it didn’t actually go away after I’d finished chemo, it was still there. And so then again I didn’t… my GP just pooh poohed it. I mean I actually think that the weakest link in the whole Health Service here is the GP service. I know some people might have good GPs. But
Right okay. Anyway, so when I went to my GP, the reason I said, you know, could it be carpal tunnel was because a friend of mine, had told me, she’d had problems and she told me about the exercises she did and everything. And so then he just said, then he just like wrote it down on my card that was what I had. And I said, Well if, if, aren’t you going to do any tests or anything, because there is a test you can do No, no, no Can I do anything No

So I was, I mean it was pathetic. Anyway I actually chose to go to a little conference in Israel, really because then I’d gain a chance to see my cousin. And there I had what I consider a full medical examination. He made test of my reflexes, examined me, and he did everything, and he did, and he said, that there’s a specific test that you need. I can’t remember the exact name, but if you have that… and he said, You need to see a rheumatologist. And that will give you a hundred per cent certainty, but he said, I’m absolutely certainly sure that’s what you’ve got.

So then when I came back I went with this to my GP, and I said, All right He said, and because I’d kept up on my own accord the private health insurance I got referred, because he said there was quite a long waiting list. And when I saw the rheumatologist, now this was in 2001, already, he was very nice, and he said to me, Yes And he said, You have it in both hands Which I knew, but the one was much worse than the other. And he said, Even he said. It was a few months after the chemo had finished, so he said, I think that it’ll never improve enough in the right hand. You will need an operation. But they obviously would never do both at the same time, and we’ll see

So I had it done on the right hand, and I mean, the, the hand surgeon, you can see it’s brilliant, you can’t even hardly see the scar. But, and then this one. But I still do sometimes when I wake up have to do some little exercises. But it’s okay. But I mean, it was interesting for me. Those were my two most debilitating side effects.

Well again, I’m very lucky, because what happens is your arm, or whichever side you’ve had this swells up terribly, and a lot of people have tremendous pain with it. And can’t even use the arm, and from that point of view I am very lucky because I’ve no pain. I can use the arm, and as long as I do my exercises for it fairly regularly, I mean I can miss a day here and there, but you know, not more than two, it keeps the swelling down. Whereas a lot of people, you know, they have tremendous trouble with this.

And can you explain what the exercises are? How long do the exercises take you each day then?

Well normally they take me about quarter of hour, twenty minutes in the morning which always means I can never get away anywhere early. You know, and it can consist of rubbing your, not rubbing exactly stroking across away from the arm and across the breast and then eventually under the breast and then there are breathing exercises, you go [intake of breath] like that, and hold it for two, and then down and hold it for two. And you do that four times. And then for reasons I don’t entirely understand you have to rest for two minutes and not do anything, and as I said as long as I keep on doing this it keeps it down and in order.

So it’s nothing you can cure then?

No it’ll never cure and I don’t have to wear the gloves and sleeves in bed at night, but I do wear it all day. And people say, It must be terribly hot in the summer Well I suppose it is, but you get used to it.

Did they tell you what the side effects were?

Yes. They did tell you. But they did Now this is going back when I first was diagnosed and put on them, and I’ve been on them ever since. They told me that they can cause cancer. But, I just keep taking them. I don’t know I know that sounds terrible, but what can I do? I mean, I’ve no choice but to take them. I asked them at one stage to – I’m on three a day, and I asked them to lower it down at one stage, and they did, they lowered it to two. But, I, it wasn’t working, so I had to go onto the three.

So do you check things like that when you see the doctor?

Yes. Yes. I mean he changed me. I don’t know, oh yes, I know what it was, that was something else actually, he changed me from the, I was on Pentasa, he changed me because I was complaining, which it’s not as bad now, I must say, but he changed me from the Pentasa, to see Salazopyrin, because I was getting terrible pains in my fingers, and in my knees.

And it went when you changed?

It’s not, no, I still get it, but not as bad. My knees, my knees in particular, but they’re not as bad as it was. It was very bad. Last year, I mean, I got to the stage where I couldn’t walk up down stairs. It was really bad. And that’s when he said to me, Look, I’ll take you off these and see how it goes. Okay. Sometimes, you know, when I’ve having a bad bout, I would know straight away, that I can feel knees starting. But then I kind of hope maybe it’s from my legs, but… [laughs].

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