I faced the prospect of chemotherapy not with trepidation because it was my only choice, it was lovely. I have a friend who has prostate cancer and hes looking at all the choices he has and it’s very, very difficult for him to make a decision. With me there was no decision, it was either have the chemo or die. It was as simple as that so it was a very easy decision.

I had heard a lot of, you know, negative things about chemo, people who have had bad experiences. My own father had had a session of chemo for lung cancer and he had told me that if they offered him any more he would refuse it because he had such a bad experience. I’ve heard the same from other people.

It also involved of course intravenous injections which is, is not one of my favourite subjects, but I was in a very different circumstance, I felt that I was very, I could relax myself very, very much I didn’t know what was gonna happen but it was my only choice so I went with it and I had to make the best of it.

I had treatment with, standard treatment with 5-FU and a new drug called oxaliplatin which was successful at first in er bringing about a big regression of the tumour growth in the liver.

But as time wore on that became less effective and I moved on to another drug calledirinotecan which is 5-FU based and I was terribly sick on it and so I came off it very quickly.

Then I went back to oxaliplatin for a couple of months, three or four months, but it didn’t have the same sort of results in regression, in fact there was a slight progression of the size of the metastases in the liver.

When that became apparent I went on to another drug called capecitabine and I was on that for six weeks until recently but the side effects were considerable, for me at least, in terms of the pain that I put up with. And also, my consultant at the beginning of the capecitabine treatment did an ultrascan and measuring it against nine weeks of treatment the tumours have grown so, because of the side effects and the, and the lack of any regression we decided to come off that.

And I’m now, as they say, in between drugs.

He did say that there was, he would be able to send me down to [town] to see if they could offer me a chemotherapy that he couldn’t give me at this hospital because of funding and from that point on I just thought, why should I go down to [town] when I live up here?

So I had a big fight on my hands, I had to fight for treatment, because he said it wasn’t cost effective and they didn’t know the benefits of this treatment.

And for two months I was fighting and in the end I won. They did say they would pay for the treatment and…

Pay for it to be given to you at your local hospital?

…to be given to me at my local hospital, yeah. Which I think everyones entitled to at the end of the day.

I mean a lot of people think just because they pay their National Insurance year in, year out, they’re quite entitled to everything on their National Health Service and they’re not, they don’t realise it I don’t think, you know.

So, I just thought you know, “why can’t I have it at my local hospital?” so you know, I had a fight on my hands and luckily I did, because at the time he said without treatment I only had three months to live, and that was in July of 99 and I’m still here now, obviously, talking to you lot.

I’m in hospital for one day, I come home in the evening attached to the infuser. On the third day I’m able to drive myself back to hospital to have the infuser removed. I have the injection on day one and take steroid tablets for three more days. These tend to make me a little bit hyper, lots of mental energy and a certain amount of physical energy. On day four the steroids wear off and I tend to slump into a, a pretty comatosed and weak state.

[This] debility tends to last on days four, five, six, seven, maybe into eight, but from day nine onwards my strength returns, my energy returns and I gradually build up again and get back, you know, towards my best ready for the next cycle of chemo. So it’s a very predictable pattern now and I can plan my life round it.

I can plan on the days when I’m not gonna be able to do things and I can plan on the days when I am. And planning on that basis, you know, our social life has returned to something like normal. We have dinner parties, we go to dinner parties, we go to the theatre, I’ve mentioned horse shows, I’ve even played a bit of tennis.

So, you can build your life, once you know how the treatment is going to affect you, you can build a life round that and feel very much that you’re living a normal life again which is, is great.

I never go to bed if I feel tired. I lay on the settee I mean I’ve known people who get undressed and go and have a sleep in bed, well that’s making yourself an invalid and I don’t like that.

As I say I try to sleep in the car so that I’m not wasting valuable living time.

But when I got to a point once that my mouth was so bad I used to liquidise mangos and bananas and lychees and melon because I found they really helped, they were, its funny you couldn’t taste strong things but I could taste a bit of melon.

And I’ve always made casseroles and things that, if I can’t swallow and chew too much I liquidise all the casserole so at least I’ve got all the nourishment because I do try to keep myself eating properly and keep myself strong and healthy in that way.

I mean I used to try and walk round the garden once, and then it was to walk around it twice and not to just sit down and feel sorry. I mean I used to feel so pleased when I eventually could do the ironing again and when I could do the cooking, and when I could walk round the supermarket and just do ordinary things.

I know it’s an effort and I don’t want to waste too much time, good living time just working but it’s still being normal and so in, in those ways you know, it helps.

If I tell you I have diarrhoea on occasions and I have vomiting on occasions but then I tell you I can have the two at the same time so you’re sitting on the bog and you’re taking a shit and you’re being sick at the same time and you’re tired because of all this sort of, these effects, and your feet hurt because they swell with the capecitabine and my hands got swollen and my back was hurting because of the referred pain from the liver.

They’re all minor things, in some respects, I mean I wouldn’t wish them on anybody, but vomiting and diarrhoea and stuff like that can be very debilitating.

And this winter has been very cruel to me I feel, I’m very cold, I shiver. I get towards 4 o’clock, 5 o’clock at the end of the day and my teeth are chattering and my, I’m shivering and all I really want to do is come home and get under the duvet.

So it’s hard. One has in this latter stage of the past three or four months it’s been much harder because of the side-effects and because of the progression of the disease.

So and then I went to a hospital in London to have specialist isolated limb perfusion chemotherapy.

How does that work?

Isolating limb perfusion chemotherapy works by creating an artificial blood supply which is isolated to just the tumour. So in the case of my leg the top of my leg was tourniqueted, so lots and lots of pressure on it and then an artificial wire was plumbed into a main artery that led into a tumour and likewise one; a main artery that came out of the tumour was fed out, so it was kind of like this loop going around into the tumour. So then they could put a high dosages of different drugs directly into the tumour, and these are drugs that they wouldn’t be able to put in your whole body obviously. So the idea was these drugs are more toxic and hopefully have more effect on the tumour. In my case the scans around three months later showed the tumour had grew a little bit, so it might have had an effect of slowing down but the effect wasn’t huge, but they did, it was worth it. And while they were in there doing the isolating limb perfusion chemotherapy in my leg they also removed the lymph nodes from my pelvis, the cancerous lymph nodes from my pelvis.

How did it feel when you were having this special chemotherapy just to your leg?

I was under a general anaesthetic.

Oh.

So it did, think of it more like an operation. Not like standard chemotherapy if that makes sense.

Yes.

It was just one kind of big blast. So yeah I was un, I was, operation for around six hours. And that’s what it was, even though it was chemotherapy it was an operation. They just gave me one big blast of this isolated chemo while I was under a general anaesthetic and off I went.

So how long were you an inpatient that time?

Again that was about five days, I was very quick in my recovery. I think it helps relatively young and healthy.

It did keep the cancer and that at bay for a good 13 months or so. It wasn’t getting any bigger, it wasn’t getting any worse but then it started to not be as effective, as effective as what it was in the beginning obviously. So he then, my oncologist said “I’ve got another one here called oxaliplatin, well try you with that one.” I had that as well, and the side effects from that is again, it affects the nerve endings in your fingers and your hands and your toes, so my hands are actually, it’s like major pins and needles all the time and quite numb.

So in the May he um, he had to stop using it otherwise I’d lose total use of my hands.

But luckily for me the cancer’s behaved itself and it hasn’t got any worse. In fact it’s got a little bit smaller.

Has it?

Yeah.

That’s great. So are you having chemo now?

No, no I’m having a break. Hell leave me until he thinks theres something going on or he thinks the cancer’s starting to grow or my tumour marker levels are starting to go up you know, the CA levels that mark the progress of the cancer and that.

If they start to rise he will then um decide what hes gonna do. If I’ve still got the numbness in my hands he won’t be able to use the oxaliplatin, hell have to think of something else. Hopefully hes got something else! I’m hoping hes got something else. Whether he has or not is, is a different thing.

Well I don’t have a lot of choice because if I don’t have it I’m not going to stay alive. I mean I’m now on irinotecan which I’ve had once before and nobody’s quite sure whether it’s going to be effective the second time around, I’ve only had one dose so far. But I’m just hoping and praying it is. My oncologist says he has got one or two other treatments that he knows, I’m not sure what they might be because I understand from what’s said there aren’t many people that have been on chemotherapy continuously for two years in any case.

But, this time I mean I was told that my bone marrow is beginning to change, theres been signs and perhaps I won’t be able to continue you know for too much longer. This is why I’m glad I’ve heard that theres now another drug that’s not actually chemotherapy, it can be in pill form but I believe you can have it infused as well which stops the blood supply from the tumour.

Do you know what that’s called?

No. I’ve seen it being given it’s bright yellow, but I don’t know the name. But again because it’s still on trial I don’t know, but I, I don’t mind if I have to pay for it or whatever if it’s gonna keep me alive a bit longer.

So were, were pushing ahead. Again the conversations have been very frank at some stage the cancer will stop responding to this chemotherapy.

When it does my consultant has, says he has some other options, I’m sure he does, they may not be as effective as this one but we will then have to try the other options.

When we run out of options then you know that could be the end of it but his objective in the meantime is to not only give me length of life but quality of life and that’s , that’s really what hes been achieving.