I resumed chemotherapy on the NHS. On the same three, four week cycles of day 1, day 15, day 8. And as before, missed two out of every three. At this moment, where are we? 26th August 2010 I’ve had three chemo doses, and I’ve missed two.

When you say you’ve missed them, is that because your blood count was

Because the blood was not up to it. So that’s where we are at the moment. The blood not, the blood seems to be a problem. I’m not, I don’t know what they could do about it, if anything. But I’m on so many tablets some of which are for blood. I don’t know what most of them are for.

But anyway, the blood was alright last, when did I? Tuesday, yes it was Tuesday wasn’t it when I went? It, that was fine. So here we are waiting for the next one and we’ll go on from there.

So if your blood’s alright you’re supposed to have your chemotherapy once a week for three weeks, and then a week’s break?

Yes, quite yes. Mm. Yeah.

Oh I haven’t mentioned have I? The first series of chemotherapies consisted of the intravenous drip plus tablets. I’m not now taking the tablets. I’m just having the drip. But should after three cycles, not be doing too well, the tablets will come back.

From there, we progressed a little bit slowly really, until about the beginning of May, when it was decided, yes, I should definitely go back on the same treatment that I had before but, unfortunately, when we started that, my white blood cell count went right down so after two goes at it they had to abandon that. And now I’m going to start next week on another treatment. it’s actually one that was used previous to the one that they tried before and we’ll have to wait and see what happens.

Is that a different sort of chemotherapy?

it’s a different type of chemotherapy on pills rather than on intravenous, yes.

So now you are going to start a different sort of chemotherapy. Did you say a tablet, capecitabine?

Yes, capecitabine.

In oral form?

Oral form, yes. So I’m taking that, starting Monday and we’ll see. Unfortunately, it’s not as effective as the gemcitabine. So I lose some of that ability of that too, but they can only shrink the tumour, or hold it back, as it were.

They can’t remove it as such.

Have the doctors explained why you can have this sort of chemotherapy but not the other one?

Yes, because with the gemcitabine my white blood count wouldn’t hold up. it’s right down. He said, it’s very dangerous because of infection. So we’ll try this one He was talking about doing radiation on the main part of the tumour but it has spread round some of the peritoneum.

And he said, That’s happened so there’s no point So we’ve got to go down this route.

So will they give you the tablets to bring home or do you have to take them at the hospital?

No, I picked them up today [laughs].

Ah, so you can start taking them at home.

Yes.

And is that once a day or twice a day?

I take four in the morning and four in the evening.

Once a week or every day?

Every day and that’s for two weeks. And then I have a week off and repeat the process for six months.

Ah, okay and we hope there aren’t any side effects or has he told you to expect any?

Yes, well, he doesn’t know. He’s hoping not. There are side effects to it, different side effects, but in terms of my cell count.

Good. That’s good.

Yes, they take some blood out of the picc line, so there’s no pain, no distress involved in that. And send the blood away for analysis to see if your body’s strong enough to take another lot of chemotherapy. Sometimes it is, sometimes it’s not. A couple of times they’ve said, You, your platelets are too low, you need to have a break. So they give you a break for a week. Then you go back and then the platelets are usually good enough to have another lot of chemotherapy.

And it’s unobtrusive, its, you wear the thing on your hip. I just wear it in my pocket. It’s a bottle; it’s got a tube which you wear under your clothing. It goes into your arm. It’s not, not uncomfortable at all.

And it’s gradually pumping all the time?

It’s pumping all the time, seven days, seven days a week, twenty four hours a day.

For seven days?

For seven days. But because it’s so gradual you don’t get that kick that you get, that awful feeling of, you don’t get the nausea, the nausea and the sickness and everything else. And fortunately you don’t, I haven’t had no hair loss. And they said I would. You know.

So what side effects have you had from this particular chemotherapy, nosebleeds?

Nosebleeds, yes. I think it was just because of the chemotherapy working on the veins to a certain extent, but I’ve only, I’ve been into hospital twice, most recently yesterday, the day before. So I’ve had two, two to three days in hospital twice during the whole process, where I can’t stop the nose from bleeding. And that’s uncomfortable having that done though. But as I say it’s its been worth it though because that this treatment, as I say I’ve had to take no painkillers or anything, all the time that I’ve had this. But the treatment comes to an end in next, well next week. So, I’ve asked what happens next.

The last cycle was cancelled. I vomited, just before I was due to have treatment, and in my vomit there was blood. And again they stopped the last cycle there. So I think I had four out of the six.

And you were not working during this time?

No. I didn’t work. Oh I thought initially I would, I thought I’d be well enough after doing a couple of cycles that I’d probably return to work. But the second time was a lot harder, harder to tolerate, in the end, and again harder to tolerate in my mind. I started to get a fear of going to the hospital. I started to feel very, very sick on the way there, on the last couple of occasions. Literally as I’d get out of the car I’d be sick before I’d get into the chemo room. Again they have chemo, sometimes even now certain smells, I’ve got, there’s something in the bathroom, soap, one of the soaps reminds me of the chemotherapy. Even the nurses, even going to that particular floor in the hospital just takes me back. The other day I had to go for a blood test, out of hours. I had to go to the chemo room and again that’ll upset me. I do really now find it hard, in my head getting around the chemotherapy. I call it the juice.

What was your feeling when you heard you had the recurrence?

I was very disappointed and upset because I, I really thought the operation was the cure and I couldn’t really believe it and we did go to see the surgeon again and see if he could possibly [operate again] , but he said I can’ I suppose he did his very best the first time and, I don’t know why but anyway he said Your best bet is the chemotherapy, go for i. So we did. I had the first one on April 11th and the second one which was going to be the next week I couldn’t have because my platelets had gone down to 40 and they’ve got to be a 100 before they can give you the treatment. So the first bout of chemotherapy must have affected my platelets so I went again the next week and they were up again to 180 or something they’d made a recovery so I carried on with that.

Was it a different sort of chemotherapy?

No exactly the same.

The gemcitabine?

Yes, and this time the oncologist said I would like to try some radiotherapy as well.

Yes.

So during the chemotherapy I started radiotherapy so I was really dashing from one unit to another, I had this on the same day. But it was alright you’re only there for a few minutes for the radiotherapy, it was in the same building.

Can you explain what it’s like to have the radiotherapy?

it’s a bit like the, the scan really the CT scan. You lie on a bed and this machine just passes over, oh they mark you up first, you have to go for an appointment and they put a little tattoo in the places where, you know, it’s got to be and then you lie on the table and this big round machine goes to one side and slowly over and you don’t feel a thing really.

Did you have any side effects of the radiotherapy?

Well I don’t, I was tired, very tired but I was having the chemotherapy as well.

Yes.

So that all finished on the 26th September.

I have various secondaries. I have, I have one in the bone at the top of my leg, which is a bone reducing tumour. I have, I think, five in the lymph nodes around, round my back, on the inside of my rib cage. And I have one in my liver. That’s about it as far I know. Without having another scan, I don’t know.

When you say, the one in your leg is bone reducing, does that mean it’s kind of eating away at the bone?

Yes, there are two kinds of, of bone tumour you can have. One causes the bone to grow but in a very weak mushy kind of state. The other one reduces the amount of bone that’s present. So bone-eating would be a bit of sensational way to describe it, but yes, that’s essentially it. I had radiotherapy for that, which worked well but I think I’m feeling the pain’s getting worse so it’s possible that it’s time for another look at that. Maybe it’s come back a little bit.

Tell me a bit about that radiotherapy.

I had radiotherapy for the secondary that’s in my hip. And it was very straight forward; I just had one, one session. it’s, because of that they fitted it all into one day for me, which was appreciated. It started with a, they already had an x-ray so they knew where they were looking for the secondary tumour. So they did a dry run, in order to get the grid that they mark on you in the right place. And worked out that they were happy with where it was, the dose they were going to use, the focusing and so on. And then after lunch effectively they did exactly the same thing, except this time it was for real, they actually used the radiotherapy. And it was two short doses, one from above and one from below. No, no appreciable side effects at all, except fatigue. Even the tiny little, I didn’t, I hadn’t, I was very fatigued afterwards, for two weeks afterwards. And you read it in the list of side effects but you think, I’m having such a tiny amoun, that you sort of let it go over the top of your head. But the fatigue from that was extraordinary. So people who are on a long course of it must, must really suffer. Yes, because one, one little dose lasting less than five minutes knocked me out for two weeks.