I was having, well I’ve, about three times a week. Twice, three times then it could be five times a week, then, it’s then cut down, then you have, you do a circuit of four lots then you have, what can I say, a couple of weeks off. You know, you don’t have no treatment at all, they just take blood out, make sure your bloods or everything is all right, you’re not suffering from any upset, colds or anything.

But when you’ve got to have your chemo that you’ve got to have, oh, you go there and then they’ve got to take blood, then that goes to the path lab, then it comes back, which is a couple of hours. Then they’ve got to administer the chemo, if everything’s all right, give you the chemotherapy, which is two and a half hours, three hours. So you’re there, I’ve left at half past eight at night, I haven’t got home until half past eight at night, except if your blood isn’t right or something’s wrong, you know, then they’ve got to wait until everything’s, they’ve got to put you on a drip with potassium or magnesium. And I’ve got home literally at half past eight at night and I’ve been there at eleven oclock in the morning. It’s very tiring but then it’s got to be done. You don’t want to die do you?

So when you have your arsenic chemotherapy you don’t have to stay in hospital do you?

No, I go to a day, what do you call it?

Day unit, day centre?

Day unit. They have a day unit and they, well, as I said, they can be a couple of hours, three hours or four hours, or it could be, if it doesn’t work, but they administer it, you know, you’ve got to be there twice a week. Like, you have it on a Monday then you got to go back on a Wednesday and then a Friday, or something like that.

You had some chemotherapy injected into your spine.

Yes.

Tell me about that.

They went through that in some details with me about how it was, about how it could be quite painful and why they were doing it, because they had to gain access I think up to my brain and what have you, and I think I had about five doses. I was okay with that. I think I was, it was done in my bedroom because I had a private suite most of the time.

So we were standing in the bedroom and it was a case of me leaning over the window I think, and I would just have a look out the window. That’s the agreement we’d had, and that I’d calmly look out the window. And in fact, one of the doctors was doing it, he was quite inexperienced and I was asked if I was okay for him to do it. And I looked at this South African gentleman and I thought, Well he’s got to do it some-, somebody’s going to have to, you know.

And it was fine, absolutely fine. He was very, very careful. Probably more careful because he was new, and he did another couple of times, so I was okay with it. I know some people have got quite big reservations and concerns about it and it’s obvious from the way they were talking to me, but it’s something that I was quite calm, quite happy with to a degree, and I just I was very good with keeping that advice of staying still.

it’s good hour afterwards in fact that I’m sure they told me it was more like half a day if you can, the longer the better, stay still because headaches and what have you were mentioned I think, and dizziness. So I did, that’s where I was at the time, I was quite happy to just lay down and sleep and watch some awful telly. Watched some awful telly, yeah. Yeah so again I followed, I listened to what they say on that one, yeah.

They started giving my chemo immediately. Initially, it was, I think once, I think three times a week. That was a pretty high dose at a very, very quick succession. And as someone who has gone through it is also I remember that is very, another painful episode, of course not as much as a bone marrow extraction, but they drill a hole in the spinal cord and then they put the chemo. Then once they started the treatment I was having another phase of difficulty. I had a typical meningitic pain, what the doctor said to me, because a large number of leukaemic cells started dying in my system and they were rubbing against the nerve and they were almost flooded in my cerebrospinal fluid. So there was not being, I mean there was very, I don’t exactly know what they meant, I can’t remember what exactly they told, but it is something like the body sends out all these rogue cells from the cerebrospinal fluid to the blood and from that discharges out, outside the system, which is a very slow process.

Since there was a lot of dead cells, my nervous system was not functioning properly so I had this problem. Then I couldn’t move from my bed. If I somehow, if I could try to shift my side and then it was giving me terrible pain. The pain was at times it was so severe and so shrill pain. It was absolutely difficult. I used to start crying and then, not crying exactly, start shouting, What the hell is happening to me And so long I was, Okay, and what is it But the doctors they kept on injecting a lot of painkillers and then a lot of medicines for this kind of pain. And mostly nothing worked. I had to go through the pain. I couldn’t sit up. I was lying in a flat bed. I couldn’t eat. I couldn’t drink for most of the days. Most of the medicines they used to inject through my Hickman line and that was kind of a difficult thing. I mean in the night I couldn’t sleep because of that pain because I couldn’t turn. My whole spinal cord was paining like anything as if someone is hammering in my spinal cord, I mean putting some nails in my spinal cord. It was terrible.

So I continued like that and I remember that there used to be some days where they used to give me some medicine that is some morphine-based medicine but which even after injecting those medicines also I couldn’t get to sleep. It used to put me some slumber and then I woke up usually. And there was also a time like in the day you can take only four or five of those kind of painkillers. Now after four and five also I did not have any other option so that was a terrible time.

But anyway, I got over with that and after that I came back after that one is over and I went down through that cycle of this treatment that is injecting chemotherapy in my cerebrospinal fluid for another two months consecutive.

Of course, when I went for my check-up the doctor nearly went spare. She said, You’re terribly anaemic, because I have to have a blood test two days before I go, and she said, That was angina pain. She said, You could have had a heart attack, which frightened me and she said, You can’t go home. You’ll have to come into hospital now and have some blood and be checked over. So that was panic.

So I had to give my daughter-in-law a list of where everything was, and I was in there for about three days where they gave me three lots of blood and started me on some pills. And I was on those for about two months but I was having to have blood transfusions, first of all it was monthly, then it got down to weekly, because it just, I wasn’t making any red blood cells. So she said, oh, she’d have to change the tablets I was on to stronger ones, but before she could do that I needed to have bone marrow taken.

But these new ones have worked much better so I’ve been cut down from once a week to once a fortnight, and my next transfusion, if it’s necessary, is in three weeks time after I’ve seen the doctor. And because she said that now I’ve started to make my own blood cells again. So she hopes that I’ll only need four months treatment, so that would take me to September, then I’d have to have another bone marrow test to check it’s all right and then hopefully I’ll come off them for a while. And that’s it.

It was diagnosed in 1992 and I think it was in 1994 when I was finally told I’d got to start my treatment. I went to my local hospital and saw the consultant and he told me that I would be on chlorambucil medication. I asked him, the first thing I asked him, Will I lose my hair, because that petrified me. And he said no, I wouldn’t lose my hair. My hair would thin. I would have fourteen days of chlorambucil and fourteen days off. I would then have blood tests, see him in a month’s time and start all over again, and it would last for six months. I started the chlorambucil. I sat imagining all the symptoms that I read in the packet and decided that I wasn’t reading any more. If a symptom came up I would then look at the packet but not read them all and get depressed.

The first fourteen days, because of the fear of all the symptoms which I thought I might have, I panicked. I had fourteen days off and forgot about it. I went back and started my second month of fourteen days and I can honestly say I didn’t have any problems whatsoever. I had no side effects. In fact, sometimes because of no side effects I sometimes wondered if I’d actually taken them and I had to keep counting my pills. I got through that. My white cell count came down. I was fit again. I continued my job. The tiredness left me, the aching bones left me and I went for six-monthly check-ups.

I think it was two years and I had to start again, and this is what life was. Six months of chlorambucil, fine again, fit again. I didn’t lose my hair, in fact my hair grew like a train. The steroids made me go mad in the house. I painted everywhere bright colours and decorated every single room in the house. I tore the garden apart. I had so much energy it was wonderful, but I gained a lot of weight.

Good. Okay, tell me about this latest chemo, the fludarabine and clyclophosphamide. How many pills? How often?

Now that was, my husband did a flow chart on the wall because it was three days of three lots of fludarabine, three lots of cyclophosphamide. There were also antiviral tablets to take. There were sickness tablets to take. And there were also, I can’t remember what they’re for, another sort of to stop you getting pneumonia I think, which was co-trimoxazole. Can’t remember what that’s for but it’s something to do with infections.

So on day one took a sickness tablet about an hour and a half before the six chemo tablets. So we had to work it out so that, like that, so he did a fantastic chart on the wall, pen, tick it off. Sickness tablets, six chemo tablets plus an antiviral, plus every Monday, Wednesday and Friday this other tablet which I think was to do with chest infections, oh and shingles, things like that, and herpes, that’s what those are for. So on top of that I was also taking my own antidepressants and various things that I take. And then the rest of the week you just took the antivirals and the sort of thing that was like an antibiotic. Then the next day was the same, and the next day was the same, so there’s three days where you take these multiple tablets. Oh, and I forgot after the sickness tablet in the morning you have to take it twelve hours in the evening ready to combat anything, any breakthrough sickness.