Two years, three years ago I had chlorambucil and it didn’t work. After the six month’s course nothing happened, so I was told by the consultant that it was no longer any use to me and that I would have to start on another drug. The first thing I asked him again was, Am I going to lose my hair And he said, It will thin and that will probably be the only problem you hav. Do I have to come into hospital No, you can have it at home but you will have check-up I started the drug, FluCy, I was allowed four treatments. They gave me three. The first treatment worked. I had a white cell count of 350, and that was immediately brought down to 15 on the first dose of FluCy. That’s a three day course. No steroids except my ordinary five milligrams I have to take daily anyway. It didn’t affect my sugar levels. I did have a temperature. They told me I would have. I was taken into hospital because they were afraid that there could have been an infection, but by next morning I was fine and I came out. I continued the second dose of FluCy. Nothing happened. It didn’t bring it down any further. It didn’t take it up. The third dose didn’t work at all. My consultant then decided that since I was only allowed four doses he wanted to keep one dose back in case I really needed it at some other time.

So it’s only after years of having it I know the symptoms. Bruising, it has to be platelets; pounding in the head, it has to be the red cell count going down; and the fatigue, it means the white cells are going up as well. So I begin to know what’s happening to me. I know my body now.

So the symptoms have gradually developed over the years from what happened at the beginning.

Yes, the symptoms have changed in fourteen months. The platelets have never given me problems before. I’ve never had high platelets but I’ve always a hundred and five a hundred and fifteen. I noticed that it went down to seventy five. My local doctor looked at me and said, I think we’ll do a blood test, you’re bruisin, and I said, it’s platelets, isn’t it And he said he thinks so. He sent it off and it was confirmed it was platelets were low. This time platelets were even lower. they’re thirty eight, I’m bruising, still bruising badly, but they don’t usually do anything until it’s about ten. But I was told at the haematology clinic that now the FluCy has finished attacking the body the platelets will probably increase anyway and they will just watch it on the next blood test, which is in two weeks time. But if I feel ill or the bruising is all over my body I shall immediately go back, but I’ve been fine. So I shall have another blood test in two weeks and then I shall see the consultant.

Okay. So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.

Yeah.

Can you describe the tiredness to me?

Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly, and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s general your body won’t work and you get a fuzzy brain as well.

I then had a problem with diabetes, which I didn’t know I had. I started having seizures in the house. It was confirmed that I was a diabetic and it could have been, they thought, due to very high doses of steroids. I was then given treatment for diabetes. The consultant at the hospital for diabetes informed me that I’d have to be very careful, not only did I have diabetes but with leukaemia as well. I made up my mind that that was not going to get me down and I was going to conquer the diabetes because of the difficulties I was having with leukaemia. I kept a strict diet and it’s not been a bother. I then couldn’t drive for a year. That depressed me, and I was having to have chlorambucil again. It still worked and I was doing fine on it.

So do you think the steroids and the effect they had on you caused the diabetes?

Well, they said it could be a contributing factor but they were not sure. But of course, because of the steroids I gained weight anyway, which is another factor for diabetes, so they’re not very sure.

But I think you told me off camera you’d managed to conquer your diabetes.

Yes.

So you’re not taking any medication any more for that.

No.

Brilliant, and you lost all the weight.

Yes.

And you did that through diet and exercise?

Yes.

That’s really good. Well done.

Yes, basically just keeping to a very, very strict diet. Eating small amounts, lots of vegetables and fruit. I just changed my eating habits. In fact I found now that I went out to a restaurant the other day to celebrate my white count coming down and they did a jacket potato but they brought me chips and I found I couldn’t eat them. it’s so long that I’ve eaten that kind of rubbish that I just couldn’t eat them. So my lifestyle changed completely.