You were just going to explain why you think you might prefer to be quite private about this?

I think it’s been put to me and may be it could be true that when I was, when my children were quite young I had a major fit and I was diagnosed as having epilepsy, no real cause for it. And when a particular friend of mine found out it was almost as though I had some terrible disease that was catching to everyone and stopped her children seeing my children very abruptly.

Awful.

It was difficult to explain to my son, in fact I didn’t I didn’t explain exactly why I just said she had different things to do. It really made me feel very uncomfortable, took me quite a while to get over that and I wonder if that’s at the back of it, peoples reaction. You’re sort of stepping back thinking it could never happen to them. And I know some very nice people and I’m sure they wouldn’t but I don’t feel I’d take that chance.

No I think that’s quite understandable.

I’m quite happy to be talking to people about every day things that are nothing to do with what’s wrong with me. (Pause), but I sympathise with them and I’m a good listener but I’m not so good at talking about it.

Right I had been looking after my young granddaughter during the day and I noticed when I was pushing her in the pushchair up a hill or a slight incline I was quite breathless. But I’d spent the summer doing nothing after having retired from heavy work in a nursing home and I thought I was just very unfit. And as time went on I didn’t notice I was losing weight, well the bit I was losing I thought, oh I’m getting fit now. And I went to the doctors and they diagnosed me with a chest infection which I found strange because I didn’t feel I had a chest infection. I had antibiotics and I thought I felt a bit better and I went back again and had more antibiotics. And time went on; and my son happened to say, “You seem to be losing weight Mum,” but I didn’t feel particularly ill, just was getting tired with this pushing. So when I did go back I wasn’t feeling too good, the doctor suggested a chest x-ray.

Which month was this?

Originally it started in November and it was about May before he suggested the chest x-ray. He did suggest one in January but he didn’t carry it through.

2002?

2002, November 2001 was when I started the breathlessness. And I went for a chest x-ray. He did it through the chest specialist rather than do it himself, he contacted the specialist at the hospital rather than just send me in for a chest x-ray.

Again I was worried because the mere thought of it [a CT scan]. I said to my daughter “It’s a body scan isn’t it?” and she said “Yes,” so I was thinking, Oh everything is wrong, I’ve got it all over my body. My mind was racing ahead. I had the scan which involved laying down on a flat bench and then they injected some fluid into my arm. I can’t remember if I had to fast that time, I really can’t remember. Anyway and then you go under more of an arch, the whole body doesn’t go in, it’s just the part that they want to look at and it’s all automatic and the people controlling it move into another room and a voice comes over asking you to hold your breath. And then the machine sort of slid the bed out again and then I had to go in again and the same thing happened, hold your breath. And that was that, it wasn’t, it didn’t hurt.

Did you have any reaction to the fluid at all?

No, not at all no.

Did they explain why they were injecting you with fluid?

To show, to show up the area they wanted to x-ray. One thing they did say to me was, and I’m glad they said it, very glad, “You might feel as though you’ve just wet yourself,” which I did and had I not been told that I wouldve thought my goodness what have I done? But it’s just I think the fluid going in.

Which brings me to the grandchildren; the older two were eight and nine last year when I was diagnosed. My daughter wasn’t sure what to do, and at the time I didn’t think it was right to burden them because again children hear all sorts of things and I do feel theres a time and a place. My daughter did explain to the school, in confidence to one teacher, just in case they inadvertently found out from whatever source, and so they could notify her and she would be right onto it and we could explain. But in their lives nothing has changed, and we just get on with day to day life. I’m not one for going out a lot, so life hasn’t really changed dramatically. I’m sure it must do for people who live a very, very busy social life and working life and more people know and I think then the more it’s all talked about and I think it must be hard to get on. But every one is different, everybody copes.

And this went on from July till September. I was to have four lots of treatment so it took in about twelve weeks.

Four lots of three weeks cycle?

Yes. During that time I did have a very low platelet count. I had some purply red spots come up which were just a few but I rang the unit and they said they would ring me back. And they contacted the chest consultant who asked if I could go in and they did a blood test there and then and my platelets had dropped right down to five. I’d been shopping the day before, I didn’t think much to it and they, they asked the other patients there if they would mind if I was treated first because I needed urgent treatment which to me again I was thinking, Oh do I Not knowing much about platelets, perhaps I should have done. And I had the treatment on the Friday and I had to go in each day over the weekend and have the treatment and my platelets went up. But again they had a bed available for me should I need to be hospitalized.