So it was all found, so it was a big shock, going in that Tuesday evening as it was, and being kept in. I’d never been in hospital before and then they thought to start with that it was a benign tumour and then to be told it was cancerous and then to be told that it was also breast cancer .

All at once?

Well, within the space of six weeks, yeah. From being healthy and being at work and healthy except for the headaches, which I’d decided that I was approaching fifty, I was working, managing my family and doing what a lot of women do and deciding well, a lot of people have headaches.

I’m a pharmacist, I used to meet people coming in, the other side of the counter, coming in, women of my age coming in with headaches, and thinking, “Well I’ve just got to get on with it you know, this is life”. So yeah, big shock and I haven’t been back to work. That was the last time I went to work.

What about that experience when you were given the terminal diagnosis? You were told face to face then?

Yes, I was told face to face.

And there was support ?

Yes and there was a support nurse there.

So would you say that was a good aspect?

Yes, that was good there was someone there to help. But there again theres a slight reserve on that because I don’t think she quite realised what, I was actually in a state of shock, I could barely walk. And I think I could have done with some medical assistance at that stage so, I don’t know some drug of some sort or something.

Do you mean a tranquilliser?

Yes, something. I wasn’t offered anything like that. Yes I got moral support and physical support with her there. A complete state of shock because for four years I’d had pain and these bruise marks coming up and being told consistently, ‘Nothing wrong. Nothing wrong. It’s just the result of radiotherapy. Just get on with it. It’s all right.

I never suspected that it could be something like this whereas with breast cancer when you’ve had a lump you think, oh it might be breast cancer so you’ve got a slight inkling that there might be something there and you’re beginning to deal with it. This, I had no idea whatsoever and I’m quite sure I was in a complete state of shock.

Well as I say I took, I thought I took it well but I did, I mean they did, during the time the months from when I started having the tests and all that I suppose during that time I, and up to that time I wasn’t, I hadn’t been told it was, it was terminal, that I had chance to sort of absorb it, accept it you know;

So that by the time I knew that it was positive I was ready for it by then I wasn’t ready for it the first time and if a doctor said, ‘You’ve got a tumour’ you know, no I wasn’t ready for that one but, because I didn’t, I hadn’t felt ill or anything and I had no reason to believe I had got anything the matter like that, I just thought it was indigestion a rotten pizza.

And then a nurse and the senior house officer came to my father and we stood beside him and she told him

And what was his reaction?

‘You’re wrong. She had to tell him that he was definitely going to die and he said ‘It, it can’t be. There must be something you can do. And she said ‘No, there is absolutely nothing they could do’, and he said, ‘But there must be.

He was an inventor and mechanical engineer and he could think about all sorts of things he could do, to build you know artificial legs that were driven by electronics and do the walking for him. And I don’t think he had really taken on board, what it would mean for the rest of his body as the disease progressed and of course nobody really knows about motor neurone disease until they get it.

How long did this sort of denial go on for and how did his emotions change?

I think he was what I might term in severe denial probably for about two or three weeks where we… it was very difficult to talk about anything because he wasn’t having it that he was likely to stay in [hospital]

When I was diagnosed I must admit that I was frightened and didn’t want to accept that this was happening to me. Me, you know. Me. I was… blamed God. I blamed my wife. Can I name God? I blamed him. I blamed everybody and everything. I blamed my mother. I blamed my father. I blamed the coalmine that I went into when I was thirteen years of age. I blamed everything and everyone. I blamed the environment. I blamed Mrs Thatcher. I still blame Mrs Thatcher. I blamed everybody.

But gradually, my own background, with the help of a very good psychologist, and the help of a very good consultant neurologist, who understands, and they were able to talk to me. They knew of my professional background, I was then being able to think of the illness, not that I knew much or very little about MS, I knew an awful lot about illness. I was able then to say, “Well yes, first of all let’s accept that I’m ill, I have, I have an illness, it’s nobody’s blame and I’m not. I’ve got to stop blaming everybody. It’s me, it’s what’s happened to me and it’s something that I’m going to have to live with”.

So I feel very guilty about saying this but when I first had the prognosis I thought hooray I’m not going to get old and decrepit and be a pain. I’m not going to be dependent on anybody. I’m going to die before I get to that stage. And that was quite a plus. But now I’m thinking oh my God I’m going be a pain to somebody. And I worry about who’s going to be left, my husband or I;

Hes fit and well but you just don’t know do you, so that worry has actually come back because at the beginning it had gone because I thought hooray I’m not going to have to worry about that. I need to talk to him about what hes going to do without me.

First of all I thought you know ‘No this can’t be. There has to be, theres a mistake somewhere or whatever. And then when I actually read… they gave me a copy of the biopsy report that showed me that my kidneys were failing from the inside and that there was nothing they could do about it;

And, I suppose I went through a quick planning check of what I wanted to do and where I wanted to be and who I wanted to be with and all those sorts of things. But first of all I was numb, really numb;

I didn’t get angry. I mean a lot of people… I’ve spoken to a lot of people and they’ve said you know "why me?" and this, that and the other but I learned a long time ago that, that I have a certain amount of energy and to expend that energy on anger is just a waste of time because all, it doesn’t, it doesn’t achieve anything ; all it does is make you more tired and more frustrated. Being ill is very tiring, being in pain and I’m in pain all the time, is very tiring. So I have to try and channel my energy into positive things.

So I knew that there is a time limit and I started to realise two things’ I realised that the best days of my life were behind me and I had to come to terms with that and I also had to come to terms with, that, every day is one day nearer or one day less. Now I know that’s for everybody and, you know theres only… What is it that Benjamin Franklin said; "Theres only two things about certainties in life Death and taxes."

But you normally expect that your final days will be as an old person, sitting in an armchair, reading a newspaper and that you’ll die in your sleep. Well it isn’t going to happen, it’s going to be different. And I found great difficulty in the ‘D word’ and I used to…very strange. When I had cancer all the people around me would try and find other ways of saying the word cancer. ‘The Big C. ‘It. This, that and the other and at the time I thought, you know, why can’t they actually say it? And then when I was told that I had a terminal illness I had this aversion to the ‘D word’ and I would find other ways of saying it. For a long time when I was with my therapist I would say you know, "When I close my eyes for the last time," that’s the way I would describe it. I don’t have that problem now because I’ve got round that, and I can..

How did you get round it?

By realising that it’s only a word, like ‘cancer’ is only a word, like ‘Tb is only a word. No it’s two words, but it’s only a word and you have to come to terms with it. It’s like that thing you see on the television you know "My name is John and I’m an alcoholic," and the only way I can confront it is by accepting that it’s there and not fighting it but almost working with it to give myself the best opportunity and the best quality [of life] that I can have.