Now when my doctor turned round to me and said, "Well there's this illness called focal segmental

He was fumbling with his notes and embarrassed and I said, "It's terminal isn't it?" so he said, "Yes it is," and there was that instance.  

I'm taken into hospital a lot because my bladder goes into spasm or I get uncontrollable pain that needs intravenous morphine which I can't do myself and when the doctors sort of look through the notes and they come in and they say, the first thing I say to them is, "Look I know it's terminal so you don't have to sort of beat about the bush," and the look of relief on their faces when I've told them, it's as though, phew, thank God we don't have to go through that.  

People don't like giving bad news and I believe that they, there is no nice way of saying it, you don't walk in and say, "You're going to die," no one does that, not unless they've got the most incredibly bad bedside manner. But you tell, somebody would want to know, I know I would want to know.

First of all I thought you know 'No this can't be. There has to be, there's 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 there's only... What is it that Benjamin Franklin said?  "There's 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.

I am no hero. I'm very much a coward in some respects, and I can't cope adequately with the pain because the Macmillan people have explained to me that there is no pain control that they can give me, or anyone can give me, that will effectively take the pain away.

Now there is a trade off and the trade off is that I'm not prepared, at this point in my life, to make myself totally dependent upon other people. I need to have an awareness of my surroundings. I'm chairman of governors of two state schools which takes up my time because when I'm doing things I don't sit and think about me and what's going on inside my body. I love hearing kids read, I've even got my fiancée involved as a school governor as well. The reason being is that I can have more time with her that way. No, she's very good as a governor. 

But I can't control the pain effectively. I'm taking massive amounts of morphine to control the background pain and it does sometimes... and I'm using another drug called Buscopan [hyoscine butylbromide] to try and ease the spasm pain when it happens and that's via a tube, just here which you can't see and a syringe. The Buscopan has one of these side effects and it paralyses smooth muscle and it is a simple drug so it will paralyse any smooth muscle, whether it be kidney muscle, intestinal muscle or anything. So there is a danger that I can paralyse my bowel and I won't let that happen because that is not... So the things that I do. The quality of life that I have and that I set for myself is governed by what I'm able to do, what I'm able to tolerate.  

I feel sad and angry that at the dawn of the twenty first century they're able to talk on television about taking photographs and soil samples of Mars but they can't give me something that will keep me awake, lucid and to be a useful member of society and kill the pain at the same time.