I get Disability Living Allowance. I get the top rate for care because of all the tubes and things that I have inside me;

I also have a car via Motability which is great because I could never afford to run… I mean everything is done, it’s serviced and Motability are very, very helpful. I’ve got to terminate this one early because since getting the car that I have, I’m using a wheelchair a lot more so weve got to find a place to put the wheelchair so I need a larger car and they’re helping me through with that;

There is a person who comes here once every two weeks to the block who is employed by the charity and they help me with all my benefits and all the other things. I think the local social services could be more helpful than they are.

I feel very strongly that there shouldn’t be discussions in huddled corners and mumbles and murmurings; I want to know everything about myself and the contract that I have with my health care providers and the people that treat me and the people that administer to me is that you can treat my body as long as you tell me everything. The minute you start holding information back from me or not telling me anything then you lose the license to treat me. And if everybody worked on that basis, and if there were no, as I said, huddled whispered conversations in corners people would feel a lot better.

I’ve heard of so many times when “Well you know hes dying don’t you?”, “Does he know?”, “Oh no, no, no, ssh can’t tell him, look at the effect it will have on him. But it will have one hundred and fifty million times worse effect on him when he finally discovers through reading some notes or opening a letter he shouldn’t do or hearing from somebody else;

My kids heard that I had cancer in the school playground and from a teacher making an off the cuff remark which she thought was innocent. Everybody has a right to know about what it is happening to them and whether their illness is more serious than they believe. And theres enough information there. Theres enough trained people now to talk to children of a relatively young age about what is happening to their parents and their loved ones. And they will cope with it, just give them the opportunity.

Now one of the things, talking about things that I want to do… I have very strong views on what I want in the way of medical care, and, I think you call it a ‘living will; All I have… I’m not a model. I’ve not got these fantastic features that girls run after. I recognise that I’m fifty two years old. I don’t use Grecian 2000 to get out the Grey. I refused to. I like my hair the way it is. All I have is my intellect. I’m told that I have a very high IQ and I’m very intelligent and because of that I can handle physical disability. As I said, when I was a child I had polio and I handled that;

I use a wheelchair a lot when I’m out and that doesn’t bother me because I see that as a positive aid letting me do my shopping, letting me go places to shopping centres and malls and places that otherwise I would just be too exhausted to go round on foot;

If I were to have a stroke or any sudden illness that impaired my ability to communicate and my ability to interrelate with other people, that made me totally dependent on outside help, I’ve made it very clear to three separate people that I do not wish to be revived under any circumstances. I don’t want to be a burden on other people. I don’t want to be totally dependent. I don’t want somebody changing me and cleaning me and spoon feeding me;

The biggest joy that I have is the fact that I can talk to my friends and conduct an intelligent conversation and answer questions on University Challenge and all those sorts of things, and enjoy a good film, and talk about art an; things like that. If I can’t do those things and I’m just detached completely in my own little world, I don’t want to be a part of it and I can’t handle it. And also going onto that when the real final day or hours come I don’t want masses of machines and tubes I want them all taken out, I wanna be as peaceful and as natural as possible I don’t want them to, fill every little hole that I have in my body with something you know;

I just want it to be natural. I want all the stuff taken away. Only the things that if I need a breathing machine, fine but apart from that I don’t want drips, I don’t want lines, I don’t want tubes, I just want it to be as natural and as quiet and as peaceful as possible.

As I said, I took an overdose when I discovered that my illness was more than just cancer and I would’ve had no regrets, it wasn’t a cry for help. I did not want to be found but my son had gone out to dinner that evening to a local restaurant and had spilled a glass of red wine down his white shirt and he came home and he found me. If he wouldn’t have found me then, who knows? But I have something that I call the great escape;

Why the Great Escape;

Well you go back to the Steve McQueen and the hero bit, but there is a bottle of tablets that I have put together myself that I know will end my life. The chances of me actually taking it is very, very small but I have to have that ultimate control. That ultimate sanction that I can decide because one of my fears is that if I am in too much pain and I am too miserable and every day is a living hell then may be I don’t want to be around any more. And I will make that decision.

Would you call that euthanasia?

No. I would call that taking a practical step to doing something. It’s not euthanasia because euthanasia is taken by others. It’s dealt with by other people. This will be something that I will do myself. And having researched on the internet as to what the drugs that I put together will do I am quite confident that it will do what it needs to do.

Have you got an opinion about euthanasia?

Yes I do have an opinion on euthanasia. Euthanasia per se I am against. I don’t believe it’s the right of anybody else to terminate somebody elses life. However the people that have motor neurone disease, the people that have MS and are in excruciating pain, a lot worse than the pain that I have, they should be able, in conjunction with their partner, to decide that enough is enough and that they should be able to take their own life.

Everything is basically governed by what I’m able to do and the amount of pain that I’m in. Pain level is increasing and I had a three month exploratory course with the Macmillan nursing system and they were great in one aspect and through no fault of their own not so good in another aspect;

They have helped me identify that I’m trying to cope with two different sorts of pain. One is the, what I call the background pain, but it isn’t background pain any more. It’s there all the time from both my kidneys and at the base of my spine and in my bladder. And the other is the spasmodic pain where my kidneys go into spasm and the only way I can describe that is have you ever had cramp in the back of your calf, you know when sometimes –

Yes

Yeah, well that’s what happens in my kidneys

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, shes 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.

So do you mean you’re seeing a counsellor differently to how you’re seeing other professionals?

Yeah I do very much.

Can you explain how shes different then?

We, we meet at a cancer centre and I can say things to her in the room where we are and I know that it’s, it’s my time with her.What I found very important was that I’m only, I’m one of a group of people and it’s the only time in the week that is my time and she devotes totally her time to me. She has other patients of course but when I’m in there for that hour, hour and a half with her I feel that I can say what I need to say, I can express what I need to express and shes totally focussed on helping me. Whatever she does, whatever she says, is aimed at making things as easy and as possible and as comfortable for me as they can be;

The other thing is we came to an agreement that she would tell me, not necessarily what I wanted to know but what I need to know. I’m sure that when she deals and talks with older patients who may be don’t want to know the details and don’t want to know the ins and outs but need the sympathetic support, I know that shes capable of that; But the type of support that I need for her is the honest approach of “this is how it’s going to be but I will be there with you as far, as long as you want me to be with you,” and I find that very, very important.

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.

I have a broadband internet connection and I’m very good with computers. I was given, I think it was a compliment, somebody said that I have a computer brain of an eighteen-year-old so I suppose that was a compliment. When I open a computer manual I don’t have to follow the first instruction which says first find a twelve-year-old. So I use the net a hell of a lot and theres a lot of information out there;

I have to, in the next two to three weeks or so have a tube put into my bladder via my belly button which is called a supra-pubic catheter and that will solve some of my bladder problems so I went on the net and I dug up all the things about it and read it so that I know what I’m in for, I know what’s going to happen and how it’s going to happen and I actually saw the procedure in streaming video on the internet so I know what’s involved.

Do you think that’s a good and reliable source of information?

Some of the hospital sites, especially the American ones are very, very good. I don’t go to sites where it’s peoples opinions. I normally go to the hospital site, first you put in the name of what you’re looking for and then you get a whole list of sites and normally I go to the hospital sites and read what the consultants have said or the senior physicians in America have said and go from there;

I don’t go for the opinion sites. I don’t go for the chat groups because basically you don’t know who you’re talking to;
You can be talking to someone that says I am a doctor of eighteen years experience and in fact you’re talking to a seventeen-year-old junkie who’s on a trip, you know.

So you couldn’t really trust…

I don’t trust, I don’t trust chat groups, I don’t trust reading other peoples experiences, I want to read what the hospitals themselves actually put out.

Have you got any advice you can give people about how to talk to children?

Yeah, you need to do it in conjunction with the teachers at school;
These teachers… part of teacher training is the psychology of dealing with bad news, how to deal with bad news. I’ve actually sat in on something called an inset day at school, where they actually talk about how to deal with bad news, how to deal with children that have bad news. These people are trained. There are some incredibly good books and good literature. There are some good videos and a lot of the cancer charities especially and the cancer organisations have literature and information that you can look at. It is pointless to sit them down and say, “Mummy or Daddy is going to die, they have cancer etc.

You have to introduce it in a way, and you have to introduce in such a way that they don’t feel alienated. They don’t feel betrayed, they don’t feel let down;

Now when my doctor turned round to me and said, “Well theres this illness called focal segmenta;bromular sclerosis,” I was trying to work out whether he continued the discussion in English or it was a foreign language. 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.

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