Interview 21

Age at interview: 66

Age at diagnosis: 66

Brief Outline: Developed symptoms in December 2001, diagnosed with oesophageal cancer in December 2002, treated with chemotherapy to shrink the tumour, followed by surgery in May 2003.

Background: Head of ship hydrodynamics research, married, 2 children

He doesn't want to know exactly how many years he has left to live.

Well I haven't asked them specifically how many years I could expect and I'm not ducking that question but, do you know, I believe in adopting a very positive approach to the whole thing. And I don't really need to be told that it's one or two years. I don't think I would welcome that, you know. To know that, at the most, it may be five years downstream doesn't bother me a great deal but on the other hand, when I say it doesn't bother me I mean it does, there's no doubt about that. We all want to go on living as long as possible, but I can accept that, and I believe my family can but I'm not too sure I want to be told that it's a year away. 

As Im saying this to you I'm not too certain actually whether it would bother me or not. I just haven't asked him, you know. I recognise the time will come when somebody will be saying to me, ' Well we can't really do anything for you now', and I'll have to start thinking about 'Well am I going to stay at home or am I going to go into a hospice?' well when that time comes I'm pretty confident I can deal with that and cope with it okay. But I guess what it comes down to is I don't want to talk in those terms until I've got to.

He suggests that doctors and nurses are now more willing to explain things than they were in the past.

Yes, well my main sources are from the medical people of course, whether it's my GP or a consultant that I've seen, and before I go and see anybody like that I write down, that's important to stress that, write down a list of questions and points I want to raise with him and make sure that they answer those questions. 

One of the things I've found that whoever you're talking to, whether it's a GP, a consultant or nurse, they're very willing to explain things. I think that's a big change, well we touched on this earlier before we started this interview, that's a big change that's come about in recent years. The medical profession realises that it is good, if the person wants it, to be as open as possible.
 

Suggests that there should be a named person who could help obtain information.

It's also helpful to have a mentor or a help person in that you find that so many people are involved in your illness. 

There's the GP, there's the cancer specialist - in my case there is a gastroenterology specialist, there's the district nurse, there's the nutritionist, there's the dietitian, all feeding you information.  

If you're lucky and they approach you, or you know how to go out and contact them, but there are lots of people don't know how to do that, and so that's once again why I think this mentor would come in. Somebody who knows about all the contacts and could point a sick person in the right direction if they haven't already been contacted.

Well unavoidably there are medical terms used in the fact sheets and I'm sure with many people it would be helpful to be able to discuss that with somebody and get more information. Another point about this, I know when you're seeing a consultant you can ask these questions but they're very busy people. They're very specialised and I find they're very helpful. They are willing to give me their time but I'm conscious of the fact that they are busy. 

I don't like to think I'm wasting their time. I do put my questions, but it doesn't have to be a specialist, it could be a mentor who could get the information for you, maybe by reading it. They do have medical backgrounds and they could discuss it with you.

During chemotherapy he became depressed and had considered suicide.

How did you feel emotionally?

Emotionally not too bad, not bad, very weak physically. When we mention emotions, generally speaking, I've been able to cope with my emotions pretty well. 

During the chemotherapy treatment, during the last three weeks of it, when I was very weakened, I did become quite depressed, even to the point of saying that if it was suggested that I have a fourth cycle of chemo, and bearing in mind I had three cycles, but I knew there was a possibility they might want to give me other cycles. 

If they'd said to me, 'You're going to need a fourth cycle" I was so depressed that I'd probably have said "no way, I don't want it, I'm going to let the illness run its course." Now it didn't come to that, they were satisfied with three cycles. I didn't even have to discuss that with the oncologist.

Would you have discussed it with your wife and family?

I did. I discussed it with my wife and my eldest daughter. We're a very close-knit family, and my youngest daughter wasn't excluded, she just wasn't here. I knew that my eldest daughter and wife would discuss it with her. We've been very open about these things all along. I should say that at that stage I had thought about suicide, you know, I had contemplated how I would go about it if it came to it.  

He is confident that when he reaches the last stage of his illness he will get enough morphine to control pain.

Generally speaking I found the pain control has been excellent. I've been lucky that when I had one-day surgery, say an endoscopy, they put the needle in me, gave me a sedative, I would go to sleep. Don't know anything about it. When I wake up I'm fine. 

When it came to the operation I had the epidural. I went out very quickly and didn't know anything about it until I woke up in the Intensive Care Unit. After the operation, the epidural was left in so I was being fed morphine. Accidentally it came out and one evening I was in pain for several hours, nothing too bad but I was in pain, and eventually they gave me a self administered morphine infuser which went into my arm and I had a pump, I expect you've heard of this before? 

You can't overdose or anything but I could give myself a shot of morphine when I wanted it. They were willing to give me analgesics, paracetamol, Tramadol, whatever, whenever I felt I needed it. If I was in pain I would ask for it. They kept a very careful record of course of what I was having to make sure I didn't overdose, and generally speaking they gave me what I wanted to control the pain. So I would say my general experience has been that the pain control has been excellent. I wouldn't worry about pain if I had to go through it again, it's been very good.

And what do you think about the future, you feel quite confident then about the pain?

I do, because during the last stages when you know, there will discomfort and pain around, I'm sure they'll give me enough morphine or whatever it is to control the pain. If I ask for it I'll get it. I like to think that and I do believe that will happen. I should say that if I find there is some resistance, I mean I'm not asking anybody to overdose me or anything, but if I find that they're not controlling the pain to my satisfaction, well then I will be aggressive about it and push them. I'm not reluctant to do that. 
 

He doesn't believe in life after death and feels at peace with the idea that his body will decay and contribute to new life as part of a natural process.

My views are very simplistic. As a person with a scientific background I know about conservation of energy. Energy is never lost within the Universe and I'm content to believe that I'm all part of a much bigger thing. When I say bigger thing I don't mean any supernatural being, I don't know how the Universe started. I do believe that sometime there will be a scientific explanation for it and I find that I'm sufficiently fulfilled to think that okay, I will die and as I said earlier, I will be recycled. I will go onto be a part of something else.  Whatever it is, it doesn't really matter. I'm not thinking of reincarnation or anything like that. I don't believe I have another life hereafter. In fact, I don't want to go into this too much. I don't want to upset anybody. 

These are very much my personal views which satisfy me, but the thought of a life hereafter makes me shudder to be honest.

I don't want a life hereafter. No, no. I certainly don't want that.

But from what you've said, because of your beliefs and because of the fulfilled life you've had, you can view the future with some sort of equanimity.

Yes I enjoy life. I don't want to die, who does? But I enjoy life very much. I'd like somebody to wave a magic wand and say to me 'Your illness has gone away. You've got another ten, fifteen years ''
 

Discusses the complex moral issues involved in euthanasia.

When we had one of our breaks we talked a bit about the country's policy and in other countries on what we call assisted suicide and euthanasia and I wondered if you've got a view of that.

I find euthanasia very difficult. I feel I've made it clear that when I'm in the terminal stages, I would like to have an easy death.  I mentioned pain, I'll refer to that again in a minute. I would like an easy death and from that point of view I think I would welcome euthanasia. 

Having said that I see all the complications of it and people who are at a stage of illness where they can't speak for themselves, a possibility of somebody wanting to get rid of their relatives, that makes me very nervous so although on the one hand I would like to see it to help me, I'm very hesitant about it, very hesitant.

As a national policy.

As a national policy whereas in Sweden they go now and, is it Sweden? It's one of the Scandinavian countries isn't it and you can go there and arrange, that makes me very uncomfortable you know. Yet on the other hand there was Diane isn't it, with Motor Neurone disease and there, there was that poor women obviously wanted to die and nobody would do anything about it. It's a conflict, I don't know, I can't deal with it, I don't know how you sort it out.

He made sure his will was up -to date and left notes on family financial affairs.

I wanted to make sure that both my wife and I had up to date wills in place. I wanted to make sure you know, as so often happens, wives don't get involved in the financial aspects very much. 

My wife does to some extent, I mean, numerically she's very good, she deals with accounts quite often, she's familiar with that side but she doesn't understand all the financial dealings of the family and I wanted to get that down on paper so that she will have a good understanding with my daughters of what the arrangements are.

I also had felt it was essential to get across to my wife and daughters the seriousness of the illness, you know, to the point of saying that well it's a serious operation. The cancer, the tumour can come back again. I feel sure that they know sufficient about these things to understand that I felt for my own benefit as much as theirs that they got that message.