Interview 17

Age at interview: 58

Age at diagnosis: 56

Brief Outline: Diagnosed with cancer of the kidney in 2001, with metastases in the lung and bone. Treated with surgery, Interferon, and radiotherapy (to bone), and also complementary therapy.

Background: Educational psychologist (part-time), divorced, 3 children

She was glad to have honest answers to her questions but would have liked to have some positive suggestions.

Well that was in November and as soon as I started on the treatment, actually, I did improve. But when I went to the hospital where they gave me a thorough going over before I started on the treatment, it was... I asked the chap who was extremely nice, I must say.  

I took a friend with me which was a good thing to do. She insisted on coming and she wrote down anything because when you, I think I was there for about two hours actually, when you have a long interview like that you can't always remember everything that they've said. 

But I did say to him, I'm not sure with hindsight whether this was a good thing or not, but I said, 'I really would like to know what the prognosis is going to be because I have three children and their father's dead already so, you know, I need to get my affairs sorted out".  And he said 'Well, could just be just a few months or it could be more. It could be up to two years'.  I said, 'Is that the best I can hope for?'  He said, 'Well that would be a good outcome'. So that wasn't very cheery news to say the least.

But I think what it would have been good if he'd said, 'But there are lots of things that you can do too, you know, yourself and you can probably, you know, get the best outcome by trying to be positive about it, by keeping yourself healthy. You might want to try relaxation or meditation or and so on'.  
 

She felt fortunate that she could benefit from expensive treatment.

Before I forget I must say as far as I am concerned, don't knock the National Health Service because I do feel tremendously fortunate to be having what I understand is a very expensive treatment. 

And even more fortunate I suppose that I have responded well to it. Some of that might be to being prepared to put up with some quite unpleasant side effects but over time those have diminished and I do feel lucky because I think that they don't use the treatment for elderly people because I suppose, frankly it's not cost effective to pour huge amounts of money into somebody whose life expectancy is not very good anyway. Or who hasn't perhaps the strength, to cope with the treatment.
 

She tried a number of complementary approaches including Reiki.

Well, I mentioned the cancer support group that I go to and three or four of the ladies there are trained Reiki healers. So there, at the end of the morning we sit in a circle. We all hold on to our dressing gown cord... actually a cord that's in a... binds us together as it were and close our eyes and light a candle and its all very peaceful. And they go round us individually putting their hands on our shoulders and you know... as I understand it. I don't really understand it to be honest. 

But they are using themselves to transmit cosmic earth energy or whatever you like to call it which seems to have healing powers. Now, as I say, I'm not... well I think I am quite a spiritual person in a way but I would have been quite sceptical about that but now the attitude I take is, 'Look I've no idea what's doing me good here but something is'. 

So I keep on doing all of them as best I can because I don't want to, you know... it would just be my luck to knock out the things or stop taking the vitamins... I can remember a friend who had a very serious illness and she wasn't particularly well off and she used to say, 'I spend, I think it was '20 a week or '20 a month on vitamins'. And I remember thinking to myself, 'well good for you but you're probably wasting your money really' because she had a terminal illness and indeed she did die. 

Well I now do the same thing myself really and it means I am silly but I don't know. I'm really happy to swallow down several different vitamin tablets in the hope that that's improving me.And I have to say I do some of these things without the advice of my GP or any of the others. I haven't particularly said, 'I'm taking these'. That's why I think it's a good thing to have this sort of [information] available on the Web because if you live where I do, you almost certainly wouldn't have advice about diet, vitamins, healing... acupuncture I haven't tried but I might. 

So you know I sort of take the scatter gun approach and think 'well I'll do all of them because I don't know what's doing good.'  And the other thing is, I suppose, because you're feeling that you're doing something to help yourself, probably does help you.

Says she is probably a humanist but finds it comforting to know that others are praying for her.

Yes. I think probably I'm a humanist. I think I'm a philosophical person in that I'm not the sort to think everything, 'Why me?'  I would prefer to think, 'Hey, lucky me, I responded well to the treatment and so on'.  I don't... Yes I have found it comforting, for example my plumber is a friend of my son's and so he happens to know about the illness and so on. When he came, he said, 'Oh by the way, just to let you know that, you know, we are ' God people' we are". Or something, he said, "And I do pray for you every night. And my two kids, they say who should we pray for tonight", and he says 'Pray for [name] and [name]'s Mum.

And I thought, 'How lovely'. And somebody else... and then this plumber's Dad who was also a plumber told me that some people in St Agnes that he knows well, who I don't know from Adam, they have never met me but they pray for me every night. I thought, 'How lovely of people, really'. And my friend, who is a Methodist minister said, 'You know, if you want me to pray with you any time, you know I'll happily do that'.  And I said, 'Oh no, I don't think so. That's kind of not me'. And she said, 'Oh that's fine'. Well there might be a time when I would like her to pray with me, I don't know.

I suppose my philosophy is that people are the most important things and that we are actually here on this earth not only to enjoy ourselves but to try to make life happy for others. And I like looking after people and doing things, cooking for people and so on. I can't do so much of that now. I also love life really. I don't have any belief that there is any afterlife, though sometimes I kind of wonder because some people report strange experiences of hearing from their mother or whatever from beyond the grave as it were. But personally I think you know, 'You're here, you've got one crack at it and when you're gone, you're gone really". 

So I suppose part of my aim is to leave behind me, if I can, a legacy of happiness for my children, my friends... and to enjoy all the beauty and glories that are around us in the world, really. Now... some days that's easier than others, as I say. I like fine weather and sunshine and when its pouring sometimes it's a bit more difficult to be uplifted.

She intends to make a 'living will' because she would hate to be resuscitated if she were 'on the way out'.

Earlier you said you had some opinions and thoughts about the 'living will'

Yes, yes. Actually when I went to remake my will shortly after having my diagnosis, I asked the solicitor how to go about making that and he wasn't all that sure but he kindly researched it on the web and gave me some printed forms which to be honest I haven't filled in though it is my intention to. 

I was thinking last night in the concert 'ooooh you know, I want to be here in this lovely world as long as I can be'. That's with the proviso that once my quality of life becomes so poor that I am in pain and I can't do anything or whatever. I certainly don't want to be kept alive just for the sake of it. So I must get on and do the form. As I understand it at the moment, making a 'living will' doesn't have any legal force but my GP suggested putting one everywhere that I could think of' with the solicitor, with her, with my children... so that if I am taken into hospital at any time or unconscious or whatever, they are likely to know.  

I definitely don't want to be resuscitated if I am on the way out. I can think of nothing worse really. I have to say, now we have been talking about, 'Can I be frank with my children?' I would certainly give a copy to my daughter. I suppose, I could broach it with my sons but I would slightly hesitate 'cause I think that would worry them. So maybe I'll put it with my GP and in my hospital file, I suppose is another sensible place, with the solicitor.
 

Describes her mother's final illness and hopes that the law will change to allow euthanasia so that she can die with dignity.

Oh you mentioned earlier, I think about whether you wanted assisted suicide. 

It's a topical subject at the moment isn't it?

Yes, yes. I think I would love it, if I could, it would be a comfort to me to think that when I've come to a point where I'm clearly dying, I'm not, you know, there is no further treatment available for me and I am... if I am in lots of discomfort. 

I would like to be able to say, 'Can you get my kids to come and see me and maybe," I don't know, my friend [name] that's a minister and "Say goodbye". And then can you just do it to... what has to be done. Give me an overdose of morphine or whatever it is.  Because actually my Mum was in hospital for about three months before she died.  And she had sort of raging osteoporosis having taken lots of steroids for another condition. She was in terrible pain and she had made a living will actually. 

They had to give her so much morphine in the last few weeks, to be honest she was talking rubbish and coming up with ideas. She told us there was something she wanted to tell me and that she had murdered twelve children. And I said, ''Oh Mum, you know that is your mind playing tricks because of the drugs. You haven't murdered anybody'.  

But she still insisted that she had.  And I don't... I just wish that she could have gone a month or two earlier before she went through all that indignity that is dying really. And I would feel the same about myself. You know, I do (think) that life is very precious and it's a wonderful world and I want to stay in it as long as I can providing I have some quality of life and as far as I am concerned, you know, clearly there has to be legal agreement and so on but I do hope that some legislation comes in before my time is up.

Can you tell me more what you think the word and the experience of dignity means?

Yes. It's in kind of practical ways I think. I can remember my Mum being sort of hoicked out of bed and she couldn't stand herself, and plonked on a commode behind the curtains and then her visitors would arrive and she would be... she was with it enough to be terribly embarrassed. 

I just think when you've come to that stage, only you know when that is, how bad that has to be. You don't need to go through those sort of physical indignities of you know, throwing up, being smelly, being incontinent, whatever it might be. I don't really think about that kind of thing but that would be depressing.