Interview 15

Age at interview: 68

Age at diagnosis: 57

Brief Outline:

Breast cancer diagnosed in 1992, followed by a lumpectomy and radiotherapy. Sarcoma diagnosed in 2000, followed by double mastectomy.

Background:

Teacher (retired), married, 2 children.

After being told she had a sarcoma she was in a state of shock.

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 there's 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.
 

She was glad she would not become old and dependent on others but worried about those she would leave behind when she died.

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.  

He's 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 he's going to do without me.
 

She feels bitter that the consultant didn't recognise that there was something wrong and that she was indeed in pain.

I feel bitter about the consultant who I'd seen for the breast cancer not recognising that there was something wrong and that I wasn't making a fuss over nothing, that I did have pain there and he saw it. He actually saw the bruising, though none of the other people in the National Health Service Hospital did, because it had gone by the time I'd got there.

So if you could go back in time and think about how the consultant reacted, what now do you think would have been a better way of treating and caring for you at that point?

I think if he had recognised that what I was saying wasn't just me making a fuss. If he had recognised that I had, had pain and that there was something there. I came away that I was nothing, that I was making a great fuss over nothing and that I should go home and get on with my life and forget all about it. I couldn't forget about it, I had pain there. 

That's how I feel about it and I also wish that I had known that sarcoma was a possible side-effect of radiotherapy treatments. Yes it's rare, but nevertheless I would have liked to have known that that possibility was there and I would have dealt with what was happening to me in a much more positive way than I did.
 

With hindsight she thinks she could have explained the situation better.

I tried to tell my daughters by inferring rather than by telling them straight out because, remember, they'd been through the breast cancer once. They'd had to deal with that and I did tell them both straight out about the breast cancer. We went out one evening. We went to see both of them and told them. 

This time because the prognosis was so poor, I felt I wanted to approach it in a different way and tell them a little bit more carefully. So I sort of approached it by saying 'Well this is quite a nasty one.'  I told them what was going to happen, that I was going to have a double mastectomy because of this. I didn't tell them there wasn't any treatment. 

I told them about the chances of the chemotherapy not having much effect and I felt I wasn't going down that road anyway and left that for a while. This all went over several weeks as you can imagine.  

And then they began to question it themselves, I mean they're not stupid. They began to realise that I was very low and very depressed and in the end I did tell them what the prognosis was.

My younger daughter latched on straight away to what I was saying and yes was very supportive. My older one, I think because she'd just got a young baby, didn't really quite realise what I was saying and I didn't find that out until later when she'd talked to my other daughter and found out from her. I hadn't realised that I'd not told her properly and she was very upset that I hadn't told her. She thought; I thought I had.

So with hindsight I didn't do that very well. Maybe if she hadn't been tied up with a young baby she might have cottoned on to what I was saying but she'd got a new baby it was all very different. So that's one regret that I've got that I didn't do that as well as I thought I had. I've got no regrets that I didn't tell them straight away because I felt I couldn't tell them anyway, I was still in shock and dealing with it myself.

They've both dealt with it very, very well since, very supportive, very loving, very caring, I get lovely cards from them, they're, they're just lovely, I just couldn't have done without them, or my husband either for that matter.
 

She lost her faith when she developed sarcoma but now that she has survived two years she wonders whether God exists.

When I had the breast cancer I decided there was nobody up there, regardless. I did used to go to church, I was confirmed, I did used to take confirmation but I dropped it some years ago, but still at the back of me I thought yes there is a God. There are some good things in the world, but then the horrible things that are happening I think no there can't be. And then when I got breast cancer I thought no it can't be, it's just that. I've never thought much more about it until I got the sarcoma and then in a complete state of shock there is definitely not a God. 

I was quite convinced I was right, there was absolutely nothing. But you see time has gone on and I'm still here. I've survived my two years. So occasionally I'll say to [my husband] now, 'Perhaps there is somebody up there.' I don't know, maybe as time goes on I might change again.
 

She would prefer to die in a hospice for a number of reasons.

Have you thought about whether you'd like to stay at home or go in a nursing home?  

Yes.

I think about them, myself.

I think if the cancer got bad I would like to go to a hospice. My husband is not terribly practical when it comes to looking after someone who is very ill and I think that I would like, if it came to it, I think I'd like to be in a hospice where they control the pain for you, look after you.  

My biggest problem with thinking about death is not the actual dying because I can envisage that as going to sleep and not knowing anything about it like you go in for surgery. You have the anaesthetic and you're gone and you know nothing about it and you just don't wake up. I think of death like that.

What worries me is what's going to happen before, particularly with cancer because you hear so much about the pain. I've experienced pain, I've had the pain in this breast so I have experienced pain and that side of it does worry me in wondering how I would cope with it. So for that reason I think I would like to be in a hospice.  

I don't think I would want to come home to die. I think I would like to stay where I am because I think it would be very difficult for my family to come to my home, or for my husband to visualise what had happened. So I think I would rather... I don't think I would like to be in hospital. I would like to be in a hospice and I would like to be in a caring environment.

So are you thinking a lot about how it would affect your family? Where you'd be. You're saying you wouldn't want to be at home because of how they would feel?  

Yes. I think a) the demands of caring and b) thinking about my family afterwards. I think it would be very difficult for them to come to the house if my husband was here on his own, and they had seen me die here. Especially because we loved it so much I think I would want to be elsewhere.
 

Continuity of care and thorough follow up checks give patients peace of mind.

There's no continuity of care. Each person as they've come in to see me, until they read my notes have no idea what has happened to me. And now because I am, well, feel that again they are not looking beyond what I am saying that I am feeling well. The last check that I had which was only a month ago, to me, from the checks that I had before, was very cursory. And it makes me feel quite insecure in again a similar thought, sort of thing could be happening. So I am seriously thinking of writing to the consultant that diagnosed the sarcoma which is private and asking if I can see him again because I know that he will do a much more thorough check.

Yes.  Now we -

I'm lucky that I have private care. If I didn't I don't quite know what I would say because if I expect the people that have seen me under the National Health Service to spend more time with me than they do I am taking them away from other people who perhaps need them more. It's a difficult situation.

But what you're saying is you think you need that time to be given good care.

Yes. I think, for my own peace of mind because of the prognosis that I've got I feel now because I'm well that the checks are cursory but I can't expect them to do a CT scan every time I go. But its eighteen months since I had one now and I know that that picks up single cancer cells anywhere in your body.

So if you were able to say to a health professional, 'this is what I want for my care now.'

Hmm.

- you would be saying you want these regular check ups perhaps more thorough, more time given and continuity of care?

Yes.

Is that the main things?

That is but then I would feel guilty if... if I was taking time from people who need them more than I do. It's very difficult. You put it on a personal level but when you think about the effect it's going to have on what is going on within the hospital and with other people who need care you think well I'm being very selfish there's nothing wrong with me I'm fine. But for your own peace of mind I feel you need that little bit extra.
 

She likes the idea of a pill she could take to end her life if she were in pain and clearly dying.

I do like the idea of being able to take a pill if you've got to the end of the line and you're in a lot of pain and discomfort. So from that point of view yes but I still feel you've got to be well... you've got to be well enough and able to do it yourself, not to ask somebody else to do it for you.

There's a big debate about that isn't there, euthanasia and - 

Yes.

- mercy killing.

Yes. It's very difficult if you can't do it yourself but I think you cannot put that sort of pressure on one of your nearest and dearest to do it for you. I can understand why the people go out to Switzerland where somebody they don't know can give them the fatal overdose. But I still think you're putting pressure on somebody else to do something, for you.

Have you ever thought what you might do in a situation like that?

I think I'd just have to get on with it quite honestly, and I think if I was going to do it myself I think I would have to tell my family as well and get them to agree. If it got to that it would have to be at a point where I could see there was no return, that there was nothing could be done and it was just down hill and it was just going to be pain and then the death at the end of it. To just go quietly to sleep and just lose all that pain and angst. It really does appeal. I must admit.