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Living with dying – a personal story (video transcript)

Being diagnosed with a terminal illness is both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.

The patient aged 50, was diagnosed with breast cancer in 1995 aged 42. She was treated with a lumpectomy, chemotherapy and radiotherapy. In 2000, she was diagnosed with secondary tumours (metastases).

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Please note...

This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.

healthdirect doesn't endorse any personal opinions expressed in the video, and we recommend you discuss any questions you have regarding unfamiliar terms or descriptions, as well as how this experience compares to the Australian health care system, with a health professional.

Video transcript

She questions health professionals and patients about their opinions on treatments.

I am a great believer in asking questions and I will ask the same question of different people - the same question, to see, you know, what different people's opinions are. 'Cos a lot of the time, things like you know, treatments for breast cancer or, the other things, a lot of it is scientifically proven and all that, but a lot of it is 'this worked for me', that sort of thing.

And I think, different doctors and health professionals have had different experiences, they've all got something different to offer. But I do ask a lot of questions, I've always asked questions. I ask other patients questions as well, because again, sometimes they have got information that the doctors haven't got, like side effects.

She worries that she has painted a picture of the situation for her children that is too positive.

I've always tried to be as positive with them as I can be because my mother died when my brothers were 9 and 13 and that destroyed their lives. Actually, my mother dying... When they did, and I think I've been so conscious of that for my own children that probably I have been too positive sometimes, actually. I don't think I'm probably as realistic as I ought to be with them which is perhaps why they don't appear to be that worried... actually... thinking about it...

Are you saying you think you should have been different to what the way you've been?

Well, I'm wondering now. It hadn't even really struck me till then, that maybe by being more positive about things and not making a fuss about being in pain or because I've been ill or something, maybe I'm doing them a disservice, because I'm actually giving the impression that it isn't that serious! I think that might be the case. Because I know how it affected my brothers when my mother died, and I worry a lot that you know if I died it would affect my children in the same way as it affected my brothers. And it did effectively ruin their lives, I mean, it really did.

Not just my mother dying but lots of other things as well. There was lots of other things going on but that was sort of a pivotal point, I suppose. So I do worry about that. So I think maybe I do, I mean, they know I go to the hospice. They don't know why I go to the hospice, 'cause isn't that for dying people, and I said "well no, no, it's..." and I've told you the sorts of things I've said.

The breast care nurse helped to explain things to the children.

With my own children, because as I said to you before, they are very bright, they pick up on things very quickly. We've always been a family that actually did talk about things. At one time I worked as a family planning nurse and we used to talk about sort of some of the taboo subjects as dinner table talk, like sex and you know, contraception and things, and so when I did speak to them about it I found it quite easy to talk to them, though I did make the mistake of not telling everybody everything right at the start, because I thought the youngest one was too young.

I think really, you've got... It's difficult, it depends on the patient, it depends on the children really. I'm quite articulate, my children are quite bright and quite articulate, so you can talk to them about most things, but not everybody is articulate themselves.

And despite all of that when I was first having treatment for breast cancer I did actually get the breast care nurse where we used to live to come and actually talk to my children about the disease and answer any questions or worries that they had.

And I found that quite helpful for me but also I think they found that quite helpful, and I think that they put their minds at rest and we didn't talk about things a lot after that.

She enjoyed her week in hospital where her pain was controlled and where she was given blood for anaemia.

And as I say I had some radiotherapy on my spine. I had a week in hospital which was actually quite nice, because I was in so much pain which wasn't controlled and I was very anaemic.

They gave me a blood transfusion, got my pain under control and I just had a lovely holiday in the hospital. Cos I had a single room, the sun was shining, I had some sewing to do and I had lots of books and I just had a really nice time. I didn't want to come home; I was quite enjoying it there. But now that's why I feel better, because they've sort of sorted everything out.

Some of the nurses at the hospice are quite religious but do not push it on those who do not want religion

You laugh a lot when you go to the hospice. You spend a lot of time laughing. And some of them, the nurses, are quite religious and that's why they're doing it, but they don't push that down your throat at all. I mean they have the service but you don't have to go to that if you don't want to and I certainly never do. They provide all sorts of activities and because the one I go to is a charity if someone sort of wants to do something, if they can do it for you, they do.

You know, they... if someone says, "Oh I really would like to do such and such" if they can organise it, it's organised.

They have lots of different groups like I go to the creative writing group. I know there are other discussion groups and art groups and things, but the creative writing group... the tutor who runs that is absolutely fantastic. I mean, I don't think that group would be as good if it wasn't for her. She really has made this group - I think she's a wonderful tutor and a wonderful person, as they all are.

I have nothing bad to say about the people at the hospice.

Discusses the needs of carers and suggests that support is not available.

We were talking about [different sorts] of carers on Monday night at the group and the different way that people cope with your illness and we all agreed that actually being the ill person was actually the easiest part of that sort of relationship, because you're ill, you're going thorough it, you know how you feel. And, you're quite selfish in some ways cos you're thinking about yourself whereas your carer has to not only worry about you, but about their own feelings, how they want to look after you, support you, keep bad things from you all that sort of thing.

Its actually much more difficult for them and there's nothing for them, there's no support for them. I think that would be a good subject to use for your thing on the internet. You know, support for carers, because that's a huge problem isn't it? And we talked about it and I said, “Nah, my husband gets upset if I make a noise, if I go, 'Oh' like that, he goes, 'You alright what's hurting?' “, and I've got so many aches and pains that an involuntary gasp like that is quite a regular occurrence. And he gets so upset and I say, “Oh, it's nothing, it's just my foot or my wrist or...” and he said, “Oh I thought it was your arm or your back” and then he gets himself in such a state.

Describes chronic ill health and many aches and pains, but still feels quite good.

At the moment, cancer wise, I actually feel quite well. Better than I have done for a long while because I'm not anaemic anymore which I had been on and off. Quite, quite anaemic. But I'm plagued by all sorts of other aches and pains which drive me crazy. I've got problems with my feet, my ankle, my shoulders, my hips, my hands, my wrists, my fingers, and at the moment I find that that sort of chronic ill health, which is in itself none of which is very bad, drives me crackers basically. I mean, it's almost more important to me than the cancer problem, because the cancer problem isn't such a problem.

But all these other problems I have are. And though I feel very well, lots of things are very difficult for me at the moment and I do get very tired. I had to give up my studies, I'm unable to work which is a mixed blessing, and... but despite all of that actually, I feel quite good at the moment, and I'm feeling quite happy. And I'm involved in lots of different things which I wouldn't have been involved with if I hadn't have had cancer, and I've met a lot of different people, and my life has changed. And not all for the worse. A lot for the better.

Since she became ill she has learnt to paint and write poems and has become involved in many other activities.

I always said that when I had breast cancer originally, although it was an awful experience a lot of good came from it. A lot of people with breast cancer have negative experiences about when they're ill, in that their friends or relatives can't cope with the situation and get very upset or won't talk about it. I actually found the opposite.

People I hadn't seen for years came and knocked on my door and said, “I heard you were ill”. People sent me flowers and cards and letters and things. And it was actually quite humbling to see how much I actually got, people I didn't even think would bother. It was great in that respect. I wish I hadn't had breast cancer to find all these things out. And then, this thing about, you know, I'm going to die sort of thing, because of that I had an arrangement that I would go to the hospice, one of the local hospices one day a week. And I go on a Thursday. And they chose Thursday's for me because they have a creative writing group there, and they thought that would be something that I would like to join in, and like everybody else who joins the creative writing group, I wasn't really sure what it was. I thought we might be writing short stories or something nice like that, no, no, no, no, no. Nothing as easy as that.

Its not a very big group, at the moment there's only four or five of us, but, because we're in that group lots of things happen to us. We get involved in lots of other things outside the hospice. We've been involved in the production of a book. We've even beem printed in a book, with other people with terminal illnesses. We've been involved in an art project with the local castle museum. We've had art work on display there, its still on display. Some of us were interviewed for a television program to do with the art thing. We've also been involved now with another art gallery, in town, with photography. We're doing lots of photographs up at the hospice of different things to do with the hospice and different people. That's going to be in an art exhibition, that opens in September.

I'd have never have done anything like that. You know, I was a busy woman I worked.When I first had breast cancer I worked fulltime. I had four children, my life was very busy. I didn't have time to do things like that. And I've written poems and done painting and you know, done lots more sort of arty things at home that I'd never done, or had time to do before.

The experience of being ill has given her much more self-confidence.

One other thing about being ill is that you have to talk to lots of people about very personal things.

You have to talk to health professionals about your body and all that sort of thing.

And I've just realised that, I just said to you I'm very shy at parties and things and I don't cope very well, and its just made me realise that in actual fact, since I've been ill, because I know that my life might be limited and I do feel a bit like I must go out and sort of grab things while I can, I think it gives you confidence actually to talk to people because I can say silly things or get embarrassed and I can just say 'oh, it's the tablets' you know?

I take all these tablets. They make me go 'wheurgheurgh' and I can get away with a lot of things that I wouldn't even have dreamt of attempting before. And, so it's sort of given me a confidence and I said this to my counsellor a couple of weeks back.

I don't think that I'm scared of anything now. I mean, I find some things very scary and there are lots of things I would be apprehensive about, but I'm not scared of any-thing. I'm not even scared of dentists or spiders any more, which is quite good. And it's almost as if you're worst fears have been met, so you don't have to worry about them anymore.

Hmmm. It puts things in a different light.

It does a bit. It does. It puts things in a different light. And so it is easier to go out and meet new people and do new things because you have to do it sometimes. And you manage all right, so you might as well do it other times as well. So I think being terminally ill has actually given me a lot more self-confidence. I think so.

She enjoyed her support group for women with advanced breast cancer, finding it better than telephone support groups.

What does the group call itself?

ABCD

What's that stand for?

Advanced Breast Cancer Discussion group I think. I mean we did talk about names but we didn't really come up with a name.

But it went really, really well, and the people facilitating the group fortunately kept a sort of a list of what things came up, so they could steer us a bit, cos we got quite sort of heated, really. It was wonderful. When I compare that with the telephone group...

Why doesn't that work so well?

Oh, I don't know. I think... I'd just been diagnosed with the secondary cancer, and a lot of the women on the group... the phone group live all over the country. All ages, but all have been quite ill, a lot iller than me, well, in my, in my opinion, a lot iller than me. Some very ill. In fact one of them died while the group was in progress and after the first couple of weeks I thought 'oh this is good, this is helpful'.

Then I started to think 'Oh God. Is this what I'm going to have?' And of course it was all fairly recent. I started to worry and then I decide I didn't like what was happening. I stayed 'til the end, and I think I participated, and I think I contributed you know, quite well to the group, but I think the fact that you can't see people's faces... If you're going to be talking about things like that... I can't even say in... anonymity can be good in some respects, but I think when you're talking about life threatening things and death and all that I think you have to see someone.

You can't do it over the phone. You can't. You have to see their faces to know how they're responding to what you're saying. And I wouldn't do it again. And I wouldn't recommend anybody I know doing it either. That was just my... thing. I know other people don't find it like that I'm sure, because it’s not just a one off. That's been an ongoing thing I know.

Explains how a counsellor helped her to talk about things that worry her.

You just mentioned you talk to a counsellor.

Yeah.

We'd not talked about that before had we?

No. Sorry. Well that was another thing. At the hospice, despite going to the hospice and you know, being there, it's not a place that its easy to have quiet conversations. I mean, you can go off into a little room and things but quite... honestly there's not a lot of time to go off and have quiet conversations for any length of time.

I do still get quite sort of dazed when I feel really, 'Oooh, woe is me', you know, and my life is ruined and all that sort of thing which I think is quite normal and I have bad patches. They arranged for me to see somebody, a counsellor, who I've been seeing since November, just for an hour a week and I find that very helpful. She tries to pin me down and talk about things that worry me. And like I said, I protect my family and my partner, and you protect yourself as well really and you try not to think about things if you think they're going to be upsetting.

Do you talk about that to the counsellor?

Yeah, yeah.

Do you find that you can go beyond things? You know, cos we were talking earlier and you were saying there comes a point where you don't want to think any more.

Yeah.

So do you think you're getting pushed a bit too far?

She's got a good memory, so if I don't want to talk about anything more she remembers and brings it up later

Do you mind?

No, because sometimes, by mentioning it briefly something that is frightening, by mentioning it even if you don't go into it deeply then, it makes it easier to approach another time.

More information

Learn more about how to cope with terminal illness in our end of life section.

Source: healthtalkonline.org (Living with dying, age 30-50, interview 13)

Copyright: ©2013 University of Oxford. Used under licence from DIPEx. All rights reserved.

Last reviewed: February 2013

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