Thoughts on recurrence, death and dying

While some people were optimistic and appeared confident that they would survive, others feared that cancer would recur. A few people were unsure about their prognosis, and expressed their thoughts and feelings about death and dying. One woman said that palliative care and good pain control can give people additional months to live.

Her biggest fear is the fear of cancer coming back.

Age at interview 56

Gender Female

Age at diagnosis 52

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What are your biggest fears and worries if you’ve got any at the moment?

Of the cancer coming back. I think anybody that’s had cancer because I never dreamt I would have cancer I don’t know why I just never, it never hit me that I would have lung cancer and even when I was having the VQ scans and I was having the bronchoscopy I thought at the most I would have TB. That was, I did lose an uncle to TB, I mean it was years ago but I did lose an uncle to TB. And I really thought that that was it. But I never dreamed it was lung cancer, I never. And it just, the bottom just dropped out of my world, it really did;

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He has a lot to live for and the thought of possibly dying relatively young, leaving others, is…

Age at interview 54

Gender Male

Age at diagnosis 54

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So what are your greatest fears, or anxieties?

I think it’s about life expectancy and I’m thinking, ‘Right, well I’m 54 now; yeah maybe I’ve got another 10 years but if I were to die in 10 years, that’s only 64. So theres a lot of me that’s thinking, ‘That’s not fair’, you know, ‘I don’t deserve this. It’s almost that sort of feeling. Leaving people before your time, I find that very difficult. And, and I don’t think, I’m not sure whether that’s going to get easier. But what that does and, and, and a fear of death. I mean, I think many people have a fear of death and I’m not in the slightest bit spiritual and I’m unlikely to become so. So I just see it as, as an end and the thing is if you’ve got a lot to live for, and I have, then you don’t like that idea. I don’t like it. You’re not supposed to like it. But what that also does is reinforce the determination to preserve your health, to look after yourself, which I was doing anyway. But it’s, it’s, it’s reinforced that even, even more;

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Says that palliative care and good pain control can give people additional months to live.

Age at interview 55

Gender Female

Age at diagnosis 50

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You said that you had a Disability Allowance, you said it’s available for anybody with a terminal illness?

Anyone that’s had a terminal prognosis, diagnosis, can get the Disability Living Allowance and that continues until death.

By terminal, I mean have you been given any likelihood of how many years or…?

No I wouldn’t even ask, I’ve never asked, it’s not a question that I’ve ever asked.

So why do you think it’s terminal?

Because cancer is terminal, that’s how it’s diagnosed and most of the doctors that I’ve met would never ever say if you asked how long have I got, they wouldn’t be able to tell you because they don’t know. I mean some people die within a few months, other people go on for years and all they’ve had is radiotherapy you know.

Yes so they might be better.

That’s right even palliative care, you know when they decide that they can not treat you any more because it’s spread too far for the chemo or surgery to do any good, or radiotherapy to do any good, the palliative care like giving morphine can actually get people up and about again and probably give them another 12 months. You know every case is so different.

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In November 2002, a patient was told that he might be dead by Christmas. He was confident that his treatment was working, but he told his doctor that if he were to need nursing care he would like to have a bed in hospital because he did not want to be a burden to his wife.

If he were to need nursing care he would like to have a bed in hospital.

Age at interview 57

Gender Male

Age at diagnosis 57

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Sad subject death, I know, but one that I don’t comprehend.

No, I don’t think any of us do. But you did actually consider it a little bit because you were thinking about your wife?

Well I had to because you know it’s rather like when I said get my house in order it’s no good blindly going on saying I’m not going to die and then leaving everybody in a turmoil and a mess. So what I felt I had to do from a logical point of view was put everything in order so that everything was in order should I die and then put that to one side and say I’ve done the sensible logical thing now let’s get on with living because I’m not going to die anyway. But just to please everybody else I’ve done the sensible thing. And I think it was, it was to please everybody else is my way of saying it but it was to care for and look after other people as well. To make sure for example that Margaret didn’t have to look after me and lift me up and down and watch me fall over and be ill and be sick and all that, I wouldn’t wish it upon her, I wouldn’t wish it upon myself, I certainly wouldn’t wish it upon anybody else. I probably truth known wouldn’t have even wished it on the nurses but I did say to the doctor, not in a nasty way, that they had chosen that for a profession, so I was happier with them dealing with it and they had to put up with the anguish, I didn’t see why my wife would have to because if shed have been able to be strong enough to put up with that she maybe would’ve been a nurse. That’s the way I looked at it, whether it was right or wrong.

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Some people were quite philosophical, reflecting that death comes to all of us. One said that at least he had had the opportunity to organise his life and his funeral and would not have to worry about old age and the stage of life when people become decrepit.

Reflects that death comes to all of us and that he has had time to organise his life and his…

Age at interview 55

Gender Male

Age at diagnosis 54

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Yes when you first get the news that you have got an incurable cancer it’s just numbing, you really don’t know how you’re going to cope, it’s, nobody wants to be a coward but when you’re told that you’re dying and theres nothing you can do about it you don’t want to be a hero either.

It’s, I suppose when the doctor looked at me and said that I was dying I could have looked back at him and said “Well so are you.” We are, all of us are dying but what they’ve actually done really is taken some years off me. But in the end everybody faces death, everybody. Not everybody gets the opportunity that I’ve had to organise my life and my death come to that. I’ve organised my own funeral, and if I’d have got killed in a car crash I wouldn’t have them opportunities. So I think you’ve got to be philosophical about it really and say that you was going to die anyway and you’ve lost perhaps twenty years may be. But, and they was probably the worst twenty years of your life anyway when you get old and decrepit and that, so I won’t have that to worry about.

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Another man had an admirable sense of humour. Thinking that he probably had a year or perhaps eighteen months to live he decided to hold his own wake for charity. Still alive months later he organised another ‘do’ which he called his Still Awake Wake, collecting more money for Cancer Care.

He held his own wake and collected money for charity.

Age at interview 59

Gender Male

Age at diagnosis 58

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This Cancer Care people they, as I said before forty percent of their funding comes from the health trust and the other sixty percent has got to be raised. I was out one night talking to a friend of mine, I won’t use the language I used that night but what the situation was he sort of laughed and he said “Oh were going to have a good party when you go,” and I said “Oh yeah you probably will, lucky lot of so and so’s. And we sat there generally chit-chatting and it came out that that night I decided I would hold my own wake, and this we did. So we had a nice little wake on 5th January and I charged ‘5 a ticket for people to come. And we had some music and we had a little bit of food but we raised ‘900 for Cancer Care.

Oh that’s good.

So that was quite good and they were obviously over the moon. And then as time went on in the summer we had, as time went on in the summer I decided just to have a charity night and we raised another few hundred quid. And September of last year I’ve had quite a few good people saying “Oh when we going to have another do, when we going to have another do,” so I thought okay fine so let’s have another think about this. So I decided to organise another do and call it my Still Awake Wake. So we had a country and western band and loads of people, my friends and business associates donated prizes and we had a draw and we had seventy odd prizes in the draw and everybody had a jolly good night. And that night we raised ‘1180 for the Cancer Care people so they’re actually over the moon with that.

Excellent.

But again it was just my sense of humour really.

But now they’re on about when are we going to have the next one so I said “Well you can only have so many wake, wake, wakes can’t you?” so the next one I’m going to be sixty in July so I’ve decided to have a sixtieth birthday party and just have a charity night and raise a few more bob for them. But it’s just this still awake and awake and my waking wake was just a bit of fun really. I must admit it didn’t, there was quite, a few of my friends, not many, but just a few of them said they’d buy a ticket but wouldn’t come because they couldn’t see the funny side of it.

Oh that’s interesting that you can feel theres a sense of humour in it but other people perhaps can’t?

Well I think everybody is different aren’t they, everybody has got their opinions about this, that and the other. I’ve got quite a good friend, hell donate prizes and hell buy a ticket but he won’t come, definitely won’t come.

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A few people worried about the manner of their death. One woman, who had watched her sister die of cancer, was not convinced that pain could always be controlled and hoped that her family might help her die peacefully if the quality of life became intolerable. However, others were confident that pain would be controlled. One man was reassured that there are now health professionals who specialise in pain management. He was determined to die with dignity.

If in future she suffers uncontrollable pain she would like her family to help her to die.

Age at interview 59

Gender Female

Age at diagnosis 56

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And one thing which does really worry me is the pain, not suffering to get better, but suffering if, you know, if I come to [a] stage where they cat do anything for me. And I have asked my children and my husband to put me out of my misery, because I don’t want to suffer, and I’m sure if they think enough about me, thell not let me suffer. Because I wouldt let any of mine suffer. And I don’t think it’s necessary. Because if doctors know that yove come to state of no return, then all yore doing is suffering, then I honestly think they should give you a needle.

Have you ever brought this up with any doctors or nurses?

No. I have with me family, me family know how I feel. And I think it’s because I’ve a cancer, you know, because I watched me sister die with cancer, and it’s alright people saying they can control it. Through my experience of it, I havet seen where they can fully control it. So nobods convinced me yet. And if my, I come to stage because my cancer comes back or whatever, I don’t want to live. theres no point, because yore putting your family through agony as well, just watching you day by day, and I wouldt want it;

How have the family reacted to all this?

They havet, actually, theve just listened to me. Theve never commented yes or no, but I would hope that something has sunk in. And I do feel that they wouldt want me to suffer, I know that, and I know that my children wouldt. And I know that they couldt sit there and watch me suffer. they’d have to do something.

Is that your main worry, or fear?

that’s my main worry about cancer. I just hope that it never happens, but you never know whas going to happen, do you? But les face it, having cancer, it does put in your mind that a tims going to come when yore going to suffer. But I honestly think in this day and age, when people have come to that stage, it shouldt happen;

I think that if my quality of life is good, they can, ll have as much treatment as they want to give me. But when my quality of life has finished, that’s it, I want to go. While I can walk about and do what I do and, you kno But as soon as that’s gone, that’s it. End;;

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She is not afraid of dying and does not expect to suffer any pain.

Age at interview 55

Gender Female

Age at diagnosis 55

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So what’s your whole view of the future now?

It’s a funny one because you don’t know, it’s nothing to do with the cancer in a way it’s just to do with knowing that, well knowing but not knowing that you’re dying. I mean were all dying, we all know that and it’s this, it’s sort of I want to get back to where it’s Monday, not Monday I’ve got cancer I’d better do this because that might happen. And I’m not quite there yet it’s sort of at the back of your mind, and probably at the front of your mind actually (laughs), it’s just there all the time that you’re thinking, no that’s too dramatic. In some sense it’s hovering round you, not that, “Will I make it to the shops?” or anything like that, I mean I know that isn’t how it’s going to happen but it’s, it’s for example Christmas is coming and I’ve organised what I’m doing for Christmas but theres a bit of you that when you make plans like that there is a bit of you that’s thinking, “But what if?” I’m very much not a, ‘But what if person normally so that’s quite odd. But I’m not, I’m not, I’m not frightened of dying at all and I think that from what I can understand the manner of going won’t be painful because you’re, they won’t let that happen, they’ll make it not painful.

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He was reassured that there are health professionals who specialise in pain management.

Age at interview 67

Gender Male

Age at diagnosis 66

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So did you start looking for more information about lung cancer after you had the diagnosis?

Yes I did. I read a couple of books and read a load of leaflets and it was really at that stage that I sort of made up my mind well, I’ve got two options I can sit down, do as little as possible, be waited on and wait for the cancer to take me out, or, I can pretend I havet got it, knowing full well that I have, and try to live my life as normally as possible and do what I’ve always done, and that’s a decision that I took. It was one of the reasons why no one was told other than my immediate family, the children. And they were desperately upset when they found out. Theve come to terms with it, it’s a bit of a catch 22 because the more I carry on as normal perhaps the less serious it makes it appear to them and perhaps when the end comes it might be more of a shock than it might have been. The difficulty with cancer is knowing how it’s going to take you out at the end. I mean obviously your condition is going to deteriorate, I assume yoll get more and more breathless, that yoll be bedridden, perhaps that’s a slower introduction into the final end for the family. But I believe there are other occasions when perhaps it could create a heart attack and I’d just be gone, which would be better for me.

Mmm, have you ever asked people about that sort of thing?

I, in addition to all my hospital appointments and out-patient appointments I see my GP on a three monthly basis to see how I’m going on. And we had this particular discussion because I said "Whas going to happen when the hospitals can no longer give me any more treatment that’s going to benefit me, will I be sent back to you to be finished off?" That was my particular terminology to him and it actually made him laugh which was quite good and he said,Yes And I said, "Well the only concern I’ve got with that is I’ve heard the most horrendous stories of people being in hospital in the late stages of cancer, morphine has run out and theres no doctor to sign any more morphine, to sign a prescription form and people are laying there actually screaming and wriggling in agony." He did admit that hd heard those particular stories himself but there is now specialists who are specialists in pain management and certainly they would be involved at the end. It again begs the question how long have you got? I think from radiotherapy they reckon one to five years. Wre all individuals you cat tell.

Mm.

So what I do is I live every day, not as if it’s my last day but just every day as I would normally live it.

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Some hospitals routinely offer all cancer patients the opportunity to meet the palliative care team and a visit to a hospice. However, some people who are still being treated for lung cancer do not want to visit a hospice, even if the prognosis is somewhat uncertain. One woman felt upset and angry when she was invited to visit a hospice at a time when she was feeling quite well. Another woman hoped that she would be able to die in her own bed at home, but made an appointment to visit a local hospice just in case nursing care was needed. She felt reassured and relieved to find that the hospice was a ‘wonderful place’.

She was very upset when she was invited to visit a hospice.

Age at interview 55

Gender Female

Age at diagnosis 55

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And then you went on to see the consultant about the radiotherapy, and you said how devastating that was?

Yes.

And can you say a little bit abou you said there was somebody else in the room. Can you say a bit about that, you havet mentioned that before?

No. There was a person there, a lady. I cannot honestly remember if I was asked permission or not, or, I mean they must have said who she was but I really wasn’t taking it in. And afterwards she took me to another room and, she was a special cancer nurse from a local hospice, which shocked me quite a lot. She offered me a long weekend in the hospice, which, you know, I was just, well, I was very shocked with the whole thing;

I think she used the wordwhe I need medication I can go into the local hospice for about seven days while they work it all out, which to me was an awful, awful shock because I was not ill. Why would I want to go into a hospice? I was not on any drugs, so there was no way that I felt ill at all. I was coping with things, so, quite, well, I dismissed it completely. But it broke me. I’m not a person that can easily be broken but it actually broke me, and coming out of the hospital I was very, very, very upset thinking that I was going to die the next week. The following day the hospice phoned me up, a different person, asking me if I’d like to go and meet the staff at the hospice, which again I replied, no. I’m too strong, you know, this was too sudden, no one had explained anything to me, why would I need to go to a place like that? So the answer was no. It did almost totally destroy me, I lost quite a lot of will at that time;;

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She would like to die at home, but knows that her local hospice is a wonderful place.

Age at interview 62

Gender Female

Age at diagnosis 55

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Do you ever think about the future, what might happen, does it worry you a lot?

Only I’d like to know but once again none of us know. In the very beginning when I was first diagnosed my GP suggested that I put my affairs in order and that I make arrangements to go into a hospice. And once again I was angry, indignant and said to him “Well if that’s going to happen, but it’s not going to happen, I want to die in my own bed, you’re not putting me in a hospice.” So he said “Well you will need three people.” I said, “Well am I going to be that poorly?” he said “No people only work eight hour shifts,” which I thought was putting me in my place (laughs). So anyway I did come home and sulked and I thought I’m not going into hospice but I relented because I decided I didn’t even know what the word meant, I’d never been in a hospice. So I made an appointment to see the matron and I went down and I was amazed at what a wonderful place, wonderful people, wonderful nursing staff and I feel very relaxed, if I did have to go in to a hospice because I’m on my own, I could now accept that. But so far I’ve escaped that. And worrying about the future I’d like to feel that when the time comes I am here at home in my own bed and that I can just close my eyes.

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Financial help

People with lung cancer may experience financial hardship, and are usually entitled to one or more government benefits, such as Statutory Sick Pay or Industrial...