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Living with dying

Roller coaster feelings when you have a terminal illness

People often experience strong emotions when told that they have a life-threatening illness, or that their life is limited (see also 'Own reaction to hearing that life would be shorter than expected').

During subsequent weeks and months feelings may include denial, disbelief, guilt, anger, sadness, despair, resignation and calm acceptance. Some of the people we talked to described having been through different emotional 'stages'. But there is no clear pattern' several feelings may exist at the same time, some may not arise at all and fluctuations in people's feelings are common.

 

Talks about different emotional stages that people with terminal illness may go through.

Talks about different emotional stages that people with terminal illness may go through.

Age at interview: 75
Sex: Male
Age at diagnosis: 73
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Everybody's got a different belief about life and so forth and I get a great deal of comfort from having been with other people who've been ill and died because they've been utterly practical. When you're in this sort of situation there's nowhere to go. It's no good sort of backing off and thinking, 'It isn't going to happen to me', because it is. So it's, the best way is, I feel, is to come to terms with the illness and hopefully that it won't be too painful.

Can you tell me more, what you mean by, 'come to terms with the illness'? 

Yeah, it isn't... I mean people go through... I can't remember them but there... they... it's said that there are five stages' One, that you disbelieve it, that you can't, that isn't, 'No they've mixed my diagnosis up with someone else's'. Then you become angry and say, 'No, no, no, no, I'm, I'm not ill, I'm not ill'. And then another one I think is that you grieve, not for yourself but for other people, relatives maybe. And then there's an acceptance which is I think probably where I've got to at the moment. And I've always had the feeling that material things are not that important. I don't get a buzz out of a big car or big house or anything. I think we don't come into the world with anything and we certainly don't go out with anything. We're just custodians while we're here. So that's where I get quite a lot of strength from, I think.

One man explained that he found denial was inevitable at first “It's not until it gets really, really bad, like it's getting now with me, do I realise it is really, really, happening”.

Many people felt angry, especially if their symptoms had not been taken seriously or if they suspected that they had not been given the most appropriate investigations or treatment.

 

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

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

Age at interview: 68
Sex: Female
Age at diagnosis: 57
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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.
 
 

She feels upset that she was not offered a CT scan earlier and that the emotional side of her...

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She feels upset that she was not offered a CT scan earlier and that the emotional side of her...

Age at interview: 61
Sex: Female
Age at diagnosis: 59
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You say that you feel let down.

I do, I feel very let down because the last few months I have discovered this - well I've always... I've heard about a CT scanner and didn't realise what it did. 

I just feel that maybe that option should have been there earlier, and could have been there earlier, except that the cynical side of me says that it must just come down to cost. I understand that the majority of women that are treated for breast cancer it's successful treatment. I suspect that the percentage that slips through is actually very small.

Did you ask if it would have been available to you?

I haven't asked. I only received all this information about four weeks ago and it's initially you just try to take on board what you've been told, I mean the questions sort of come later. I haven't asked as many questions as I should ask because part of me realises that they're not going to be able to help me so what now is the point of having a post mortem on it all.  

There's little point in finding out what they should have done because they didn't do it and they can't do it now to help me anyway. I'm half way through my current chemotherapy session. It's obviously not controlling the cancer yet because I'm still building up this fluid and I've got to go into hospital again next week to have it drained off.

And when I saw the oncologist yesterday I said I'd like to go in again and have it drained off because I'm convinced that it is actually slowing and I, it would help me psychologically to see it disappear and then I can better see how much is being produced each day'and he just said to me, 'You know don't bank on it, it probably, it may not stop', because he's giving me the message all the time, 'Don't build up your hopes because this is the end and you know you've got to try to accept it.'  It's just so hard when in September you thought you'd got 20 years and in April you haven't even got 20 months, and there is... oh dear, I don't... it's so hard. 

Whilst they give you medications and treatment to help you they sort of forgot that they need to treat my brain a bit as well.  You know the emotional side of it and they seem to have sort of forgotten that in a way.  
 

Usually people expect that they will outlive their parents and will see their own children grow up. It can be very hard for people to accept that this 'natural order' has been broken.

 

She can't accept that she is dying and feels angry and upset that she will die before her mother.

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She can't accept that she is dying and feels angry and upset that she will die before her mother.

Age at interview: 61
Sex: Female
Age at diagnosis: 59
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I am angry and I can't accept it and that's nothing at all to do with the staff at the hospital or anything it's just life isn't it? 

I'm not a particularly religious person and so I don't find... I don't really have a sort of strong faith to hold me up. 

I think probably my attitude at the moment would be anyway, 'How could God love me if you know he's made this happen to me?' And, 'Why should, why should this be me? Why me?' That must be the question that everybody that's younger must ask. We expect to live until we are in our 80's or even 90's and the thought I'm going to pre-decease my mother is not a good one.

Just comes back to the fact of not being able to accept the fact that I'm dying, just can't accept it. I'm too young. I'm not ready to go. I've got all these lovely babies and it's just not fair but then you know nobody ever said life was going to be fair, I know.
 

Some thought that feeling 'low' or depressed was inevitable and had taken anti-depressant medication since they were diagnosed. A young woman who had chronic obstructive lung disease thought that depression was part of the 'grieving process'. She also said that it helped to write down bad feelings on paper, screw the paper up and then put it in the bin.

 

Explains that feeling low is inevitable.

Explains that feeling low is inevitable.

Age at interview: 41
Sex: Female
Age at diagnosis: 24
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You very openly admitted that you have your low days and you get really depressed and frightened and scared.

You will do, everybody does. It's only human nature. Even animals get depressed. You have to, it's part of the grieving process. It is the bereavement logic. It's the loss. If a person has a leg removed they still feel the leg. Just because it's gone doesn't mean to say it wasn't there. And that's how you have to look when somebody's got a life-threatening illness. 

Yes, they're going to die, yes, we're going to die but we were there beforehand and you've got the memories to look back on.

The pain and debilitation of the disease and the side effects of treatments make some people feel terrible. A man with oesophageal cancer said that chemotherapy had so depressed him that at the time he considered ending his life. A woman who discovered that she would not get a transplant said that she had considered suicide as a way of gaining some control and 'not letting the illness decide when I was going to die'.

 

Says that chemotherapy is so horrible that it makes him cry.

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Says that chemotherapy is so horrible that it makes him cry.

Age at interview: 62
Sex: Male
Age at diagnosis: 61
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The chemo that I'm on now is one of the strongest ones that there are and it really knocks me over. I have it on a Monday or I go on a Monday and it takes me 'til about the Friday to recover from it. You just feel totally spaced out as if you've been sent to the moon but you're still on earth. It's a most horrible feeling and I just wouldn't wish the feeling on anybody, you know you just want to do things. 

You go and do them and you get to the point when you know you can't do it. And, you know, I have a damn good cry. I cry every day you know, and that helps. Don't you ever be afraid to cry even if you're a man. There's no shame of it. Well I don't think so anyway.

Not at all.

No. I mean sometimes I wake up in the night and the tears are streaming down my face and anybody'd say, 'What's the matter?'  

My wife came into the bedroom the other night and said, 'What's the matter?' I said 'I just want a cuddle.' And that's all I wanted and I was alright after that. But no, never be ashamed to cry as I say even if you're a man. I do in the morning. I wake up, the tears are streaming down my face. Don't know what I'm crying for but I'm having a damn good howl.
 

 

During chemotherapy he became depressed and had considered suicide.

During chemotherapy he became depressed and had considered suicide.

Age at interview: 66
Sex: Male
Age at diagnosis: 66
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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.  

Others feel intense frustration and find it hard to accept that their life and horizons have changed. A woman regretted not having travelled and a man with multiple sclerosis expressed anger and frustration at his dependence on his wife. A man with testicular cancer and kidney disease said he felt sad and sometimes guilty that he was ill and now limited in what he could do for friends and family.

 

He expresses anger and frustration because he can't do things for himself.

He expresses anger and frustration because he can't do things for himself.

Age at interview: 70
Sex: Male
Age at diagnosis: 68
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But anger yes, I get extremely angry and frustrated but it's anger with me and frustration. I mean I'm sat in this chair, now if I want something I've got to ask my wife, would you mind, would you pass me an apple or a cup of tea and I drink gallons of tea and the poor woman is in and out. 

I feel guilty about that and I get very angry. I think to myself why the hell can't I do that? You know, I should be able to do that, but I know I can't because I'd be on the floor and that would make things much worse.  

So anger is something that I think comes in the package but it's frustration as much as anger. Both perhaps.  

When I said to the consultant that I was very angry, his answer was, 'Well I can understand that'. They all understand my anger but it doesn't help it.

A 32-year-old man with a brain tumour explained that it was hard to remain motivated' “You lose sight of life, you lose sight of why you're doing what you're doing and everything else”.

Several of the people we talked to were adamant that it was best to avoid bitterness and anger at the end of life (see 'Message to others'). A man with a brain tumour explained how he would try to help others in his support group to come to terms with the shock.

 

Explains that he would like to help others in his support group to come to terms with the grim...

Explains that he would like to help others in his support group to come to terms with the grim...

Age at interview: 32
Sex: Male
Age at diagnosis: 31
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I was angry, at first, because I wanted to know why it was there, what it was doing, what it had done, what I had done. They couldn't give me the answers for that. It's something there that's grown, for no reason, that nobody can give an answer for that. It's nobody's fault, it's happened. There's no point in beating yourself up about it, because it doesn't help. Try and be strong; try and be positive because that's the only way you can deal with it. Try not to be angry. 

But that's a big change, isn't it, to have to make?  

Yes, it is a big change. You are going from one milestone to another. You want to crash, you want to... you do want to, you know... and I've learnt that doesn't work, you know, you've got to, it's nobody else's fault. You've just got to get on with it and be strong. There's no point in being angry.

But that's a big change to be able to make. That seems to me to be about what you believe about life, your philosophy of life. Is that the way you'd put it?

It is a philosophy but also it's the truth. I didn't ask for it there; nobody put it there. So, there's no point in getting angry with anybody because it's nobody else's fault. You just got to deal with it.

You know you said you started off being angry and then you started thinking like this - what happened to help you change from one attitude to another?

How life changed so quickly, in a short period of time. Yeah, you know, just watching the difference from one stage to another. When you get sick. When you sit down and you say, 'Oh I've been off work nine months', and you've got a lot of time to sit and think, and you look through what's happened and you realise that there's nobody to blame. It's nobody's fault. And if you don't get on with it, it's going to beat you, so, best thing to do is just try and do your best.

Don't be angry, because life's too short as it is, you know, yeah. It is too short, life is too short. No matter what way you look at it, and just enjoy it, because who knows' At the end of the day what I say now is what I'll be saying in the support group. And I'll try and help anybody I can, because this has come as much of a shock to me as it did to them guys, or lady, whatever. If I can help them, then I'll be happy. 

A man with mesothelioma (lung cancer caused by exposure to asbestos) accepted that what had happened to him was a hazard of life. He found it easier to cope by accepting the situation and having positive thoughts instead of wasting time on anger.

 

Says he isn't angry and finds it easier to cope if he moves forward and thinks positively.

Says he isn't angry and finds it easier to cope if he moves forward and thinks positively.

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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I suppose I should have been angry but I wasn't. I think I've accepted that it was just a risk of working in the late 60s and early 70s. I didn't know. I knew that I was being exposed to asbestos. I didn't know the dangers of asbestos. Obviously since, I've learnt about the dangers of asbestos. 

When I was working with it, or I wasn't working with it, I was exposed to it, in the power station that I worked but at the time it seemed a small problem. Because we were, late 60s, early 70s in an old power station you were just exposed to so many other hazards. You know you could have choked on sulphur fumes. You could have given yourself nasty burns. We were, one of the things that we were really concerned with which was a major problem at the time was pneumoconiosis. Miners. We knew miners were suffering with that and we were working with very fine... we were working with coal dust, which was like talcum powder.  

And I don't believe being angry with my employers is going to help me. You know, I've got the same employer now who, when I was exposed, but the company, the people who are in the company now weren't the people to blame. I could be angry with the government but it's a different government. Circumstances change and there is just no point in me being angry because it's just not going to help. What I've got, I've got... being angry is not going to get rid of it. The only way I can get rid of it is by treatment and by having lots of positive thoughts. So I just feel 'be positive and go forward' all the time, not just look for someone to blame and things like that.

Sometimes people live much longer than they were expected to - a woman who was once angry about her diagnosis, described herself as thankful, calm and at peace with the world. Others were philosophical about how life would go on without them.

 

She has found a sense of peace and calm.

She has found a sense of peace and calm.

Age at interview: 63
Sex: Female
Age at diagnosis: 56
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As I said I just feel very at peace with the world, very calm. And I see people getting angry and agitated and you know like my son and I say 'Calm, take a few deep breaths, be at peace.' I mean why I am like this? I really don't know. I've discussed it with my priest. I'm just so happy to be alive I suppose. You know, I see my grandchildren and, yeah it's a good life.

Do you get comfort from your priest?

Yes I do, yes. He came to visit me in the hospice with a dozen red roses.

Ahh.

Which I thought was lovely.

Yes.

You see... when you're told you're gonna die you suddenly appreciate the small things. And here I am eight years on, which I've been told is an absolute miracle so I just thank... I'm just thankful for every day and I make sure that I enjoy it, I don't waste time. 

 

She feels sad that she will not see her daughter grow up but recognises that anger is pointless.

She feels sad that she will not see her daughter grow up but recognises that anger is pointless.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I think I've only ever had flashes of anger. There's been... I don't see it as a creative emotion in any way, or I used to think, anger therapy, great girl, let it all hang out. Although I'm not a sort of enclosed person who holds emotions in, I don't see it as a constructive way of dealing with things and I think it can get in the way of actually planning a positive way through difficulty.  

And so I haven't really got angry. Again, my husband despairs at the things I say sometimes. I remember saying when I really did think that I perhaps didn't have very long, 'Well I'll find out what it's all about before most people I know, that'll be interesting because I've always liked new experiences'. I know, it's a strange thing to say but it's sort of trying again to make something positive out of something what's happening to you. 

I've got... I think my emotions were more to do with being upset maybe. I'm sorry that I wouldn't be here when my daughter grew up and had her own babies or whatever and how much I'd miss that. But on the other hand, if I wasn't there, I wouldn't know I'd miss it, if you get what I mean? Sort of strange logic. 

Those are the sort of things I could get very upset about but I wouldn't get angry about it. And yeah the medical profession should have helped me more and helped me sooner.

Last reviewed July 2017

Last updated March 2012.

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