Living with dying
Own reaction to hearing that life would be shorter
In other Health Experience Insightsmodules people explain how they reacted to a diagnosis of cancer, heart failure or other serious illness. Here we discuss reactions to the news that life would be much shorter than expected.
When people receive the news that they have a terminal illness they may react in different ways, including disbelief, denial, shock, horror, anger, or stoic acceptance. How they react depends on many factors, including expectations, previous experiences and personality, whether they have dependent children and how the news is broken (see 'How bad news was broken').
Many of the people we interviewed said they were shocked, especially if they did not even know that they were seriously ill. Even those who knew they had a serious illness were sometimes wholly unprepared. A woman who asked her surgeon to be honest with her said that she felt so shocked, when told she had a sarcoma, that she would have welcomed a tranquilliser.
The diagnosis of breast cancer was a big shock.
The diagnosis of breast cancer was a big shock.
All at once?
Well, within the space of six weeks, yeah. From being healthy and being at work and healthy except for the headaches, which I'd decided that I was approaching fifty, I was working, managing my family and doing what a lot of women do and deciding well, a lot of people have headaches.
I'm a pharmacist, I used to meet people coming in, the other side of the counter, coming in, women of my age coming in with headaches, and thinking, "Well I've just got to get on with it you know, this is life". So yeah, big shock and I haven't been back to work. That was the last time I went to work.
After being told she had a sarcoma she was in a state of shock.
After being told she had a sarcoma she was in a state of shock.
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.
Some people said, however, they were not especially surprised to find out that they might not have long to live. One man explained that ever since he was diagnosed with non-Hodgkin's lymphoma he had been prepared for the news that he might only have a few months left. Even his original diagnosis did not have a “shock impact” because he had suspected that his past smoking and exposure to asbestos might have given him lung cancer.
Others reflected that rather than ask, “Why me?” they could just as well ask, “Why not me?” since we all have to die. A man with cancer of the pancreas compared his acceptance of the news that his disease was terminal with his shock when he had first been told he had a tumour.
By the time he was told that he had a terminal illness he was ready to accept it.
By the time he was told that he had a terminal illness he was ready to accept it.
So that by the time I knew that it was positive I was ready for it by then I wasn't ready for it the first time and if a doctor said, 'You've got a tumour' you know, no I wasn't ready for that one but, because I didn't, I hadn't felt ill or anything and I had no reason to believe I had got anything the matter like that, I just thought it was indigestion a rotten pizza.
Some people are angry or try to deny what is happening. The daughter of a man with motor neurone disease recalled that when her father was told that he was going to die he found it impossible to accept the situation, initially refusing to believe that he would die. A man with progressive multiple sclerosis remembered that he blamed everyone else, including God, for his condition, only gradually accepting the situation with professional help.
Her father, who had motor neurone disease, at first refused to accept that he would die.
Her father, who had motor neurone disease, at first refused to accept that he would die.
And what was his reaction?
'You're wrong.' She had to tell him that he was definitely going to die and he said 'It, it can't be. There must be something you can do.' And she said 'No, there is absolutely nothing they could do', and he said, 'But there must be.'
He was an inventor and mechanical engineer and he could think about all sorts of things he could do, to build you know artificial legs that were driven by electronics and do the walking for him. And I don't think he had really taken on board, what it would mean for the rest of his body as the disease progressed and of course nobody really knows about motor neurone disease until they get it.
How long did this sort of denial go on for and how did his emotions change?
I think he was what I might term in severe denial probably for about two or three weeks where we... it was very difficult to talk about anything because he wasn't having it that he was likely to stay in [hospital]
At first he blamed everyone else for his illness, but then accepted it.
At first he blamed everyone else for his illness, but then accepted it.
But gradually, my own background, with the help of a very good psychologist, and the help of a very good consultant neurologist, who understands, and they were able to talk to me. They knew of my professional background, I was then being able to think of the illness, not that I knew much or very little about MS, I knew an awful lot about illness. I was able then to say, "Well yes, first of all let's accept that I'm ill, I have, I have an illness, it's nobody's blame and I'm not. I've got to stop blaming everybody. It's me, it's what's happened to me and it's something that I'm going to have to live with".
A woman with breast cancer comforted herself with the thought that she would not get old and decrepit and be a pain to everyone, but she felt shocked and devastated, and concerned about her husband.
She was glad she would not become old and dependent on others but worried about those she would leave behind when she died.
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.
People with partners or dependent children often feel particularly upset and sad on their behalf. A woman who had multiple myeloma was desperately upset because her husband had recently died of the same illness, and she had no idea how she could break the news to her teenage children (see 'Talking to children').
When a man was told that his kidneys were failing he said he felt totally numb at first. Later he started to make plans for the time he had left and eventually found that he was able to use the words 'death' and 'cancer' rather than euphemism.
He felt numb at first and then started to make plans for the time he had left.
He felt numb at first and then started to make plans for the time he had left.
First of all I thought you know 'No this can't be. There has to be, there's a mistake somewhere' or whatever. And then when I actually read... they gave me a copy of the biopsy report that showed me that my kidneys were failing from the inside and that there was nothing they could do about it.
And, I suppose I went through a quick planning check of what I wanted to do and where I wanted to be and who I wanted to be with and all those sorts of things. But first of all I was numb, really numb.
I didn't get angry. I mean a lot of people... I've spoken to a lot of people and they've said you know "why me?" and this, that and the other but I learned a long time ago that, that I have a certain amount of energy and to expend that energy on anger is just a waste of time because all, it doesn't, it doesn't achieve anything - all it does is make you more tired and more frustrated. Being ill is very tiring, being in pain and I'm in pain all the time, is very tiring. So I have to try and channel my energy into positive things.
Describes how he came to terms with death, dying and talking about death.
Describes how he came to terms with death, dying and talking about death.
So I knew that there is a time limit and I started to realise two things' I realised that the best days of my life were behind me and I had to come to terms with that and I also had to come to terms with, that, every day is one day nearer or one day less. Now I know that's for everybody and, you know there's only... What is it that Benjamin Franklin said? "There's only two things about certainties in life' Death and taxes."
But you normally expect that your final days will be as an old person, sitting in an armchair, reading a newspaper and that you'll die in your sleep. Well it isn't going to happen, it's going to be different. And I found great difficulty in the 'D word' and I used to...very strange. When I had cancer all the people around me would try and find other ways of saying the word cancer. 'The Big C'. 'It'. This, that and the other and at the time I thought, you know, why can't they actually say it? And then when I was told that I had a terminal illness I had this aversion to the 'D word' and I would find other ways of saying it. For a long time when I was with my therapist I would say you know, "When I close my eyes for the last time," that's the way I would describe it. I don't have that problem now because I've got round that, and I can...
How did you get round it?
By realising that it's only a word, like 'cancer' is only a word, like 'TB' is only a word. No it's two words, but it's only a word and you have to come to terms with it. It's like that thing you see on the television you know "My name is John and I'm an alcoholic," and the only way I can confront it is by accepting that it's there and not fighting it but almost working with it to give myself the best opportunity and the best quality [of life] that I can have.
Guilt is another emotion sometimes felt by those who get bad news. For example, a woman with breast cancer recalled that she felt very guilty because she thought she should have found her tumour earlier (see also 'Roller coaster feelings').
Last reviewed July 2017
Last updated March 2012.
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