A life-threatening illness is a major event. Many factors affect everyday life - symptoms, current treatment, the side effects of treatment, the care and support available, the prognosis and living with uncertainty. People described their everyday lives. Some had finished treatment and were well, others were still having treatment and a few were having only palliative care (to help manage symptoms and make the person comfortable).
Peter (Interview 36) said that he lived a normal life in ‘every way’. He'd had a rare type of pancreatic cancer, a neuroendocrine tumour, which had been successfully removed in 2000, over 10 years ago. Peter felt very fortunate to be alive. Although from time to time he remembered vividly what had happened, most of the time he did not think about it much. Just occasionally he wondered if his cancer might return, and he reflected that fear of death is part of being human.
Peter is a journalist. He is married and has two children. Ethnic background/nationality: White British.
You talk in your book a lot about mortality and death and dying, and Epicurus saying that the most important thing is for us to try and overcome our fear of death; do you think you have overcome your fear of death through all of this? Or do you think that would be impossible?
Ah, what Epicurus and what the Romans discovered, which was later sort of picked up by Freud and others, is that no matter how much of a scientific materialist you are, and however much you recognise that there is no, “I” after death, that it is absolutely ashes to ashes, that there is no part of you that survives afterwards, that there is no constituent, there is nothing, you cannot possibly talk about “me” after death because there is no, there is no “me”, however much you work that out, and however strongly you are persuaded on it, and Epicurus in the days when there was a lot less science about than there is now, had a little mantra, he used to get his disciples to chant out, and there was one of the greatest, the most beautiful poems in Latin that Lucretius, De Rerum Natura, there’s a lengthy epic poem on this very theme as to, as to why there was nothing other than the material world. So you know this is Richard Dawkins two thousand years ago, but it doesn’t alter the fact that I think others, that however much you may persuade yourself that is the truth, that it’s somehow part of the human condition to ignore this truth at certain points, or for that truth to be overwhelmed by other factors. I still think that Epicurus was right. That actually that working to remove the fear of death is an extremely important part of living, of living a happy life and you know a contented, a contented life and a good life.
I think he knew in his heart that actually it was not, the reasons why you had to keep on at the teaching was because you can never completely remove the fear. But that the attempt to remove it and consider removing it important was a very great good in itself.
Elaine finished her treatment in 1996, 15 years ago. She explained that although her outlook on life had changed, she wanted to lead as ‘normal’ a life as possible.
Elaine was a doctor before she retired. She is married and has 4 children. Ethnic background/nationality: White Welsh.
And everybody had advice, but I thought, “No, I’m just going to lead a normal life.” Not pretend it hasn’t happened, because it has happened. But it’s, it’s actually a very, if you have a shot across the bows, I just decided to live, as probably all of us should lead, life as if, you know, each day might be one’s last and make the best of what one, one had, is how I saw it. And I still, and I still carry that with me now. But I don’t think it was here before this event. I thought it actually brought things much more sharply into focus about what was important and what was, some things you could do nothing about and other things were less important. But that’s just me.
Tony had a Whipple’s operation in 2010. In spite of still having chemotherapy he said that his life was ‘back to normal’.
Tony is a recycling operative. He is not working at the moment due to illness. He is married and has two children. Ethnic background/Nationality: White British.
How is life now?
My life is like it was before I had the operation. No different whatsoever. It’s just that I’m not going to work until I’m ready you know. And if I have to live on what I live on, if you know I can’t go back to work then I accept I can’t go back to work. I’m finding enough to do, you know, but I miss a number of colleagues at work, and I haven’t been out so many Friday nights for my usual drink which is only a pint and orange juice, because I always drive anyhow. So I drink very little.
Can you eat? Can you eat more or less what you want?
I eat everything, everything. Every mortal thing you can put in front of me I eat. All bar broad beans, I don’t like broad beans.
Carol finished her treatment in 2009, about a year ago. Having survived major surgery and finished chemotherapy, she felt elated that she was alive and feeling well. Occasionally she worried about a recurrence, and sometimes she felt sad because life had changed, but most of the time she felt that ‘bad experiences’ were behind her. She described her everyday life, which included cycling, swimming, walking and gardening.
Carol was a nurse before she retired. She is single. Ethnic background/Nationality: White British.
I was prepared possibly to have a 50% of my life back, my life is almost as normal as it was when I was fit and healthy.
Yes I’ve lost weight, yes my eating is not as it was, I don’t want food. I have to keep an eye on what I’m eating. I get a little bit more tired maybe, but I’ve got into the habit of having an afternoon siesta. I do a lot, I’ve continued my walking. I do cliff path walking, I can walk up to about three hours. I cycle up to about twenty miles. I swim. I’ve never pushed myself. I was not driven to do these things. It was a gradual process. You can’t push, you can’t drive. You have to listen and I know this is a cliché but truly if you do stop your body tells you exactly what to do. And I’ve listened to that implicitly. And to what my medical team has advised me, and what I know is right for me in there, in my head.
So could you summarise sort of how you’re feeling about life now?
I’m delighted to be alive. It’s been an extraordinary, extraordinary experience from the minute I was diagnosed, right through my process of treatment, whether it’s surgery, chemotherapy, the will, the need to survive, it’s been extraordinary and along that route I’ve had extraordinary people in my life, both professionals and others. They’ve always been there but you’re more aware of them. It’s been very difficult at times; it’s not been an easy road. But you get there. I got there because I wanted to get there.
I needed to get there. I’m so delighted and happy, I thank God every day I’m alive and I mean that sincerely. I don’t take it for granted. I try to tweak my life a bit more efficiently.
I think a little bit more what I can do or can’t do, for example I’m a great lover of Egypt, I did a lot of sub aqua diving in the Red Sea. I went, returned there in December last year for a holiday. I did not risk taking that risk of diving. I’m thinking just a little bit more carefully of how I risk things in my life.
Fred also felt optimistic about the future. He hoped for a long life and said that if his health kept on improving he would soon be back playing golf, swimming and walking as he had done before the Whipple’s operation. Others said they were pursuing hobbies or sports, taking holidays or doing voluntary work.
Michael had just finished his treatment. He suspected that his life might be shorter than he had expected, which made him sad. However, he was quite optimistic about his chances of survival. He felt at peace with himself, partly due to his spiritual beliefs, and he still enjoyed life and laughter with friends and family. He regarded his illness as a ‘wake up call’, which led him to decide to spend his future time in supporting others. Other people said the illness had made them reassess their values.
Some people knew that their prognosis was poor but were determined to enjoy life for as long as possible. After Dorothy developed jaundice in 2007, three years ago, a stent was inserted to relieve her symptoms. Her consultant said that she almost certainly had pancreatic cancer. He also said that major surgery was impossible. Dorothy felt well, apart from feeling a bit breathless at times. She decided not to have chemotherapy.
Dorothy is a housewife. She has three children. Ethnic background/nationality: White British.
And from then I really haven’t done anything. I haven’t been back, I’ve had an MRI scan, and I haven’t been back to the hospital. I haven’t, I’ve perhaps been back to the doctor once just to see how things were, but I haven’t been back to anybody, and I have been fine. And I just carry on with life as normal, I say to myself, “What I don’t know doesn’t harm me and I just carry on, and the doctor, when I went to the doctor originally for the original, what’s the word I’m trying to say? When I first saw him, can I put it that way? And he then said to me, “Well,” he said, “there is a lump or a tumour there. And no way can we operate on that. It is too much enclosed with other
Blood vessels and things?
Thank you. Other blood vessels, yes that’s right, various things round.
And he said, “I think the best thing is you’ve still got a good quality of life, let’s just leave it and just see how you go.” He said, “If we start trying to do chemo or radio you’ll get sickness, most likely. You’ll be very tired and,” he said, “at the moment you’re keeping very well, just let it be.” And that’s what I have done. And I have let it be, I’ve carried on with life as normal, I perhaps get a little bit more breathless admittedly, but apart from that I really haven’t got a lot of difference. And I just keep on going and everybody says how well you look. And I just do the things, I, I walk up into the town. I have quite a bit of social life with the church, go to various activities and as yet, I’m just carrying on in the normal way. So really not a lot has happened to me since.
Peter (Interview 13) had a list of things he wanted to do before he died. He wanted to become more proficient at playing musical instruments, to read more and to walk the South Downs. Steve felt well. He hoped he would remain well until close to the time of his death.
Peter is a retired sheltered housing officer, he is married with two adult children. Ethnic background: White British.
In my, in myself, as far as my attitude and my reaction to all this is I’ve always been a positive person and I remain so. In fact more so because I’ve made this conscious decision that I’m going to get as much out of life now as I possibly can, given that I don’t know how much longer of that life I’ve got left. And I may have been sleepwalking a bit in the past, prior to diagnosis, but since, but post diagnosis I’m determined to do as much as I can, although I am restricted to some extent by my energy levels, because some days I make plans to do things and then I have to cancel them because I just don’t have the, I just don’t have the stamina to carry them out. So that’s where we are right now at this moment. So it’s a year later now. It’s now a year since I, since I started having problems and around about eight months since the actual diagnosis was confirmed.
And the, the idea of retiring, I wouldn’t even call it retirement really. It’s not retirement from life, it’s just extricating myself from the madness that is daily office life and the world of emails and [laugh] being, being told that something is wanted yesterday, and all the stresses that that involves.
As an example, I have for a number, a number of years had this idea in my head of joining the National Trust, which I think a lot of retired people tend to do, and I haven’t had the time to do it before, but I’ve, I’m now determined to join the National Trust and then I can go and visit all their properties, of which they’ve got 300 or something in the country.
And I may say that my lifestyle is, and will be, considerably enhanced by the fact that I’ve now got a Motability car; the mobility element of my Disabled Living Allowance I swapped for a brand new car. And for those people who don’t know, I get insurance, tax, servicing, breakdowns all covered. All I do is the government takes back about £49 a week, which is the mobility element of my DLA, and in return I’ve got this brand new car, and all it costs me is petrol. This is going to be my passport to a future life, whatever the future holds, because I’m now much more mobile obviously. I can get to and from places much more easily and the National Trust being one example, and my plan is to maybe find somewhere to stay overnight if it’s far enough away, so I can stay in a nice hotel, go and visit National Trust property and I will not be comfortable with being idle, because I never have been. I’ll have to find something to do, and I’ve also put my name down to volunteer with the National Trust as well, driving their electric buggies to and from, which I need a full driving licence, which I’ve got.
And for me personally, as I’ve spent 30 years out of the last 33 years caring for and being concerned about other people, I cannot switch that off entirely, but I’ve now got to the stage where I, I don’t feel guilty now about worrying about myself. I’m more concerned about me than I, than I used to be. And I think there’s nothing wrong with that because my time has come.
Age at interview:
Age at diagnosis:
Steve is an office worker (retired due to ill health). He is married. Nationality/ethnic background: White British.
There is a psychological aspect to the illness. And that is being reconciled to being terminally ill. I feel I’m quite reconciled to this condition. And I think there are two reasons for that, firstly because I have a strong Christian faith, and both my wife and I have that. And we have a very supportive local church, and that helps me because I don’t have an intellectual fear of death. I personally feel there’s something beyond. And I have a firm assurance in my own mind that I will go to a better place. That helps psychologically. I have a fear of the process of dying; I’m not looking forward to dying at all, but having a Christian faith helps.
The other reason why it’s perhaps easier to live with the condition, my terminal diagnosis, is because at the moment I’m quite well. There’s nothing that much wrong with me. I’m enjoying life. In some senses life’s quite easy because I’m not having to go out to work every day so I’m enjoying life, life’s quite relaxed and I suppose from that point of view day to day, it’s not, not so bad.
Yes, I’m enjoying life. I now savour small things quite a lot, the simple things like we feed the birds out in the garden and I get pleasure out of that. And I’ve said about enjoying riding my motor bike when I get the chance and so on, so yes you can, you can enjoy again simple pleasures in life and the fact that I can eat delights me, I enjoy that. Yes, you do savour those little things.
People had experienced a wide range of emotions during their illness. For example, when Ann was first diagnosed with pancreatic cancer she felt it was very unfair because she'd already had breast cancer. When recovering from surgery she felt so ill that, at times, she 'wanted to die'. However, after she had recovered from the Whipple’s operation she felt quite optimistic about the future and decided to get on with her life. She didn’t feel she was ‘fighting’ cancer but just carrying on with life. When her cancer recurred she felt angry at times because she knew she wouldn't be able to finish her plans to set up an Institute of Health Experiences. She also felt angry that some of her grandchildren may not remember her. Ann also felt very sad that she no longer had the strength to do various things, such as cycling. Sometimes, when she felt unwell, a hot bath would change her mood and make her feel better. At other times a walk up the garden and some fresh air or a chat to friends would lift her mood. Looking at old photographs and making memory boxes for her grandchildren also gave her enormous pleasure (also see ‘Making plans for death’).
Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality: White British.
Say something about your photographs.
Oh, yes. The thing I have done, which has been the most enormous pleasure, is over the years I’ve always kept photograph albums. And I now must have about thirty enormous books of photos. And I’ve spent a lot of time recently just going through them, looking at them and enjoying the times that I’ve, that; they remind me of times which have been very good, not all of them very good, but all the sorts of things we’ve done as a family and as friends. And I think they’re a fantastic memento. And I think the family will find it, I think, I’ve always said, “If we had a fire in our house, the one thing I’d want to keep are the photo albums.” Of course now I’ve got lots of them on sticks, but there’s nothing like looking at them in books. It’s not the same as having them on a computer, going through them. There’s something about turning over the pages and seeing those photos and laughing about the times that one, certain things happened, and realising how different everybody looked then, how much younger we all looked, how much older we all look now. But they have given me more pleasure I think than anything else of the sort of things that I have.
Many people said that their mood varied from day to day or that they had conflicting feelings. Bob, for example, felt lucky that he had survived so long and that he still ‘felt good’. On the other hand he had been ‘robbed’ of his retirement. William had been told that he had terminal cancer, which depressed him a bit at times. However, some days he woke up and felt ‘really upbeat’ and that ‘life was great’. He decided to live life from day to day, and not to think about the future. Ben felt he was ‘living on borrowed time’ and at times felt life was ‘horrible’ – he had no idea what was round the corner. However, he hoped that new treatments might be developed. Bob tried to keep positive to avoid depressing the people around him. Peter (Interview 43) found that working on the house and garden helped him to forget his illness.
Some people found it hard to forget they had cancer and regretted that they had so little time left to do things they wanted to do. They often wondered whether they would live to see their children grow up. Adrian, who knew he was dying, said that he felt ‘very unhappy’ about the situation and that he thought about it from when he first woke each morning. Steve enjoyed life, but sometimes he felt he was living with a ‘ticking time bomb’. Hamish felt depressed at times but said he had had a good life.
Vicky is a bookkeeper (now retired). She is married. Ethnic background/ Nationality: White British.
I haven’t actually changed my lifestyle much at all. I mean it does make you, you do things that you might have put off you know, doing. You know if you want to do something you jolly well get on and do it, because you’re, you don’t know quite how long you are going to feel well.
And that’s, that’s the, that I think is one of the hardest things is, wondering when the day’s going to come when you’re going to wake up and you’re not, not going to feel as well as you did the day before. And you’re going to wonder, “Is this the start of the end?” sort of thing. That’s, that I suppose is probably the thing that sort of is constantly at the back of your mind. I mean they, they always talk about living with cancer, and it is, and it, you know you can sort of forget about it sometimes but really not, it’s there, it’s always there. And sort of it does affect whatever, any, whatever happens or things you know, you know things happening in a few months time. People ask you, “Would you like to do this?” And you always think, “Oh I wonder if I’m going to feel okay to do that,” sort of thing. But you just have to get on and do it,
Even though many people had wanted to lead ‘normal’ lives for as long as possible the lives of most had changed. Ann’s life had changed ‘phenomenally’. Some people had symptoms, such as backache. Many felt very tired at times and needed to rest. Some needed help with housework. Adrian said that he spent most of the time in bed, and Ben had become a ‘hermit’. Steve had to retire from work so got up later than usual and watched daytime TV. Ann did her shopping online for the first time and found she missed looking for the things in the supermarket, and forgot several things she needed.
Eating was a problem for many people too (see also ‘Long term effects of the cancer and its treatment’). Lilian, who was having chemotherapy, had bouts of sickness. Hamish found eating ‘frustrating’ because he quickly became bloated and couldn’t eat much at a time. He also complained that his taste buds had ‘gone’ and that food tasted like cardboard. Ann described her changing tastes. Sometimes she fancied eating bland dishes, at other times she wanted something spicy. She concluded that ‘getting food right is actually quite difficult’. She no longer enjoyed cooking and sometimes couldn’t decide what she wanted to eat.
Alison is married and has 2 children. She is a PhD student. Ethnic background/Nationality: White British.
Have you had to adjust your diet?
Yes, I’m now confirmed diabetic and I have adjusted my diet. I mean luckily I didn’t have a, much of a sweet tooth before. But I’ve cut out the majority of refined sugars. I don’t eat sweets or biscuits or cakes or anything like that that contain sugar. So I’ve completely cut it out of, out of my diet. And that hasn’t been too difficult for me to deal with. I think if my husband tried to do that, he’s got a bit of an addiction for chocolate digestives, so if he tried to do it, it would be a nightmare. But for me it was quite easy.
Have you changed your lifestyle a lot, partly because of your diabetes?
The diabetes, initially with the diet definitely. I mean that was an overnight thing. I found that I was unable to digest red meat terribly well, and I gradually got that out of my diet. And then I gradually just decided I wasn’t going to eat meat full stop. Because it’s a lot easier when you’re invited to a dinner party and, you know, people always ask you, “Is there anything you can’t eat?” And I think, “Right, well, I’ve got a whole list.” So I didn’t want to be one of these really annoying people that, “Oh, goodness me, she’s really fussy.” So I just, it’s easier to just sort of cut it out. So that’s what I’ve done. So I eat fish and, and seafood and mostly vegetables. But I think that’s a pretty healthy diet anyway.
How long did it take you to get back to work again? How long were you not doing anything at all?
It was almost exactly a year. Because I had my surgery, 2007 in September and I started the PhD in October 2008. So it was a year.
A few people talked about the effects of their illness on sexual relationships. William’s painful incision made ‘intimacy’ impossible. Donna also explained that pain and tiredness had ended her sex life. However, she always made an effort to look nice to prevent herself feeling 'undesirable'. Peter’s radiotherapy and chemotherapy (Interview 13) had reduced his ‘sex drive’ to zero. However, one woman said that to her surprise the drugs she was taking had improved her libido.
Maureen is a retired therapeutic counsellor; she is married with 3 adult children. Ethnic background: White British.
What about the sexual side or your relationship? Would you be able to talk about that? Has there been any impact?
Yes, there has. I think it’s come to a standstill. Funnily enough, I’ve been thinking about that and thinking, I think part of that, well it’s definitely me, is because there’s like the fear of, I don’t know. Because this sort of alien thing is inside me, it’s like I don’t want to have any impact on it. It’s funny, it’s like going completely off it. But lifting things, it’s like I don’t want to put any pressure, any strain on it in, I don’t know [laughs] whether it’s got any impact on it or not.
We have a very close physical relationship but at the moment sexually it is at a standstill. But I have been thinking, funnily enough, since we’ve sort of settled in here and thinking, “Well, you know, things are going on OK, I’m sure it’s not going to have any impact”. So, I’m sure, I mean, it will come back into being and I don’t’ have a problem with that. But we’re, we’re very tactile, and very cuddly and we still sit and hold hands on the sofa, which is something we’ve always done. So, so that closeness is there and, and I know that that side of our life will come back and, when, certainly as we’ve settled down into a routine of including cancer in, into our lives then I think that, you know, that’ll come back into our lives too. It doesn’t detract from our relationship because it is so close but it, it’s always an, an added benefit because it, you know, it, it’s a giving and sharing. So, yes, that will come back.
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