Pancreatic Cancer
Telling family and friends
We spoke to people about their experience of talking to friends and family about having pancreatic cancer.
Breaking the news to family
People who have with cancer may find it awkward, embarrassing or uncomfortable to tell family and friends what's happening to them. Most people we interviewed were deeply shocked when they got the diagnosis. Some wanted time to process the news themselves before they told anyone else.
Others waited until they felt the time was right. Helen did not tell her husband until he arrived home from work, or her son until he came home from university. But Ben told his family immediately after he arrived home from the hospital as ‘it’s no use hiding something like that away’. Some people told their family face-to-face but others had to phone family members who lived far away.
After John (Interview 21) discovered that his wife had liver metastases as a result of cancer he waited 48 hours before he told their grown-up children about it.
After John (Interview 21) discovered that his wife had liver metastases as a result of cancer he waited 48 hours before he told their grown-up children about it.
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Given that you didn’t know for such a long time exactly what the problem was, how did you go about telling other people, for instance your son and daughter and other family members, about what was wrong with Ann?
I think, with great, besides with great difficulty, I think we kept, or I kept it sort of bottled up inside me for forty-eight hours or so before I talked to both my children. They both knew it was very serious because, you know, they had, they had been around and they, they had known the frequency with which we’d been into hospital and been for this and been for that. But again that was in September and I think I just, just talked to the pair of them, I think, I think with my son I had to do it on the telephone, but with my daughter, she lives locally so, you know, I could talk to my daughter. But my daughter is the more resilient one anyway so it was easy to talk to my daughter, less so with the son, because he was closer to his mum. And, you know, the fact that he was, he was up north didn’t, didn’t exactly make life, make life easy, because getting down here was always a bit of a pain.
Simon was with his wife when she received the diagnosis. They had to tell his parents that day but didn't want to burden others with their news
Simon was with his wife when she received the diagnosis. They had to tell his parents that day but didn't want to burden others with their news
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I think we both felt the sense of having a horrible secret. It felt to me like carrying a bomb. It felt to me like carrying a bomb that if I opened my mouth would pull the pin, you know. And it, it was, you know as though we were, as though I was sort of cradling this news.
Who did you feel you wanted to tell first?
Oh well I didn’t want to tell anyone. I mean I, it was a case of we were going to have to tell, my parents were here, they’d come to look after the children, while we went to the appointment. Or I think it was just my Mum actually and so we knew that we had to tell them, and Karen’s family. But it was a case of have, we had to, you know. We didn’t want to tell anyone. Because we knew how, we knew what a shock it was for us. Or this is how I felt at least that it was such a shock that I didn’t want to burden anyone with that.
And so we just went to, you know a field near here and sort of went for a walk. Just to try and well, you know you feel like you can’t feel your legs. You feel like you’re floating. We went to, we went to a pub, near there to, just to, for something to do, because you don’t know what to do with yourself. And we went to the bar and neither of us could talk. We, it was almost embarrassing. We went to the bar and the barman said you know, “Can I help you?” There was no-one else in there. And I suddenly thought, “I can’t think.” I couldn’t even; I didn’t even know what I wanted. I didn’t know what to say. I looked at Karen and she was, she just looked at me, and she was the same. And you know, and I had to sort of really force myself to sort of be able to be normal and order a drink. Phew. Its, it’s just, so... Eventually we had to come home, you know, there was no way, there was no way round it. I mean and gently I think, you know, just sort of said, “Well there is a growth.” And I think there were tears then and, but they, aah the, I think the children were in bed by then. It had been an afternoon consultation but of course we’d, we’d taken a few hours to get home. So the children weren’t there and yes it was, it was quite emotional then. I don’t think we talked about it being terminal at that point.
Telling others was especially difficult when the prognosis was bad or when doctors had found a recurrence. Lesley was with her brother-in-law when a doctor told her that her cancer had spread to her liver and there was nothing more he could do. Lesley didn't want to tell her partner immediately because he was waiting for some test results for prostate cancer, and she thought that if he knew she was going to die then he wouldn't bother to get his results, not caring if he lived or died. She told him two days later.
Lesley found telling people 'awful'. Her parents 'fell apart'. Her partner, who was devastated, insisted that they get married.
Lesley found telling people 'awful'. Her parents 'fell apart'. Her partner, who was devastated, insisted that they get married.
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I was starting to come round and getting used to the idea. It wasn’t getting easier.
No.
But it was sort of settling in. But telling people was awful.
It sounds like you’re more caring about them, than you were worrying about yourself?
I suppose in a way I have. But I kept thinking well, at least this way I can say goodbye. You know I can make all, make all my goodbyes you know to everybody. Instead of getting hit by a bus and everybody’s going, “Who, who’s dead?” You know, “That was a shock.” You know? And I’ve got a chance to say goodbye to people in a way. And if I keep that in my head, it’s easier.
How long ago was, how long ago was all that? When were you [diagnosed]?
This was September.
Last year?
At the end of September last year yeah. When I got the result.
And then when did you tell your partner and your children.
Oh, I told, I couldn’t hang on any longer. So because it was the Tuesday that I’d got, sorry the Wednesday when I had got the results, I think, yes. And by Friday I couldn’t hang on any longer because we got into an argument over something. And he said “What’s wrong with you? What’s wrong with you?” And I said, “I can’t. Oh I’ve got to tell you,” and he said, “What?” At the time we were making the bed. I can remember I was making the bed. And he, he shouted at me, “What the hell is wrong with you? Come on what is it?” I said, “I can’t tell you.” He said, “You, what? What can’t you tell me?” I said, “Look,” I said, “You’ve got to make me a promise.” He said, “What, what promise?” I said, “Make me a promise now. You go and pick them results up next Wednesday.” He said, “What are you on about?” I said, “You’re going to pick them results up next Wednesday aren’t you?” He said, “Well yeah, why?” I said, “Do you promise you are going to go and get them results next Wednesday?”
That’s by himself?
Yes, for his prostate results. And he said, “Why, what’s up, what’s up?” He said, “Please tell me.” And that’s why I had to tell him. I’d seen my Mum fall apart, I’d seen my Dad fall apart – but he just went completely off his head.
That must’ve been awful for you?
He kept saying, because we were together years and years ago, and then we split up for a time. And for all the time that we were apart he said he used to sleep with an old jumper of mine.
So soppy he is.
You know the big tough guy, but he’s not. And he just completely fell apart.
Did you have anyone to help you? Anyone you could turn to?
No. And then he says, “But we’re not even married.” I said, “I know we’re not married.” He said, “Right we’ll get married.” Cos he, “Yeah, when we’ve got some money.” He said, “No, we’re going to have to get married, we have to get married”. I said, “Well yeah. We will, we will, we’ll get married.”
Steve found it hard to tell his mother, sister and brother that he was going to die but decided to be open and honest with people.
Steve found it hard to tell his mother, sister and brother that he was going to die but decided to be open and honest with people.
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How have family members coped with this knowledge that they’re going to lose you one day?
Ah it’s hard I think.
Only talk about it if you want to?
Yes, I can’t speak for them, but it’s very hard to talk about such things with your mother, your sister, with your brother. But I think it’s helpful for me to be brutally honest. I’ve wanted to be honest with people from the beginning and tell them not, not wrap things up and try and use euphemisms or pretend that something’s not the way it is.
At each stage I’ve tried to explain things fully to them and said, “This could happen, or this could happen.” And at, of course at one point I had to say, “I went to see the surgeon today. I’m afraid he told me I’m going to die.”
And I found it helpful just to be honest and open with people so there aren’t any hidden agendas or people, you don’t have to pretend. It’s a lot easier I think that way. Mm.
Telling children the news was the hardest thing. Read more about telling children about a diagnosis of pancreatic cancer.
Most people said that family members were shocked and upset, but very supportive. Some people, like Peter did not have support. Peter had to cope with his illness without his wife’s support. A few people thought that relatives seemed to be ‘in denial’. Dorothy’s grown-up children helped her ‘make the best of the situation’. Once a stent had been fitted to relieve her symptoms she felt quite well. No other treatment was planned, so she and her children just ‘carried on as if nothing had happened’.
Peter's wife seemed unemotional when he told her about the diagnosis. She never went with him to the hospital during his treatment.
Peter's wife seemed unemotional when he told her about the diagnosis. She never went with him to the hospital during his treatment.
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So has your wife helped you at all with your illness? Has she been with you to hospital or anything like that?
No. In fact on a number of occasions when I’ve come back from seeing the specialist or whatever she hasn’t even asked me how it went. And she’s also now suffering from a degree of, well I wouldn’t like to label it as dementia because that would be a, a medical pronouncement, but certainly symptoms of, serious episodes of forgetfulness. Like, for example, if I’ve been to the hospital on a number of occasions she’ll refer to me having gone to college. “How did you get on at college?” would be one. And she may not even remember on, on some occasions that I’ve actually been there. She doesn’t even know where I’m going, where I’m coming today. Didn’t ask me about it. She said, when I got dressed up in a jacket and tie, she said, “Oh it must be something important”. But that was as far as it went.
So I take it she wasn’t even with you when you got your diagnosis?
No.
How did you go about telling her?
She wasn’t with me, not with me physically, all through, throughout the six weeks course of treatment that I had I went there on my own on every occasion. I did ask her once, I said, “Would you just like to come and see where I’m going and what goes on there?” And, but nothing happened. It didn’t happen.
So how did she react when you told her what was wrong with you?
Not sure that I can remember precisely. I think she may have been somewhat matter of fact about it. As I recall. She certainly didn’t burst into floods of tears, neither did she throw all her clothes off and go running round the garden naked whooping for joy, but no, I suppose, matter of fact is the best way I can think of it really.
Breaking the news to friends
Most people told their close family and friends about the diagnosis before spreading the word amongst friends and acquaintances. Lilian made an announcement about her illness at a meeting of the Women’s Institute. She knew that she would have to give up her role as treasurer. She thought it would be better to tell people what had happened herself than to risk gossip and whispers. People found that others knew little about pancreatic cancer, which was sometimes difficult.
Peter told friends that he had a rare type of cancer and that although his prognosis was bad his type of pancreatic cancer was less bad than others.
Peter told friends that he had a rare type of cancer and that although his prognosis was bad his type of pancreatic cancer was less bad than others.
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What sort of reaction did you have from friends and colleagues when you said that you had cancer? This, this was the year 2000.
Mm. It was, one of the problems with the pancreas is that people, I mean journalists they don’t know a lot about anything, but they know a little about a lot of things, and so it was, was and still is quite difficult to get over the fact that I had a, was lucky to have a very rare kind of pancreatic cancer, or comparatively rare kind of pancreatic cancer whose prognosis although very bad in my case, because it had got so big, is not as fundamentally bad as other kinds of pancreatic cancer, or the main kinds of pancreatic cancer. And since neuroendocrine tumours were not well understood by anybody, well doctors hadn’t heard of them, you couldn’t really expect my colleagues to have done. So there was a certain amount of concern that I was underplaying this but, one, I was, I was able to persuade the people that mattered, the people that mattered to me about the, of the exact truth of as to what was going on, which was exactly as I’ve set it out to you as I, as I discovered it.
Most people’s friends had been very supportive too, especially if they had been through cancer themselves. Friends offered practical and emotional support. However, some friends found the subject embarrassing and had avoided them. Others recalled that friends had cried when they heard the bad news. Their emotions had been hard to deal with. People felt they had to support their friends, at a time when they needed the support themselves. Some said it could be harder for the ‘helpless onlooker’ to deal with the news than it was for the person who was ill. Sometimes other people’s reactions seemed more fitting for a death than for an illness.
Most of Alison's friends were supportive and offered practical help, but a few 'broke down' when they heard the diagnosis, which Alison found difficult.
Most of Alison's friends were supportive and offered practical help, but a few 'broke down' when they heard the diagnosis, which Alison found difficult.
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I mean some people would not want to talk about it, be really practical, offer sort of, “What can we do? How can we help on a practical level?” and not want to discuss what’s been going on. Possibly because they didn’t want, didn’t know how to talk about it with you. Other people would, as I said before, would, would break down and, “I don’t know how you’re dealing with this” I found very difficult to take. And, you know, mostly though I found that people have been incredible, incredibly supportive, incredibly kind….. Yes, most people have been incredibly supportive, incredibly kind and ……Yes, I mean other people, I mean some people have been very practical with their help and don’t want to discuss it. I’ve had people even within the family who haven’t wanted to discuss any details. And that’s fine. But, on the whole most people have been incredibly supportive. A lot of them, especially friends of my own age, incredibly shocked. Most people expect you to have had breast cancer if you’re my age. So the pancreatic thing was just, “Where did that come from?” And they didn’t know an awful lot about it. And a few people, when I was diagnosed, looked it up on the Internet and they were very, very shocked at the statistics and, and were really fearing for, for me, though they didn’t say so at the time. No, they, they did.
When Hugh's mother was diagnosed with cancer most of her friends were 'fantastic' but others struck the wrong note and sent inappropriate cards.
When Hugh's mother was diagnosed with cancer most of her friends were 'fantastic' but others struck the wrong note and sent inappropriate cards.
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Did you find it difficult telling other people about what had happened, or did your Mum find it difficult? What were other people’s reactions?
Well I do remember after the diagnosis, a lot of people were fantastic, and a lot of other people were meaning to be fantastic, but just struck the wrong tone. They would send pretty much, ‘In deepest sympathy’ cards or, ‘In Memoriam’ cards, you know, really gloomy sort of religious death cards, and they’d leave these messages on my Mum’s answer machine. Really such solemn, you know, “I’m so very sorry to hear…”, and they all took a little too much interest. It was like they were always calling, and in the end we called them ‘the ghouls’ because they just were sort of getting too much satisfaction out of, well not too much, but too much, you know, vicarious sort of fascination out of the drama.
Elaine thought that the situation was harder for her husband than it was for her because other people would 'scuttle away' when they saw him coming.
Elaine thought that the situation was harder for her husband than it was for her because other people would 'scuttle away' when they saw him coming.
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I found that with me and people who knew me, it was fine. You’d just talk about it naturally and fairly matter of factly. And it wasn’t a sort of big roller coaster for me. But I think for my husband, he found it very difficult because so many people avoided talking about it at all, would even scuttle away down corridors, or cross roads. And he found that very upsetting. In fact I think the whole business really was harder for the onlookers like husbands and children, husband and children than, than for me. Because I felt I had the job to do to get better. And I have to say that at no stage actually, apart from the little bit of nausea and getting over a big operation, did I feel ill. And the other thing that people used to say to me, “I’m sorry; I hear you’ve been ill.” And I’d sort of say rather, “Yes, you know, I haven’t been ill. I’ve just had a big operation and I’m over it. And, you know, we’ll see what, see what happens.” But I didn’t feel ill, as I think a lot of people do. I wasn’t in pain.
Rory and her husband send regular updates by email to friends to keep them. This helped as it meant that friends didn't have to keep ringing up and meant that they were less likely to feel embarrassed.
Last reviewed November 2020.
Last updated November 2020.
Next review: November 2023.
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