Pancreatic Cancer

Telling teenagers or younger children about a diagnosis of pancreatic cancer can be the most difficult thing of all. We spoke to people about their experience of telling their young or grown up children that they had pancreatic cancer.

Ben told his teenage children exactly what was happening. They knew that they could talk to his Macmillan nurse about his illness. When Alison was diagnosed with cancer she also felt that it was important to tell her children the truth. William’s nurses gave him some useful written information about how to talk to his teenage children. He told them that he was ill and needed surgery but he didn't tell them that he was going to die. He didn't want to be ‘brutal’ nor did he give them false hope.

When Helen's cancer came back she told her 13-year-old son that she was having more treatment but she didn't tell him that the cancer was back. She wanted to give him information gradually. However, she was more honest with her 23-year-old.

Most people said that their teenage children were shocked and upset and cried when they first got bad news but then appeared to handle the situation really well. Lesley’s 11-year-old daughter looked at Riprap, a website for young people who have a parent with cancer.

When Lesley told her 19-year-old son and her 11-year-old daughter that she was going to die they appeared to cope with the situation remarkably well.

When Lesley told her 19-year-old son and her 11-year-old daughter that she was going to die they appeared to cope with the situation remarkably well.

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Age at interview: 47

Sex: Female

Age at diagnosis: 45

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And so because I’d told him I could finally tell my son, who was 19. So I got hold of him, and sat him down. I’d just made the bed and I sat him down on the bed and I told him. And he just sort of sat there and went, “Right okay.” I said, “Are you alright?” He went, “Yeah, fine. Can I go now?” I went, “Yeah, okay.” And he went in his bedroom. So he probably went off for a, you know a little cry really. But I think one of the worst was telling the youngest one.

 

Because she was, she was just coming up for 12. And, I was, “Oh this is going to be hard.”

 

Well my eldest daughter had, when I’d gone down the couple of days before, she said, “Right I’m coming down.” I said, “Okay.” She said, “I’m coming up for the weekend,” she said, “I’m booking some time off.” She said, “I’ll just tell them I’m not well, or if I can’t get any holidays.” I said, “No,” I said, “If…” She said, “No, no I want to come up, I’ll be up this weekend.” Because she’d just passed her driving test so she was made up. “No I’ll be there.” I said, “Okay.” 

 

So she was there with me. In fact we were sat here. And I got them sat here, my eldest daughter sat at the end. And then I had to tell her.

 

That must’ve been awful?

 

Never again. It was really, really bad. I don’t, she was a lot better than my, than my fella.

 

She didn’t sort of fall apart. 

 

Did the Macmillan nurse tell you where you could get any support for the children?

 

Well they gave me lots of leaflets and information on how to tell people, especially children. There’s even websites that children can go on, and it’s called Riprap or something.

 

They can go on there and put on their thoughts and how they’re feeling. Things like that. And, so I thought, right, well I’ll get her to look at that and things. She’s sort of sat here and I’ve got my arm around her, my other daughter’s got her arm round her, arm there, and she was fine, she was, she was really good with it. But I never want to do that again, tell a 12 year old. You know you’re going to pop your clogs like.

 

And has she used the website?

 

Yeah. Yeah she’s been on it a couple of times. But she’s like me, she just gets on with it now. I mean she even says things, like she’s got first dibs on this skirt I’ve got. 

 

First what?

 

First dibs. She’s got the pick of this dress, this, she wants this skirt, when I go she’s, “Can I have that?”

 

Oh dear.

 

You know. It’s just the way we, we do it. She, you know because she wants this skirt. She absolutely loves it.

 

David (Interview 30) and Fiona’s sons were still at primary school when she was diagnosed with cancer. One day David was with their younger son and he told him about his Mum’s illness. At the same time Fiona talked to their elder son and told him what was happening.

David and Fiona told their young sons about Fiona's cancer. The boys were upset but at times seemed to forget the serious situation and played normally.

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David and Fiona told their young sons about Fiona's cancer. The boys were upset but at times seemed to forget the serious situation and played normally.

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Age at interview: 43

Sex: Male

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Well, we’ve got two children, both boys. They were both at primary school at the time. They obviously knew that Fiona was unwell. And you have a … you’ve got a lot of difficult things going on…..

 

And one of the difficult things is how you tell your children [crying].

 

Yes. … Did you have any help with that? Did anybody advise you?

 

No, because we dealt with it quite quickly. Dealt with it…. Both Fiona and myself were, we were both of the same mind etcetera. We didn’t want to, we didn’t want to hide things away. Neither of us thought that was the correct way of going about it. 

 

But we wanted to … when we told the children we wanted it to be when we knew what it was. So rather than before the diagnosis, rather than saying, “Oh it might be this or it might be that”, which I think to a child would be quite scary, I think probably for children, knowing what it is that’s affecting their mother was what they needed to hear. So once the diagnosis was there, we did speak to them and we let them know that it was a cancer. I think because we weren’t exactly certain what type of cancer, we couldn’t put a … the pancreatic term to that. But we, we did tell them and it happened in a rather unplanned thought out way. And in fact I was with one of my sons, [name] who’s the younger one, and [our elder son] was with his mum. And we both talked about the issue and described the issue, without actually knowing the other one was doing the same at the other side. And I think it’s probably … well it’s almost a bigger issue to the parent when you do this because I think you have the feeling of the gianormity of what you’re saying, whereas the child is obviously concerned, worried about what’s going on….

 

But doesn’t fully understand or appreciate what you’re saying even though, I can talk for what I said. I said that it was very serious and this could be a very serious thing for his mum. And that there is a prospect that one outcome could be that she may die. So that’s a very difficult thing to go through. 

 

But once it was done that’s, that, that side of what you’re going through is no longer an issue for you because you’ve done it. And there was you to concentrate on, the important things of what you’re going to do and, well going forward from there. And I think it’s … I, well looking back on it, I’m a bit upset at the moment but…. 

 

Would you like a break?

 

No it’s ok… I think it’s probably for us and I can’t speak for other people, it’s the right thing to have done. And I think for the boys and I’m saying us as in the family, the four of us, I think that was the right thing for the boys as well. 

 

And how were the children when you told them about it? 

 

They were upset…. I found with the children, I think children react probably in a different way possibly to adults. I think it hits them and goes hot and cold. They can be very upset one moment and then playing with their toys the next, which is quite surprising I think because for Fiona and myself we were, we were feeling like we had this huge pressure all the time with us.

 

Simon and Karen had very young children when Karen was diagnosed with cancer. The baby was only four months old and their little girl was three. The hospital gave them helpful information about how to talk to children. The Winston’s Wish charity website was useful too.

When Simon and Karen told their daughter about Karen's illness they did not make up names or use analogies or metaphors. They were honest.

When Simon and Karen told their daughter about Karen's illness they did not make up names or use analogies or metaphors. They were honest.

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Age at interview: 39

Sex: Male

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So what did you tell the children all this time?

 

They, our son was only four months old when she was diagnosed.

 

So he was largely unaware. My daughter was three. And we told her that it was called cancer. We told her that there was a lump in Mummy’s tummy. And that she was going to hospital to have medicine to try and take the lump away I think. You know we didn’t want to give it any funny names. This is where resources, such as well would I don’t know if I should mention names but a website, Winston’s Wish was useful. And also the hospital were good at giving literature as to you know some of the basics, and where to find information. And I thought it made sense to me that you shouldn’t make up strange names or analogies, or metaphors for this for a child, because that can actually end up you know sort of confusing things. So we just told her honestly. 

 

And so she understood, you know the way children do. They, they, they take everything on you know as it is so she understood why Mummy was being sick. She understood why Mummy had to go to bed. She understood why she couldn’t go in and see her. One time or I think one or two times, she came in to see Karen in hospital because we didn’t want her to be scared. You know she knew that Mummy went there and that she came back different. So we wanted to take that fear away.

 

Grandchildren may also be involved. Ann didn't want her grandchildren to know about her poor prognosis months and months in advance of her death, but she did want them to be prepared for it. Several people said they encouraged young children to ask questions about the illness. Maureen answered all her grandchildren’s questions but did not give them too many details about her illness. She liked to keep things ‘simple but not secret’.