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Colorectal Cancer

Talking to children about bowel cancer

Decisions about whether to discuss a serious illness with others can be difficult. The need for support has to be weighed up against the desire for privacy. Sometimes people react to the news in a way that is unhelpful to the patient. Wanting to protect certain people from distress may also be a consideration. Some of the most difficult questions arise when talking to young children and teenagers about cancer. 

Parents of young children had to make difficult decisions about when and what to tell them about their illness. A woman whose son was only 3 when she had her treatment felt he was too young to understand what was happening. Nonetheless she prepared him for seeing her in hospital. Another woman whose children were 6 and 9, decided not to tell them what was wrong because their grandmother had died of cancer in the same hospital 3 months earlier. While she was trying to protect them she later regretted her decision. A man whose son was 9 at the time of his diagnosis decided to keep it from him because he feared the stigma this might bring. A woman with advanced cancer explains how she has prepared her children for the future.

 

Describes how she prepared her young son for seeing her in hospital.

Describes how she prepared her young son for seeing her in hospital.

Age at interview: 51
Sex: Female
Age at diagnosis: 41
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Oh, the worst, one of the worst parts for me was being the mother of a young child was, I didn't want my son to see me in hospital with all the tubes in me and somebody suggested to me that I should get him to come, come along to the hospital with me when I was booking in and seeing me in, in my bed, so he'd know where I was, when he didn't see me for the next few days.

And he, we did that and it was nine days before I saw him again when I'd had finally had the tubes out, he came in and he took off all his clothes and got into bed with me and he said "Where's the bad thing they took out your tummy?"

And they had found a very large gallstone uh, when they were uh, operating, it was a big one and I'd kept it by the bedside and I got it out and showed it to him. And he said "Why did you swallow that?" Which was a very sensible question from a three year old.
 
 

She regretted her decision not to tell her children she had cancer.

She regretted her decision not to tell her children she had cancer.

Age at interview: 47
Sex: Female
Age at diagnosis: 38
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I think which was a terrible mistake that my daughter unfortunately overheard and, I think that made her very angry and I think I underestimated the intelligence of my children and caused them greater concern by not being honest with them.

My son went through a long, long period, a number of years of, of not being able to sleep very well and being frightened that I was going to be taken away from him. And I think a lot of that may very well have been born of the fact that they knew something more was going on than I had told them and I believe that made them insecure.

But on reflection not even knowing exactly what the outcome would be, it would have been better to have sat the children down and explained to them precisely what was happening because even at their ages of six and nine, their imaginations must have been going mega-time. And that wasn't being the right, that wasn't the right way to have dealt with them.

I think that people need to make their children aware that there are many cancers and situations with cancer that you are fully cured. That to explain it through to the children and the process and maybe even have the children understood that their, their being there for you and everyone working together is important.
 
 

He has decided not to tell his son about his illness.

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He has decided not to tell his son about his illness.

Age at interview: 53
Sex: Male
Age at diagnosis: 51
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The primary concern in this particular area was our son and him being at that time um nine, ten years old, we decided not to say anything to him about it at all. On the basis that if it ever became really serious and I was given a, I was told that it was going to be terminal, at that point we could let him know and his, he wouldn't have to go through the two or three years, or whatever it is, maybe five or ten years, of, of agony of the association of his father, death and cancer.

So this was a, an, an early decision that we made which we've never ever had doubts about, although other people have thrown doubts on it. But we're quite happy with that decision and we've decided not to tell him anything about it.

He knows that at times I've gone into hospital obviously. We've been very vague about it and just skirted around the issue and said that there was some kind of tummy problem I had and the doctor didn't know what it was and they had to make some exploratory examinations and so on.

So he knew that his daddy was ill but never, we never, we've never ever mentioned the word "cancer" in front of him, because if we did um all sorts of things could come from that, he could be taunted at school.

As various news, newspaper and radio articles come up, mentioning the death of various famous people from cancer he would obviously associate it with his father and it would cause him an enormous amount of distress.

 

She explains how she has prepared her children for the possibility of her death.

She explains how she has prepared her children for the possibility of her death.

Age at interview: 37
Sex: Female
Age at diagnosis: 34
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I know they know what's going on but because I look so well its difficult for them to even think about me dying because I look so well, are you with me?

Yes.

You know. Probably if I ever get to the stage where I'm like can't get out my bed and I'm so ill and, they'll probably accept it and hopefully they'll accept it.

You know, its not as if we don't talk about it, I talk about it often, you know. Just odd little things come out and I say to them "Do you know that when people die they go up to heaven and become stars" and stuff like that to the little one. She goes "yeah". I say, "well I'll be the brightest star up there". I say, "so when you do your running I'll be blowing behind you so you run that little bit quicker."

And and say things like that so, you know, and things like you know "You can talk to me if mummy dies. I won't be able to answer you back but you know I'll be there, don't you?" She goes "yeah".

So you know I've got things like that sorted out and I say to her "You know the funeral's going to be really sad if and when," that's what I say now "if and when I die."

You know, so that's pretty much sorted out and I've left them sort of a, I've done them boxes and that with photos and little bits in and letters and stuff, that they are to have if anything happens to me, little memory things. So I've done all that.
 

People with teenage children often worried about the impact that their illness would have on their children's schooling and exams. A man with advanced cancer hoped he would stay alive until his daughter completed her GCSE's. A woman explains how she tried to minimise the disruption to her children's lives and why it was important that life went on as normal around her. A man with advanced cancer considers the impact that his diagnosis had on his two teenage daughters.

 

She tried to minimise the disruption to her children's lives.

She tried to minimise the disruption to her children's lives.

Age at interview: 56
Sex: Female
Age at diagnosis: 53
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We discussed with my surgeon, I told him that my children were in the middle of exams and I didn't want them to like have such a shock, could we just hold on until after the operation so that I could prepare them.

So I thought that was easier, I mean not that anything is going to be easy but it was better than saying "Well it's like cancer" and you know the big shock of it.

And despite what I was going through I just wanted everything else to be normal around me, not realising the impact it had on the others and how they were looking at me and they were trying to see if I was going to be alright.

But in all the time I was bringing myself out of my body and wanting to be, everything to be normal and wanted, wanted my children to just get on with their studies. And my daughter actually said to me "Mum I really would even give up my, not do my exams this year to stay and look after you." I said "No, no, no that's the worst thing you can do, that will just make me worse. I'll only get better if I can see you getting on with your life and with your exam and if I know that everything is going smoothly I can get better."

 

He reflects on the impact his illness has had on his two teenage daughters.

He reflects on the impact his illness has had on his two teenage daughters.

Age at interview: 57
Sex: Male
Age at diagnosis: 57
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I then had to tell the daughters. My eldest daughter is 19 and she's very independent. She assimilated the news, just gave me a hug and just said "Let me know if there is anything I can do to help you."

The younger daughter's only 15. She acts like an absolute hard-case but underneath she's quite sensitive and the impact on her I knew was going to be much harder because um, I'm one of the few people that she admits to respecting. I think her head teacher, one or two other people but she doesn't have a lot of respect for a lot of people um, she's pretty, she's on the verge of being a little bit wild but underneath she's basically good. And she knows that she needs my controlling influence even though she doesn't, doesn't like it, she knows she needs it!

Also um she has a horse and I finance the horse and I drive her to horse shows and this was a major part of her life and I made it clear that if I wasn't gonna be working we probably wouldn't have enough money to keep the horse and that very big part of her life, it's been a big part of her life for the last four years, would probably have to end.

She took it very stoically and again, she gave me a hug and said she understood but I think it must have been a huge blow to her, a huge blow. She has a, a close friend whose mother died of cancer about three years ago and she's seen the effect it's had on her friend. She's 15 and I can only guess the effect it had on her, but she wasn't gonna show it.
 

One woman has an adult son with a severe learning difficulties. Her family may also be affected by a rare genetic syndrome, which greatly increases the likelihood of developing bowel (colorectal) cancer. She explains how difficult it would be if her son needed to undergo screening.

 

She has an intellectually disabled son and considers what might happen if he is ever screened for...

She has an intellectually disabled son and considers what might happen if he is ever screened for...

Age at interview: 62
Sex: Female
Age at diagnosis: 48
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Nobody, nobody will get near him for an endoscopy I can tell you that, he just wouldn't understand. It's, it's tricky cutting his toe nails.

He's very good at the dentist, I think probably because you know I do his teeth morning and night anyway so I believe you can have an endoscopy under anaesthetic so I'll think about that one at a later date.

I mean I will watch his stools and there's certainly no problem there at the moment. I mean I will be aware of what to look for and I am, I mean I do keep an eye on him in that area.

Does he have to be accompanied to the loo?

Yes I do accompany him because his personal hygiene is not sort of terribly good and I do actually wipe his bottom for him but when he's at the centre they're always short staffed so he copes on his own quite well. He has an occasional accident if he's out and can't get to a toilet, and somebody doesn't understood him because his speech is very poor.

How old is he now?

But he does need help. He's 30.

30?

He's 30 mm, he's physically very healthy but he's mentally quite disabled and so he does need quite a lot of help.

He can't read or write, I mean he can't recognise his name. He can recognise logos of his sports club but he needs a lot of personal help but he copes on his own quite well. So we'll cross that bridge when we come to it. I can't see any point in worrying in advance.
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Last reviewed August 2016.

Last updated May 2010.

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