Colon Cancer Support Group

Hi, I have two children who were aged 12 and 16 when I was diagnosed three years ago. They had to deal with the fact that I had bowel cancer that had already spread to my liver and lungs. I decided on day one to tell them the truth and never to lie to them. Sometimes I was very careful how I worded the truth and if they asked questions like " are you going to die" I would answer " that it was possible but that I was getting treatment to help me get better and I was hoping that the treatment would mean that I wouldnt die". Not lying to them and keeping them informed seemed to make them less scared as they didnt feel I was hiding bad news and it made talking to others about my illness much easier as I didnt have to wait till the children were out of the room and they gained confidence hearing me say to other adults " its ok you can talk about it, the children know everything". I hope this helps, I know everyone is different and only you know what is best for your child.

Best wishes Jane

Hi, I thank you for responding to my post I had actually decided the day I was diagnosed that there was no room left for anything but complete honesty with my kids. My son is going on a rollercoaster ride with his emotions which I completely agree with, but am not always able to dispell for him. I have a aproached the subject of counseling with him but he at this time is totally against it, I appreciate your support and hope to hear from you again in the future. Take care of yourself and please feel free to keep in touch.

I am stage 3, and have a 5 year old who went through range of emotions, mostly phyically shown by regressing to bedwetting, wanting to not let go of sippy cups etc. The worse when I went in for surgery for 9 days, he was 4 at the time and it really took a toll on him, as he hasn’t been separated from me before then. When I got out he really played up as Grandma had been looking after him and after a week of being out of hospital and not really looking after him as I wallowing in my own pain etc he had a pretty big melt down, and I remember in totally agony putting him in time out and showing him that I was still in charge, then when we made up telling him how I loved him so much, but I just had been ill and was so sorry he hadn’t had all the cuddles etc he normally did for me. Ironcially he woke me up and made me realize I had to give him some attention, not a lot just to show he was still so loved and cared for by me. 6 months later its all old hat to him and chemo/ports/pumps he doesn’t even really care about, yet we are still working on night time wet beds ..

One of the best things for this age was a book which can be downloaded from the web called Kemo Shark. http://www.kidscope.org/kemo.htm scroll to the bottom of the page and you can download the whole book. It really helped my son manage, and on top of a book I read that one mother had said she had power rangers in her tummy fighting the bad gusy, I used this too and he suddenly found he related so much easier. In fact its quite amusing when he tells people that red cells are bad, but then some are good but pink are the best !

I have talked to various people with children at different ages, and getting the feeling under 8 they cope pretty well, and over they have a lot of emotional issues. One lady the other days said to me her 10 year old was having issues, cos the world suddenly wasnt evolving around her. Luckily for me I have a child who has lots of love etc, although its been a hard road for everyone.. but I am firm believer to just show them they are still loved so much, and tell the truth as much as possible but also make it age appropriate. Ie when my son asked me if I was going to die .. I said not for a long time I hope, and then realized a long time for him is next week, so now say I am going to live forever. If the worst happens and I get stage 4 and get to the point I am going to die, then we would tell him but in the way you tell them I truly think depends on the age of the child, and also when you tell them things .. ie 2 weeks for a 5 year old is a life time, for a 10 year old they have a clearer concept of what 2 weeks is.

Hope this all makes sense .. great topic btw

You may have tried this, but I suggest the approach that you are the one who wants counsel and you would like his support. So that it comes across like a request rather than a demand. Then he gets to feel like he is giving something rather than something else being taken away from him -- such as his ability to make a decision. Because he is already faced with the reality that he did not have a choice in your illness.

I think that kids are not going to agree to counseling because they feel safer in denial and they intuitively know that going to counseling means moving out of denial into a place of acceptance.

Therefore, it is best to devise a plan that may initially make it appear to him that he will be on the sideline looking in (as he is sitting beside you). And the brilliant therapist will guide him in as he/she picks up on his readiness cues. This way he will feel safer in the gradual handling of all he is holding onto. Because, I suspect, just the idea of going to a counselor implies to him that he has to give it all up... and he is not likely to agree to that. Also, if you construct the dynamic so that he is going to support you (which is still true) then he does not have to struggle with the added effect of "there's something wrong with me--and I don't want my friends to know".

If you are not sure how to devise this plan, such as how to get your son there with you, then I recommend you see the counselor first because the counselor is just as much there to help give you different perspectives on how to help/approach your son. And together you and the counselor can come up with an effective plan for you and your son. I recommend you do this anyway!

Trust me, I am saying these things from regret that nobody figured out a way to get me to counseling when I was your sons age and lost my mother to colon cancer. I am 33 now and could be a lot less scarred if I had gotten help, but I was a child and the decision should not have been left to me not to get help. I am not saying force it, but be creative. Counselors are trained to be creative and together y'all can make a necessary impact on his emotional wellbeing.

Do you already have a counselor? Can you set up an appointment for you and the counselor so you can discuss options for getting your son in with you and how she could carefully engage him?

Thank you for allowing me the opportunity to share my thoughts with you as it has been therapeutic for me by being able to ask for things I did not know how to verbalize at 13.

Do you have much support for you?

Best Wishes.

I have 3 kids. 17, 11 and almost 8. My husband and I have talked with them about everything from the start. We welcome there questions and their tears. My son started acting out at school. But after a bit more talking things out things have turned around. When I was doing my radiation I even brought them a couple of times to help them understand what is happening to me. I hope this helps you.