Hello Vicky44, 

A warm welcome to Cancer Chat. I am so sorry to hear about your husband's diagnosis. I hope you won't mind I have added the words 'with stage 4 bowel cancer' to your title. This will increase the chances of more relevant replies to your post from others who are looking after a loved one with stage 4 bowel cancer and who I am sure will have some good suggestions for you to help you look after him. Talking to children about this can also be very difficult and we have some information on our website here to help you find the right words to talk to your little ones. 

Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm if you ever want to ask them anything. 

I will now let some of our members who have been affected by bowel cancer come and share their experiences with you. We're all here for you anytime you need to talk. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi,
My husband has recently been diagnosed with terminal bowel cancer at the age of 34, we have a 4 year old son. 
I completely understand how you feel as my husband doesn't like to talk about it either. The thing I find most helpful for him is just to keep asking if he needs anything. My husband is very proud and I'm not sure if it's just because he is young and male or just his personality but he doesn't like to ask me to help him do anything. I know with our son I just have to keep him busy, but he is very adaptable. Even at his young age he understands that daddy is very poorly and he 'can't do bundles anymore' but they find other things to do together like watching films and playing video games when he's up to it. 
Make sure you make time for yourself it can be very isolating being a carer, go out with friends whilst the kids are at school and your husband is sleeping. He can get some rest but you can clear your head a bit. Take any offers of help from friends and family. Speak to your Macmillan nurses as they will be able to point you in the right direction for counselling if you feel you want it. I went and found it quite insightful. 
 

hope this helps, your not alone 

bec x

I'm sorry to hear of your situation too. My children are a lot older and I think because they understand what's happening neither of them will talk. They no I'm here if they have questions and we tell them everything we learn from our consultant. My hubby sounds exactly like yours. I think he just can't face it head on. I have no understanding of how he must feel also. Thank you for your reply too. X

Hi, sorry to hear about your husband,  how old are your kids?  My husband has stage 4 cancer too (44) and we have two girls 8 and 12.  Neither of them talk about it to me either, though I think they maybe do a little texting to friends about it..not sure.  He is in the hospice at the moment in the last weeks and its really really tough..my 12 year old shows no emotion at all- you would think he was in the hospice for a sore toe!  He has cancer of the oesophagus which has gone to liver and other places too now..

It's probably because our son is so young but he asks so many questions, however I think he knows not to ask my husband he seems to only ask me when we're on our own together. I answer everything honestly even at his age as I believe this is best, I also tell him he can ask me anything he wants. I spoke to my sons school about my husbands diagnosis as soon as we found out and they now give our son extra support which he absolutely loves as the teacher that takes him out of class is amazing. Knowing he's got that support at school puts my mind at ease as he's got someone else to talk to if he wants. I tell the school everything, if we're having a bad week, if the ct scans have come back with bad news as this all has an effect on the mood at home and has a knock on effect to our son. 
spmething I forgot to put put on my previous post is that my husband wants to know nothing about his diesease, I know it's an extremely rare type so theres not much even on the internet. However if you wanted to know the oncologists are more than happy to talk to you on your own if you want to know and your husband doesn't. As I've worked in a pharmacy for 13 years I deal with all of his medication and put it into a dosette box every week so he's got the independence of doing it himself without the worry he'll do it wrong. We now also have measures in place where I can talk to his GP about his medication and illness. 
bec x

David
 

Thank you so much for your very honest insight from your point of view as the patient. I think I can recognise some of the stages you have described in my husband. 
It's also nice to hear that what little I am able to do is probably helping. 

bec x

Hi. My children are 22 and 16 so understand the impact, but they just won't even have a conversation with me. I'm so sorry to hear about your husband, it must be so hard. I worry for my daughter (16) she's a daddy's girl. We haven't been given any information other than they're arguing in the MDT meetings about what to do next. It's so frustrating x

Thank you so very much. Your insight is exactly how my husband is. He gets very stressed and uncomfortable at hospital appointments talking about it. I know he is also stressed about the money side of things. How you explained the way you felt, I can see the same in my husband. He had his tumour removed nearly four weeks ago, we saw the consultant last week and he said he still has advanced cancer. They have been arguing which way to treat him as some want to operate on his liver then aggressive chemo, done want them aggressive chemo then the op and then we have the rest who say only palliative chemo. He must be in total turmoil. He thinks he has terminal cancer, yet they haven't actually said this. I'm so pleased that you fought and won, it gives me some hope that maybe he will still be with us in 6 years too. 
 Thank you

   Victoria x

Hello Vicky,

                If only things were straightforward,but of course they never are,and the fact there are so many differing opinions only reinforces that. In my case the bowel and liver consultants were arguing who should get first crack at me, fortunately the decision was removed from my hands fairly quickly since the liver consultant said with the rate of spread if he had to wait 10-12 weeks l woukld be past the point of operating due to spread,and the bowel op would have been wasted.l was a very active 60 year old at this point,although my mind was lagging behind around the point of 40

                                                                                                            l think you have to keep faith in the medical teams advice, and if that results in the choice of options for you to make,, accept the decision you make as being the right one in the circumstances at the time, embrace the possibilities and never look back.Your focus must then be soley on the future whilst having accepted the realities of the situation.The main thing is to keep as calm as is possible,keep stress and anxiety to minimum, and try not to forget how to laugh and smile.Its bad enough being really ill, but being continually miserable with it is truly awful and even dark humour can lift your spirits and make things seem that little bit better.

                                                                                                           Hopefully the way forward will be decided very shortly and that the treatments have the desired results.Its important to remember you are all affected and be sure to look after yourself,and being a little selfish at times is necessary for you to be able to give all the rest of the time,

                                                         l hope the journey is successful,

                                                                                                                David