Dear MTM59, I am so glad you will come here for support, and I hope we help you. Fighting this battle is so different for everyone, but some things are pretty consistant. It sounds to me like your husband's system is going to really have a problem balancing the pain meds and constipation. Maybe an enema to get him cleaned out is not a bad idea- but, at the same time, he needs to get alot of fiber to keep him moving. The Benefiber has really worked for us. I am surprised [based on John's experience with Erbitux] that no one told him to shave the beard before treatment started. The rash has been really bad for John and we medicate his face, ears, chest and back daily. The rash is so pronounced that he gets stared at if he goes out.
I really hesitate to say this, because I know how difficult it will be- and I am speaking from personal experience- but you need to keep the kids away from him as best you can. If you can pick times when his pain meds have kicked in and he feels o.k for a little while, let them interact with him [ask him first] The battle he is fighting does not allow much room for diverted energy right now.I had to remind my grandchildren, who were living with us, that when they had a cold or sore throat, etc. they wanted to be left alone, and that was how John was feeling. Not easy but honest. I am sending you many hugs, pats on the back and prayers for strength and determination to get your family through this. Amy