I am so sorry for what is happening to you and your husband. I know many here will help you through this . All the best to you both. ... View more

Reading this reminds me how patient my husband has been throughout . In the beginning hugs were sometimes all that helped .I would suddenly feel like that was all I wanted. We are both very affectionate anyway and have always been with each other. ... View more

I guess I just "live with it " now that I am in remission. Between diagnosis and the start of treatment was the worst time for me ,scary . After the final surgery ,during radiation ,what surgery did was depressing . Now 21 months after radiation finished,I think about it ,live with side effects and the knowledge that it will return , but will not worry until something happens . (maybe a tiny bit when there is a new pain in or near the affected area) . This attitude came from talking to others worse off than I . Living with the effects is/was for me worse than living wih the thought of its return. That's easy to say now but was not early on. I just try to live as normally as possible ,but it's not the life I had. I wish you the best ,too. ... View more

The side effects of head and neck cancers can cause depression. Look at Survivors of Head and Neck Cancer on Facebook if you want to meet others with eating issues. ... View more

I can understand you feeling torn .You need to remember your daughter has her husband and most likely friends will be able to help her with the children. Yet ,I imagine I would feel just as you do if faced with the same circumstances. You know you are doing your best and it does seem unfair that this is happening. The Cancer Council was good advice. ... View more

Yes,it was you I saw and the person who commented after Sharon was me. I had wondered about it being you but there was more info. in one post so I thought there were two different people. I know nothing about your cancer except what I see in postings. I just feel for others and know that it's nice to have people who care even if they don't know you. WHAT A COINCIDENCE !!! ... View more

Many people here have talked about similar reactions. Some family keep quiet because they don't know what to say,some want to give you privacy to deal with it and some just don't care as much as we expect. That's my conclusion. I think it's best to accept support and kindness from whomever gives it and eventually the hurt caused by the others will lessen. This will take quite a while . In the meantime know that many here do understand how it feels. I think it's sad that this happens. I had this from some family,not all,members but now have almost accepted that some relationships have changed. I 'll bet the particular people don't even know how I think and feel about them now. It is just over 2 years for me and the only times I think of it is when I read a post like yours .Then I confess I do feel the hurt again. I can't say anymore for now except that I hope you,your kids and your husband get through this without much more pain. ... View more

You may be interested in a group on Facebook . It's called Rare Cancers and Tumours. I just left that page before logging on here and someone had posted about just having had a Perionectomy. Wishing you a good recovery. ... View more

I looked up this cancer and found a support group for this cancer and similar cancers. It's can be found at www.heardsupport.org/ I don't know if this is helpful but you can check it out if you like. I can't offer any suggestions in answer to your question.I can't imagine how you are coping but I suppose it's a matter of just doing your best. ... View more