Thank you all for your replies. They have comforted me a little (I wish I could say a lot, but I am totally overwhelmed right now), and I appreciate it. Today was the first treatment - chemo (Cisplatin)and radiation. We did not even know the extent of today's treatment. Thought the chemo was going to be an injection and medications for nausea and were surprised to learn when we showed up this morning that he would be there all day. Which was not a problem, but we were a little upset at the lack of information on what to expect. I am very overcome emotionally at this point even though I am usually a calm person, but find I am breaking down at the drop of a pin (try not to around my husband, if I can help it, but I am not always successful). As I read everyone's posts, I wonder if we should be more informed than we are, as I could not tell you for certain what his stage is, although I believe it is IV, the radiation oncologist said head and neck cancers are not really classified as other cancers. I feel stupid, but to be honest, I do not even know if it is conventional radiation or IMRT that he is getting, but plan to ask that question tomorrow.
My husband's ENT surgeon during his first surgery for biopsy, opened his neck from the outside when he didn't see anything from the inside, that was January 9. He had another surgery January 16 to remove left tonsil and do other biopsies, to no avail. The thing is, after the January 9 surgery, he left a drain tube in his neck, which he removed a couple days later, but did not totally close the "hole" as he said it was best for the matter to keep draining out. We have asked a couple of times about closing it, but he said no, that it would eventually close. It gets clogged up, though, and when it does, becomes even more painful for my husband. Now seems that something is sticking out from the hole, but it keeps draining, only because we have begun putting "draw out salve" on it (we did this on our own). Has anyone had this experience? It doesn't seem right to me. Also, the lump on his neck has gotten progressively bigger, but was explained away as fluids, necrotic matter, or infection within the site. We wonder if it is the cancer spreading, but no one seems to acknowledge that. One more thought that may seem stupid to ask but with an open area on his neck, would that cause the cancer to spread? Thanks so much for your input. I realize we have a lot to learn and it is helpful to hear from those who have had this experience.
Michele