Amy, Do you have anyone, a friend or relative, who can do some of the research for you when it starts to feel too overwhelming? It would need to be someone you could trust to get good information, of course. I ask this although the only person I would have trusted to do this, my husband, was less than helpful in this regard. But in retrospect it would have eased my mind.
You are in an especially tiring and overwhelming period right now, being unsure whether your tratment is done or whether you need radiation and all the worries that go along with that. I think people on this board who were just sent to radiation as a matter of course, distressing though that is too, may not appreciate how huge this can be when you feel like the choice is at least partly in your hands (whether it should be or not is not the issue--depending on what you do, it is).
When I was at that point, like you, I could think of little else. I felt very helpless and very out of control (it also didn't help that right after my glossectomy I was told I had stage I breast cancer, something I knew was a possibility but had been hoping the biopsy would come back negative--as they often do in breast cancer biopsies. So I had almost immediate surgery for that followed by and almost immediate post-surgical infection that shouldn't have happened but somehow did).
Anyway, if you don't have friends you trust to research for you, I bet you have friends who would be willing to come over and help you do laundry and clean. This can be hard for women especially, I think, to do. We feel like we should be able to take care of everything ourselves. When I was diagnosed, I had three women friends who are some kind of cancer survivor. ALL of them said to me, in one way or another, you need to realize that even if you aren't comfortable making it all about you, this is a time when it IS all about you. So take care of yourself. Ask for help.
You live in or near a large enough city that I'm sure there are cancer support groups, even if there isn't one for oral cancer specifically. Call the American Cancer Society and see what's available. In my city, there is a local nonprofit dedicated to helping women with breast cancer. They had a grant for 10 free therapy sessions for women facing difficult breast cancer. Actually if I had just had the breast cancer alone it wouldn't have been so difficult but anyway, they said I qualified and they referred me to a fantastic therapist who has had experience counseling people going through cancer (if you go to a therapist, be sure you find one with this experience).
Are you a member of a church or synogogue or any other group that might offer support informally? If so, see what they can offer in terms of help. Also don't forget your workplace. My union kicked in with all sorts of help--including tkaing a collection for some money that I used to hire a cleaning person when I couldn't handle the clenaing myself-- and my workplace also has an EOP plan that would have covered me for some therapy (except I would have had to switch therapists to use it and I didn't want to do that).
Once you decide on a plan of action from here--further treatment or not--I think you'll start feeling better. Nothing is worse than not knowing. But meanwhile, recognize that this is a HUGE life-flipping big deal and you don't have to do everyhting yourself but you may have to make some noise to get some help--keep making noise until you get yourself whatever help you need .
Nelie
