Peter,
Welcome to the club nobody in their right mind wants to join! I'm glad you're doing so well. In deciding about asking for more meds, just 'cause you have it doesn't mean you have to take it; it might be good to have some on hand and stretch out the doses as you need it less and less. I have to admit, when I was at that stage, at one point I just said "enough." Early on someone mentioned feeding tubes. During chemo-rad I had one and although I loathed the thing (for no particular reason, it wasn't painful, after I recovered from having it put in, and it wasn't much trouble to maintain although others have had different experiences) there were a few days towards the end of treatment when I was happy to be able to pour a couple of cans of high tech food right into my stomach rather than have to swallow more. I never lost my ability to swallow but at the end of treatment it wasn't fun. Best of luck going forward!


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15