The mouthwash wears off pretty quick ... it's a vicious cycle ... it numbs your mouth, but then you keep eating (that's what it's for) and so that takes away some of the mouthwash residue and un-numbs the mouth, so it hurts again, and you have to start all over. Yeah, it's rotten for every patient, but it's still rotten. And it tastes funky too. That won't be helping his mindset. Not excusing him ... just remembering what it was like. I'd go through that stuff like crazy, and then wonder why it kept wearing off ... I was sure I was doing it wrong, but it was just that much pain, by the end. (Not at the beginning, at least, but I'd had time to heal more from the surgery?Maybe?) After awhile, even 'too cold' gets painful too ... you'd think it would help numb, but not always. Mouths are surprisingly more sensitive than we realize.

The HIPPA thing is a good point. I didn't sign one for my mother, but she was with me at most of my appointments as my driver (so my husband could work), and she was therefore my spare ears. I was glad for it. My doctors never asked me for paperwork ... I suppose they figured if I let her stay in the room, it was okay to talk ... but in retrospect, it might have been good to get a signed form so she could have asked if we'd needed her to be a point of contact when I was not present. My husband would have been allowed, I think, but he would have been out of the loop on some of the day's details till we caught him up each night. You might want to double-check with his doctors to be sure about the papers, just to be safe ... if he does end up falling ill and in the hospital, as Christine described, you want to make sure you can speak and ask questions on his behalf, because he won't feel like talking, and he'll need a voice. Literally.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery