I went on a trip with my PEG tube (during treatment, yeah, kind of stupid, but it kept me sane) ... it was weird, but it worked. I just took breaks when I needed, and sat apart to fill 'er up ... then just chatted with others on lunch break. (It was a woodcarver's retreat, so kind of a different setting.) I can eat more foods now, though without teeth (haven't got my dentures working yet, been a year on that) ... that's been hard socially and calorically. I'm a Scout leader, and I need my food. Plus everyone always wants to eat, and ... it's hard to go places where I can find something that is safe for a post-cancer mouth (even just the spices, never mind the textures).

But you learn to make allowances, and hopefully those around you will too. Yeah, I cry about it too. A lot. People ask stupid questions. My husband keeps thinking it will get better. (Since we are several years out, my taste buds are where they are ... that's not gonna change. The teeth, that might get better.) So he's gotta learn not to push. But overall, folks are getting used to making accommodations ... and I am learning how to advocate so I am not so uncomfortable.


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