Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | 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
|