Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | I'm STILL a member of the water-bottle-carriers club ... except (shh!) I fill mine with Coca-cola. Nobody gives me a hard time ... it's pretty darn clear I need the calories, LOL, and with my teeth gone, what other harm is it gonna do? (It was also the only thing I could keep down while pregnant, and one of the few things that still tastes like it should, so it's my comfort beverage. Except for Coke Icees ... those are even better!) And I'm about four years out from treatment. (It's also handy because I have meds I have to take at weird times of the day, so having a drink helps ... I can NOT swallow pills anymore, anything bigger than a mini m&m or a sprinkle from a cupcake.) sorry ... rambling ...
I had the tube, and I was able to transfer back to regular (soft) food somewhere between end of treatment in March and removal of tube in June (if I recall correctly) ... but I'd practiced swallows a lot during treatment, and though I never did hit Christine's suggested calories (formula intolerance), I was doing better on nutrition than your husband was. It was a real emotional boost to get rid of that thing ... though until he really can keep food down, I wouldn't go there. The swallow test is a REALLY good idea. And something to keep an eye on from here on out ... we all get weird random choking spells, for years. I haven't had to do that yet (had a good therapist till this year when I had to take time off), but I can see it might be in my future later. And if for some reason you're not with him at that point, write it down on a list for him to work from, or make sure it's in the notes of his primary caregiver. That doesn't have to be your responsibility forever, okay?
((hugs)) ... always thinking of you!
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
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