Aaargh. I had a longish reply written to this that just got lost in the cybervoid....

Tom, I really appreciate your response to this because I know you've been there and done that. Am I understanding correctly that you are on the tube still more because of loss of taste/smell than ebcause of inability to swallow? I actually still have my smell and most of my taste, I just can't swallow anything solid (which includes pills-I've been grinding them up and flushing them through the tube since treatment) and have a problem even with liquids.

I guess I'm just wondering if anyone else has had this happen--it seems very uncommon and I worry it's ebcause I went to a new radiation facility. Too late now, I guess, but I'm interested in other people's opinions about how often this happens and whether it could mean the raidation plan was messed up. Also I'm thinking maybe I should go to a really top-knotch swallowing clinic. Does anyone know of one? If I have to accept being on the tube for the rest of my life, I will, but, just like my initila fight with cancer, I don't want to feel, a year from now, like I haven't tried as hard as I can to get back to nontube eating.

Of course I'd love to eat "normally" but honestly I've given up even hoping for that. I'd just be happy with being able to swallow some soft foods and swallow liquids better (right now I can't even swallow liquids well enough to dirnk my meals each day). I don't hate the tube, Amy., as you suggested I'm grateful it's kept me alive. But I do have some life goals, such as travel to far flung places, that don't seem all that compatible with needing to be tube-fed. Pretty difficult to haul ensure or jevity around with you, though I'm sure there are ways ti manage it if I need to.

If I can eat soft foods, well-cooked veggies and noodles/pasta I'm sure I could do just fine anywhere I go. But even that seems like it's a long way away, if it ever happens, right now.

I won't keep up this schedule forever if the therpay doesn't help but I need to feel I've done everything I can. Tom, I may have some more questions for you later but I have to run right now.

nelie

SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"