Kate, I completely agree with you about the need to be aggressive with this cancer and aim to live the best quality life you can afterwards. However, as someone who has a swallowing disability and may well have to consume mostly liquid foods for the rest of my life I need to say this - *I* don't like being prtrayed as someone that must have a miserable life because of that--which I often fell you do in your posts.

I am very glad for you that you were stubborn and lucky enough to be able to battle your way back to swallowing normally after a glossectomny. There are those of us --even who didn't lose as much of our tongue--equally as stubborn but not as lucky because the etiology of our swallowing problem is just a little different. I've gone through lots of medcial treatment including one which left me with a painfully performated esophagus and a collapsed lung at one point just to be able to swallow anything at all! But until someone can do reconstructive surgery for the epilglottis I am probably always going to have some serious swallowing problems since half of mine is worn away.

It was this statement that bothered me:
" I'm not sitting around miserable drinking liquid food "

I would be lying if I said that not being able to eat normally doens't really bother me at times. Coming to an acceptance that this might be a permanent problem and that I can live with it has taken me years. On the other hand, in many ways I still have a happy and fulfilling life. I can talk fine although I still have a very easily irriated tongue so by the end of the day my mouth is painful and I tend to not want to speak as much. The postive side of that is I have become a much better listener, an avid letter-writer again, and I read a lot.

I think it would be best if we don't presume any OC survivor's existence is a miserable one, regardless of the extremity of the treatment they had or the disabling after-effects. You and I both had very agressive treatment for our disease. I was a stage 2 cancer and at the time the NCCN guidelines were unclear for cancers at stage 2 with the featiures mine had. I took the most aggressive recommendation because I was afraid of it coming back in a much worse way otherwise. We are both fighters and survivors. And so far both cancer free whic is the really important thing. Please don't demean my life just because I have a disability you managed to not have.

Nelie