I think I want to try to explain again why I said what I did about asking "why" to David-sticking solely with how it affected me when he did that to me recently. And I want to say again at the start that I respect your contributions here, David, and I respect your curiousity and I know your intentions are good. I am hurt that your response to this is to immediately accuse me of NOT haivng good intentions and "having it out" for you - it is so much easier to resolve these things if we both are able to at least give ach othr the benefit of the doubt that way. But that is beyond my ability to control.

I don't do a lot of talking about this here but obviously having such problems swallowing for 2 and 1/2 years after the end of my treatment, and fighting those problems with multiple surgeries, some of which had their own complications, has been difficult and dsicouraging. Aside from all the surgery, a swallowing disability is something you face every single day. It affects your social life. It makes you feel like you stand out like a sore thumb at times when there's a social occasion when everyone is eating and you can't. And because you don't carry a sign around your neck to make it visible, people, even those who KNOW you can't eat much, repeatedly say things like "oh, try some of the fruit salad it's delicious" - at which point you have to say "I'd love to but unfortuantely I can't" and then reassure them when they feel bad about saying it because they forgot you can't eat fruit salad. It's a freaking hard disability to deal with. You spend a lot of time in extremely frustrating circumstances trying to reassure other people you're ok.

One of the ways I HAVE dealt with it is to hang onto the hope that, although it has been a hard fight, if I keep fighting the fight I will make progress. And I have made progress, though certainly less than I hoped for and very slowly. I work hard to stay positive and hopeful and not let this ruin my life. But it is often frustrating and it takes work to keep it in perspective.

I have posted a lot about what I've learned about the causes of my disability along the way here. Anyone that wants to know what I've been through and been told only needs to do a search and look.

Which is why, when David asked me a little over a week ago what caused it and why I had this disorder and most other people did not, my first reaction was that if he was really interested he could search on that and my second reaction was "thanks for reminding me that this doesbn't happen to everyone but it has happened to me" and my third reaction was "how should I know why it happened to me and not others. I'm not God. I don't know why I got a stricture and radiation wore away my epilgottis and others don't have that happen. No doctor has been able to tell me that either. They all just say sometimes it happens." In short, just the question made me feel sad and frustrated. Try to put yourself in my shoes.

None of these thoughts were what I posted in response though. Instead I stepped away from the keyboard and I decided that it might be helpful for other people going through swallowing problems to know what different thinsg can contribute to that. So I came back and wrote a detailed reply about the five or so factors that I've been told are contributing to my swallowing problems.

And, I get the response by David "I wish you luck in recovering but you sure have a lot going against you"

David, I know the good wishes were genuine but couldn't you just THINK before adding the rest of it? I'm well aware I have a lot going against me, I really don't need to be reminded of that when I come here. I come here for support not to feel like my hope is a delusion. That made me feel really sad and discouraged.

AND this all left me feeling sort of used--for the purposes of satiating someone else's curiousity without there being much empathy there in return. And then I saw that this same sort of question ws being asked of other people in really bad circumstances here -like the woman whose husband had been just diagnosed with SCC that had spread to the skin and was told it was now terminal. I can't imagine being asked to explain why at that moment was what she came here for. And so when the question was asked again here I just couldn't contain myself any longer.

Anyway, as I said, I have come here for two reasons. Support for myself and to give support to others. I am left feeling like the first reason isn't really happening right now and I'm not sure if I am helping other people. Since I am at the bottom of the bell curve in terms of bad longlasting side-effects of radiation, maybe offering my experince just scares more people than it helps.

So I think I need a break from this for a while.

Nelie