[quote=EricS]John,

Some of the answers you are seeking nobody here, nor anywhere will be able to answer for you, as in the timeline of when you will be able to eat this or that, even "if" as is often the case with many other survivors. You're a month out and can't eat a piece of pizza...that news will not surprise your medical team nor anyone who's had any contact with this disease and the treatment for it. Give it time and be patient, I understand that being from NY that may be hard for you, especially when it comes to eating pizza.

Now as far as this being a "support" group, you are very correct in that fact that it is and be assured that OCF is the best anywhere when it comes to getting the correct information from people who've been there and done that. This network of survivors and caregivers that continue to plug in year after year are an amazing wealth of knowledge, experience, and compassion. Sometimes support is tough love too, and we'll give that when called upon.

I remember when I was a year out of treatment and tried to go to a restaurant for the first time, this when I was still able to eat solid foods, an ability I've since lost. I was made to feel very uncomfortable by just about everyone in the place as I was severely disfigured from my experience, and was being stared at and having comments made by rude, disrespectful people when I was just trying to eat after a HBO session. I didn't think I was ever going to go out in public again after that and came on these boards for support and to share my experience of just trying to eat a soft cinnamon roll with loads of milk.

I was very upset obviously when EZJim posted something I'll never forget and will always thank him for as he was an example of someone who had/and has since been through more than I could even imagine yet still looks at life with an attitude I hope to achieve one day. He told me that if he could just eat solid foods he wouldn't care who looked at him, in fact he would probably have his meal paid for several times over if people just watched him try to eat anything. After that I understood that someone else not only understood what I was dealing with, but had a tougher path then I, yet chose to walk it with a different outlook. That support Jim offered me that day changed the way I looked at life and I think of him often now that I've lost the ability to eat solids myself. I'll always cherish that wisdom and thank Jim for helping me be the man I am now, along with the others on these forums, a few of whom have responded on this post of yours.

My advice to you John would be to start to work with a Speech and Language Pathologist as soon as you can for any swallowing and eating difficulties to preserve as much function as you can. The taste comes back eventually even though nobody will be able to tell you exactly when. [/quote]
As I've said before I don't need a speech or swallowing therapist. As I've said I can speak fine when all the salvia is cleared out and my swallowing has never been an issue. Thank you for taking the time to reach out to me. But I'd truly appreciate it if I didn't have to keep responding to people's replies that spin any users negativity directed at someone else as ok or justified. Some days I feel like my quality of life is zero. Offended by that? Move on to another post. Sometimes it takes asking a question in different ways to get the right answer. Don't like how I post? Don't respond to my topics instead of trying to seek them out. I DO NOT have time, the patience, or inclination to deal with ANY negativity outside of what is going in my head, in my body, and in my life and anybody who thinks that anyone on this forum SUPPORT group should have to for ANY reason should keep to their own posts as well.
The last thing I want to do or have the energy for is to defend myself or feelings or cause drama and the poster who thoughtless ignited this flame should feel that way too


Now- can we all just move on and get back to the great support and information system I've been seeing or do I need to leave this forum because everytime I come on here someone else is going to try to rationalize someone else's misdirected and inappropriate negativity? I'd like to go back to looking forward to reading replies, not cringing when I get an email notification. If this can't be accomplished can an admin or mod erase or close the topic? Because if it doesn't stop this entire thread is a useless waste of time.