[quote=slim]Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath.[/quote]
My name is John and if my questions had been answered I wouldn't post different topics. Please don't make this a negative place. I'm entitled to judge my quality of life. Support is what I need, not criticism or complaints about what I post and who I receive answers from. This is a SUPPORT group of sorts. Support is the goal

[quote=slim]Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath. [/quote]
Thank you Wendy. I think slim needs to understand why we're here and that if I felt I was recieving the answers I saught I would not post different topics. I appreciate your support.

Lets all remember why we are here, to help sick people with correct medical info, advice and support. Thats what this forum is for and when emotions run high things can be easily misinterpreted since its being read instead of a face to face discussion. I am speaking up as an admin I am reading some tension expressed in this thread.

That said, all too often newer members do not understand the history of long time members. We have watched far too many good people suffer and die while struggling to prolong the inevitable. There are many here who would do anything to be able to sit down and eat a real meal as that is never going to be an option. Others are never able to speak again due to losing their voice box and larynx and must live a life of silence. Yet others here are permanently disfigured yet they do not hide inside the house. To another member who lost their spouse, these problems seem minor as they still have their loved ones with them. Everyone is different and has their own set of hardships which when compared to another member it may seem trivial but can be devastating to that individual. Compassion is not always easily given towards others when facing your own major life threatening problems but is always a good thing to receive. When reading posts dont forget to not read so much into things as trying to interpret the writers tone or inflection.

I can understand how the zero quality of life could have been considered offensive. I can also understand why questions are asked more than once. While there are over 8000 members of this forum, its mainly the same individuals who continue to always give back year after year. Many topics have been heard over and over. There are very good search functions on both the forum and main OCF pages which will yield years of info that could help to satisfy even the most curious who seek more in depth answers.

Lets show all each other some courtesy and not jump to negative conclusions over a couple posts. Please, no more posts which are not civil or this thread will be locked. Remember, we are all in this together!

Well I won't let one bad apple or experience ruin it for me. This is the only negative non-supportive answer I've had.
If carefully read, of read at all really, I don't ask the same exact questions.

My first boss said something to me that has always stuck with me. She said "everybody's has a Meter and everybody's meter is on high. For someone it might be they discountinued their shade of lip stick, for others it might be they missed their morning cup of coffee, and for others it could be they've been diagnosed with a terminal illness. But no one has the right to judge anyone else's meter"

I feel horrible that one of the first communications I've had here has gone south some how. I apologize to anyone I offended. That was not my intent.
My intent, in a nutshell, was to let John know that he could count on me to be honest. And I felt I could possibly help him as I've been right where he is and I got the feeling he really wanted straight answers. His referral to the quality of his life was honest. And I hurt for him because I've felt that way.

I really did have good intentions.

Christine,
You are very wise and you certainly hit the nail on the head. Jon, this is still relatively new to you and you are young, so it is no wonder that you are impatient. Everyone's situation is different, and we all have negative feelings from time to time. I understand Slim's feelings as well. This is such a horrible disease, and most of us had no clue what was involved until we, or a loved one got it. Remember, we are all here to support each other. There are days that I feel that the quality of my life sucks, too. But I just keep on keepin' on; that's all that any of us can do. Hang in there.

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=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.

This thread is now locked, no more responses will be allowed to be posted.


I tried to tactfully neutralize this situation and requested everyone to move on. This was NOT optional or up for discussion! There is NO reason for anyone to become upset or angry over anything that has been written. Expecting members to behave in a civil manner is not too much to ask for, its part of the rules we all agreed to when we signed up. I do NOT want to see anymore posts relating to this thread or any post with even a hint of attitude. OCF is to help sick people and their caregivers. The admin of this forum work very hard to maintain the integrity of this site. As a volunteer, I spend a minimum of 3 hours per day here reading every single post and making edits and corrections where necessary. Im not asking for any appreciation or even a thank you but I do expect respect for not only myself but for every other admin on this site.

I will leave the above post visible for a couple days then it will be deleted. In my opinion, it is not very nice to lash out at an admin for attempting to offer support. I do NOT want to see any more posts of this nature. Of course I am not saying its not ok to vent, we all do it and the members are here to listen. Lets remember not to direct things at someone who was reaching out to help. We all must show respect towards other members and admin. Everyone is an individual who has their own good and bad qualities, we all have something to offer others of this forum. We are NOT each others enemies, everyone is in this together. Lets all get along!!!