Good to see this thread still helps people. After my recent MRI concluded: "some enhancement along left posterior tongue base could reflect tumor" but the tumor board of radiation oconologists plus the ENT surgeon who looked at the actual MRI pictures all concluded that not a thing was out of the ordinary and that the "enhancement" was what they routinely see after salvage surgery like I had, I have to vent again
Don't you just hate it when they have residents or phone it in radiologists prepare a "report" on your PETscan, MRI or CT that gets discounted by your regular doctors but still worries you since they say it could be the cancer again?

Suzy

I have a prosthesis attached to my denture which allows me to speak. Unfortunately, I cannot eat with it in.

On our 30th wedding anniversary we were at our cottage and decided to go out for dinner. My daughter had some friends there and they were, naturally, dressed in beachwear - shorts, etc. We included them in our dinner.

As we began to eat my daughter explained to her friends that I would need to remove my top denture to eat. One of my daughters friends looked at the other and said "And you were worried about having long pants!"

I laughed and laughed, and more importantly I have used this story many times to explain that I need to remove my teeth to eat. People are UNFAILINGLY gracious and now I have learned to remove my teeth discretely (even in the nicest restauraunts) and if there is someone new around they - without question - say "do what you have to do to enjoy".

Perhaps you can use this story to help you with strangers. Tell them about a friend who..... I do truly believe that people want your company during a meal - it isn't about the food. Stay at the table, eat what you like, but help them understand. I am sure you will find that soon they will be doing everything they can to help you - such as making sure there is a pitcher of water on the table!

Hang in there - people really are good - even if they are sometimes very insensitive.

Donna

Donna is right about some people being insensitive but still good at heart. I have going to a stained glass & mosaic workshop for 9 years and the people could not be nicer. They sent a card a week for over a year to me stressing how much they missed me. When I was finally strong enough to attend a session, they all pointedly explained that my halting speech was a result of cancer to the new members. Ask yourself how you would feel with being made the center of attention over your inability to speak fluently. Luckily, I am one tough son of a gun so it did not faze me but when I told the story to my wife, she said she would have been mortified. I bitch about things in this thread, but we need to keep love and charity in our hearts.
charm

Okay, newest gripe: Posters using OCF to tout their direct marketing companies. OCF forum is my refuge and I do despise the Amway clones who think it is perfectly acceptable to tout these companies and ask to have Private messages sent to them about joining their "cult". Especially because we are vulnerable and this type of post reminds me of all the affinity related scams run on church groups. maybe it's just me, but I like OCF forums to be about our struggle with oral cancer and helping each other, not selling vitamins.
Charm

I do agree with charm 175% on this issue. Run adds in newspapers where they get paid to write and print adds. That is unless you mail the foundation a nice sized check for using the space.

Charm, please let me know of any poster that does this to you or to anyone else. If they have been around awhile and are one of the family we will talk to them about it. If they are a never poster (a give away that they have signed up for a public forum but are not one of us) we will ban their ip address from using the boards.

I experienced Brian's vigilance on this issue when I first joined in 2006. It was likely something in my original profile having to do with my employer, a DME manufacturer that raised a red flag to Brian. I was shocked to receive such harsh correspondence, due to being entirely innocent. I had no intent to represent, talk of, or anything else related to the entirely unrelated industries. When I realized it was not personal, it was likely a standard form letter due to something in my profile, or a email I did on company time, (never was exactly sure what the trigger was) I got over it.
This vigilance actually gave additional credibility to the Oral Cancer Foundation.
Ginny

Hi Everyone,

I had to respond to this thread, "Don't you just hate it when�" On more than a few occasions, my husband and I have experienced the inappropriate questions and comments from friends and acquaintances. I am getting really good responding with "Why do you ask?" or "Why would you say that?"

It is disarming and it works!

Unfortunately, OC is obvious if your appearance has been altered from the effects of treatment. It takes an enormous amount of energy and courage to fight this battle. I don't want anyone's comments about my husband's appearance or lifestyle choices to make his life more difficult than it already is.

Hang in there!

Anita

Yep, it is frustrating for all of us to have friends and acquaintances make those comments. This weekend though I had an infuriating first: a Telemarketer making their pitch started asking me to repeat myself saying I was mumbling !!! I suggested he remove the fecal matter from his ears (perhaps I used a more earthly expression)and hung up (as opposed to politely declining and then hanging up).
Keep these comments coming, I think this thread is a good place to vent about the inane comments and thoughtless remarks we all endure. Now that my scars have faded, you can't tell by looking at me I am an OC survivor, although when I talk, it's clear that something is very wrong.
charm

Anita

thanks for suggesting those comebacks. they are much nicer than my replies which usually raise questions about the speaker's parentage, intelligence, incestuous relationships with their mother and then I won't regret my hasty angry response. I especially like: why would you say that
charm