That's the comment I got from the guy at the health food store today...he was the sensative type you know. I told him "oh Oral Cancer" and he was like "Oh man, cause I thought you got beat up real bad and I run a boxing gym if you wanted to learn how to defend yourself" (little he knew I used to teach self defense in another life). I'm sure glad I'm secure in myself and not sensative to how I look now or anything (sarcasm off).

Eric,

Sorry to hear you were subjected to such a question but sometimes I think people blurt out what they want to ask trying hard to not convey pity but rather try to express concern in their own way. You have been to the edge and back!

I saw a news story on tv the other day and there was a teenager that had 6 radiation treatments to his jaw when he was an infant and the jawbone never grew. People have made fun of him all his life and his mother has been fighting the insurance company for reconstruction literally all this kid's life. I really felt for him and marveled at his smile and thought how he shares our life in such a way while having no surgery (like me) and only 6 treatments.

My entire right arm is deep red with huge welts from a burn back on December 20 and the doctor says let it breathe but my wife won't even go out to dinner with me unless I put on a long sleeve shirt. I wore one yesterday for 2 hours and just from rubbing and sweating it durned deep purple, one of my favorite bands of old, was swollen about an inch above the regular welt and now the next day I have a four inch blister that will turn orange tomorrow burst the next day and then hurt a few days after that. When a child looked at me in the grocery store and started crying, the mother asked what in the world happened. I smiled and told her I cut myself shaving.

Wear your badge of courage proudly, you certainly earned it.

Ed

I would have said ' I have Oral Cancer my friend" and what happened to you?

What a insensitive jerk. He must not possess the intelligence to filter what he thinks from coming out of his mouth. His ignorance is a life long problem he has.

OC patients all have their own different quirks. Some have eating problems, others speaking issues, others have obvious physical problems and none of these makes us any less of a person with feelings. Please dont let this make you feel any less of a intelligent, valuable person.

That is an example of the 99 MPH mouth and the 1 MPH brain. LOL

Although the guy who made that comment to Eric did not use the most polite choice of words, he had a legitimate reason to raise the question. It would have been more appropriate for him to offer his business card while apologizing for being personal and saying "Perhaps you were assaulted or in a fight. I run a boxing gym if you would like to learn how to defend yourself." He could have been giving someone an opportunity to do something about a situation they did not have the courage or incentive to address. This is far different from the person who would ask a stranger the first part of his remarks.

Eric,
First the back story. I have lost 40# through my treatment. I was not big before, I am extremely small now. 5'4" and 100#'s.
So I'm in Walmart, the only place here locally to shop. The idiot clerk that has driven me crazy from the first time she checked out my groceries says. "What's happened to you, are you on Nutrasystem?" Like someone would want to look like this!
It takes all kinds, doesn't it.

I know where you are coming from Eric. I get embarrassed all the time when I have to repeat my name over and over when people introduce themelves. Its embarrassing. It will get better and you will find that more often than not people are very kind. Its just the one insensitive person here are there that really throws you once in a while. Also it is true that people get nervous and thrown off guard and often don't know what to say and often just say the first thing that comes to mind- out of nervousness and panic.. Especially with me because all my scars have faded ...except for the speech impediment.... then they are jus like...whaaaa? Is she deaf? braindamaged.. what's the deal???.. they can never figure it out.. but at first when my scars were bad they said all sort of pretty rude things- and thier eyes were as big as saucers.


the only good thing about being in our position is that you will weed out the people who are caring from the non caring real quick. I've found it very very interesting that way.Some people handle it very well and jus work along with me so we can communicate, You will find that people will ask you lots of question now when the scars are more evident-- but later when they fade you will blend in again. Its took me along time but this year I'm there. I still have a huge scar on my arm but the facial scars are relaly faded. I have to point htem out--- you can see some on my neck but I'd never ever have believed it if anyone at that time told me that hey'd look as good as they do now.

Big hug to you buddy!

K

Misskate, I can relate to the incidences you have had with the inconsiderations of others. I have not had a glossectomy, partial or otherwise, but I have had the removal of 25 lymph nodes, teeth removal of 24, wooden neck from the surgery, and at this point in time, one year and 2 months from discovery and start of treatments. Radiation and chemo were unkind but not som much as I have read of others. For this I am grateful, but what I wanted to say is, before I started this detour in my life, I was very active with the deaf in my church and with lots of deaf friends because of it.
When someone has a problem with my speech, which is difficult at times, I automatically revert to sign language. At times I am pleasently surprised with finding the person asking for me to repeat what I said, just happens to understand sign language. From that point on it is no problem to either of us.
Learning sign language is relatively easy for most people to do. To make it more interesting, you can converse with people of other languages easier through this ability. If you have a real problem with the comunication, give it a try. Find some jr. college training classes and you will find new friends who will never judge you or question your problems. Hope this helps to get the word (no pun intended) out. gnoled

hi Kate!
I hear you about having trouble saying your name!

My daughter's name is Kate and I have a hard time saying "k" or "c"s. (I have 1/2 a tongue left)
Often people hear her name as "paige"
sometimes I will add "its short for Katherine" sometimes that helps, sometimes not.
my own name michelle is easier, although people don't always hear that. When I'm ordering a coffee or something I'll just give a different name! I usually us "Stacy".

oh, and it is really hard for me to order "decaf" - that frequently is not understood. My adaption/coping mechanism has been to re-phrase the word or try to describe it so I'll order "coffee, decafinated" and that works a lot better.

On the positive side, after 5 1/2 years post-cancer my speech is MUCH better

Everyone:
Yeah, I've gotten those kind of what-happened-to-you questions. I don't mind it usually - because I know people wonder, so I am glad to be able explain that it was cancer. Oral cancer still is not encountered by many people.

I kind of liked it in a way when I had the noticeable scars - because it was obvious that something happened. Now I just talk funny!

But hey I'm still here, so I am happy!!!!
(Of course there are good days and bad. Days of feeling blessed for what I have, days of feeling like "poor me")
Hang in there!!!
michelle