I have just started to tell folks of my illness. Until now I had just told a close circle of friends and family that I knew would be supportive. My question is how have others coped with inappropriate comments - such as, do you have a will? what will you do when your hair falls out? will they remove the rest of your tongue?.....and on and on. Part of the reason I waited so long to tell outsiders is that I am, by nature a very private person. I don't like people feeling sorry for me and I don't like people asking personal questions. Advice anyone?

Jenn, I have been where you are, got the looks and the questions, and decided to use the question and answer period as a teaching opportunity. That sounds harder than it is. You have a story to tell, go ahead and tell it. If you save just ONE person from having to go through the cancer and its after effects, it's sure worth it.
I also pointed the ones I thought were truly interested (and not just making lip noises) to the OCF site for more info. I have seen five of them on the site already, so maybe it's done some good.

Andrea

Unless you are embarking on some kind of Oral Cancer awareness project, why bother with them? Tell who you need to tell and that's it. Just so you know, those are not all off the wall questions, it is just what pops into peoples minds. Depending on your assessment, or their assessment of the relationship, a question can be appropriate or inappropriate. I have had the will question thrown at me and I know it is out of concern for my teenage daughter. After the initail shock, I get it. Inappropriate, no. A bit of a shock, yes.

Glenn

I am also a very private person, and I made the decision not to discuss my illness or treatment with everyone. Because of my appearance and speech, I am sure that rumors were flying, but most people were discreet. I have discovered that people will take their cues from you. It is now two years since my surgery, and I find myself more comfortable sharing my story. bottom line- do what feels right to you. You are just as important as anyone else, and deserve to do what feels good to you. take care-you will be able to cope. Fivepets

I agree people will take their cue from you. I told everyone at work but told almost all of them indirectly, I told my three closest friends and colleagues there and let them--with my clear permission- spread the word to everyone else. I am more comfortable with people knowing, though I wasn't all that confortable doing the telling at first (I've gotten a lot more confortable over time because now I have war stories I can tell).

Problem is when people don't know, you can also get awkward questions, most of which have to be answered by telling them on the spot even when it's not a good time.

"were you in an accident? that looks like a nasty scar"
"why can't you eat (fill in the blank),are you on a diet?"

OR (at least I get this because I was 50 pds overweight when I was diagnosed and have lost over 65 pds since then)) "Wow, you look great, you've lost so much weight. How did you do it?"
(I confess that there's one guy at my workplace who has always been a bit of a woman-ogler who said this to me and I was very tempted to say "cancer" and just walk away and let him sputter but I just said "it's not a good story")

Nelie

I still get some stares and questions. I think it is oh so rude for a stranger to ask "did you just come from the dentist?". I have remained within my circle of family and friends. I also retired on disability, due to the type of job I had prior to cancer. I am 3 years out from surgery and radiation and speech is okay,mouth is very, very dry and sometimes I truly dread going out to run errands, especially if I must speak. I know that is horrible and I should just get over it by now, some days are better than others. One day at a time.....Carol

The one question that really irks me and that I cann0ot see as appropriate in any circumstance is one I have actually gotten three times--al from nurses, surgical intake interviewers, and other (non-doctor) medical people:

"you have/had tongue cancer? How'd you get THAT?"

I don't think these same people would ever ask a breast cancer patient this--it must have something to do with the rarity of the disease but still--if they thought for one minute before opening their mouths.....

I think I generaly went with the "need to know" principle -- I tried to be sure that my closest colleagues and clients were armed with enough facts from me so that they weren't engaging in idle (and uninformed) speculation. I also got some of the same eye-popping questions that Nelie mentioned -- in fact, once in a while I still get them from health care workers who may be looking at my medical history for the first time, but I guess I've developed a rather thick skin about them over the years.

Andrea makes a good point that some of the people who ask these questions could benefit from finding out more about this disease (which they could do by perusing this site). It just might help someone else get diagnosed a little sooner.

Cathy

Jen,
When people ask you questions like that, just remind yourself to look at the source...then chalk it up to ignorance. Stay positive. Barbara

Oh my gosh Nelie, I have had the same comment thrown at me and by a nurse. She had NEVER heard of tongue cancer, etc. Also, another one I hear a lot, are you a smoker, or did you smoke? Okay, is that supposed to make me feel worse or better or what....I don't know....but like Barbara said, chalk it up to ignorance. Sorry, didn't mean to rant, thanks for listening folks. Carol