Good for you, Brazilliangirl! Well said! When I finished radiation, they asked me if I wanted to keep my mask, and I said no, but now I wish that I had kept it., if nothing else other than to show people what we oral cancer survivors go through. People really have no clue, no matter how supportive and kind that they try to be.

Yes, it is my second language. My main is portuguese...

[quote=John of arc]My favorite was when my boss told all the parents of the children I worked with that I was on vacation! [/quote]

Funny that you say that because I just recently went into my sales job to check in, say Hi and let my boss know that I should be returning to work. One of my coworkers had the nerve to say "But it must've been nice to be off for 6 months, right?" Unfortunately he caught me on the wrong day and was met with a few choice not so nice words. I have to blame it on sheer ignorance or just the fact that people don't know what to say but COME ON! I had cancer for crying out loud! I know I look ok but do you really think I'm going to come into work at my worst just to say HI? Right! (Still strikes a chord, obviously) lol

MissB

Don't you hate it when you mention a side effect to your doctor, and just because they have never heard of it before they assume it is not related to the cancer treatment? This has happened to me several times, tne most recent one this past week when I was getting my quarterly check-up at MD Anderson. I mentioned a couple radiation side effects I have been having (which I have found others have had on this site); one of which is that I now get a shock down my spine whenever I bend my head down. The fellow assured me "no that wouldn't be from the treatment"... really? It is just a coincidence that my body is acting all types of crazy ways after I finish my cancer treatment? Frustrating!

So true Emily. IMO the problem is that they never had cancer so despite their medical training and experience, they simply do not have the broad depth of knowledge about the day to day aftereffects of the TX they administer. We here at OCF do.
Once a doctor does get oral cancer, like poster dribrooks here, he quickly gains a new deeper understanding.
Actually in general, I find people who do not have cancer (or were not caregivers to cancer patients) simply do not know what they are talking about when they give advice to cancer patients.
Like the counselor who told one poster here not to come to the OCF forum for support or help.
Charm

When we were just starting out on this adventure, one of my young friends, a pediatric oncologist just completing her residency, encouraged me to learn as much as possible about the disease, and that soon I would know as much about it (as she put it) as a first year resident. Not the general medical background, of course, but specific details, recent studies, treatment protocols, and so on. I think that some doctors have a clue about the overwhelming burden of the cancers that they treat - when we attended my friend's wedding least year, her daddy painted a picture of her sitting with her patient's parents late on a Friday, explaining details to them - in English or Spanish. I am pretty sure she is one of the good ones.

Maria

Your friend may be the exception that proves the rule. We need many many more like her
Charm

When you meet people in the street and they "ask how are you?" when they really dont give a damn and cant wait to get away from you or like one of the other replies well you needed to lose some weight anyway

Margie - I hate the "how are you" question! There is a tone of voice people often use when they ask the question that makes you want to cry... like they have so much pity in their voices. Also to your point, it bothers me when people that never bothered to call and ask how I was during treatment will ask how I am and act like they care when they do run in to me.

It seems like when you're diagnosed with cancer (or maybe any illness), a lot of people want to tell you about someone else they know who has/had something similar. While I was awaiting my bone marrow transplant, two of these stories stand out, paticularly since they were told to my husband by friends wanting to reassure him I'd be okay.

The first went something like this: "My brother-in-law had a bone marrow transplant last year and it went very well." When asked how he's doing now: "Oh, he ended up aspirating orange juice and dying while he was in rehab afterwards but the transplant was no problem."

The second was equally uplifting, something like this: "My friend had a transplant, his cancer was cured, and he was doing great. Then he got hit by a truck and was killed instantly."

We still wryly quote these a lot to each other, especially with my recent diagnosis with an unrelated base of tongue cancer. All this time I was worried about relapse or treatment related issues and instead got hit by a [figurative] truck.

The other thing I hated post treatment was being told how great I looked when I had no hair, swollen red eyes, and mottled skin with alternating patches of hyperpigmentation and no pigmentation. But hey, I lost a lot of weight. Argggg. No one ever told me I looked great before I got sick. Gee, if only I'd known, I'd have gotten cancer sooner. Yeah right.

The last one has already been mentioned, too - "Everything happens for a reason." My standard replies are either, "No it doesn't - a lot of things are just random," or better yet, "Really? Then some of the reasons are bad."