Okay, first go to the general board and read my post entitled Isolation & Etiquette. Then add to this thread your "favorite" banal and trite remark that people say to you that just makes you feel worse. You know, those words that not only trivialize our experience but can also cause anger.
I am going to cheat and cut and paste from that post to get the ball rolling:

"Well, none of us knows what's going to happen. Any one of us could walk out the door in the morning and get hit by a bus."
"It will work out in the end"
"Everything is going to be just fine"
"I guess we should all really live like we're dying."

Or EricS's contribution:"oh you are such a strong person" or want the scoop and pointedly ask.."how are you feeling" with pity oozing from their tone.

Share with us the inane things you have been told so we can all laugh knowingly together about this

Charm

We all seem to drool when we drink and can't help it and sometime with soft food we drool some too. When someone stares, I like to say I was raised with hogs and if youe ever saw a pig eat you saw them drool too.

When they give you an EXACT appointment time (I mean like 11:15) and you arrive EXACTLY on time only to wait more than a hour for his holiness to see you.

When you finally do get to see his holiness you realize you just waited at a traffic light getting there longer than he talked to you.

When you realize after wasting all this time and you're on your way home that you forgot to ask the single most important question that you needed the answer to.

When you go to get a prescription filled and the lady in the window says "that will be twenty seven fifty" and you hand her $40,00 thinking that's reasonable only to hear her reply "no I mean $2750.00"!!

"Now that your husband has cancer and is home all the time, it must be nice to spend so much family time together."

"If there's anything I can do for you, just let me know." I want to scream back, "yes there is, You can take this damn cancer away from me, how about that? You up for that one?"

I also had one idiot ask me, while in treatment. If I was on Nutrasystem, since I had lost so much weight! I wasn't heavy to begin with 5'4" and about 130#s, when she saw me I was 95#'s. Who would want to look like that?

Advise from people who've NEVER HAD CANCER on how to cope or how I should feel or deal with others. If they understood how stupid they sounded I doubt they would open their mouth..or touch a keyboard. Still makes me want to kick the "expletive" out of them.

Amy, you made me smile, thank you for sharing

Hey, at least you lost weight and look great!

Granted some of that stuff is just idiotic, however....
a part of this may come form the inability of people to understand and deal with cancer as well as the desire to say something "positive".
Also some of that stuff some of us might have uttered BC.

M

David, what on earth did you pay 2750 for?

There is one of those phrases that I turn around on people who ask "how are you" in such a pitying tone. I just say I'm fine, how are you, and "none of us really knows whats going to happen"!

That gives the person who was so pitying something to think about!

Donna

Markus, I think you are absolutely right. People who have not been around cancer do not know what to say. I was one of those people just a little over a year ago. I always thought that cancer was a family thing and stepped back out of consideration. Now that I�ve been through this and am doing well I make it a point to try to help whenever I can. Those friends who sat with me during chemo and drove me to radiation will be forever remembered.

I recently sent emails through my wife to convince one of her co-workers whose husband was diagnosed with melanoma to go to CTRC here in San Antonio for a second opinion. I even got a business card for the physician on one of my visits there and had my wife give it to her. Made me feel pretty good about sticking my nose in someone�s business I�ve never met

When a stranger gives you advice on what to eat so you will never have cancer again;

When a stranger tells you that if you had eaten certain foods or drank certain juices this never would have happened.

When a stranger gives you a web site that will sell you a cure you simply swallow so you don't have to go thru radiation.

classic David...I had to tell my mom to stop buying miracle foods from crack jobs because I wasn't going to try any of them

My personal favorie is when you make your copay, you get a receipt and they send you to collections 2 years later...yes you read that right...2 years later. I don't even see that doctor anymore.

Eat Blueberries

What doesn't kill you will only make you stronger

the pain is in your head (yes, for us it actually is but not the way they mean!!)

you don't smoke, do you? you shouldn't have cancer.

And of course..like everyone says that infamous "How aaaarrrreeeee you? with the look on their face like they are already at your funeral. I like to call it the "coffin look" So I always "I;m fine, thank you. How are you?" Then this one girl I work with will say "no, how aaaaaaaaaarrrrrrrrrrrrrrreeeeeeeeeee you" like I can't be fine so she better ask me again...lol

Good idea here Charm..it's funny that we all get the same crap

Since I'm active duty military and returned to duty after treatment, but was restricted from deploying to Iraq, Afghanistan etc... A leader in my unit uttered the comment that it must be nice not to deploy. I agreed and said if I had known this I would have got cancer sooner.

There have been many that I usually ignore, but this one stuck a nerve.

Cool Thread
Tim

I am not amused when people say that "you have such a great attitude about it" or "you are so strong". WRONG ON BOTH COUNTS!

There is no reply to those comments. I often feel weak and scared (as my OCF family knows and has experienced themselves). Where do they get this stuff?

Donna

WOW- great responses. It is reassuring that others (beside a cantankerous coot like myself) bristle at these inane remarks. I had not thought to include the actions of the medical profession which can be just as annoying but were posted here.

Even though I am religious, or perhaps because I am, another one that gets to me is: "Oh, God never gives us more than we can bear", as though my cancer was some Divine stress test. I do confess that references to Job are easier to take.

Let's keep them coming folks.

Personally Im not a fan of posts that are negative and prefer to see things in the most positive way possible. We all have those moments, I dont want to dwell on them. I hope I am able to sustain this way of thinking after this 3rd round.

I just gotta share this one.....

At work there is a very chubby woman who is so lazy and has s very cocky attitude. She barely does her job but is the first one to comment abot others. Anyway, she walked up to me a few days ago while I was eating my mashed potatoes and beans for lunch and asked me how I was. She usually is nosey and rudse to me. The only reason she came over to me as I sat alone trying to be invisible was to see what I was eating.

How I hate office politics and avoid it at all costs. She said that it certainly looks like Im eating alot lately. I looked at her and said I can eat 4000 or 5000 calories per day and wont gain any weight. She looked at me and said ....WOW are you lucky!!!!! I told her I am not lucky at all, Im just fortunate to be alive and if she is able to eat real food then she is the lucky one.

What an idiot, here I am with no teeth and can barely eat a thing and Im the lucky one. Little did she know, I also have cancer again.

That enough of my grouching today. Now its time to make the most of the hand I was dealt. Im going to work, since I really am lucky to have a good job and right now Im able to do my job.

Talk about coincidences! Just the other day I was in the gym locker room and this really fat guy asks me " what's that string hanging out of your stomach?" When I explained it was a feeding tube and how I had shrunk from 177 of muscle to 126 pounds, he remarks: "Gee, maybe I should get cancer and get one of those"
I had to laugh and wasn't even upset it was actually struck me as so funny.
I don't think this thread is negative, instead it is a positive outlet for the frustration we all feel. After all the forum is entitled: COPING/ANGER & FEAR , neither of which feelings is considered "positive". Thanks for sharing that anyway Christine with the rest of us "lucky" ones.
Charm

I am chucking at Christines and Charms answer LOL Good thinking to both. My pet peave is I keep hearing " You sure don't look sick Jim" It's too bad I can't take them thru a day of my life and make them look like health too. Damn it takes a lot of pain and exercise to look half way decent. Yep,, But you don't look sick and you are about crawling on your hands and knees . LOL GRRRRRRRR POW right in the Kisser people. Some I do laugh at tho.

I'm guilty of being the type who tries to say something positive.

The hardest lesson for me to learn is:
Be there, shut up and just listen.

ginny

thank god for people like you Ginny, otherwise who would there be to listen to loudmouths like me
charm

When you waited 7 excruciating days to get the results of your first post Tx scan and there's a SPOT and your trusted doctor calmly says "It's probably nothing, let's wait another 3 months and take another look." Yeah I'll sleep better now!!

"But you didn't loose your hair?" (and I wonder if I'm the only one that wishes sometimes that I had lost all my hair.)

And my dear friends it is not that I do not WANT to eat it is because I CAN NOT eat. It doesn't matter how good of an idea you think it is, anything thicker than water is going to get stuck in the back of my throat and not move. SO QUIT ASKING WHAT I'M EATING!!! And if I've tried (whatever) Believe me, I have.

Amy

My husband's "passion" is cooking. He is always watching the cooking channel even through all his treatments and loves trying new recipes. Yes I do know how to cook but I don't really like to and since he does, he has ALWAYS cooked our meals. When John became unable to eat by mouth which lasted for about 4 months I did manage somehow to cook and keep myself alive. John has lost 30 lbs even with the PEG which was removed in July. He is now eating again but it is a struggle. He has no appetite and food that he used to love doesn't taste the same and worse yet is the texture of foods.

More than one person has said to me "you just need to learn how to cook John some good meals and fatten him up". So evidently John's lack of taste, appetite and desire to eat and gain weight is due to my inability to cook. I don't know how I kept my 2 kids alive for 7 years while I was a single parent.

Amy, to eat food they can have my hair too. Just one burger, one steak, tosat and bacon with eggs, geez, there are are many things that I haven't tasted for many moons.

I do have to add this, I am alive if the opportunity presents itself.

Here are some things people have said to me that really made me want to cut their tongues off.
"Are you sure the students will understand you", I said "Do you understand me?"
By the same person, "I know I upset you about my comment the other day, but you have to admit you do sound funny."

Another one was, "You sound worse today then you did yesterday." That really made feel like I was getting better.

I had several people as ask me, "Could I see it?" My response, "You won't see anything, it was all cut out."

4 months out and I am getting sick of people asking me how I am doing. I just want to move on and quit being reminded of what I went through from other people. You know?

Angelia,

Not to break this funny thread but I am 3 years out and they still ask me "So how are you doing?". I just say "great, couldn't be better, how about you?"

OK, I will be a little two faced here.

First, I will also admit to asking "How are you doing" but I think it comes from not knowing what to say or how to offer to listen if there is something the person wants to get off their chest. For those better with words, is there a better way to convey concern, compassion, etc.? I also know that I had no idea what cancer meant just over a year ago. Although, I knew some people that had the dang thing, did not know what life was like day in and out and outside of spending a couple of weeks with them, don't think I could have known what they were going through.

I know I hate that, "how is Pam doing?" or "doing today". I would like to answer with go read her CaringBridge website and get back to me but constantly end up with trying to decide what to share with the person. Is there any good answer for people with good intentions without going into a 10 minute conversation or the "doing well"?

Why not tell them to ask her themselves?

When I was trying to get back to work my general manager told me " I've always found that the best way to feel normal again is to just get back to work". She sits at a desk. I drive a 13 ton bus full of human beings around the county. If she not feeling 100% and maybe a bit drowsy, nobody dies from it.
Also, while I was off the office staff sent a get well card. Our safety manager signed it "Safety first but health is important, too". Had to laugh at that one, it was so dumb.

Angelina...don't me started on that person you work with!!! We've talked about that before:)

I also like this one..."Mmmm you're so lucky. Now you have an excuse to eat ice cream and milkshakes" to that I say "It hurts to swallow my spit and to get down a little sip chicken broth I have to take pain meds 30 minutes before and use viscous lidocaine during. Man...I am lucky." I tend to be a little harsh because I hate when people say stupid things. But then again, they don't know what to say. There are VERY FEW people that talk to me about it and it doesn't bother me.

have you all noticed that the people you want to talk to about it, don't want to talk about it and the ones you don't want to say another word are the very ones that wont shut up? What's with that?


My boss tried to compare his sunburned back to my trimus pain last week.

As Yogi Berra said: "It's Deja Vu, all over again". Your stories and posts each evoke similar experiences that both my wife and I have undergone. What's great is how we have all kept our sense of humor through these trials & tribulations.
The "how are you" thing is difficult. What is vexing is that no answer except some variant of DavidCPA's "Doing Great" is what is truly expected from you. I think everyone wants to be reassured that even if they did cancer, that it's no big deal what with "modern medicine" and all. And in indirect response to AmyK's observation, if you really answer with details about the pain, the frustration, the seemingly endless complications, the fear of recurrence, or any other facet of the "new normal", the good people are shocked and then avoid you, while the a**holes just nod and tell you "it'll get better" and then launch into an explanation of how their stubbed toe or hangnail or sunburn really hurts too.
To keep the ball rolling here is another actual comment - this one from my mother-in-law:
"Oh, some of the people here have had cancer and they went clogging right after their radiation treatment. Are you doing anything like that?"
PS. I am leaving in a few hours to try and drive the four hours to NJ (beach traffic) to go to another eighth grade reunion (Class of 61 turns 62)where surprisingly people who spurned me then have matured and rallied in support with cards and truly compassionate comments at last year's first reunion after 47 years. We had so much fun, we are doing it again. SO NO POSTS UNTIL MONDAY. HAVE A GREAT WEEKEND.

That is exactly how I felt at the beginning. It is so true. The one's I do not want to talk to about it are the one's that ask me how i am doing and how my tongue is. All I can say is doing well all the while I am trying to firgure out how they knew since I never told them.
[quote=AmyK]have you all noticed that the people you want to talk to about it, don't want to talk about it and the ones you don't want to say another word are the very ones that wont shut up? What's with that?


My boss tried to compare his sunburned back to my trimus pain last week. [/quote]

On a not so funny note, what I really really hate are posters on OCF who post live links to their bogus Mexican clinics like the recidivist who just did it again (by editing his original post I guess) on the adjunctive therapy forum
You can see that Gary and Brian were all so nice to this tout who has posted 15 times here drumming up business for his buddies who take desperate people's money. What is worse is that this guy was cured at John Hopkin's with regular treatment but attributes it to mexican magic.
Charm

If links end up back in signatures or posts, the person that insists on breaking the rules of use - that they agreed to when they joined in the discussion forums - will have their ip address banned and not be able to post here at all ever again. The rules are set up for a reason, so in the tone of this thread, what I really don't like are people that try to do an end run around things, to get their way in spite of the rules.

Brian

Glad to see you contributing to this particular thread. I still shake my head in wonder when I read some of the crybaby posts sent your way, bemoaning an imagined rebuke when all you did was point out a rule or else make an honest comment that rightfully has a negative component. I am only beginning to fully realize just how fragile many of the posters are but luckily for me, any "derogatory" comment is just my opinion - not some perceived judgment from the founding father. I really appeciate you and Gary's deleting those mexican clinic and miracle cure links and quick response to my "notifications". It's a sore point with me and I make no apologies for coming down hard on those who would prey upon my OCF family
charm

I have not been on the forum for a while, just enjoying being well! 3 yrs and 3 months and I count every single day. I had to post here because this is my biggest issue now, with family and friends, they just don't understand what I live with and what I can and cannot do or eat, and how could they! Not like having a tooth out or another type of surgery that heals with no "New Normal". What can I say, nice to know that I am not alone in this, people here on the forum do get it, thank God for this place to vent.
Here is the best one that was slung my way not long ago and I quote "my friend has just been diagnosed with cancer, but not like yours, you know the real kind in her breast"
Gotta love that one....I was speechless..

Well, I for one love these threads, I was feeling alone until I came back to the forum. My family I think are the biggest idiots of all, I have heard everything from them, like "its over now, so get over it", or how about if you only ate raw onions or garlic like me you would be fine. Picky eaters always get cancer...:) and yes, the all time favorite, "God never gives us a burden we can't carry" like we have a choice..

Are you serious?? I had no idea one type of cancer was more 'real' than other types! Who knew??

But really, what kind of idiot thinks that??

In a similar vein,about 2 months after I finished treatment I was at a board meeting for a community group for which I serve as a Director. One of the other directors was talking about how a guy he has had a bunch of battles with over the years had been recently diagnosed with terminal cancer. (Keep in mind that all of the members knew about my battle). He blurts ourt: "Serves him right. Cancer is God's way of punishing people for their sins." Really??? Geez, I knew I smoked and drank a little, but that's a tad harsh, don't ya think?

I think because people have never heard much about the oral cancers, they don't think it's all that much. When I was 1st diagnosed I was telling some of my closer friends at work, giving them the facts before the rumors got started. One woman with whom I've worked 17 years, been on bowling teams with and all, asked "well, is that really serious. I mean, it's not something you can die from or anything like that, is it?". But then, really, how bad does tonsil cancer sound?

I disagree. People are idiots and most have a bad habit of inserting their foot in their mouths. My Dad who passed away two years ago of Non-Hodgkins Lymphoma told me to let it all go...he also, always told me that you are screwed when you are diagnosed with oral cancer. Who knew that I would be touched with it? The big C is raunchy no matter which way you look at it.

By the way, my Dad was a saint on earth...God most certainly did not punish him for past sins...whoever said this takes POS award.

Jeff, I would have invited that nitwit outside for a private talk, Very private. LOL Then educated him.

Hey, these were educated idiots, one is a high school teacher her husband a college professor...go figure!
People only think in terms of the cancers they hear about in the media and unless they are touched by it themselves, they just don't know. I have had so many people just look the other way when I tell them and say they have never heard of it, as though it does not exist..oh well!

Educated idiots.... I like it.
Still that is more palatable than the self righteous morons invoking some deity's wrath.

M

Just before starting treatment I ran into an old friend, who did not know I had cancer. She was telling me about a mutual friends father and his battle with cancer. I just kinda told her, so do I. She looked at me, blinked twice and said, "No he has it "REAL BAD" You just have to shake your head.

oh yes, that one..there was no type of chemo available for my cancer and i was extremely lucky to dodge the radiation, as it only gave me a very small margin of reoccurance protection, so we opted out of it and to this point we made the right decision for me. But, I often hear from well meaning jerks, "well you didn't have any treatment, so you must not have had real cancer" omg, invasive surgery that changes everything in your life, was not enough for them...LOL

Unfortunately for us we have all earned that PhD in Cancer and I'm sure we may have said something "uneducated" before our advanced degree so I usually don't hold such statements against the person and I try to educate them if I can.

Just venting here and now a calmer mind prevails, thank you! I am usually very calm as well, educate them, not sure I want to bother. I will just bite my tongue, can't feel it anyway.

well, today was out first day of school. I still have some problems with my sssss, they sounds more like thththth. I was trying to say a kids name with a lot of sss, and my principal repeated what I said making fun how it sounded. Then I slowed downed and tried to say the name correctly. I think she felt bad after that. She said she was sorry and sometimes she talks like that. I responded "I am missing part of my tongue.' I wanted to go off and say what is your excuse. But I didn't. Why are people so cruel. i guess they just do not think about what they are saying. Some people tell me that I sound wonderfull, but I do not feel like I do.

Tell that principal it's inexcusable to humiliate you in public. She owes you a big apology. She also isn't a good role model for the kids.
It might make it easier for you to explain to the kids that you had surgery on your tongue and some of your words might sound different. Kids are usually very accepting if you tell them what's going on, unfortunately it's the adults who are usually the cruelest. I know my husband had to tell a lot of people in the courts what had happened so that they would be more understanding. Sorry you had to go through this
Good luck

Now how many overly people do you know that have a lick of common sense? They have book learning and that is about it.

Did it again LOL overly educated

Whenever I testify as an expert witness I always try to get the Judges permission , IN ADVANCE, to have a cup of water with me on the stand. I found out the hard way that this approach is the best. Occasionally I will also have to stop myself mid discussion with new clients to explain my dry mouth condition. Just comes with the new territory.

My speech has improved with each surgery to correct the join between tongue and flap. I sounded different after each one.
That�s why I put speech therapy on the back burner after the original operation.
One thing I will always remember is talking to a supplier on the phone.
He asked me what I was eating
I told him I wasn�t eating anything and the reason why I sounded the way I did�..
It went quite on the other end of the phone for a while....then the apologies started..
Needless to say I don�t deal with this person anymore.

Sounds all too familiar. At least your caller got quiet. We were the victims of prank calls at 1 am from some kids who were making a pun on our last name and when I asked them to quit calling, they started calling back even more frequently but this time mocking my speech and asking for the "guy who talk funny" with a garbled imitation of my impediment. We had to disconnect the phones at midnight for a week to get rid of them.
and forget about calling any support help or customer service line that has been outsourced overseas. I quickly tired of "I sorry, no understand, thanking you for repeating please".

Amazing. No sooner does Brian Hill post about how scammers and people trying to sell stuff on OCF sneakily hide their pitches in their signature line with a link to the commercial web site, then I am a victim of the same underhanded behavior on a post of mine that had no other responses. I did behave myself in my reply this time and try to be less "derogatory" since it was just a pitch for DVDs and not a mexican clinic. Still I will never ever use that web site and I will make sure every friend and family member boycotts it also.
So now I have something else to "hate": people who try and profit from our misery and misfortune by trying to take the one safe harbor here at OCF away from us.

Charm, I was always the one who was big a tattle tale about the scammers. Brian and Gary are used to me letting them know all about another live one joining OCF to take advantage of us.

I hate it when people try to profit from others when they are down. Here is a way to look at it differently. To me Im happy to read your post. It means there is another active member who is very alert to these unethical people and hates it as much as I do. To me, it means I know you will be on watch while Im recovering so the fakers' posts are very short lived. OCF memebers wont get tricked into any of their bogus advice, thank you!!!! Good job

Christine

A "good job" from you means a lot to me. As a guy, I prefer Enforcer to tattle tale, as the latter has negative connotations. Please relax and work on recovery as I assure you that I will be doubly vigilant now on these bad guys & gals.
Glad to be of service. I remain amazed by your cheerful spirit.
Charm

LOL....I think we have a new name for you Charm!! The Enforcer. Christine, I think we will call you the Protector instead of tattle tale. Where do you notice these posts, in what forum? I never see anything.

I want to thank all of you for the chuckles that I got. As a caregiver, I too have gotten many ridiculous comments. One feller with an ego the size of Texas asked me how my husband was and when I told him that he was weak and doing his best to recover, he began to remind me how he had encouraged my husband to go to his feller, a biochemist, blah, blah, blah. And when I told him that we were sticking with Sloan Kettering and would follow doctor's advice as far as chemo and radiation, he had the audicity and stinkiness to reply that "well, that's what some of my family members did and they all died." My stomach goes into knots whenever I recall that recent conversation, and then I remind myself that he's being who he is and how could I expect otherwise.

susanne

Right now we are having a problem in the Adjunctive therapy forum on my Up movie review where a rotten apple keeps posting links to internet DVD sites in her signature line Gary deleted one but then asked me to be "compassionate" about an 'Honest mistake". His kindness and good nature were repaid by the poster immediately putting in a different link to an equally sleazy DVD site. It's active now and will be until California wake up time comes.
The click for pay set up on the Internet rewards people who drive traffic to such sites and the unscrupulous target forums like this. Our "enforcing" and "protecting" really consist of just hitting the notify button on the post and Gary and Brian do all the hard work. When they get tired of being abused, they reluctantly ban the person's IP address.
I try to add some "derogatory" comments in the oft chance that the posters have some shred of conscience left plus a little vitriol seems to make them less likely to become repeat offenders especially the mexican clinic wack jobs who thrive on "dialogue" and "discussion" just like the "birthers". As Georgette's post above this ones proves: sometimes there is nothing to discuss, ignorant is ignorant.

Suzanne, if you read a post that sounds phony and too good to be true, That is one of them.

I guess it's safe to assume these people have never gone through what we have. That's really not nice that people try to invade our space like that....

[quote=davidcpa]When they give you an EXACT appointment time (I mean like 11:15) and you arrive EXACTLY on time only to wait more than a hour for his holiness to see you.

When you go to get a prescription filled and the lady in the window says "that will be twenty seven fifty" and you hand her $40,00 thinking that's reasonable only to hear her reply "no I mean $2750.00"!! [/quote]

Lucky you only waited 1 hour! We were the second appointment and waited 3 hours then saw his holyness for half an hour, then had to pay $23 in car parking (the hospital car park meant for day patients and visitors of in patients- not a shopping mall car park) because his holyness was 3 hours late.

Where you prescribed liquid gold?

when minutes after you have come out of the recovery room after a modified radical neck dissection, the consultant asks "Does it hurt?"

Erm no! It's all tickety boo! I was just thinking of doing a few back flips! Derrrr, does it hurt!

When I am talking to another teacher about what I was going through last year, and another one comes up butts in and tried to tell the story. This happened today by the way. I was so angry. It doesn't help that I do not get along with teacher anyway and I am her supervisor. LOL

Make her sit in the corner until she behaves.

You guys are really keeping me sane. Im so pleased that I didnt turn mean when I found out I got cancer! I was wondering why Ive been feeling so spiteful (which isnt normal for me) towards people who are uttering such meaningless words. I know that people dont know how to behave but common sense should prevail! Im fed up with people trivializing what Ive got by saying 'at least they caught it early, you will be fine' yep, doing just dandy thanks, my life has been turned upside down. Sorry whinge over!

I do have to say that I'm angered at some of these posts! What must go through their minds! They need a filter!
Damn.....to be born in a barn and with no common sense to boot! I'll be fine, but it sure sucks to be you! LOL

For the most part I just don't think people know what to say, so I just ignore them.

I'm going to chime in since I've had one of those days. I remember back to when Neil was diagnosed at stage 4 and a doctor said to us that stage 4 oral cancer is not as bad as stage 4 in other types of cancer. Oh really?

Suemarie

Since I have been on technical grammar kick, in that sense, your doctor may have been inadvertently right. Stage IV oral cancer is not as bad as stage IV in other cancers, IT IS WORSE. (English 101: if something is not "as bad" then it must be either worse or better )
Seriously, I am glad to see this thread alive and well as when I started it there were grumblings about it being "negative" as though there is anything positive about having oral cancer. I am glad newcomers find it comforting. Let's keep this list growing in case we ever do get Oprah's attention.

I just have to say that we call the people who utter stupid comments-DGI's -on the widow board I go on. DGI meaning Don't Get Its. I probably was a bit of a DGI before this chapter in my life so if someone says something only mildly supid I try to let it go. I have a much lower tolerance for people in the medical profession however.

I need to vent here. How about people who start giving medical advice to your husband who is terminally ill. I say" you are not his doctor, so be quiet." Or the person who says "how's his cancer?" I say, "here's his doctor's card, why don't you call him." Another one is "" I hear your husband has cancer", I say, "does that really make you feel better knowing that info, have a nice day". Walk away. The wife of my husband's best friend, who thinks it's her job to tell everyone in town our personal business. (we live in a very small town) I think I'll get my voodoo doll out. Taking care of someone who is ill is exhausting enough without dealing with idiots. I've risen above them and am trying to stay strong. Sorry , but I had to get this out.

At our church during dinner after our Sunday service one of the visiting group that provided the music sat across the table from me. As I was attempting to smush up my food in order to swallow it she looked at my face and asked "What happened to your face"? I started to turn the question around on her as well but with a shrug I just said Fate played a cruel trick and blasted me with cancer, removed my plate and left the fellowship hall. Needless to say I no longer eat at church functions since I have upper dentures and no lower teeth or a place to put them. I joke about smushing up my food but it really hurt when the women I work with once made fun of my peanut butter and jelly sandwich-which was the only thing I could eat well at work. I now eat only yogurt or banana at work and not where anyone can watch. Good thing I work nights. I sometimes feel like one of my patients and want to say Good morning this I am nurse Franekenstein how may I help you. Humor gets me through a lot of tough times but I seldom go places I know people will stare at me.

Glad I came back the negative comments scared me off once but feeling better about facing what may come and facing the future with whatever the Lord has for me. I won't stay away again. Makes me feel there is a place out there for me.

Negative comments have no part in my life. I eiether inore or be a smart ass. I have never given up one thing because of someones ignorance but enjoy my life and go everywhere. I think we have sacrificed enough and the hell with the fools of the world, Join then and do what you want. I try to wear my OCF shirts when I go strange places ot waiting areas in Hospitals. The shirts say alot.

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

I had an experience with a telemarketer last evening. I heard him say I can't understand you. Needless to say I rewrote his language barriers and educated him into the world of NASTY. Then I told him about him and his mother and then, told him I am on the do not call list and hung up. Good thing I went to church this morning. LOL

EzJim
amazing coincidence. Maybe it was the same jerk who called me.
I think he's the one needing divine forgiveness here. Sounds like we have similar responses. Hope your HBO dives and drives are going well,
charm

Not being able to swallow any thing for the last 21 months has garnered some real gems. My favorite is my aunt that is always wanting me to swish food around my mouth just to enjoy the flavor. Hilarious!
I will modify my signature mess when I have a chance. Work and school first I'm afraid.

We get telemarketers here who are based in india, and they have trouble understanding my "foreigness" and i have trouble understanding theirs. Sometimes I just say "desolee je ne comprends pas! au revoir" and hang up. they are an irritating breed full stop.

airkitty

amazing isn't it? The graduate student who is interning with my speech pathologist commented on how nice my shirt looked that my wife got me for my birthday last week and then blithely asked: " So did you go out for a nice dinner?"
Both the therapist and I broke out laughing.
charm

ceclia

wow: that's showing those telemarketers no "merci" (I can still make a bad pun even though I can longer speak very clearly)

Know this isn't the idea behind this thread but don't you just hate it when dealing with this crap just gets to be too much.

every day Tom...EVERY DAY!!

Second that - EVERY DAY!!!!!!

I am right there with you Tim. Every day is too much!

There's always the Island. The only problem is that sometimes I don't have the time or energy to get there.

A person at work said "Oh, thank God it's not breast cancer."

Huh? My first thought was that I only have ONE tongue.

I can not believe someone would say that. Do you want me to beat them up?

I thought most females had 2 tongues?

Watch it David. Don't go getting too cocky in your bright red suit or you may live to regret it.

Take care,
Eileen

Tinkerbell,

That's one for the record books. Where are peoples brains? Well we needed a laugh.

Take care,
Eileen

Dangerous ground David,dangerous ground .By two tongues i guess you are not talking of the forked variety favoured by the males of the species.Lmao.

I needed this laugh. Thank you. David, I have to agree with everyone else, watch it. Pay backs are coming. :P

Yes the 2 tongued variety, Commonius Femaleus, typically has a main tongue that branches into 2 about midway to the front. Distinct characteristic includes saying one thing and meaning something entirely different. This species is found throughout the world and is thought, though not yet proven, to be extraterrestrial in origin.

David

Sounds like someone has been watching too many "V" reruns on SyFy. Just the other night, the rerun of that 1984 series showed the climatic scene where the Visitor's & earth girl's baby was born and the super cute little girl baby everyone was oohing about opened her mouth and there was the forked tongue of which you speak.
Tonight the newly reformulated V starts on ABC at 8.

I saw previews, looks too scary for me! I'm still trying to overcome my fear of men in white lab coats! FYI a woman may (@times) have a fork tongue, but for the most part has a heart of gold!!! Enjoying a sunny, chilly day in upstate NY !

David, we ladies know where you live...........
(muhahahahaaaa)

Pandora, I can't believe someone would say that ("thank goodness it's not breast cancer") - they have no idea how very damaging this cancer is, or how it can affect the very "face" you put to the world. Hope you educated this person. Thank goodness for Brian and Gary (site originators) and now David (who earned his "red letters") and others who are setting the world straight about oral cancer. Thanks to each of you!

So rude! Bother are terrible cancers but oral cancer effects you speech taste social life- just everyday life getting by- talking on the phone-- simple thing...Boobs smoobs... I'd give both for my tongue back any day of the week!

The last time I ssaw my oncologist for a checkup he had two residents in there and one of them said to me-- oh you have an accent!

I was like-- are you kidding me? You have my medical file in your hands- you know what I went through-- its not an accent its a speech impediment!

unbelievable. I think people just don't know what to say and they think they get nervous and just blurt out something they think is helpful or comforting...when often it isn't

David....extraterrestrial????!!!! BYW, congrats on becoming a monitor. You've earned it!

Misskate, I've been watching my Mom go through the terrible treatments, the loss of swallowing, the PEG, they've done everything they can with a prosthesis so now she has a hard time being understood and writes a lot of things down on dry erase boards. I asked her the other day what she wanted for Christmas and it was heartbreaking to hear her say "a drink of water". Just to be able to sit in a room and socialize with others, even with a glass of water in hand - I didn't realize all the different impacts there were. On Nov. 10 she has another swallow test scheduled. I'm not trying to get my hopes up but I am saying lots of prayers and asking others to do the same. I would LOVE to be able to give my mom a glass of water so, so badly.

Okay, so I just heard a good one. I was in one of my man special ed meetings. Had a grandparent tell the story of her daughter and her surprising death, she had an ear infection that turned into meningitis, tragic I know. This grandmother, knowing i had cancer and why we had to get the meeting done so quickly, said "We wish she would have had cancer so we could spend more time with her." I just about lost it in that meeting.

You better hope she doesn't start hanging around you more!

I am so glad this particular thread has shown staying power in this forum. I think we all need to share the frustrations and yes the humor in our new normal. Keep up the good work people and let's continue to share the slings and arrows of outrageous fortune that we endure daily.

I hate it when someone tries to tell me that there are other alternatives to chemo. They are talking about unproven facts. I posted about this in my blog.

Following up on Angelia's post, I hate it when "celebrities" can make money off of pushing bogus "alternatives" to chemo. While I have posted a link to web sites refuting some of these in other posts, I could not have said it better than this quote:
[quote]If there�s one thing I�ve become utterly disgusted with in the time since I first became interested in science-based medicine as a concept, its promotion, and the refutation of quackery and medical pseudoscience, it�s empty-brained celebrities with an agenda. Be it from imbibing the atmosphere within the bubble of woo-friendly southern California or taking a crash course at the University of Google and, through the arrogance of ignorance, concluding that they know more than scientists who have devoted their lives to studying a problem, celebrities believing in and credulously promoting pseudoscience present a special problem because of the oversized soapboxes they command. Examples abound. There�s Bill Maher promoting anti-vaccine pseudoscience, germ theory denialism, and cancer quackery on his show Real Time with Bill Maher ....Then there are, of course, the current public faces of the anti-vaccine movement, Jenny McCarthy and her boyfriend Jim Carrey... her efforts are contributing to the return of vaccine-preventable infectious diseases...Unfortunately, last week the latest celebrity know-nothing to promote health misinformation released a brand new book and has been all over the airwaves, including The Today Show, Larry King Live, and elsewhere promoting it. Yes, I�m talking about Suzanne Somers, formerly known for her testimonial of having �rejected chemotherapy and tamoxifen� for her breast cancer, as well as her promotion of �bioidentical hormones,� various exercise devices such as the Thighmaster and all manner of supplements. Her book is entitled Knockout: Interviews with Doctors Who Are Curing Cancer�And How to Prevent Getting It in the First Place."[/quote]
Of course none of these doctors are doing anything except getting rich off of the misfortunate of cancer patients and they are a true rogue's catalog of quacks.

When I told my sister that my radiation that was due to start November 16th probably wouldn't get going until the next week, she very casually told me that her husband, whose first wife died of cancer, said that was the exact reason that she died - her treatments kept getting delayed. Thanks a lot for the vote of confidence.

Other people seem obligated to tell me about people they know who found out they had cancer and died two weeks later. Thanks for telling me - lol.

I had the same problem yesterday. My director of special ed told me that we can not be too aggressive with this stuff. Her father in law had it and two years later he died. I am like, I really do not need to hear that

We all have to develop a very thick skin when dealing with people during our experience with cancer. We need to firmly believe that we have chosen the right combination of doctor(s) and treatment and then let tunnel vision guide us the rest of the way. We all know that there is no way anyone could possibly understand what we are going through both mentally and physically unless they themselves were touched by cancer so "forgive them for they know not what they do".

As I was going through treatment and sick - a co worker said to me........."Boy, I have learned one thing from you, If I am ever diagnosed with cancer, I am not going to treat it. It looks like the treatment just makes you really sick and then you die anyway".

Wow is that ever cold. Unbelievable what can come out of people's mouths!

OMG Carmen.....I can't believe your co-worker would say something like that. People never cease to amaze me sometimes.

Shelley

People can be so cold. My boss asked me if I could run up to the school next week in between treatments to do a meeting. UHHH, don;t think so.

Angelia,

WE all can react differently...blah, blah, blah but the vast majority of us don't feel anything for the first couple of weeks of concurrent chemo/rad so I wouldn't necessarily put my life on hold until your body tells you to.

Carmen

We all die at some point, but cancer of the tongue is an especially gruesome and painful way to die if left untreated. If your co-worker persists in such remarks, you can always ask nicely;
Oh, really? You would prefer to have a tumor block your throat and your airways slowly while it spreads until it bursts through your cheeks just to avoid temporary suffering?
Optional reply depending upon how corpulent your co-worker is:
"Oh really? It wouldn't do you any harm to lose some weight !"
But then I am cantankerous and have actually used such comebacks after I returned to work and heard the same thing.
It did put an end to their comments though.

Angelia

As David pointed out, many of us were just fine the first two weeks of radiation and chemo with no readily apparent side effects. If you can, do drop into that meeting - you will need all the goodwill you can garner later on. Likewise, if you have undone projects, chores, now is the time to finish them.
I used to joke that getting cancer was the only way my "honey-do" list ever got done.

Angelia,

I agree with David and Charm. Dan took great comfort in being able to stay connected to his work and in being able to do things with our kids and with friends during his first couple of weeks of treatment.

I had not thought of it for a while, but when I was first diagnosed, my daughter in law went off on a rant about people she knew who had died of cancer.
I friend who was there (his wife had breast cancer) interupted to tell me that people often like to tell you horror stories, and to ignore them. My DIL shut up really quick.

My grandmother (who is completly with it) just said to me the other day "suzanne, you are lucky. You have never had any serious health problems. Except for that mouth thing" gotta love it!!

Unfortunately, my RO told me he wanted me off for three months beginning Nov. 16th. he said he did not want me near the students while I was in treatment since all the flu viruses are going around. I am okay with that, ane next weekI am having all the procedure tog et ready for the treatment. I will not be feeling like doing anything.

Makes sense about not being around those germ machines. I hate tax season as I am exposed to so many different people in such a concentrated time and I am constantly shaking hands and hugging people and often they bring their own germ machines with them. Of course the concentrated cash flow makes up for a few colds. lol

Ha germs! I got the lurgy from work last week. For weeks people had been sneezing caughing, got time off ill. And i had to get a nasty cold days before my first accountancy exam. Beechams for Flu help and I am ok. But Martin seems to have avoided it all together! Despite me bringing it home! Weird.
We have swine flu hand washes everywhere at work and a man comes to clean our phone and keyboard every week.

Angelia, you will be fine. Im really hoping you dont psych yourself out before things get started. You dont know yet how you will feel, please try to think positive. While going thru any kind of tx for cancer isnt easy, its easier if you think positively.

Getting a PEG tube in will be a little uncomfortable for the first day or two. Its an outpatient procedure. The fitting for the mask is no big deal, doesnt hurt.

Im concerned that you are getting worked up and scaring yourself so much that you have a difficult time of this. We will help you thru this, please be brave. Thinking positive will make this easier on you. Maybe focusing on the good things will help.

I know you have your church members to lean on. What about close family members and people in your own household? I have faith in knowing you will get thru this and be ok. It was caught early. You are being treated at a CC, right?

Please stop letting cancer steal your time. I know Donna already wrote about this somewhere on here. Now is the time to prepare. Enjoy your family and church. Do everything you wanted to do now. Take a walk with your kids, go out to dinner, even have a party. When I was first diagnosed, of course I was scared, but I went and did everything I wanted before I began my treatments. Then I did things like doing my spring cleaning and grocery chopping with easy things for the kids to make. Take pleasure in your day to day activities and give your mind a break from worrying about cancer.

I hope this helps you. Have a wonderful weekend!!!!

Christine, you are amazing. Yes you guys are helping me. I am taking my kids to a nature park on Saturday. We are going to have some fun this weekend with the grandparents.

Christine

So glad to see you back on the board after all you have been through. Many of us here don't have much to complain about compared to what you have been put through but that doesn't stop from complaining
You take everything in stride and provide a welcome and comforting presence in this and any other thread
charm

Angelina...Please listen to Christine. She has been through a lot and has wonderful insight. I understand the fear you are going through to a certain point. I would freak out about every doctor appointment and biopsy and it took over my life. This is a rather large bump in your road but you will be ok.

Christine, you really amaze me. Is there anything you can't do?

Suzanne, I am listening to each and everyone on hear. Most importantly, my God is helping me through this and slowly changing the way I feel about all this.

Let me just add, I hate it when a certain person in my life makes comments about not being needed because so many others are helping me out.

Eeekk..you don't need people making you feel guilty about others helping you, that's for sure.

I'm happy your listening to everyone here:) You are a strong lady and you will get through this.

Good luck tomorrow and I'll be checking to see how you did.

Since this has become the most viewed thread on the forum, I guess it has struck a responsive chord with OCF. Now many of us have complained about the insensitive remarks that other make, while others have risen to their defense. As a Libra, I have to balance out my sarcasm and disdain for the dolts with the understanding set forth in this excerpt from today's Washington Post relationship columnist: I love the phrase:
"DUHSTRUCK"
[quote]I'd say your boyfriend was dumbstruck by your news, but instead of "made speechless by shock," we really need, "rendered moronic by shock." Duhstruck.

Is this normal? Sure. Most people struggle to form the right responses to "I have cancer," and some take the extra step of blurting out the wrong ones. His fumbles are even less surprising when you factor in both his social awkwardness and his abrupt emotional promotion: Yesterday, "Thai or Chinese?"; today, "How can I support you as you fight for your life [even though I have yet to determine how I feel about you]?"

His isn't the only predictable reaction. You, too, are responding to your cancer in a normal way. Life-and-death news is a tornado that picks up your life, shakes it and drops it on a hill a few hundred feet away. Things you thought would break are intact, things you thought were permanent are shattered, and the light hits virtually everything in a new and surprising way. [/quote][quote][/quote]

For those who want to read the whole thing, question and answer in context, here is the link
Cancer or Boyfriend?

I like the description of the tornado...very well put.

Up until April 2007, when I had nearly all of my tongue cut off, as far as I was concerned the movie theatre and popcorn always went hand in hand.

Going to a movie recently with a friend who is very aware of my situation, I commented on how delicious the popcorn smelt, and wondered whether I would ever be able to eat popcorn again.

My friend said, "don't worry about it, you'll be right Kaz, just walk faster and block your nose so as you can't smell it".

My response can't be repeated on this forum..... it was very colorful. If only it was that easy. Some people just don't get it!

Karen

Give it a try - take lots of water with you. Since my 1st surgery 5 years ago and my 2nd 2 years ago, I too avoided popcorn, but last week I went and got a popcorn with EXTRA EXTRA butter. I ate one kernel at a time - washed down with water, and YES - it was delicious. I have approx 1/8 of my tongue so hopefully you too will find a way to enjoy this treat. At one kernel at a time you don't tend to overeat so I didn't feel badly about the butter. It was delicious!

Donna

w

Nice to see you back, Christine. Hope all is going well
Nancy

I have another one for you. I was at church today and the same lady that told me to read Suzanne Summer came up to me, and I thought "Oh no what is she going to say now." Well she did it again. She asked me if I was glad to be off work for three months? What? I told her I love my job and I miss it very much. She then said that lots of people would be glad to get off for three months. HELLO,I just wanted to slap her in the face. Why would anyone want to be off for three months going through this stuff? I just don;t think she understands what is going on. Anyway maybe i am going overboard, but I am tired of people coming up to me and telling me that I am lucky tog et to be off work for three months.

Oh Boy. Even well intentioned people stick their foot in it - sometimes repeatedly. To be charitable (and it IS Sunday), we shall assume that she was looking for some bright spot in your situation to comment on and that was the best that her feeble little brain could come up with - bless her heart! (I learned the"bless her heart" thing from some Okla friends. You can say whatever nasty thing you want about someone so long as somewhere in the sentence you state "Well bless his/her heart....") Gotta luv those Okies!!

She sounds like people who tell little kids how "fun" it's going to be to get their tonsils out and have ice cream. My friend told me she wished she could lose weight as "easy" as I'm going to be doing.

Yeah, I sure do love those okies, maybe cause I AM ONE!

Now about the weight loss thing, someone asked me how much I lost and that I look good. She wanted to know my trick. I told her just get part of her tongue cut off and she would have no problem losing weight. Her reaction alone made me start laughing. ANother person, said hey look on the bright side you can lose weight. I did not want to do it this way.

I have another funny to tell you. Actually it ended well, but I was ticked. As many of you know I have been having nothing but problems with this PEG and haave a hard time getting up and down and I am really bloated with it. Well, one day a nice older gentleman asked me when my baby was due. I told him I was not pregnant. I did go on to tell him what was going on and he immediately stopped what he was doing and prayed for me. That was a surprise.

Ahhhh!!! People can be so annoying!!! I also had someone tell me I was lucky to lose the weight. So I had...."I have cancer. Are you still jealous of the weight loss plan?" They shut up real quick. Angelina....you have had 2 annoying incidnets. I hope you run into less of them...especially the lady at church..the poor thing. You can't say anything to her:)

I was checking in for cehom yesterday and the receptionist was giving me a tour and showing be all the books. The took me over the breast cancer section it was a huge section, I felt little slighted. I said "I do not them I have oral cancer." She said, :be glad you do not have breast cancer." WHOA. Have cancer is bad enough, but being told to be a happy about not having cancer that may not hinder my ability to eay. They did not very much stuff on Oral cancer at all. I did get a book about head and neck cancer.

That must have been a kick in the butt! ANY cancer is horrible. Personally I'm so sick and tired of all the press given to breast cancer. Granted, any light shown on cancer at all benefits patients but it is so sad to see a cancer that so drastically alters a persons life being swept to the side. I take any chance I get to enlighten people on the subject. Maybe someday it will be taken seriously enough to warrent better screening procedures.

I wonder if we'll ever stop worshiping The Breast. I mean, losing any part of the body is devastating, but I'd trade a chunk of my breast to get my fully functioning/tasting tongue back any day of the week!

Angelia & SueMarie & Margaret

I hear you. Obviously as a guy, I don't get these odious comparisons about breast cancer, but I do get the exact same thing about Prostate cancer. Cancer of the tongue is the Rodney Dangerfield of Cancers: we get no respect.
Charm

[quote=margaret_in_ma]I wonder if we'll ever stop worshiping The Breast.

I would have to vote NO to that question!!

I've had breast, oral and renal cancer as well as basal cell carcinomas, one benign and one small malignancy not deep with a good area of safe margins removed. On my last colonoscopy the Dr. removed polyps which could posssibly have developed into worse. I take medication for acid reflux which if untreated could lead to cancer of th esophagus.

There is no "better" or "worse" cancer. All are awful and potentially deadly - some quicker or causing more suffering than others. Even a small benign skin cancer is frightening - I refused dental x-rays for years after mine was removed. All treatment surgical, chemical, and radiolical has risks from minor scarring and temporary inconvieniece to possible life-long afteraffects. Every procedure, treatment and medication carries it's own particular risks includinng leading to further problems, not working and even being potentially lethal.

The emotional and psychological toll of cancer affects many - patient,care takers, family, friends, co-workers, medical personnel working in the field. These affects can linger for years and are often unacknowledged.

Thank G-d today much progress has been and continues to be made in identifying causes, detection, prevention and treatment of many cancers. As Brian has shown us, those of us who have been affected have an obligation to do as much as we can to emotionally support others, promote awareness, increase knowledge and do whatever it takes to fight the battle. Our first instinct and obligation is to fight for the cause which has affected us personally but just as one soldier or regiment can win or lose a battle, a general attact on all fronts by all forces is vital to win a war.

I totally agree that any type of cancer is horrible and can be devastating in its own way. However, until I watched my mom go through the last 4 1/2 years, I had no idea how much OC changes your life. I hope to never experience the "C" word, but I've thought several times how it seems like it would be easier to have a different kind of cancer than OC because then at least you could still eat, talk, enjoy a glass of iced tea w/friends...have a drink of water, which is what my mother told me she wanted for Christmas. I'm trying to help spread the word.

Nancy T

Nancy,

I sure do agree with you, and I have the same 'wish list' for christmas as your mom.

Karen

Karen

Santa is going to think he got zerox copies of Christmas wishes from Oral Cancer patients like us. It's funny, we were just talking about Christmas gifts and I remarked how I would wish to be able to drink a full glass of water, take a sip of wine and eat just one meal except that I know it's not gonna happen this Christmas. Yeah, all cancer sucks, but the holidays with the emphasis on food are especially tough on us. There's a reason why the worst punishment the Catholic church gives you is excommunication - being cut off from receiving bread & wine. And most other cancers just don't do that.
charm

My xmas list is YooHoo and maybe eggnog with some spirits. "Drink the yoohoo" is the battle cry for one of my surgeons. They will try to open my esophagus again (3rd time in 4 mths) on the 15th. Maybe an xmas sip of yoohoo will happen.

I totally agree with this topic. David..you are right..people are obsessed with the breast, or as the bumper sticker says "save the ta-tas" I would rather have both breats removed and look like I'm in 1st grade than have tongue problems. Do people ever think before they talk? I think if I had been on the receiving end of the comment Angelia got I would have said
" really, I'm lucky? I don't have a tonge" I like to shock people when they act stupid. Ok....that's enough...I vented...lol

airkitty...I sure do you hope you get that yoohoo!!

I just looked and saw that we have 9499 views on this thread. I know we can make 10,000 before Christmas. My latest peeve has been at my gym where everyone is saying: "Oh, your speech is so good, just like it used to be". Well, their assurance does not comport with my MP3 voice recorder which tells me I sound like a major stroke victim.
I appreciate the sentiment behind the comments, but come on, I know I do not sound like myself before the Cancer came back a second time and I needed the tongue surgery. I smile, but I am tempted to say "I guess you never listened to me before then"
But that would be wrong.
Charm

Thanks Nancy for keep spreading the word. When you are ready to do an event, let me know. Would love to help!

Suzanne, love your response! YOu are too funny! But everything you said is right on! I think the same way when it comes to oral cancer. I think my brother would rather have anything cut off than his tongue. Not being able to communicate or have a drink or eat your favorite food, one of lifes greatest pleasures, is a horrible horrible thing to deal with. People just dont know, they need to be aware. Hearing all of you confirms by determination to keep going with awareness events and screenings!

I found a new thing to hate today:
My boss is actually scheduling his employee lunch around my next surgery. Sounds nice I know but keep in mind that I have not participated with any company dining events in nearly 2 years. Or since I stopped being able to consume nutrition by mouth (a.k.a. eating). I would love to tell you that he has a big heart as is being considerate but really he is more of a lazy moron than anything else. Thanks for listening to me vent.

Got to add another one to this. I was talking to a friend on the phone last night, and I know she did not mean anything by it, but this is what she said, "I am envious of your diet plan in a way." UH, Hello! I told her I would gladly trade places with her and then she realized what she has said and tried back her way out real quick. It was kind of funny to listen to her try to fix that one.

you make it thru all this cancer, Tx and recovery crap and you still get normal colds!!! Why can't we get some lifetime virus exemption?? Haven't we been through enough? I have a case of the "winter" (even though it's still in the 80's) crud. Have had it since Sunday and now I'm in the "I known I'm going to cough my head off" phase. It's bad enough to have to put up with this stuff but it's made worse by all the caring people around me telling me I need to do this or do that or go see this doctor and on and on! Ugh, just leave me alone!!!

What a great idea to ask Santa for : the lifetime virus exemption. David, I'm sure your wife can whip up a healing Cuban version of chicken soup to ameliorate your misery if you ask.
Actually, I have not had a cold or any other illness at all since the Cancer was diagnosed - and zero flu shots. Counting my blessings (as well as the views of this thread - I had asked to get over 10,000 by Christmas and we have reached 10,450)
and just to stay on point:
What I will hate is not being able to shovel the foot of snow predicted here for tomorrow without getting tired plus having to bundle up like crazy instead of just jeans and T-shirt with steam pouring off of me like before Cancer made me just like the old cartoon character: Chilly Willy the penquin - always cold.
Charm
Charm

I hate when people try to talk to you like they know what you are going through. Or when they ask stupid questions like why are you in so much pain? Uhh, hello I have radiation being shot in my mouth and it is getting burned to smithereens. I try to be undertstanding, but it is so hard to sometimes.

Angelia,

You're funny when you're being tortured!! With that attitude you will do above average. I was worried about you early on but you have adjusted way better than a lot of us did. Keep it up and before long you will be walking right out of that damn tunnel.

David,
I am still worried about me. I do not want to do anything. I have lost 60 pounds and still losing. I can not wait to walk out of the damn tunnel. I do have my moments when I am not funny. I have to cope some how, and I would rather crack jokes and laugh then cry. I have done my share of tears, trust me and I still do. I look at the machine and say "Beam me up scottie" I go some place else for 15 minutes. Wishing I could stay in that someplace else until this was all over.

Angelia...
Are you saying you lost 60 pounds since rad/chemo started a few weeks ago???? If so your docs sure are missing this important side effect. It means you arent getting enough nutrition to sustain yourself. Any significant weight loss during radiation treatments would make you feel awful. Im speaking from experience, I lost 12 pounds in a week and everybody flipped on me. Of course, I felt absolutely terrible. Going thru rad/chemo is the worlds worst diet. I hope your weight loss is from your original diagnosis.

Once I realized the consequences of not getting enough calories in daily, I began drinking choc peanut butter milkshakes. Some days I would drink 2 or 3, each once had at least 1500 calories each. If you want the recipie, its listed in the eating section. Hang in there, you are about 1/2 way done.

I am so trying to get in enough calories, but my damn throat hurts like crazy. So far today I have lost everything I put in my PEG tube due to this swollen uvula issue and it gagging me. Now my throat hurts even more than it did this morning. I now can not talk and lost my voice to. How can it all go down hill in just one day?
I have lost 60 since diagnosis. About 20 has been since rads/chemo has started. The bad thing is, I just don't care right now.

Angelia

Get a grip sister. 60 pounds loss is too much. I went from 177 to 126 but I was super muscled. Demand answers from your doctors. With a PEG, this should never happen. Somebody is doing less than due diligence with your TX. We all worry about you.
charm

They seemed to have laughed it off last week when I had lost 8 pounds in a week well so did I. I am not laughing it off now. I will be okay. I am going to get through this.

AMEN Angelia
Charm

I dont get it. You lost everything you put in the PEG due to the throat issue???? Please be diligent with this issue.

Charm is right, we all do worry. As a mother, I try to spare people from the horrors I went thru. I lost 65 pounds and that was with the PEG. I lost an additional 10 recently due to my 3rd round of OC. There was also no caregiver for round one to help me other than my 17 year old son who was still just a kid. Losing 8 pounds in one week shows you arent taking in enough calories. Time for you to get some help with taking care of yourself.

I will be blunt with you. If you are not getting enough calories and hydration you will feel awful and worse end up in the hospital. It happened to me several times. All I did was cry the whole time I was in the hospital too. With the holidays near and young children at home, please get help taking care of counting your calories and fluids. In the end you will feel so much better.

How many calories are you taking in with the peg daily? What about fluids, how many oz daily?

Angelia,

Christine is right, you will end up in the hospital if you cannot take in enough calories. Do you have a nutritionist?

Kelly

David,

I hope you're feeling better today. We have over a foot of snow and you're welcome To come up here to start feeling better.

No sickness in this house. Must be the cold air keeping those viruses and bacteria inactive.

Angelia,

Reality check!!!!

WAY WAY TOO MUCH LOST IN THAT SHORT PERIOD.

Believe me if you THINK you are feeling bad now, just get dehydrated and associated weakness and develop the BIG C on top of everything else and you will REALLY know pain and discomfort. You will also, as everyone else has said, end up in the hospital and they will hook you up and drip food and water into you until you are out of the woods and waste about a week in the damn hospital so avoid all that agony and make sure your RO knows you have lost so much and can't keep anything down.

Otherwise we will all beat you up!!!

Jerry,

I really appreciate you most kind offer but I'LL HAVE TO PASS ON THAT STUPID OLD PERSON'S SENILE SUGGESTION!!!!!! Perhaps you need to get out of that cold and let your brain warm up to proper recommended operating temps. Just saying...

Today they are saying that we might not get out of the 50's. So much for that global warming stuff.

My husband called the Dr. today and he said that I was not tolerating the Jevity in my stomach and to try Ensure or Boost ot carnation INstant breakfast. He is going to look at it tomorrow when I go in for treatment, but in the mean time stop using Jevity and try something else. I do nto think it is the Jevity though. I think it is this stupid uvula causing me to gag and then once I do that is all she wrote. I know i cna tolerate Ensure and Boost as I have been drinking those without problems. Guess I will need to go buy stock i those and send back all those cans of Jevity.

Hi Christine:

On your post you mentioned choc peanut butter milkshakes and that the recipe is listed in the "eating section." Where is the eating section, or how do I get to it? Thanks. The milkshake sounds good.

Julieann

Angelia

Listen to Christine !

DavidCPA

I just shoveled 24 inches of Snow out of my driveway. I am so proud. Some life in the old dog yet

Everybody

thank you so much for viewing this thread I started. We can make 11 Thousand by Christmas with 10870 views today.
Charm

Ok. I'm sitting in the hospital waiting room amongst about twenty or so people who are also waiting when the wife of a friend sees me and asks what I'm there for. At this point in my treatment I was waiting to get a scan and hadn't started radiation yet. When I told her why I was there and that I had cancer, she decided to loudly tell me, in earshot of everyone else, that I should have been using a juicer. "Don't you have a juicer?" (Wore it out ten years prior.) "You have to have a juicer." And in some wierd mother knows best tone of voice as she's walking away, something to the effect of "You might not be in this mess if you had a juicer." I looked around me and some folks were looking at me with some sort of a s*&^ *!+=^% smile on thier faces as if to say, "My, wasn't she just so sweet."
AaaaagggHHHHHHHH.

Charm,

And you call that fun I guess???

We only made it to 59 yesterday. That's soooo cruel!! I could see my breath this am. Aruba here I come!!

I had to contribute this one. My sister is visiting for the holidays. She lives in a foreign country, and we don't see her very much. I retired right after my husband was diagnosed in 11/07. Good thing, too, as my job as caregiver has been full time ever since. I am also a fine art painter and have put aside my brushes temporarily.

The other day, she asked me since I am not painting, what do I do all day? I laughed and said, "Good question. Between Dr. appts., meds, and dressing changes, I guess not much."

I should have said that I sit around in my fluffy slippers, eating bonbons, and watching soaps. Unless one has been there, most people don't really know what this cancer trip is all about. Oh, well, water off the duck's back.

Anita

Charm,Would youy like to contribute some snowballs to the ones I have made and put away to bring to David (and throw at him) when I see him in March?

At least he didn't call you "a senile old man".

David,

BTW, the skiing was great today.� Sunny and 28 degress...delightful.

Better keep those snowballs in a cooler if you plan to use them in Fl in March.

Senile and old or not, I still expect you to find the cure for all cancers next year.

There is NOTHING delightful about 28 degrees in Gulfport.

Jerry

After the plow came yesterday and pushed all the snow in our cul-de-sac in front of my driveway, I had to go out and shovel through a 4 foot wide, 41 inch deep wall of snow & ice. I did carefully set aside several ice boulders for you that should melt to snowball size by March.
charm
Oh, and to keep on point: Don't you just hate it when you shovel out your driveway and then the snow plow comes by and walls you in? Feels sort of like when the radiation aftereffects come even when you have stopped treatment.

Hummm, two old senile geezers plotting against a virtual kid. Just doesn't seem right.

David
Watch it whippersnapper (and don't pretend you are not old enough to know that phrase)
Charm

Yes my great grandma used to say that according to my Mom.

doncha just hate it when old farts pretend they are young, just because their wifes are ?
Charm

I am young, I am young, I am young as I click my heals 3 times.

You guys are killing me......LOLOL....


Shelley

Shelley

We three laugh with each other, not at each other as you can imagine. What I really really hate is when my internet connection goes kaput and I am cut off from OCF.

Charm

When you are walking through a store and everyone stares at you but then averts their eyes when you notice them staring...I just wanted to tell the "Merry Frackin' Christmas"

I actually just wanted to be #200 on your post Charm, the stares don't bother me as much as they used to.

Merry Frackin Christmas everyone...let the whirlwind begin...

Eric

Oh yeah, the stares. But I was already used to them since for the last five years, I have worn a full length Western Oilskin Duster overcoat replete with a big Black Aussie Outback Hat. A bit of a different style than the $400 Gucci loafer consultants with their $900 suits that I ate up.
What a perfect Christmas gift. #200 in a thread with over 11,000 views.
Trust me brother, I am Rocking around the Christmas tree this year. Thinking fondly of you and wishing you and your family all the best.
Charm
PS. Don't know if I mentioned this, but my son just got accepted into George Mason Law School for August 2010. Good thing, because with a major in Religious Studies, he would be unemployable. (Although proud as all get out that he is following in my Seminarian for Catholic Church, then Law School path)

You three make me laugh.

I will add to this, I hate it when my husband cooks dinner for the rest of the family and I can not eat it. It is tradition for us to have a Japanese meal on Christmas Eve. The kids got to enjoy it, and so did my husband, but not me. My husband lived in Japan when he was young and had a favorite dish over there. Now he shares it every Christmas with us. I Hate that I could not enjoy it this year.

Charm, congrats on your son getting accepted to Law School.

Charm,

Thanks for sharing the great news about your son. Having two children that are lawyers, I know how exactly how you feel. Congratulations.

Angelia,

I'm sure that next year you will be sharing Japanese food with your family again.

Wippersnapper,

The way I calculate it, in about 2 years and 4 years respectively, you'll be as old as Charm and I am right now. So then you will be a senile old man. I'm counting the days already.

Seriously, it's not bad being senile.....you can get away with so much. What birthday? What anniversary?

Charm,
congrats on your son! Thats fantastic news. You have a Merry Christmas!
teresa

I'm ahead of you guys in that senile benefits class because I have been using the Chemo Brain excuse for 3 yeras now and it works!!

My favorites:

How could you forget? Sorry chemo brain;

I told you that just 2 days ago? Sorry chemo brain;

Don't you remember her name? Sorry chemo brain;

How could you remember what time the football game starts and you can't remember to pick up dog food? Sorry chemo brain, and

Where are you, your appointment is here waiting? Sorry chemo brain;

The worry free life just goes on and on.

Charm, you must be so proud of your son. Congrats to him on getting into law school

Charm,

Congratulations on your son, nothing like the pride you have in your children. I love the ensemble, who would question your badassness in that? Not I! (sorry that's my saying at the moment..."are you questioning my badassness?" a quote from a tv show)

Merry Christmas my friend, you deserve holiday cheer.

Eric

We have to keep ths thread going. I hate it when I try to be positive saying only 15 more treaments to go, and the person I am talking to says, "man, you have a long way to go yet." I am thinking in the whole scheme of things 15 treatments is not that much, considering how many i have done.

It is amazing the comments people make. After 11 months of speech therapy and home practice, I can talk on the phone although I still elicit "what? what?". Still most people keep telling me "Oh, you sound great but that is EXACTLY what they said 9 months ago. When I questioned this, the response is that I am better now and this time they really mean it. Turns out they did not want to discourage me, but I wasn't being fooled anyway since part of my therapy is taping myself and playing it back.
Long story, short moral: oral cancer doesn't make us stupid but people sure act like it does.
Charm

wow, I have been under the weather the last few days after trying to use up some Jevity 1.2 before it expired which triggered massive gastric upset so I missed Christine's OCF blog entry about her parking lot encounter.
Of all the posts here on this thread, I think that her story is the one that I hate the most. For those who did not read it, some jerk jeered at her appearance in an attempt to divert attention from his wife's banging the door of their car into Christine's in a parking lot. If she had shot him, if I were the local prosecutor, I'd waive charges on the basis of justifiable homicide.
Charm

Christine's story is shocking. It's difficult enough to go through surgery, chemo, rads, and related issues of OC. I found myself imagining what I would say if confronted in the same way. "I had cancer, what's your excuse?"

That might be a good strategy--imagine the worst comment and then come up with a powerful retort. Although, nasty people will never get it anyway. They are wired differently and derive pleasure by exerting cruelty on anyone who is not like them.

Christine, your fighting spirit will get you a long way! We all love you.

Anita

I'm still seething about the parking-lot incident with Christine. He/"it" sounds like a miserable jerk and we can only hope he spends the rest of his life being miserable.
julieann

Some humans are just a waste of space...

Some people just don't know what to say...sometimes they end up saying something horrible. In Christine's case...I just don't know. I'm sure when she was done with him he felt bad....

Angelia...from what I remember you have always dealt with rude people....it was you with the lady at work, right? I'm almost positive that was you:) I was ready to come to your work and tell that woman where to go!!! You be proud of only 15 left....that is a HUGE accomplishment

I think this falls into this category - I found myself speechless at the time but of course thought of a good response driving home afterwards. At the pharmacy window dropping off 4 MORE scripts the other night, the clerk noticed that the scripts were from Siteman Cancer Center and asked me what type of cancer Mike has. Then, she said, "Is it bad?" After a blank stare and a few blink, blinks, I said, "yeah, its pretty bad." In hindsight, what I WISH I'd said was, "Oh no, its a GOOD KIND OF CANCER he has."

In Christine's case - I missed the post but I hope that guy felt bad afterward and hope he learned something.

Shelly

Shelly..that is awful!!! You would think someone who works in a pharmacy would have just a tad of common sense..just a little..that's all we're asking for. If I were you I may even call and register a complait..lol That usually makes me feel better:)

I agree with Suzanne. Go to the top, Pharmacy Manager or similar Big Cheese, and give them the details. You deserve an apology at least!

Anita

I just read ChristineB's blog about the hideous behavior of that terrible old man - wish Christine had had a carload of OC survivors and he would have really gotten a lesson in decency which would have wiped that laugh off his face pronto - esp. if Charm, Eric, David, and a few others were riding with her! To reiterate what others have said: Christine, we love you!

Honestly...what is wrong with people? I was at my doc office (at the CCC) not a family doc. So I'm sitting there trying to read and it was nearly impossible to concentrate. The have been remodeling the hospital that I go to so I guess the people at the desk are getting tired of patients asking them where to go. So....the 2 women who were there start complaing about the patients and then they were cursing!!! Can you believe that?!? When I came out to schedule the MRI the woman was on a personal phone call and said "I have to go. The nurse is standing in front of me with a patient." I felt like saying "I don't mean to trouble you with my CANCER!!!! SO SORRY!!!" But I didn't...lol

Geez, I just remembered this incident. I was going in for my chem and feeleng really sick. I had to make a dash for the men's room down the hall and barely made it before throwing up. I guess it's a thin wall between the men's room and the ladie's and my Linda and her son had already gone in to the chemo suite to get me logged in and told me that a woman had come in all in a huff complaining about the noise of somone throwing up in the men's room. Imagine the nerve of me.

....you go in for PEG procedure, something they've done hundreds of times and the patient is asked "what if something happens during the procedure...do you want to be resuscitated....." needlessly scaring the hell out of you. Advanced Directive (I always keep a copy w/me) in hand and in medical record.

Deejer, aren't humans a strange species? Where did that woman think she was? A spa?

Linda

Sounds like one of the women at the hospital. Martin was just out of his neck dissection in the high dependency ward. The ward had 5 other people all recovering from operations to do with throat cancer. Anyway, this woman in a suit and high heels clumping around noisily, went to the nurses' station after a meeting and said at the top of her "IF I NEVER HEAR ABOUT HEAD AND NECK CANCER AGAIN IT WILL BE ONE TOO MANY TIMES" (the bold is to show the loudness). Everyone on the ward turned around and stared in disbelief. Then she swanned off, before anyone recovered from the shock. I couldn't believe it. I don't know who she was, but she shouldn't be allowed anywherre near a hospital.

SLAP, SLAP, SLAP
is what she needed!
or maybe
PUNCH, PUNCH, PUNCH!!

IF I NEVER HEAR ANOTHER LOUD MOUTHED IDIOT SPOUTING OFF ABOUT CANCER AGAIN IT'LL BE ONE TOO MANY. So there.

I'm not even sure what to say to that. Rude just isn't the word...you almost have to feel bad for someone so ignornat and rude. Almost....I hope she feel in the parking lot in those heels..LOL

That was rude.
I went to my PCP the other day to check in with her. She told me I was lucky as I have had it easy compared to her other patients. I was like O'Really! I did not say this, but I wanted to "Can your other patients still eat? Did they have to do chemo and radiation at the same time?"
Many other cancer patients I have talked to said they would not want to do chemo and rads at the same time and feel that they have it easy. In my opinion no one with cancer has it easy, it is all difficult.

I have to share this web comment from Today's Washington Post.
The advice columnist had a question from a "friend" of a patient suffering from a chronic condition about how upset and disappointed the "friend" was about the patient disregarding alternative cures the "friend" found on the Internet and instead sticking with the doctor and regular medicine. The "friend" is called "LW2" (for letter writer two). I had to laugh out loud when I read this response from a reader (the internal quotes are from LW2's letter)
[quote]
As for LW2, ah, dear LW2: please know that I speak from the experience of someone who ALSO has fibromyalgia (among other things). I do my best to be reasonable and balanced in my posts, here and elsewhere; I may not always succeed, but I do try. So know that I speak from the heart, LW2 From California, when I say that you should be STABBED IN THE THROAT every time you open your mouth to your friend when you give her your UTTERLY IGNORANT "ADVICE". Thank you SO MUCH, Dr. Google, for your assumption that your friend isn't doing EVERYTHING SHE POSSIBLY CAN to manage her condition! No, really, you need to be punched. And "I think she should be more willing to listen to what I've found" - no, you need to be punched AGAIN, you self-satisfied egocentric LUNATIC. "I feel really unappreciated and am starting to wonder if she even wants to feel better." Well, you're partly right; your efforts are TOTALLY unappreciated, because they're ALL ABOUT YOU - but your friend WOULD like to feel better, so why don't you STOP ANNOYING HER, since you KNOW that's what you're doing ("She's gotten really annoyed with me for doing this"), and just SHUT THE FRICK UP ALREADY. You assume because she won't do it YOUR way that she doesn't want to get better? You WHINE that she sees her doctor and takes medication, but brushes YOU off? Way to make a really miserable condition All. About. You.

Shut up, LW2, just SHUT UP ALREADY.[/quote]
And NO, it wasn't me who posted the above reply to LW2
Charm

Oh, forgot to include the link to the original advice column:
Post advice column
Most of the comments are about LW1, but the other ones on LW2 are also good, just not as quotable or as suitable for "Don't you just hate it when" thread (Over 14 Thousand views)
Charm

That was great Charm!!

Shelley

I loved it. Thanks for posting it Charm. We need to post that somewhere like FAQ or Alternative Treatments so people can use it to reply to their friends that come up with these idiotic treatments.

Take care,
Eileen

Uggg....If I could count how many people have told me to take vitamins I'd be counting until I die. And that is going to be a long time from now!!!

oh, didnt u know that apricot seeds can prevent cancer...if u already have cancer---it will get rid of it. i almost lost it.

that was great charm!!! that is how i wanted to respond to the "apricot seed" advice, but in favor of not ending up in the unemployment line...refrained

Add this to the duh? list:
"You are an inspiration."
When a woman I know gushed that out to me I wanted to reply : What does that mean?? I know that I've had cancer and lived to tell about it but I believe that it is a combination of circumstances, not anything that I did. I am fortunate to have had alert doctors, good care and help from Above.

malka,
everyone on here inspires me each day.
i have a friend that tells me each time i talk to her, how huge of an inspiration andy and i are to her...how we are so strong. wow, if she could actually see us, lol, maybe she wouldnt say that. she doesnt see me curled up in a little ball crying my eyes out in desperation or him lashing out because of his condition.
we are on the front lines and actually in the war, they are on the outside looking in. they dont see the battle.

Nobody has told me I'm an inspiration..lol at least not yet!!!

I hear what you're saying Malka but I really hope she was trying to be kind:) I would say "thank you...I inspire myself too"

Malka

Your internal response to being labeled an inspiration seems far too self-deprecating to me. I find the other posters here at OCF to being an inspiration to me even though I don't tell each and every one of them. Which reminds me, I need to end this and post a new reply to Suzanne
Charm

Suzanne

Let me correct a grievous oversight on the part of all your friends, family and fellow OCF members. YOU ARE DEFINITELY AN INSPIRATION
Keep the Faith
Charm

RE being an inspiration: I agree w Theresa that these people just don't understand what really goes on in our war both physically and emotionally for those with OC and for their caregivers and families. I am particularly sorry for the children involved.
I don't feel that being a victim is inspiring.
If we can be an inspiration it is to encourge others to be aware of the causes of OC, to have regular proper dental checkups and not to ignore the symptoms. We can encourage activism in these endeavors and support the OCF in fundraising and publicity campaigns. We can inform others that this is survivable, even the brutal treatments.
Malka

Malka,

I resisted the 'inspiration' and 'courageous' label too, but reread what you said...

...people just don't understand what really goes on in our war both physically and emotionally for those with OC and for their caregivers and families.

Think about that for a second. With all that you've been through and yet, here you are! You didn't give up, you're determined to encourage others and show people that this disease is survivable! If that isn't inspiring, I don't know what it.

Margaret
Courageous and Inspiring Survivor

I loved reading these posts! I wish I had come across it sooner. I got some good laughs out of them, I had to go back and read all 25 pages. No it's late so I will add my two cents at a later time! But thanks Charm for starting this, its been great therapy for me!

i like to refer to andy as a WARRIOR rather than a VICTIM.

Thank you Charm:) I like to be inspiring! What a compliment:)I also like Teresa's Warrior comment...that's a good one!!

Malka

Margaret said it very nicely so I won't repeat her points. While I agree with you that being a victim is not inspirational, I must have missed something in your posts as you don't write or act or sound like a victim.
I think that is exactly why your friend finds you inspirational: despite all you have been through, you carry on. Be kinder to yourself - it's one thing to be stoic, but even the Spartans who are the epitome of Stoicism prided themselves on being inspirational;
In 380 AD, a small Greek army, captained and comprised largely of Spartans and their allies, died defending the Pass at Thermopylae against the vastly superior army of Darius, Great King of Persia, the superpower of the day. I have always it both moving and thought-provoking that Thermopolyae, a defeat to almost the last man, is almost more famous that victories elsewhere these past 2,500 years or so.
The reason is they were warriors not victims despite losing their battle.
Charm

ESikon

Thanks for the compliment. With over 15 thousand views, we must be doing something right on this thread.
Charm

I was just getting fitted for a hearing aid, and the audiologist started trying to tell me all I had to do was drink baking soda and "Cancer can't live".

Flip

Sounds like your audiologist needed to be given a copy of the quote I posted on page 23 about "Dr.Google". That type of comment is exactly why I started this thread.
charm

Well, I have to add a new one: seeing posts on OCF about German cures for tongue cancer by a Doctor whose so called treatment was closed down by the FDA for fraud and then having the poster send me incensed private messages because I called a quack a quack. I can't help but wonder if oral cancer causes brain damage in some people. I'm happy that somebody beat this cancer, but very unhappy to see OCF polluted with bogus cures.
It's unfortunate I wasn't a member of OCF when this clown first posted as I would have shut him down early. Instead, over a thousand posts later from me and under thirty from him
Charm

The victim comment really gets to me. I know your heart Malka, so I know you didn't mean anything offensively however your words are sticking with me and I have to say something.

I am no victim. A victim allows themselves to be victimized and that's not how I roll. I was attacked, ambushed by an enemy and brought to the brink of death. I chose to fight back, to walk through hell to continue being a husband and a father. I lossed my face, my physique, my voice and my career...but I beat this shit and I did it with the most important thing in my life still in tact, my family. Is that a victim? No that's a warrior.

I never even considered the term victim until I saw this post. Never even crossed my mind that I was a victim. Sh*t happens and you deal with it. Life is a collection of good and bad things that happen to us. I was down in the mouth for a while but never a victim.

Kelly

Carol is not a victim. She is a warrior, a fighter, not to be taken down by something she can't see, feel or touch. Cancer is not a religious sacrifice, no one is conned, cajoled, and neither an accident, result of war or of the "system". These are all done by "man" - the human race. One of the online dictionaries says as part of its definition of victim "one that is injured, destroyed, or sacrificed under any of various conditions <a victim of cancer> <a victim of the auto crash> <a murder victim>". I disagree. Cancer can not be put into the same category as the accident or murder because the acts were caused by another human. Not the car, not the gun. No one said Gee I haven't had cancer before, I wonder what it's like.!!! Carol is a "victim" of the "system" because she has cancer. Just my 2 cents.

While I agree wholeheartedly with EricS and its as though he read my mind & heart and wrote it out, I also want to say something to Malka: these posts are supportive of your status as inspiration not accusations that you see yourself as a victim.
I know it's ironic for me to worry about hurting people's feelings with posts since I often do it, (but hey I've been cranky lately as my last two MRI's were cancelled due to snow and now tomorrow's is still on, but it looks like a tough commute back from it with more snow on the way and I'm sick of shoveling)but feelings can and do run very high on the issue of victim vs patient vs warrior.
so thanks for that post Malka as it has elicited very comforting posts of solidarity in my self view also. (plus it let me belatedly point out to Suzanne that she is an inspiration.)
Charm

Oh Charm...stop..I'm blushing...lol

I sure hope you can get the MRI and get home safe and sound!!

Good luck, Charm, and careful on those roads.

Don't say victim. say I am going survive a hand I was dealt. Something like getting dealt 2 Aces of Spades in a hot poker game. You have to redeal the cards and go for the pot.

EzJim

Well back in my hippie days, I always did go for the pot
Although in keeping with this recent subject of Victim:
I do feel victimized by the radiologist community. As I wrote a note to the MRI reviewer yesterday, it refreshed my memory how cavalier and frustrating radiologists are in tossing out phrases like : "Metastasis cannot be ruled out" or "Enhancement may reflect a tumor" - both actual quotes from prior MRIs at Georgetown Hospital Lombardi Cancer Center ( a CCC). It is so alarming to read that and hard to fathom how my radiation oconologist and my tumor board and my ENT can all affirmatively state to me that they see no indication of a tumor after they review the exact same MRI.
This time I reviewed the three places that had given me MRI's (Georgetown, Washington Radiology & Diagnostic Health) and went back to Diagnostic Health based on their much more extensive written report and past accuracy. Voting with my wallet.
Now the waiting begins - I see my ENT a week from tomorrow.
And don't you just hate that period of uncertainty ?
Charm

My comments made were not against Malka and her beliefs and/or thought processes. "Victim" is just another word that gets under the skin depending on the circumstances, ie oral cancer, as this is what this site is about...along with politics, money, religion. And a quad zillion other words and topics people may or may not agree with. The word "victim" caught me way off guard. Nothing even remotely I would consider Carol. I may be going on the defensive but I have utmost respect for everyone that has to fight. Playing defense has won games after all....

Linda

Linda

Did not mean to imply you did direct those comments at Malka. Lately some posters here have been so sensitive about imagined slights that I wanted to make clear what you just said.
charm

Wow - sorry to get everyone riled up. I take no offense at anything which has been said in reaction to my posts. Thanks to my defenders. I did not make myself very clear.

In my first post I was upset that the person seemed to be equating my surviving 3 cancers(thank G-d it should be permanent) with being something I have done.

In my second post I meant the word victim in the absolute sense of one who is adversly affected by something. This is neither positive nor negative(remember those old math classes?). A victim is not defined by the reaction or outcome but by the event.

If a piano falls on your head you are the victim of someone's carelessness, an occurance above, someone intentionally dropping it on you, maybe not looking where you were going and tripping over your own feet, your own stupidity for standing under the thing as it is being lowered or maybe you are Joe Blflspk (any Dick tracey fans: is that the correct spelling?).

Malka

While I am still waiting for my wristwatch radio, I think you meant the Little Abner character, [quote]Joe Btfsplk: World's most loving friend and worst jinx who always travels with a dark cloud over his head.[/quote]
Charm

Charm, You're right.
I didn't have chemo so I can't blame that mixup on chemo brain, I'll just have to admit to old fogey foggy brain.
You young kids will just have to google those old comic strips to see what you missed. They sure beat Brewster Rocket.

I know we're going a bit off subject here but, speaking of old comic strips, there's a raging controversy in the local daily about keeping "Beetle Bailey". Someone wrote in and said "everyone who ever liked Beetle Bailey is dead by now". I beg your pardon!

Well, this certainly can be on topic: don't you just hate it when us AARP CERTIFIED ADULTS (50 plus) are written off? All the TV reviews and ratings explictly focus on the 18 to 45 crowd and now the comic pages? Showing just how old I am, don't you just hate the new artist/inker on Judge Parker? I know it's a temporary fill in due to illness, but it's terrible.
Charm

after reading a certain post on facebook today, i was visibly shaken at the responses of a person that has not dealt with cancer. i guess until i actually saw that today, i didnt really realize that unless u are a ORAL cancer patient or caregiver--u DO NOT have any clue about the true effects of this beast.

eric, i truly thought there was going to be a cyber-fight, and i wanted u to know---i had ur back

Speaking of facebook. One of my so called friends decided to delete me and then post on her wall how I was full of self pity because Steve had cancer. All because I told her I thought people should donate to fund raising if they really cared about curing cancer. She hasn't seen me at all for the 10 months since Steve was diagnosed and has no idea of how we cope day to day with what Steve's been through. If there's one thing I'm not, it's full of self pity. S**t happens and it just so happened that cancer decided to pick on us, along with millions of other people. We deal with it the best we can and always stay positive. God forbid she ever has to go through something like this and needless to say that friendship will never, ever return.

wendy, there never was a TRUE friendship. this will help you to delete your "so called" friends and will leave you with true friends. that was an awful thing to do. my heart goes out to you.

Wendy, my mouth just dropped open at your post. I think the old phrase "with friends like that who needs enemies" was written for insensitive people like that. Sorry you have to deal with that. UGH.

Wendy you have so many real friends and this is not one of them.
Try to forget about her as she is not worth having you as a friend

Yep that never was a friend. Some people are just inconvenienced when you have cancer....!?

sorry to hear this

M

Teresa,

To explain that post on Facebook. After seeing his second response I knew the "type" I was speaking with and decided to have a little fun with him and emailed Roy to 1) apologize and 2) explain to him that I was having fun at that point.

After getting Roy's blessing to keep messing with the guy it was my goal to drive him into a frenzy being as sarcastic as possible without taking off the "protective gloves". I feel a little guilty about it but I was laughing so hard and having so much fun with it I couldn't stop. I can get really nasty however and have been known to insight violence with how biting I can be, but was trying not to be too offensive and refrained from getting personal.

I had a good laugh with Roy and Laurie about it afterwards...they knew it was all in good fun and that was the important part. From what they tell me Mr. Vetters is really a nice guy...

Anyway I hope I didn't offend anyone who witnessed it and felt I at least owed an explanation.

Well i for one didn't appreciate "Mr Vetters" sense of humour Eric.I thought Roys post was a genuine question and stupidly gave what i thought was a helpful reply.I deleted Roy from my friends page and will think twice before bothering to reply to what i perceived to be someone who is hurting. The comments he made about me having no right to shorten his name just stunned me,but i guess my sense of humour is a little blunted when it comes to OC.Glad you enjoyed it sweetie.

No comment except I luv ya Liz and keep up the good work you do for us. I look forward to your posts as I do many others on here.

Liz,

Roy had nothing to do with Mr. Vetters response, he just let me know it wouldn't offend him if I mocked Mr. Vetters. The reason I even went there was mostly because of his responses to you.

With people like him, they can't see past their own opinion and you can't explain anything or hope for reason...so instead of arguing with them (as nobody wins an argument and it's pointless to try especially with people like that) you either stop responding or you mock them and hopefully let them see how ridiculous they are.

Roy and Laurie are genuine people and shouldn't be held responsible for the remarks of those they know. I love you Liz, you know that, and any sensible person would've listened to what you said.

Love you too babe xxxxx
I just deleted Roy so that man couldn't see my profile or make any more contact.I will follow Roys progress here.

Unbelievable! I have a friend who was diagnosed with triple negative breast cancer, and when the doctor told her, she started to cry a little bit. The dr. looked at her and said sarcastically, "now we're not going to have a pity part for Connie, are we?" Talk about lack of a bedside manner! Needlessto say, Connie is seeing another Dr!

Liz and Eric.

Don't know how I missed that whole thing as I'm on FB way too much. But, Liz I'm sorry that you, one of the sweetest, most caring people I know, would be hurt so much by someone's stupid remarks.

And Eric, you beinng SARCASTIC, I can't believe you would be capable of that!!!!

Now I have to go find that FB post.

Boy am I glad I was away skiing on Fiday. I just read the whole post on FB (minus Liz's, as hers were deleted). I got the gist of what you posted Liz and MR Vetters' responses (the MR is for you, Er) and I agree that he is a jerk. Eric, I believe you rightly put him in his place, but to no avail. A person like that will never listen to ANYONE else as he is closed minded.

I was tempted to post something, but since it's Sunday and things died down on Friday, I chose not to do so.

My 2 cents worth...I was going to wade in around comment number 9 (in support of Eric and Liz) but then it grew to 39.
The whole religious tone, not to mention all the rest of Mr Kev's posts stopped me. Besides it took a great chunk out of my day to read it but it got compulsive

Ah, yet another reason I'm glad I am a Facebook objector. I can get into quite enough trouble right here on OCF.
But keeping this thread right on point ( after 28 pages and over 16 thousand views), here is an excerpt from the OCF News feed on the Esquire article on film critic Robert Ebert that deals with how he was treated at a reception or rather how he was patronized.
[quote]they don't know even half of what it's taken him just to get into the room, just to be here tonight, but there's something sad about the wet-eyed recognition, too. He's confronted by elegies everywhere he goes. People take longer to say goodbye to him than they used to. They fuss over him, and they linger around him, and they talk slowly to him. One woman at the party even writes him a note in his notepad, and Ebert has to point to his ears and roll his eyes. He would love nothing more than to be holding court in a corner of the room, telling stories about Lee Marvin and Robert Mitchum and Russ Meyer (who came to the Eberts' wedding accompanied by Melissa Mounds). Instead he's propped on a chair in the middle of the room like a swami, smiling and nodding and trying not to flinch when people pat him on the shoulder.[/quote]

Don't you just hate it when people talk sloooww to you now, like you had brain cancer instead of oral cancer? Or like it was your ears and not your tongue, tonsil or jaw that had the cancer? Yeah, we may eat slow (or not at all) or talk slow but we still think at the same speed.
charm

eric,
i was definately not offended by any of YOUR comments. i was offended by MR vetters, it wasnt his place to question liz's response to roy. he doesnt have a clue. i showed andy the whole "book" and we both got a huge laugh out of it.

when....you see the Doctor and are busy spending the week celebrating an "all clear for now", and within ONE WEEK you find a new lump/bump in your neck. You are then forced to either live with it until the next appointment (mid April) or become a pain in the rear by going back to see a doctor you saw just a few days ago...........HATE THIS, HATE THIS, HATE THIS.............

Saw this in an article in the Washington Post and immediately remembered the same thing happening to me:
[quote]as she ticks off a few of the things she's had to deal with: those cloying people who never tire of leaning in close and whispering How ARE you doing? in a manner that is the exclusive province of those who have never suffered grief[/quote].
It was an into to an article about [quote]the past two years, Ann Norton has lost -- in no particular order -- her husband, her father, her dog, her breasts and, very nearly, her theater company[/quote]
Finally, this seemed applicable to many of us OCF members also
[quote]Norton, the 56-year-old executive director of the Washington Stage Guild, knows that hers is a tale too melodramatic to ever actually play on the stage, however. Besides, a play involves conflict, "and there's really been no conflict in all this," she says. "There's just been dealing with this.[/quote]"
charm

Donna, definately be a pain in the rear. No sense letting it bother you all that time. And I hate it when I get a clear PET but it is noted that there is "activity" in the lymph nodes.

How is it a clear PET with activity in the lymph nodes?

Exactly the question.

Just reviewing belatedly the changes to my Federal Blue Cross/Blue Shield insurance and this one is a doozy:
effective jan 1, 2010, all IMRT outpatient TX must receive PRIOR approval. The explanation is that BC/BS FEP needs to be sure that IMRT TX is medically necessary. I find it hard to believe that anyone is getting IMRT as a lark or as a cosmetic or dietary measure. Previously you never needed advance or prior approval, just a radiation oncologist order. One more insult and indignity for oral cancer patients and at a minimum, needless delay. Glad my IMRT and Cyberknife TX were in 2007 and 2009 before this policy change.
Charm

hmmm....so if the insurance deems it medically unnecessary and won't pay, and the patient passes on...has the insurance company become a death panel?

Is that JUST IMRT or is it all radiation therapy, XRT, tomo, etc.?
Eileen

My insurance won't say ahead of time if they'll cover my PET scans so I just have to have it done and HOPE they will or I'm out $5000.00. And you're absolutely right Eric, we already have death panels.

While I'm on here, this doesn't really rise to the "don't you just hate it" level as I really wasn't offended but it just shows how little people understand the long lasting effects of oral cancer. Last week the dispatcher at work asked if I could work on my day off but I told her I had to have bloodwork done, an xray and a visit with my oncologist. She asked "why are you still doing all that, aren't you all better?". As I say, not offensive, just an honest question from her to fill in a gap in her knowledge.

Why does the waitress feel the need to be overly solicitous and VERY LOUD when Clark orders our lunch? He is NOT DEAF, you loon! She might have said "THERE'S SOMETHING WRONG WITH THIS GUY'S FACE" so that the other patrons could get a good look. I wanted to slap her face.

I had forgotten this incident that happened at a family gathering the summer following my husband's cancer surgery. A cousin (not mine) approached Clark and after they said hello to each other, the cousin says, "Did you have a stroke or something?"

This was almost 2 years ago but the pain inflicted is still raw. My husband is still concerned that this is how others see him. We are blindsided by comments like this. I promised myself that when I hear an insensitive remark, I am going to confront the person by asking why he/she would say something so insensitive and cruel. Or maybe I'll just opt for a good slap in the face. Either way, it will NOT go unnoticed.

I feeling pretty tough. Bring it on.

I really just hate it when people talk slower to me because they think I must have a mental handicap to go along with my facial disfigurement.

Or when we are having a discussion on healthcare and they begin with "I just hate that you got cancer Eric but..." like that somehow makes up for the ignorant statement they are about to make.

Next time that happens tell them u are so sorry about their speach impediment. if they ask what u mean. Tell them, well u speak so slow.

Anita

I hear you loud and clear. I've always lived by the motto that the best defense is a good offense and since the scenario you described is so commonplace and happens so often, I make a point of working into such new meetings that as a result of the cancer surgery, I sound like Dick Clark on the New Year's eve TV shows. People are going to be curious and as you have found out, some are also stupid and thoughtless. And while you can slap someone silly, you can't slap them smart.
Charm

Charm,

Nice strategy, thanks!

Anita

My husband always says "you can't fix stupid" always makes me laugh...

There is a 2006 movie called Idiocracy that pretty well explains why there seem to be more and more stupid people in the world. You only need to watch the first 5-10 minutes after that the movie is too stupid to watch.

Seda

I actually saw that movie on Comedy Central back in 2009 when it finally was released to basic cable (before that you had to buy the DVD or else pay for Cinemax or HBO to see it).
I much preferred the way the same theme of Dysgenics was made funny in The Marching Morons by Cyril Kornbluth back in the 50s (I was reading such sci-fi stories from kindergarten onwards)
But the premise remains perfect for this thread:
don't you just hate it when there are more and more stupid people every day ?
Thanks for bringing back a great memory of childhood
Charm

I recently saw a post on Facebook of a Mark Twain quote (sorry, I know it was someone from OCF posted it but I don't remember who). anyway it was "It ain't that there's too many fools, it's that the lightning ain't properly distributed." Well, that may have been true in Mark Twain's day when the population was much smaller but today there are way too many fools and not enough lightning no matter how you distribute it. (I have GOT to get off driving the bus route from Chico to Oroville ["Horrorville"]. I'm really losing faith in humanity)

Here is what I heard frm my MO today. "You know that a clear PET scan doesn't mean the cancer is all gone don't you?" You give me good news and then you throw that out there. What is up with that?

Angelia:

That sucks I would ignore that statement and celebrate a clear PET scan. I have been told that PET scans are accurate and I certainly believe in them. So, be happy CONGRATULATIONS!
julieann

Angelia, you enjoy that news that your pet is clear, I am still waiting to hear about mine.....happpy for you! Carol

Angelia

Sounds like your Doctor had just been counseled by his medical malpractice insurance company . It is a terrible bedside manner but technically correct as unfortunately I can attest. It will be three years in August that they found my cancer on a CT scan and over a year since the last surgery and the best I can get from the Doctors is NED (no evidence of disease). But your news is GOOD and it's too bad your doctor had to ruin the moment.
I agree that you should celebrate radiological evidence of NED . And next time you see that doctor after a PET be prepared to ask him: "But the PET does show NED, doesn't it?" if you want a positive response from him
Congratulations
Charm

Okay, I know it's petty to be jealous of all the attention given to Prostate Cancer. It's just that even though the best therapy is to "Watch & Wait" for the majority of men, major research bucks and attention all go to it. Not to mention the thousands of unnecessary surgeries & radiation TXs that end up raising our insurance rates. So now I read it the Post that the FDA has approved a Vaccine for Prostate Cancer - Yep okay for humans and ready to roll. Why oh Why can't oral cancer get the attention it deserves. Here's the Post article
FDA approves cancer vaccine

I love when someone asks (practically yells), "Hey how's your tongue? Can I see it?" They ask like I just ate a blue popsicle and want to see what color my tongue turned. These are usually people that don't know me very well.

In all fairness, before I got cancer, I had no idea what to say to people who had cancer. I just enjoy when people treat me like a normal person. I'm happy when people ask me about it in a respectful, quiet manner. I would rather that than be the elephant in the room.

I love this forum! It made me laugh:)

Ashley

I'm very glad this thread brought you a smile. We try to keep our sense of humor here. With thirty one pages of posts, it may be one of the longest threads here. I'm convinced its posts like yours with the blue popsicle simile that have kept everyone coming back to rack up over 23 thousand views.
My only regret is that we keep getting new members like yourself -funny and witty and far too young. Looking forward to hearing about your recovery and moving on in life.
Charm

Back to a major theme in this thread: UNSOLICITED CURATIVE ADVICE from Well Meaning people. Here is an article in today's Washington Post on that same issue but from a non cancer perspective. Amazing how similar though her feelings are to what I experience. Here's the full article:
I know you mean well but
Two excerpts for those who don't want to read the full article
[quote]From checkout clerks to dear friends, it seems everybody's trying to fix me. I feel like Humpty Dumpty on a daily basis, trudging from doctor to pharmacy, and in between all the king's horses, men and women try to put me back together.[/quote]
[quote]People are trying to relate, but they are relating out of fear. I think this is why the community's love can sometimes feel suffocating. While well intentioned, the intervention of friends and strangers can sometimes feel like it has more to do with them than with me.[/quote]
Charm

Great piece, Charm. Thank you so much for sharing it.

- Margaret

I came across this column on AARP online about those of us with a chronic condition
[quote]I stumble upon the website during an idle Google search. It is devoted to the day-to-day struggles of folks with chronic illness. The title, "But You Look So Good," is sarcastically scrawled in a messy hand across the top of the page. I smile. For many of us, that tongue-in-cheek sentiment is all too familiar, the meaning clear: really, you cannot look that good and be so sick...I have grown weary of people�some strangers, generally well intentioned�telling me how good I look. That same thing often happens to me. "What did you expect?" I sometimes respond if I know the person. "A cadaver?" [/quote]

One of Jim's former coworkers/friends came by to visit him about a week after he finished his treatments. Jim felt horrible and looked even worse but wanted to be courteous and visit with the friend. Maybe the conversation was lagging but the friend tells us how many funerals he'd gone to lately. Oh really? we ask. Yes, the first one was a friend who had been battling cancer for a while, then BAM it comes back and he goes quick. The second was a relative who was just "eat up with it."

I just wanted to cover my ears and Jim's too. Ugh, some people just don't think!

So sorry! JEEZ people can be so insensitive. I bet her was just nervous. Sometimes when people get nervous they say exactly the wrong thing.

Its like when someone laughs during a funeral...know what I'm talking about?

No excuse though, but I think that's what happened. Sometimes its just better not to be chatty... especially if you are going to blab away about something completley inappropriate and upsetting to the person but some people dont' get it!

Lets hope that your husband's friend had good intentions. I"m sure that he did. People just don't know how to handle themselves sometimes during emotionaly intense moments. I'm sure he was a good dear friend with only the best wishes for Jim and for you.Certainly wasn't anything either of you needed to hear.

A similar thing happened to us but since the RO had just bumped up my fentanyl patch plus I had popped some oxycodone, it struck me as amusing. The look on my visitor's face when I asked "So, I can count on you then to come to my funeral?" was priceless.

Don't forget, my cancer came back in a year, but I have not gone anywhere, quick or slow, and am still here. No reason this won't just be a fading memory years from now. Of course your story illustrates exactly why this thread was started. People just don't know what to say or do when they meet a cancer patient in real life instead of seeing one on a TV drama show.
Charm

I introduced myself 3 days ago (thank you Gabe for telling me about this site) and of course have been reading the posts ever since. This is the one I keep returning to. I cringe when I think of my own behaviour a mere few months ago but generally this thread lifts my spirits and gives me a laugh. Whilst I haven't had as many experiences as many others here, as Alex's carer, there are some gems coming my way already.

Things MY Mother says
"You must be so stressed" - well yes, but I'll have my nervous breakdown later when Alex is through his treatment thanks
Things HIS Mother says
"How about I come over and stay with you?" we love her but, NO
Things I say to Alex
"Look on the bright side" when his head is hanging off the end of the bed and getting up to go to the bathroom requires planning
"What flavour yoghurt do you want?" - like asking a blind man what colour he wants his house painted. Duh!
Things well meaning colleagues say
"Fatigue? At least he can sleep all day - he doesn't have to work or anything does he?"

and finally harping back to one of the original posts from well meaning friends - not "how aaarre you?" thrown out to you survivors, but "how are yoouuu?" asked of us carers - surely they don't know what they are asking and don't realise the English language doesn't have the words.

Now onto the thread about things I love ...

When Parade Magazine [the defacto national Sunday newspaper magazine, distributed in more than 400 newspapers and he most widely read magazine in the U.S., Parade has a circulation of 32 million and a readership of 71 million]runs a special issue devoted solely to "Cancer in America" WITH NOT ONE WORD IN THE ARTICLES ABOUT ORAL CANCER OR OC PATIENTS.
The only mention at all is indirect in the report that "the deadliest cancers don't get the most funding" which lists "esophagus" cancer as on of the top ten cancer killers in 2000 with the lowest funding and that NCI doesn't get many research proposals for head and neck cancers
You would think that the major discovery of HPV causing head and neck cancer would have merited one sentence.
Charm

Hey Charm,
I so totally! My husband gets so mad at all the "Breast Cancer Awarness" commercials and walks etc. He said one day after seeing a commercial for the "3 day walk for Susn B Colman, Breast Cancer" What about all cancer, what about my wife, what about all the kids. I just don't see how people can do all this stuff fow a specific type of cancer when so many people are dying from many, many types of cancer. I just don't get it.

Grrrrr!

Wendy

I know. I don't want to knock those who support the breast cancer awareness cause. I think that part of it is that at one time oral cancer was linked to "bad habits" primarily. But there are a growing number of us who never smoked in our lives, were light drinkers (if any) and the HPV test was negative, but we got it anyway!

I am sorry, I guess I didn't mean to knock anyone that supports any type of cancer. I'ts just hard to watch all that support, (especially for my DH & 14 year old son) when your feeling so all alone and afraid your going to lose the one you love, or your own life. Then you see commercial after commerical about breast cancer awarness. How about just "Cancer awarness" breast, prostrate, cervical, liver, lung, throat, tongue, brain, you name it millions are being affected by it.

It is hard to see Lance Armstrong's grinning face when the daily side effects of our TX are so different than his experience. For men, Prostate Cancer is all the public knows and for women, Breast Cancer. Or at least it does seem like that to me. Of course I was just as clueless and had never heard of tongue cancer let alone imagined I could get it.
It was good to see some public attention with Roger Ebert but let's face it, radiation, chemo and surgery to the head and neck are not really traditional beauty methods nor likely to yield poster child looks.
It's okay to vent here about the unfairness of cancer research and public knowledge.
charm

ARRGH - there is a brand new Cancer TV show on Showtime
Why do I hate this?
I: It's not a show about me and my cancer
II: It even sounds like me in the Washington Post review
[quote]A darkly comical and affirming antidote to te pink-ribbon and yellow bracelet platitudes that have defined the modern cancer experience[/quote]
III (okay really more of one and two but since I'm using Roman numerals, it's okay
Even the headline should have been about me
[quote]Showtime series adds a layer of snark to the obligatory upbeat cancer message[/quote]
IV: We gave up Showtime and other premium cable channels in order to pay the co-insurance on the cancer medical bills

Guess I'll just have to wait for the Season DVD to come out and get it at Redbox for a buck
Charm

Well said! Who really wants to watch a show about some actress playing a woman with cancer when we can get the real stories here. Think about it. If we turned this whole OCF forum into a series, most of it would be edited out because it wouldn't be pretty enough for the general public. People on the outside don't really want to know about cancer. So this show will give them reason to have their curiosity satisfied. But it won't be real. Smoke and mirrors.

Anita

Yeah, that's the ticket sister. We at OCF should be on a Reality show. Maybe MTV would do a "Cancer shore" show (I just visited Seaside Heights and was shooed away by the police when I dared to look into a photo booth where the Situation was burning the instant picture with a lighter.) All we need is for Brian to rent a house
Charm

I watched part of it ... but had to turn it off I normailly like Laura Linney.
Not sure about that one! Yes I agree. There is some sort of odd glorification of the popular cancers... its strange.

I had a pre-conference today at school for when I am observed. My assistant principal asked how thigns were going and then mentioned that last year I had no patience when I came back in March. He said he did not talk to me about it because he could not imagine what I had gone through. Hello, how can I correct something if I do not know I am doing wrong? I told him he needs to come to me anytime he see a problem. I want to learn. I hate when people are afraid to come to me and tell me something I need to correct because they are concerned about putting more pressure on me. UGH

I love this "Don't you just hate it when...? thread. My son used to just hate when people said to him, "Well, it could be worse". Which reminds me of a little story from a church bulletin a long time ago: "I was walking out of church one day, depressed and feeling sad and lonely - when suddenly a voice came to me and said: "Cheer up, things could be worse!". And so I did - I cheered up - and sure enough things got worse!" My son got better and is a lot cheerier, now.

There was a woman in my dog club who kept comparing the surgery she had on her gums to my cancer and partial glossectomy-but the thing that really did me in, was the time she cornered me (I was still healing from surgery) opened up her mouth and tried to make me look at how bad her incision was....

Anne Marie

With over 35 thousand views, this is indeed a much loved thread.
Your son sounds so positive and upbeat. It's much easier for an old guy like me to deal with this cancer and it's a tribute to your mother skills that he copes so well. I'm with him a 100% on hating the trite: could be worse but instead of your funny church story, my tired old cynical self just nods when I hear it and I say: Oh, did you mean, it could have happened to you ?.
Good thing I set 2017 as my goal to be charming
Charm

Michelle

Incredible. But you probably are so strong and brave about it all that she just minimizes it because it would have killed her
Charm

Thanks Charm--but I think it was just because she is so clueless... LOL It got to the point where I just laughed because it was so completly ridiculous!

I have some good ones regarding my MS also--when I had to go on partial disability because I couldn't work full days anymore, I worked half days. Without fail, someone would always say in the elevater when I was leaving "you are so lucky that you only have to work a half day" and I used to tell them--"hey, all you have to do is get a debilating illness and you can work half days too-Wanna switch?"

I had a friend who had bladder cancer and had to have her bladder along with all organs that could be removed taken out --but no chemo. When she healed enouph to return to some activities a "gentleman" in the same dog club walked in, saw her and said "Oh hi, welcome back--you have all of your hair, I was expecting you to be bald" That was so shocking, that even I had nothing to say....

This is why I prefer my pets - Jake and Elwood. They never ever say the wrong thing at the wrong time.

My best friend asked me, "Hey, Barb, cat got your tongue?" I laughed til I cried, then laughed some more.

My brother listened while I explained about the skin graft taken from my leg, and he finally said, "So I guess after this, you'll be running at the mouth."

I know, my humor's a little on the crude side, but, sometimes, ya gotta laugh to keep from crying.

So I called my mom and told her that it was not a lymph, but just a rock hard muscle. She said, "How do they know for sure? Are they going to do anymore testing to make sure?" I then replied, "My ENT was very thorough and spent ten minutes trying to find a lymph node, and all he could feel was a rock hard muscle." She then replied, "Well, how does he know for sure without doing some sort of scan?" Nothing like putting a damper on the shear excitment I had to know it was not a recurrence and just side effect from treatment. I can handle some fibrosis.

[quote=walknlite]So I called my mom and told her that it was not a lymph, but just a rock hard muscle. She said, "How do they know for sure? Are they going to do anymore testing to make sure?" I then replied, "My ENT was very thorough and spent ten minutes trying to find a lymph node, and all he could feel was a rock hard muscle." She then replied, "Well, how does he know for sure without doing some sort of scan?" Nothing like putting a damper on the shear excitment I had to know it was not a recurrence and just side effect from treatment. I can handle some fibrosis. [/quote]

[quote=beeboppin5]My best friend asked me, "Hey, Barb, cat got your tongue?" I laughed til I cried, then laughed some more.

My brother listened while I explained about the skin graft taken from my leg, and he finally said, "So I guess after this, you'll be running at the mouth."

I know, my humor's a little on the crude side, but, sometimes, ya gotta laugh to keep from crying.

[/quote] LOL

I just got a facebook message from a friend of mine who, after hearing I had just gone to Vegas, said, "Glad to hear you're on the recovery side of cancer. Are you done with everything now?" lol - yeah, I'm done with cancer now - been there, done that!! I just had another biopsy last week, but thank goodness it was just scar tissue. Another chunk out of my tongue though and another month of soft foods only. I don't think we're ever "done with everything" are we??

Bloop:
One thing I know is that I NEVER stop worrying; anytime something new pops us, I panic. Then I go nuts waiting for results. It does seem to never end. I know I should be thankful that I am alive, and I am, but it's so hard to just forget the past and go into the future. I'm very happy that your test results were good.
julieann

A few weeks ago, a very good friend came and stayed with us for the night. Instead of cooking, we went out to a wonderful Italian restaurant. The place is small and the tables fairly close. We rarely go out for dinner and pasta is one of the foods Clark can eat.

As soon as we started walking to our table, this young child (6) asks very loudly, "What's wrong with that man's face?" As luck would have it, we are seated next to this child and his family. We ignored him for a while until I couldn't stand it any longer. I leaned over, tapped him on the shoulder and said, "That is a skin graft on his face."

That kid didn't have a clue what I was talking about but his parents surely did. The brat continued to ask again and again and his parents said nothing to him. I was tempted to lean over one last time and say to the parents, "Be a parent and tell your kid to shut the f#@* up!"

I ignored him and he eventually stopped.

OMG - the parents need parenting classes. The kid was just being a curious kid.

My own sister, when I said I wonder what people are gonna think when they see me, that I've been in a boxing match with Tyson or something. And she said, "Oh they'll just think you had a stroke." lol, thanks a lot.

My husband's cousin said the same thing! Actually it was, "did you have a stroke or something?"

We had our Oral Cancer walk today. Someone wanted to know my story so I sat down and told her. She then said she wanted to aska personal question. She prefaced by saying that since I did not msoke, drink, or have HPV and was so young, "was there a relationship with this cancer and my weight?" I was really offended by that comment. I did not let it show because she drove three hours to come to the walk, her daughter is a student of the OU dental hygiene clinic that helped organize the walk. It sure made me angry that someone could even bring up weight into the picture.

Angelia, you handled that with grace! Good for you. She was insensitive and ignorant. Next time someone offends you, throw it back to them by asking, "why do you ask that? Have you done any clinical research on the relationship of (weight) and OC?"

When people on the street ask how I am, I always smile my now crooked smile and always say " I am fine thank you, for what I have I am doing very well...how are you?" I find it puts people at ease and they can either escape easily or stay to chat.

Angelia good for you, that was handled with grace as Anita said. Some people are clods.

I want to point out that the ignorance does apply to other conditions. My step son is 42 and has had type 1 diabetes (juvenile onset) since he was 9. He works out and eats carefully, aside from the occasional junk food which he has to pay for by taking more insulin, and even though there's hardly an ounce of fat on his body people are constantly thinking that his lifestyle somehow caused his diabetes. He gets very upset about that. It's type 2 diabetes that is associated with lifestyle. No one knows the exact cause of type 1. But then of course people assume that my lifestyle caused my cancer, and maybe that's true, though I quit smoking 22 years ago and have been a light drinker for quite a few years. I can't remember the last time I was actually drunk but it's been years. But if you have one of these diseases, why, you just must have done something to bring it upon yourself, right?

I just had a conversation about cancer with my sister, who is a Nurse Practitioner. She has been in the oncology arena for quite a while. The bottom line is that we can do everything right and still get cancer. The misconception among many people is that those who have or had cancer must have done something to get it, like eat the wrong foods, not flossing, too much stress, etc (the list goes on). While many behaviors have risks associated with disease, and there are other behaviors that have benefits associated with health and vitality. Anyone can get cancer.

It's a challenge for anyone with a serious health issue to answer probing questions by the curious regarding lifestyle choices. A strategy that works for me is to refer the questioner (especially if it is not a family member or close friend) to this website for OC, as well as other respected sites for more information (NIH, ACS, etc). "If you are really interested in this disease then I encourage you to go to (OCF, NIH, ACS) to research more on this because you really don't know what you're talking about."

When others overstep that boundary and their questions or comments make you feel bad, angry, hurt, or misunderstood, empower yourself to take a stand.

How about this one....A coworker tole me that if I had gone to church every Sunday and knew Jesus I wouldnt have cancer! Who knew?

Plantgirl

I'm pretty sure your co-worker wasn't Catholic. We even have Patron Saints of Cancer, like St. Aldequndis, the Patron Saint of Breast Cancer who died of that cancer. (I first learned of her at a Komen Walk for the Cure blog) The Catholic party line is that the Saints certainly knew Jesus. Plus we have a generic Patron Saint of Cancer: St. Peregrine Laziosi
Finally, I know I'm wicked but I would share this video with your co worker. It's from CNN about an oral cancer patient who saw Jesus in her MRI. And I'd tell the co worker that Jesus was in my MRI also which means you plantgirl will be taken up in the rapture and your co worker is going straight to hell.
JESUS in my MRI

Keep the Faith
Charm

PLantgirl, that is awful. I got to church every Sunday and am a Believer and I still got cancer. He is the one who helped me through it.

I think that statement speaks to the stupidity of the person that said it plant girl. It assumes that some people have a supreme beings love and protection and others do not. That God exists in your acts, and not in your heart.

I am not going to go into my personal belief systems, and I urge others here not to as well. Religion on these boards has historically brought out the worst in people, not the best... isn't that a dichotomy. The worst in the early years was a woman that was loosing her husband to the disease. She and he were practicing Buddhists. Some "pious, good" Christians on this board went for the throat in a very unChristian way, with comments similar, like it was for their lack of belief in Jesus etc. that they were where they are, and it was stated with so much conviction and self righteousness that that it broke their hearts and mine as well. We immediately changed the rules of the board as a result. These boards are for all, believers (no matter in what), and non believers.

We keep religion off the boards for a reason. There are plenty of other forums on other sites to discuss it.

Amen, Brian!

My next door neighbor who is way way more into religion that I am held weekly prayer meetings at her house during my entire Tx. Always invited me but I never felt comfortable going but bottom line, to this day, she swears they made the difference in my outcome. Who knows??? But to suggest that because you weren't very religious and are somehow being punished is downright ignorant and ranks right up there with the followers of Jim Jones.

Thanks Brian for keeping this an true ecumenical board. As a former seminarian, I still hold deep religious convictions but heartily agree that OCF is not the forum to expand upon them. I get angry when I hear remarks like that made to Plantgirl although I should try to be more charitable and assume that the speaker never got around to reading the Book of Job in the Bible.
Charm

Sorry, I was just trying to make a point that anyone get this horrid disease. I will no longer bring my beliefs in this board, even though they are the most important part of my life.

Walknlite - nothing to apologize for. There are just so many new people here, and it seems that no one really reads the rules of the board when they sign in, that I put that comment up there to speak to plantgirl, and as a reminder of why we have the policy for the boards. Strong spiritual beliefs help many people, but when they are used to tell someone that because you didn't do this or that, or believe like me, that you ended up with this dreaded disease, it is just wrong on so many levels.

OMG, Plantgirl, that's awful!

I certainly believe in the power of prayer, but it also bothers me when people say it saved them. When my mother was diagnosed with ovarian cancer, no one could have been prayed for more than she, but she died anyway. I guess I feel that whatever faith you have (in whatever higher power you believe) will help you get through rough times, but not necessarily "cure" you.

When you realize after wasting all this time and you're on your way home that you forgot to ask the single most important question that you needed the answer to.

Yup, it sure is easy to forget something, giving the amount of stress just going to the doctor creates. That's why it's a good idea to have someone go with you to appointments and make a list of questions to ask.

Well at this point, I always have one question and one question only that I truly care about when I see the doctor:
Any sign of this damn cancer coming back?
I get to ask it tomorrow Tuesday, Nov 30th at my ENT on yet another 3 month checkup. I hate the anxiety and tension the night before.
Charm

Charm,

Oh boy, can I relate to your anxiety...I hope you hear that cancer has left you for good. All the best with your appointment and sleep well tonight.

Anita

Best of luck with your appointment tomorrow, Charm.

Hope everything goes really well for you today, Charm.

Waiting to hear; thinking about you today. We all understand that anxiety and are here for you! Hugs

Donna

Hugs,

Deb

Charm,
Good luck today and we all hope for great news. I feel for your wife, nervous with the anxiety that comes with these checkups. Hopefully, you will both be relieved by the end of the day and can go forward into the new year cancer-free....Geri

Thinking about you today my brother...hope all goes well!

Charm:

I, too, pray for good results today. It's 11:30 now in Alabama, and not sure how much difference there is in time, but maybe you already have received some wonderful news - so, if you have, please let us know. I'll keep saying my little prayer until then.
OCF friend, Julieann

This post really belongs under the Don't you just love it thread, but it was reassuring and comforting to see the above posts. Thank you Anita, Christine, Anne-Marie, Donna, Deb, Geri, Eric and Julie Ann. Just got back from my ENT checkup.
NO EVIDENCE OF DISEASE - My ENT poked, prodded and pushed my gag reflex to the limit in order to fully palpitate my tongue & flap.
She found no lumps and no problems. Everything looked fine.
While she didn't foresee any progress in swallowing, otherwise her report was glowing.
Yes, my wife and I are both very relieved. Now we relax until March 1, my next checkup (where ENT will have results of a MRI that I need to schedule for late February)
And to keep in tune with this thread's topic: As much as I hate being scared right before my ENT checkup over nothing, I hated it even more when it turned out not to be needless worry almost two years ago. Thanks again for the well wishes.
Charm

Thrilled to hear that it is all good news Charm. You just made my day!!

And...to stay with the thread.........don't you just love/hate living in 3 month increments??

Hugs

Donna

Your post is the one I was looking for. Congrats!!!! Im so glad that you have gotten the 'all clear'. Now you can celebrate

I cant wait til I get to see my ENT every 3 months. For the past year, I have seen my ENT anywhere from every week to every 3 weeks. He just changed me to every 6 weeks. Since Ive seen him so often, its not a big deal for me to go there. Now when I go to my oncologists that a whole different story. I get very nervous about those visits.

How often do you see your oncologists? Do you get CT scans? Do you get check ups by any other doctors related to your oral cancer? Just curious about how others here see their different doctors.

Great news, Ron has his PET set for Dec 16th...

Yeeehaaawww!!!

(that's how hicks express jubilation...or so I'm told)

Was looking for this post all day! Great news my friend, breath easy and relax!

Whew, what a relief! Such great news, Charm! I am so very happy for you and your beautiful wife.

Wonderful Charm..just wonderful!

Deb

Charm:

Wonderful news - bet the sun is shining on you now. It makes me, and all the other Forum members happy to hear about good test results.
julieann

Good to hear Charm. Wishing you clean check ups from here on through.

So happy to hear your good news Charm!! Now you can sit back, relax and enjoy the merry season!! Congratulations!!!

Minh

I needed to hear some good news today. I am jumping for joy for you. My appt. is tomorrow. I hope to hear the same thing.

Great news Charm. I'm happy for you.

There's no excuse for the ignorance, of course, but I think that cancer is so scary and unpredictable to many of us, that it might give someone a (false) sense of control if they think that you or someone else might have "caused" their cancer because of lifestyle issues. That means that if *they* don't do those things, they'll never get cancer! It's deluded and misguided, but understandable when you look at it this way. Patient explanations might help, but maybe not if the person's underlying emotion is fear. After Gordon's cancer and treatment, I worry more about him and myself, and actually catch myself thinking "now, if I don't do this or just do that, I won't get cancer". Luckily I know how wrongheaded this is, and would never say it to anyone else. Anne

Charm, that's wonderful! Hope you have a great holiday season with such good news. Anne

Charm,
Definately belongs on the "Don't you love it threat" or even "Friends" as you have so many including me here
Great that there is no evidence of cancer and hope it continues to remain that way.
Cheers
Gabriele

Fantastic news Charm. We are heading towards our 3 month check up for Steve on the 9th. The dread, fear, stress etc etc has started already. I so hate the week before appointments and the day of the appointment. Here's hoping our news is as good as yours. Angelia hoping for great news for yours as well.

Wendy

Okay, having hijacked a thread I started, I'll expand on Donna's comment. Don't you just hate how your mind conjures up a worst case scenario before those PETscans or MRIs or ENT checkups? and it appears to me that it's even worse for caregivers than patients. The stress that Wendy is feeling over Steve's test, that Suez is feeling over Ron's is even more poignant since they are caregivers. I know my wife actually worries more than I do about the cancer hitting me for a third time.
Yet as all the ones who congratulated me realize oh so well, what a great relief and good feeling it is when those worries don't warp into reality. I guess all the posts here on this thread are variations of don't you just hate it that we or a loved one got oral cancer.
Charm

My appt. It went okay, but he is scheduling another PET scan and took a full blood work up. I have a considerable amount of lower back pain. He did mention that it is possible for this stuff to spread to the bone, but very rare. Well, we all know I am in the category of very rare things happening. Will let you al know when I have some mroe answers.

Angeli,

did he say what it might be if it has not spread to the bone? My thoughts are with you during this time. Its so frustrating when we have no idea what is wrong. I hope you get some answers soon so you can start treating it and have some relief from the discomforts you are experiencing. Keep us posted.

Minh

OK I am finally going to post something here. It's been a long time. Don't you just hate it when your COBRA insurance runs out and the only insurance left available to you for purchase is a HIPPA policy and it actually costs more per month then the disability check you are receiving because you can no longer work. God forbid what do we have to do to survive while fighting this ugly disease and all the pieces of the new "Normal".

The Drs tell you that you are in a "weird group of people." I know they are joking around, but I am now starting to get tired of hearing it. Today I was told I was perplexing. I just grin an bear it. Guess I should let them know that I do not like them saying that. I was joking aorund with them about it, but now I just wish I would be like all their other cases so they would know what to do.

just found this thread. i just had to contribute with:

my mom's RO isn't big on giving details about her cancer or her treatment. everytime we wanted to know something, we had to ask twice, sometimes even three times. it's been like this since the very first meeting. his answer to almost every question that first day was:

"wow, you did a lot of research. don't study too much."

that's when i knew, as a caregiver, that i had to go to WAR.

soo.

That is so true. Our local oncologists don't even bring up treatments that they don't offer in their clinic.
While research is a good thing to be aware of options, IMHO it's also important to not get too caught up in all you read/find online and take it one day at a time.

Standing in line at the store and one of the tabloids said, in bold headlibes, "Michael Douglas prepares for death". They even had a photo puportedly of the burial plot he has picked out. Do these people just make stuff up out of thin air?

CMMoore brings up a good point on not getting too caught up on what you read. Don't you just hate it when you open the newspaper or go to health website and there's a lead story about a big new breakthru in cancer treatment that won't require all the pain and suffering of radiation, chemo or surgery and then it turns out that its a research report on yet another cure for cancer in mice or in-vitro cells. And worse, when well meaning friends send you links to it or raise it in conversation.
Charm

All the emails and links to "cures" are very frustrating. Even though I know my family means well, they still point out all the people who have cured their cancer naturally, just change his diet they say and it will work.... sheesh

I guess we just have to tell people that we trust our doctors - and dentists as well. My dentist is the one who caught my cancer, and he has me doing the flouride trays every day one of my co-workers told me "flouride is bad for you." But I just told her that I trusted my dentist, and I wanted to keep my teeth as long as I could.

Right, "I heard about this place down in Mexico...".

Hey, what happened to this thread? Now I get even more ridiculous remarks from people.

Most of you know I am now a colon cancer patient. My "friend" knows how to cure me - eat lemons. So if you guys ever get colon cancer, remember that!! lol

That is just crazy!!

She's the same one that told me to eat asparagus for oral cancer. Are you guys eating your asparagus??

Oh my! Guess I did not eat enough asparagus. Hey asparagus and lemon juice, sounds like a good dinner. LOL

Add a little oil or butter and you got yourself one tasty side dish... Truthfully... Someone suggested quitting radiation and drinking Tahitian noni juice... Not so much... I wanted to ask her if she was a bag of nuts - instead I smiled and said I would try the juice - but not give up my radiation...

I think a suggestion like that it highly irresponsible!

today, Alex and I stopped off to get the newspaper. The girl in the shop, probably trying to make conversation, made a comment about Alex's weight of 58Kgs (128 pounds) which at 6'1" puts him in the severely underweight category. Her suggestion that he was lucky to be so slim was met with sharp and to the point response from Alex, "Oral cancer will do that to you". Even faced with such an insensitive (and common) remark, Alex still registered her discomfort as the horror of what she had said dawned on her and softened it with "but I am better now and lucky to be alive". I think it was the shop assistant who was lucky to be alive because if it had been up to me to respond, my choice of words would have ruined her day. I feel sorry for her now, but at the time bodily harm was part of my thinking. Even so, I don't think we will buy the paper there anymore.

We had a similar thing happen to us when both Steve and I were getting our hair cut some time ago. He got his cut and then decided to go for a walk while he waited for me. No sooner was he out of the shop than my hairdresser couldn't help but ask why he was so thin and had he been ill. He hovers around 56kg at a height of 5'11 so not much different to Alex I imagine. How on earth can you ask a complete stranger these things. She quickly learnt to mind her own business when I told her he was recovering from oral cancer and had actually put on 5kg. She didn't quite no what to say and I've got to say my haircut sped up a great deal. You really have to worry as to where people's manners are these days.

I guess that I have just learned to deal with the comments. Most people speak out of concern, and don't realize how they sound. I am just glad to be here, despite the fact that I still can't eat much, and I'm tired a lot.

maybe I'm just sensitive, but I absolutely hate it when I tell people I'm a cancer survivor, and they respond with....How long have you HAD cancer? It angers me because I just said I am cancer free(thank god) and they just assume that I still have cancer. I know they probably don't mean a thing, but it bothers me soooo much

ocs

[quote]What we've got here is a failure to communicate[/quote].IMO, that classic line from Cool Hand Luke sums this up. Perhaps those people do NOT hear you say you are Cancer free, because that's not their definition of cancer survivor. There is an interesting Wiki article on it that does not provide any answers but lots of viewpoints.
Cancer survivor- wiki While I am old enough to remember when you had to be 5 years free of cancer to be an "official" survivor, as the Wiki article points out, the current definition starts at diagnosis so some "cancer survivors" still have cancer. The best my doctors will say is NED (no evidence of disease)and not "cancer free" so I don't use that phrase myself. However, people don't realize just how sensitive this issue is, especially if they are implying that your cancer could come back as that is not something to joke about. Congratulations on your recovery
Charm

Thanks Ned, I'm sure your right. I am sensitive still and trying so hard to get my life back. I guess when they say that to me, it's reinforcing what I'm thinking in the back of my head, yet trying so hard not to admit. So if that's the case, how do you move on? I often ask myself the tough question of, "If I was cancer free and I met a man that said, "I had cancer two years ago", how would I feel about getting involved with that person. Would I be afraid to get involved with someone that might have a reaccurrance? Would I want to risk loosing that person? The worse question of all is, would I simply be selfish and say, "I don't want all that baggage"!! I have got all those reactions and more. I try not to judge these individuals, yet, it makes me feel as if I have the C word tattooed on my forhead

I have lost a few more pounds lately. People just don't think! My own sister said to me, "Edgar and I think you look so much better a little heavier"! Well now, being that swallowing is very hard as the radiation closed my throat a little, and I don't have much saliva, eating is difficult and I find no pleasure in it. I also find myself a little depressed and that also affects my eating. Did she mean to hurt my feelings? No, people just don't understand. That is why I joined this site, I feel so alone in my fight and recovery. I pray it gets better as I want to enjoy my life to the fullest.

Misty

Misty

It will get better. You made me laugh with that Ned joke. The first time I heard the phrase it was "Dancing with NED" from a cancer blog entry from a Breast cancer survivor. I was wondering who that Ned character was or if it was some obscure reference. It did not dawn on me that it was just an acronym for no evidence of disease. We use a lot of acronyms here as a form of shorthand.
But you have come to the right place. Scroll back through this thread and see how IT'S NOT YOU, we have all experienced the type of thoughtless that is oh so trying. Our emotions are so raw after this that it's a relief to be with people who understand.
Keep the faith
Charm

My daughter was three months old when I had to get a pre-surgery EKG. The technician said, "I hate women like you who just bounce right back after having a baby. I still haven't lost my baby weight after 3 years." Um, yeah. Tongue cancer is a great diet.

After my second tongue surgery a lady at the garden store asked me where my "accent" was from. Said she couldn't quite place it. I didn't know what to say so I just told her I had oral surgery.

I think most people are well meaning. I remember when I was a teenager working at a music store a man came in who had a really raspy voice. I asked him if he had a cold and he said, "no, this is just how I talk." I was mortified. I certainly didn't mean to hurt his feelings. I just spoke without thinking.

[quote=Pandora99]I am not amused when people say that "you have such a great attitude about it" or "you are so strong". WRONG ON BOTH COUNTS!

There is no reply to those comments. I often feel weak and scared (as my OCF family knows and has experienced themselves). Where do they get this stuff?

Donna [/quote]

I am only a few weeks on this journey and I hear those two things from everyone - even when a good friend is talking to me and my eyes are filled with tears, they still say "you are so strong" and all I want to do is scream or bawl. I am quickly learning to chuckle inside at the goofy things people say.

i'm two months in and more than a handful of people have said to me "ohh cancer? really? my "fill in the blank" just died of cancer." i'm thinking"uhhh, umm, ok that is not comforting" and i just say "sorry." sigh. and my best friend just told me to "move on." (yeahhh, i don't think i will be moving on anytime soon) but yes tracy, it's true people are well meaning. what i've had to do is say to myself, this experience will teach me to be more sensitive and choose my words more carefully when comforting others. i know i've unknowingly said a lot of insensitive things in the past and probably will in the future. however, i hope those times are few and far between.

I know what you mean about people saying how "strong" I am. I don't think that I'm strong at all. And I don't really have a great attitude, either. Most of the time, when I let myself think about it, I'm scared to death, even though I am two years out of treatment. There's always that fear that it will come back.

I too have lost weight. Was very overweight when this all began.
After the surgery in January, and especially after most of my chewing teeth were removed (I have periodontis) before radiation, I found I had trouble eating with the obturator. Had to drink.
Just when I was getting better with eating, and the obturator seemed tight, the stage 4 cancer came back in a lymph node and now I've had another operation, and food gets stuck in my throat.
I'm back to drinking. And sometimes it comes out my nose.
But... I have lost weight and can buy clothes where people say I am thin. No one has said that for at least 30 years! So I just love getting dressed. I wake up in the morning and thank God I am alive for another day. Start chemo and radiation for the second time this year this Tuesday.

hey - I answered your other post! Sorry about the recurrence but please do try not to let it get you down! Christine and a few others have danced with this devil a few times and they managed to step on it's toes! You can too! I too lost 30 lbs. (21 after treatment) and another 9 over the past few months - mostly because I'm not eating any junk food (no sugar - no meat - no flour unless it's mixed grains - and even then I will have it maybe onc or twic a week only! getting dressed is a joy - but for the same reasons as you - just happy to be here an see another day! hugs! The weight loss is a bonus in a way but I would have prefered to do it without the "c" diagnosis!

"he's lucky to have you" is my all time favorite.

in the waiting room this week i heard a social work, patient (mom) and daughter behind me talking about her palliative care plans. "well i work full time and have kids and can't bring her here." my heart dropped for this woman. whole waiting area heard it (top cancer center no less)

totally annoyed with the balance of managing cutting edge therapy with really poor people skills.

My favorite was "where did you catch the BIG C.

I can't say the answer I said but I did say in your office.

Irene

Glad you found this thread. It's long but I recommend reading all the posts - although in doses. Personally I find that reading how others have the same peeves and have had the same exasperating experiences helps me realize it's not personal.
Instead we are stereotyped as a cancer patient/victim/survivor automatically. Another reason to enjoy the OCF forum where we can be appreciated as persons.
Oh, and yeah, I liked your reply to the Big C query
Charm

Nanci Griffith has recorded a song on her newest album called "Hell, no, I'm not Alright". The album won't be available in the U.S. until April, and in the U.K. in February, but the song is available on utube. Nanci is a breast and thyroid cancer survivor. The song isn't about that, but it does resonate with me, and is something that I often feel like saying to well-meaning people.

We were in the ER a few months ago (minor issue with our son, all well now) but a nurse walked up to my husband and said, Sir, are you alright, please tell me you are under a doctors care.

Even those in the medical profession don't know when to just keep their mouths shut...

Didn't notice the radiation area where no hair grows? Or the thinness of a chemo patient?
DUH!!!!

wow really? How bout this. When Ron had his lung biopsy surgery, he was told in ICU that he could have something to drink, he got some Gingerale and sipped on that and I helped with it. So than I asked if he wanted a McDonalds Milkshake and he said Ya so the nurse called whoever and asked if he could and they said yes, well machine was down for milkshakes so I got him a Strawberry and Cream protien drink instead. He sipped that and than taken to step down. Well he was on the cardiovascular floor and I don't think anybody ever had an Oral Cancer patient, first the resp therapist came in and for some reason was told he had a permanent trach, Hellooo duh do you see one? Second the Dr on call was a B, she yelled at him really YELLED for drinking the protien drink said he was not allowed while he was IN BED. Needed to be in a chair. Next the STNA came in to take his temp, under his tongue! He told her he don't have a tongue BUT she came in everytime heading that stick to his mouth! Than that wonderful Dr again, Ron was talking to her and she was saying "uh huh" "uh huh" until Ron asked her 'Do you understand me when I'm talking" you know what she said? NO! WTH??? A DR just agreeing with the patient cuz she can't understand him! THAT is why he made the great escape out of there the day after surgery, he said he was afraid he was going to die there! I have yet to complain about this.

OMG Suez! That's terrible treatment from a hospital! Matt had a similar experience on a cardiac wing after lung surgery with the staff not understanding that his condition was NOT heart related.

Ya think? They were lucky that I found this out AFTER a couple days after he came home and not when I went there to pick him up the next day, that is why he wanted to get out of there. He was afraid for his life.

i was really encouraged by the man telling me to "just fight it" one day after my last radiation treatment. if it was a football speech i could have said rah rah

It's so good he told you that, Mick! If you can get into the fight mode, it really helps motivation and puts you more in control. And it certainly helps lower the stress level, too. Getting into the fight mode is what got me going when I was caring for my son and he's doing great, now!

how am i doing? thankfully my honicidal tendancies have waned

Mick - I can tell just by looking at you - You are doing GREAT!

I didn't have the time for others' pity, I was too busy feeling guilty about being less than I had been, about being sick, not able to swallow at all, walking around with a peg tube in my chest, carrying a feeding backpack, drooling, having to retire from my 22year bus driving job, because I could no longer enunciate clearly.
I know my squamous cell cancer is the result of my own lifestyle, no one else to blame, just me, so I didn't have anger about the cancer. Denial is what kept me from the surgeon's knife for an additional two years, but finally let him carve on me. I don't think he did a very good job, but I chose to let him cut me, he didn't force me.

That's the Beauty of personal freedom: you have it, you exercise it, you live it.
Of course, perhaps I am just 'Not Rational'.

Funny. Some much of what people say is rhetorical and do not warrant an answer lest they get a truthful answer and run away crying. How are you? Do you really want to ask that question?

I have been a very sarcastic person most of my life short, usually not verbalizing all my thoughts, but later enjoying the stupidity of mankind as a reflection of WTF.

Not sure how I will respond when the questions roll in, sure do not want to offend those with good intentions.

I got a laugh, or at least a little bit of enjoyment about reading posts on this thread which I had not done until now.
A number of posts comment on others comments on weight, or lack thereof, after having gone through oral cancer treatment.
I have always been slender, and probably have lost 4 or 5 pounds, which is noticeable when you don't weigh very much. But I just have not been successful in putting any more on, although I eat well.

It always strikes me when people make comments like, "what will become of you if you lose anymore", etc, how they would never make comments to someone who was overweight, but they certainly will to someone who they think weighs too little. I imagine myself replying, "well, maybe you could give me some of your weight"; I could never say that, but I have thought it! And I also had stomach surgery 7 months ago where the bottom 20 percent of stomach was removed to get a non-aggressive sarcoma, not related to oral cancer. You'd think people who knew your story would not comment on weight and I guess they are concerned, but they definitely lack tact.

Anne

One of my favorites is: "everything happens for a reason." My mental answer is "why don't you just go &$%*@ yourself." But I just put up with it because I figure they're just trying to be helpful.

My favorite one is this: "Everything happens for a reason." My mental response is: "Why don't you just go %$&*@#$ yourself." But I don't say anything. I just nod a little and figure they mean well so why challenge it.

Charm this cracks me up! I don't know if anyone else has commented on it (and I'm fairly new to the board) but I hate when people say this MAINLY because that reference in the bible is talking about temptation and really doesn't have anything to do with hardships/tribulation! I usually want to tell them to go back and read their bible again because they sound like an idiot! lol

MissB
[quote=Charm2017]WOW- great responses. It is reassuring that others (beside a cantankerous coot like myself) bristle at these inane remarks. I had not thought to include the actions of the medical profession which can be just as annoying but were posted here.

Even though I am religious, or perhaps because I am, another one that gets to me is: "Oh, God never gives us more than we can bear", as though my cancer was some Divine stress test. I do confess that references to Job are easier to take.

Let's keep them coming folks.
[/quote]

Whenever I heard the one about "God never gives us more than we can bear" the accompanying thought that always came to me as a CG to my son, was "God, are you sure about that? Do you really know me?" The bible has been translated over and over so many times, with things left out or added in to "modernize" it and to fit many different religions, it is no wonder it has stayed as popular as it has for so many who refer to it for inspiration or to prove whatever point they want to make. As a former teacher and translator of medical research documents, I knew how important it was to be able to translate the thoughts of the speaker (or writer) and not just the words. In effect, we are at the mercy of the translator when referring to any translated document. Personally, my "bible" was OCF. This is where I came (and still do) for my inspiration, practical help and compassion. Just to be on the safe side, though - I do resort to prayer. IMO, whatever works, DO it!

Thanks MissB. I've been away from this thread for a while although it was my baby and labor of love at first when I started it.
But now I have another thing to add. the newest insurance scam:
Hospitals "admit" the patient but in the medical records, they are admitted "for observation" rather than "inpatient". There is no apparent difference to the patient, they are in a hospital room and a hospital bed, getting hospital meals and IVs. But when the insurance bill comes there is a major difference: instead of a fixed payment of $250 per day co-pay, the out of pocket is now 15% - the full outpatient rate. I had never heard of this until this week when I rushed my wife to the hospital emergency room on Tuesday before Noon for abdominal pain. She ended up having her appendix taken out at Midnight. [she's home now and doing fine- I'm the caregiver now}
I noticed the "observation" entry in her medical record and raised holy hell. Two days later, 7 increasingly legalistic emails, 4 Vice Presidents and One CEO confrontations later: the hospital decided to bill her as inpatient.
It's these damn Milliman guidelines that all the hospitals and insurance companies and now even CMS (Medicare) use.
So don't you just hate it when they find one more way to charge you more for health TX?
Charm

How did you see the medical record? Just want to be ready!!!

Just like I see most of my medical records: I take the book the nurse has out for the doctor and open it. If it's an office visit, it's usually in a plastic box on the door. For hospitals, it's usually on the gurney or the foot of the bed. The nurses and techies have to put entries into it, and nowadays there is usually a page or two of sticky labels for blood test tubes etc.

Plus in this case, I asked the ER doctor to be sure it was inpatient and he went out to the case manager and said he couldn't change her recommendation. The surgeon said he would after I mentioned I had started off in malpractice law. While you have to scan the pages, the info is there albeit with cryptic: adm:obv or adm: surg/ip,.
Usually I have so much waiting time, the doctors don't even know about it, but the few times one has walked in, I smile and ask a question about something in it.

Whew. long answer. Better strategy: just ask the doctor and ask the case manager directly. I did that too.
Charm

Speaking of medical records. . . my mom had recommended me getting a record of every visit, proceedure and test. I finally requested my husbands reports and ended up with 80 pages and his PET scan on CD. It will be good having all this on hand if we ever need it for a second opinion. It proved very interesting reading!! Had to laugh when they commented on his mental state. Also when they would mention that my husband would leave the office (as was his practice) and his wife (me) would have a ton of questions. He even didn't go to 2 meetings with the doctor and just had me go. He has a definite "need not to know" mindset. I do all the reading and research and he says I'll do whatever you want. Let me take away his sugar and drank the worst green veggie shakes just for me.

Thanks Charm. So, we WANT it to say inpatient, right? Sorry, having a hard time focusing!!

@Terri.... ;o)

Oh, that's great Rod has no cancer, he'll be able to go back to work soon won't he?

and.....you must be happy he is in remission, you wouldn't be having to care for him so much anymore now would you?

[quote=KenEggman]Funny. Some much of what people say is rhetorical and do not warrant an answer lest they get a truthful answer and run away crying. How are you? Do you really want to ask that question?

I have been a very sarcastic person most of my life short, usually not verbalizing all my thoughts, but later enjoying the stupidity of mankind as a reflection of WTF.

Not sure how I will respond when the questions roll in, sure do not want to offend those with good intentions. [/quote]

There were only a few times where I told the truth (the day they found my second tumor) and it wasn't that good. It was like other people were more emotional and down about it than I was. Seeing other people get all quivery didn't help me stay in a good mind-frame so now I just say "good" when they ask how I am. Hopefully they understand and just encourage instead of pitty.

... you are having such a bad day, you react badly to ANYTHING that is said.

My MD told me he had run into Alex at the shopping centre and looked really good. This was at a time when Alex only showed his face on days he wasn't nauseous or exhausted, was at least 10kgs underweight and was clearly not looking good. Did I take this as encouragement as I should have? Nah!

My immediate response (on the inside luckily) was to get defensive. My interpretation was that our MD was questioning the amount of time off I was taking since Alex was clearly doing so well.

Our poor well meaning friends and acquaintances don't have a chance as on some days we will handle and think nothing of their comments and indeed, may welcome them. On others we will go off like a firecracker at the same comment.

Yes, it is a good thing that we have more manners and ettiquette than some of our well meaning friends and relatives. One friend who I have heard her numerous times ask "what is someone's prognosis or chances" had me ready when she would eventually ask me. I just gave her a look that said it all. I don't know what it looked like but it should of shown that it was something I didn't want to discuss in a casual way with others around. Hopefully showed my fear, did she want to know that even if I could say 90% that who would want to face that their husband has a 10% chance of leaving us. Do they realize the reality of some of our answers. She later apologized and I was able to graciously tell her this is not the question we want to just casually answer.

Another time I just bit my tongue when we briefly met with a relative we barely see and he asked us "now come on, what's the deal with the cancer, did they get it all". It was like "come on, give me the facts and don't keep anything back". The sad thing was this was a Pastor who I hope doesn't deal with people like this in situations I know he encounters.

I guess even before this journey started 6 months ago I never felt I had the right to ask this of anyone. Even when my niece had leukemia I would of never dreamed of asking my brother.

Either I'm lucky, or I'm unaffected....People don't know how to act, or what to say....they mean well, and to me motive is everything.

I have plenty of fear, but am thankful it only comes up to stare me in the face once in a while.......I simply don't want the added stress of anger, nor do I have the physical resources to deal with anger......so shine all the ignorance on...we aren't going to train them, nor change them....so it's a moot endeavor.

p

As both a lawyer and College English major, I've found language to be a lot of fun. Like the word: moot
Moot's two different meanings
Another commentator summed it up this way:
[quote]The confusion over the meaning of moot point is modern. It is a misunderstanding of another sense of moot for a discussion forum in which hypothetical cases are argued by law students for practice. Since there is no practical outcome of these sessions, and the cases are invented anyway, people seem to have assumed that a moot point means one of no importance. So we�ve seen a curious shift in which the sense of �open to debate� has become �not worth debating�.[/quote]

Moot court is still part of all law schools and thanks to the magic of TV legal shows faux courtroom scenes, almost everyone uses "moot" to mean futile, of no practical consequence or already overtaken by some other action just like Phrannie's post. Although with over 264 thousand views of this thread, perhaps this endeavor is moot in the original sense after all.
Your morning dose of etymology courtesy of Charm

...I swear Charm, I read your posts and laugh to myself as we think so much alike...you must've been a hell of an attorney

;o)

Charm, Eric is right... you must have been a foreboding attorney. I would have wanted you on MY side, for sure, would not have wanted to be going up against you.

when i came back to work from my partial tongue removal surgery and lymph node disection and a co-worker looked at me and said "well at least you're cured"
when i came back to work from a radiation treatment and said how tired i was and a co-worker looked at me and said "why are you tired? don't you just have to lay down?"

Eric, Kathy, & Ingrid

I've had my moments. I developed a niche at different jobs doing the same thing: showing unreasonable people what unreasonable really was and then just short of mutual annihilation; crafting a reasonable solution. Very stressful and it earned me derogatory nicknames like: Mad Dog. My wife worried at first when I had to retire after the cancer that I wouldn't get my MDR (minimum daily requirement) of Conflict that I had become accustomed/addicted to, but the insurance companies, hospitals, doctors, medical supply houses, not only met my MDR but often exceeded it. and then there's there all the issues in this thread.
charm

John

Your coworkers sound like real gems. When you finish your radiation TX, you get the option to take that mask home with you. I'd recommend bringing it into your office and hanging it on the wall. You can tell them it's to remember all those nice relaxing naps you had on a nice slab of lead with the mask strapped to your face while getting zapped. Except it sounds like they'd be so clueless as to believe it.
Sorry to hear about your troubles. If you haven't already done so, read some of these back posts to see just how predictable and routine are these "slings & arrows" of outrageous coworkers - the common bad fortune of oral cancer patients.
Charm

1) Re "Moot" and the first definition from Charm's quoted link: <<1. Originally in Law, of a case, issue, etc.: proposed for discussion at a moot (MOOT n.1 4). Later also gen.: open to argument, debatable; uncertain, doubtful; unable to be firmly resolved. Freq. in moot case, [moot] point.>> I find that this first definition is in conflict with itself i.e. "open to argument" and "unable to be firmly resolved". If a question has been determined to be "unable to be firmly resolved", then how can it also be "open to argument"? Huh? how come? I've always used "moot" as meaning "unable to be firmly resolved". I like Moot. . I might even name my next cat "Moot".
2) Re the "Gems" we encounter and their unthinking questions, I prefer to think they mean well, but they are just uneducated when it comes to the horrors of cancer survival (not stupid, just uneducated). The only way they could be truly educated is to have survived it themselves and I wouldn't wish that on anyone. Since it is unlikely they can be properly educated, then - Forgive them? for they know not what they do. A few snappy comebacks would be cool, tho'

[quote]If a question has been determined to be "unable to be firmly resolved", then how can it also be "open to argument"? [/quote] Ah, the innocence of those untainted by any legal training in being able to argue not only anything but both sides. In my legal & personal experience, it is exactly those questions that cannot be firmly resolved that are argued over and over again. First at the district court level, then the appeals court, then the circuit court, and finally the Supreme Court where it may appear to be firmly resolved only to be reversed decades later when politically expedient or socially anathema. You need only take a look at the current social/legal hot button of when a human life legally begins (conception?, gestation? birth? or when a "soul" has been given ?) to see how there is no intenral conflict whatsoever in the first definition. Or to use a more relevant OCF comparison: Sort of like the PEG Wars
Charm

Thank you, Charm - for that clarification. It now makes sense to me and gives me a little more patience and understanding for those whose opinions or beliefs may be contrary to, or not quite in line with my own. Ah-h-h the Peg Wars. It would seem to me that there may be times when both sides could be right.

My favorite was when my boss told all the parents of the children I worked with that I was on vacation!

Vacation? Did it really happened? Screw this guy...

We've only been at this since mid-April and I've already figured out that everyone is now going to tell me their cancer story. It usually goes like this....

"My mother/sister/neighbor had colon/breast/skin cancer and they are all right now. That was x years ago, I'm sure your husband will be just fine."

All I can do is smile and thing...what they hell does that have to do with anything.

Other thing that has happened....was at the grocery store last week in our small town, at the checkout line, had a woman tell me her breast cancer story, and how she thought about killing herself, on a day where I was having a tough time coping with my husband's illness. I put my hand up, told her I had to go, she literally chased me through the checkouts to finish telling her story....oy vey!

Oh, the "other cancer" stories. They're the worst. Even my own mother who had a lumpectomy for breast cancer followed by radiation thought she knew just what I was going through. She tells me, "Radiation is nothing. It takes longer to set you up than to do it. They just zap you for a couple seconds." They just don't have a clue.

The worst most ridiculous comparison was when a friend of mine told me he had had an 8 hour surgery for his cancer. Turns out it was skin cancer and the 8 hours were sitting in the doctor's office waiting for pathology to come back after they cut a piece of skin out and checked the margins to see if they needed to take a little more. I guess it took all day. But he wasn't even in the hospital. And he's comparing that to my cancer.

I now have colon cancer with mets to lungs and my two lung surgeries weren't even as bad as treatment for oral cancer was. Colon cancer is now what I will die of, but my sympathy lies with oral cancer patients. And my love is still with the people in this forum that helped me through that.

[[quote=braziliangirl82]Vacation? Did it really happened? Screw this guy...[/quote]

Well put Braziliangirl82, if English is your second language then let me tell you that you have mastered it.

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."

Oh wait until your Tx is over, EVERYONE will start off EVERY conversation with .... So how are you doing? I heard that literally for years post Tx.

Oh yeah, too true. I've already endured that for nearly 3 years with no end in sight!

[quote=davidcpa]Oh wait until your Tx is over, EVERYONE will start off EVERY conversation with .... So how are you doing? I heard that literally for years post Tx. [/quote]

I can't say for sure I'm out of hot water, but I feel like this is beginning. Some of them are very sincere, and others I can tell could care less. It becomes redundant if there's no sincerity.

I just "love" it when people compare their medical stories to my own. If you've actually gone through something (i.e.- anyone on OCF), I will show nothing but empathy for you. However, I don't think your cyst compares to the baseball sized tumor that was in my mouth and tongue base. Just sayin'.

How do you guys cope with that? I'm just laughing in my head and taking it lightly for now.

people who back away from you or cover their mouth when they learn you have/had Cancer; like it's contagious or something....

guess their afraid their gonna get cooties!! just plain funny ..ignorance!! jc

....yes, I did gain weight (soft puddings, gravies, etc.........plus my love of food) I guess. I hate it when people see me after we have been apart for some time and they say........"well aren't you looking (pause) ... HEALTHY" - with emphasis!! Based on their comments over 35% of the North American Population are very "healthy"!!


Donna

Ha, I had someone say they had TMJ so they could understand what I was going through...

Seriously, I have over 350 stiches in my head, and I am numb from my ears to my boobs and you get it because your jaw clicks??????

The other side is "cancer face" when they cock their head to one side and ask "how are you" is a soft voice...

Not sure which is more irritating

Nice to see this thread back in action. Anytime you don't have a good book - either old fashioned paper on your e book,but want to read a 48 page short story collection that started three and half years ago when I was a young 62. just hit page 1 and start reading.
amazing how some things are so common and so just outright strange and others heartbreaking that people say or do the OCF community. I learned so much from you all on how callous and thoughtless comments are our daily bread. But we rise above it
My frustration made me start this thread, your participation has made it the Wikipedia of "Don't you just hate it" for oral cancer IMO .
Charm

Ooh oooh, I have another one...

When a complete stranger asks about your scars, prefacing with "I hope you don't mind if I ask".

Makes me want want to respond "I hope you don't mind if I ask why you didn't that hairy mole removed, or lazy eye fixed, or when you're due (when they are clearly just fat and not pregnant)" (pick your relevant response).

We could do a choose your own adventure book, except it would be a choose your own snappy comeback book!

During my son's treatment, although he hadn't lost that much hair, he decided to shave his head bald. Soon after as he and I were walking to my car in a large shopping area parking lot, one of his female acquaintances who had not seen him in a while and pointing to his head yelled loudly "What happened!?". And without skipping a beat, he yelled back loudly across the parking lot, "CANCER"!

my fiend Lucy just passed a week ago Saturday (god bless her she was a fighter and had peritoneal cancer) . anyway just to share - there was a woman at Costco one day where lucy was shopping - and she kept staring at her because she was bald due to treatment - my friend - having put up with this for some time finally turned around and said what the F___ are you staring at? Haven't you ever seen someone with cancer? She had balls!

Awesome! I love those both, especially since I will going bald and beautiful shortly myself!

I am storing up the zingers for future use.

On the same vein as Cheryl's quote of "What the F______are you staring at" a popular comeback phrase during my high school days (back in the middle ages) when others stared for too long at someone, was "Take a picture - it lasts longer!".

I'm trying to think of a comparable to when peopel ask me if I have I children (I am a family lawyer and some people think having kids is a job requirement).

I simply have never wanted children, but when one particularly nosy other lawyer asked, I responded "No, I am barren, thank you for bringing up a painful subject".

That shut her up!

Good story for you guys...
I was at a party on NYE and ran into an acquaintance (whom I am assuming was very intoxicated) who I havent seen since before I got sick. So she's like ohhh emily how ARE you??? in that annoying sympathetic voice people use when they ask a sick person how they are. so I kind of ignored it and I was like i'm doing great! how are you? then she asks me again in the same voice, we go through the same thing again, then she goes to introduce me to her boyfriend. while maintaining this pitying attitude, shes like this is emily, last year, emily.... and then she gave me a pouty face and a little side hug and i changed the subject before she finished the intro and walked away. does my medical history really need to be included in my introduction to strangers at parties?!?

Charm,

I just have to tell you that I spent the last hour rereading this thread. What a great thing you started here! I had some great laughs, too. These entries will always be current no matter when they were written.

Happy New Year!

Anita

Anita, I just read the same thread yesterday, completely agree...Charm, you started a good one!

The worst was when we were in the thick of it, and people would give "puppy dog eyes" or be too nice, treat us like they thought someone was dying.

When Vince was first diagnosed, one of my son's coaches, and a close family friend, who always razzed us, called being extremely sweet. I told him that if he started talking to me like he thought Vince was dying, I'd kick his butt. I knew he was there for our family, but was very happy when he went back to treating us in his normal snarky way. Ana

Ok, I have another one for you.

I returned to work to receive a message from a client who was irritated that I was unable to call her back within a week of my surgery date. Her words, and I quote:

"I know you underwent cancer surgery. I had TMJ so I totally understand what you are going through, but I need to hear back from you within a week."

Really, TMJ? Needless to say I fired her as my client...I hate stupid people.

Tina,
Glad you canned her - she definitely doesn't deserve you!
Maria

Good for you, Tina! You can't fix "stupid" and to quote (loosely) Desiderata - "stay way from stupid people, they are 'Vexations' to the spirit".