#1 on my list is mind-over-carcinoma, as in: "You can beat this with the right attitude."

Really? So if I don't beat it, my attitude's the cause?

Don't get me wrong, I'm brewing up some good feisty attitude. It will help me endure the extreme physical testing and losses of treatment. It will spur me to fight as hard as I can for my life. And it will help me find the good days and moments despite it all.

But save me? No, that's down to luck and medical talent, not attitude. Whenever well meaning folk tell me it's all up to attitude, it feels as though they're blaming everyone who's lost the battle to cancer, including my parents.

What do you hate to hear? Please don't leave me alone with my rant

Mama

You're not alone. The thread was started four years ago and continued over almost 50 pages!

Whatever the "NOT what to say" to an OC survivor can depend on the mindset of the survivor at the particular moment of the verbal exchange and the reaction to it can change at any day or moment. Early in my son's Tx, as he walked out from the Rad room, I cheerily said, Yay! only 33 more to go! That upset him so much, I never commented again about how many more treatments he had to endure. Then, when he only had a few more Tx to go, he himself cheerily brought up how few more treatments he had to go. In addition, the message sent is not always the message received. The one making the not-well-received comment, may have the best of intentions, only wanting to help, to encourage but not having had the same experience cannot possibly know the brutality of the Tx the survivor is experiencing nor the level of his/her depression which in itself can only be improved in very small steps. Seems to me that the well-meaning commenter is the one who is better able to take a cue from what the OC survivor likes or doesn't like about any message he/she receives. The OC survivor has too much to deal with already in just surviving, to think about "attitude" but if he/she can be helped to find something, even a very small sign of progress in recovery, it may help.

Mamacita - I like your feisty attitude - it shows you are taking control in surviving whatrever life throws at you!

I agree with you Mama. Save the rah, rah. If attitude matters that much, few of us would get cancer, could cure themselves by just wishing cancer away nor would we die, especially at young ages. It's our genes that matters, health care, diet, lifestyle, luck, karma, depending on ones beliefs. Hope, and doing the best you can, may be different. My doctor said I'm like a cat with nine lives, and I hope it's 10.

People are also apt to say really stupid things to the caregivers of survivors. On our vacation, one of our doctor friends told me that my husband did not look as good this year as he did last. As he was coming down with a summer cold, that was likely true, but it effectively ruined the whole vacation for me. Now I have to decide whether to write him a letter or direct him to this site.

Anyway, rants welcome here!

Well I surely don't like it when people tell my that ill back to normal in no time. I will never be back to normal even if the surgery is a resounding success I will not be "back to normal".

A lady at church asked how I was doing mid-treatment. I told her I was doing surprisingly well. She told me not to worry, it was going to get much worse. I laughed out loud but it sure PO'd my wife!

Had a lady at church tell me "you don't look like you feel good" soon after my radiation treatments. It upset me so much! I stopped attending that church.

I was at court the other day (I'm a lawyer), after just having some laser treatment which results in bleeding and bruising around my neck scars...I got back to my office and already people were calling my partners (notably not me) to see if I was ok, because I "didn't look good". Apparently the rumors were flying for a second time that I was dying...

I then, same day, went into the store in our building and the counter person said "whoa - battle scars". I smiled and said "cancer", and she was speechless, then wished me the best.

At this point, all I can do is shrug and let it slide off. The people that matter know the drill, and that's all that matters anyway.

For the most part people don't mean to be insensitive - it's kind of like asking the overweight woman when she's due to give birth. People are just dumb sometimes.

"Heck of a way to lose weight isn't it?"

Love that one!

"T"

I had a former colleague tell me how good I looked after losing weight, and she presented me to another colleague by saying, "This is the new Georgi!" as if I had been on some wonderful diet. I thought, "oh, yeah, I just love being the new Georgi who can't eat normally, and whose speech is slurred, etc."
I do think that most people are really trying to be supportive, and don't always realize how they sound to us.

You're right, Georgi - most people do want to be supportive. They are just ignorant about what a cancer patient goes through and the "diet plan" forced upon them. At least you have confirmation that "the new Georgi" looks good! Maybe what we need is a list of snappy comebacks.

Twice this week, while doing my short walk in the park, using my cane, a passerby asked if I had my knees replaced, and another, if I had a bum knee. I told each no, it's from chemo for cancer treatment in the throat, and can see the look of fear in their faces, and probably sorry they asked, and neither could not believe it, repeating, from Chemo? I guees I don't have look of death anymore, when like when I was 130lbs, and pretty solid now at 200lbs, stil 40-50 lbs less that what I was, so figured if it could happen to me, imagine themselves lol. I told them should have seen me 4 years ago lol. I'm fine with talking about it, but most get uncomfortable when cancer is mentioned, and probably are more afraid for themselves.

[quote]Twice this week...[/quote]Twice the past couple weeks, I start getting unsolicited "do you have a senior discount?" Say what? I thought getting the weight off me was a good thing, make me look younger; appears it has made me age some years; oh well, not complaining; alternatives could be much worse. lol don

Don - You do look younger since you lost weight. Just go with that. OC ages caregivers, too. Just put a little sign on your mirror that says "You look fine".

I have already been offended and have not even had treatment yet! I had a friend, to be honest not a very good one, tell me everything will be fine " I just have to will it away and my cancer will be gone, and will it to God and he will perform a miracle and it will be gone" I don't know why I took such offense to this but I actually cried over it later

Oh Jessica, I would have cried too <<<Hugs>>>. That person was totally dismissive of everything you're facing. She makes God sound like a stain remover.

Jessica,

There is a lot of positive in that comment. I firmly believe in the power of positive thought. I KNOW your mind can and does control the body and there is no reason to think the body can not work internally and assist the body to choke off cancers. Certainly, we all know stress is a factor in grooming cancer. We know we can control stress, so we can affect cancer to some degree.

There are many examples of cancer survivors who were sent down the palliative path and miraculously survive and even find their cancers have stopped growing or even shrunk. I attribute that to the power of God and miracles.

These are positive thoughts! don

One of my current favorites, because at the moment it makes me laugh, but a few more reps and I will probably slug somebody. . .

There is an older gentleman in my church family who has been thru two or three recurrences of oral cancer and has had just about every kind of treatment. Some fellow church members connected us over the phone (he can no longer attend because of caring for his mother) and he is a great, upbeat, helpful man. But the ladies who know him personally rave about how his smoothies are wonderful, curative, etc. No doubt they are, but I am in no hurry to try one. They all seemed to have missed the point that THE MAN HAS NO TASTE BUDS and admits it. If they want to try his smoothies, I would love to watch, but I am not there yet.

One man's cure/help/secret survival tactic is NOT necessarily another man's cure.

Sigh.

Ok Kristen....that is really funny. It reminds me when I had no taste bids and the family still wanted me to cook I think just for some type of routine in life. I distinctly remember the look on their faces when I asked them how it was. They were way to kind so I gave them more the next night. I heard about it...for years.

I worked for the first few weeks of radiation and I had a co- worker say to me, "I don't get why you're so tired, don't you just lay down?"

Ouch, that one is pretty bad.

People are idiots.

Now that I'm a few years out all I get when I show them the concave side of my neck, discolored skin and surgery scars is "You can't even tell!" (or even the more presumptious "The surgeon did a great job." Tell that to the numb half of my tongue)

Uh-huh.

Really? So God is testing us to see if we can think enough positive thoughts? Which God is it? Woden, Khrishna, Allah? Let me know as I must have been praying to the wrong one.

"They practically kill you to get you better".... true but still!

"T"

I just love that the first question always is "did you smoke". It's like people need to believe you did it to yourself in order to feel secure.

Another thing I can't stand is the constant "how are you doing". Contrary to popular belief I don't want to continually talk about it as its always in the back of my head. If I look find and don't say anything just don't say anything.

I did smoke. But my oncologist, ENT, and the tumor board all concluded conclusively that it wasn't related as I had only been smoking for a few years and wasn't a pack a day smoker. When I explain this, which I've stopped doing people always argue.
I'll often say to them "well you go to clubs and bars all the time. Alcohol can cause it too.

Or the people close to you think everything is ok because you look normal. If they could see inside my head they'd know there is a daily mental struggle.

I also love when people ask "can I see your tongue". To which I reply would you ever gave asked me that if I hadn't gotten cancer and an operation?"

I am definitely having problems with family and friends thinking I am back to normal. I suppose its because I don't complain to much to very many people, there are a few chosen ones I whine to. Most friends have no idea how difficult it is for me to eat and when I say something about it they look confused and shocked. I don't want people looking at me like I am a freak but sometimes I wish they knew and understood the difficulties I am going through.

[quote=rosymonroe]I am definitely having problems with family and friends thinking I am back to normal. I suppose its because I don't complain to much to very many people, there are a few chosen ones I whine to. Most friends have no idea how difficult it is for me to eat and when I say something about it they look confused and shocked. I don't want people looking at me like I am a freak but sometimes I wish they knew and understood the difficulties I am going through. [/quote]
Yeah. I totally get what you're saying. I use to be a fast eater and now it takes me forever and people just assume that because you're "normal" on the outside everything must be fine.
Food is like walking in a minefield for us. I never know what I'm going to have a horrible reaction to which gets looks and reactions or when I jump for joy that I can eat something I couldn't previously and get stared at like I'm equally crazy.


It's also, for me at least awkward on dates. After not saying anything and being taken to restaurants where there was no chance in hell tolerating anything on the menu I now just throw it out there. That I had cancer, I'm going to be constantly checked my whole life and food is always going to be somewhat of an issue. And I say if that's not appealing to you or you don't want to deal with it it's ok. Just be honest.
I've had mixed responses. Some guys hang up the phone, some guys say they can handle it or don't care but then get embarrassed or feel guilty if I have a bad reaction to something I put in my mouth or if I have to apply oral gel because my tongue got stuck to my teeth during the night again. And then I get some guys like the one I'm seeing now just isn't phased by it.
I've even had guys say things like "can I see your tongue?!" All excited like its something fun.
I will say my older brother's family is the worst. They weren't there when I had it, had my operation or long 5 month recovery from radiation and won't even acknowledge I had it. They even went so far as to make fun of a fundraiser a friend made for me online and that I was begging for money and being dramatic.

Wow, someone else that is still in the dating scene? I haven't really started dating again but I have many questions and some anxiety about it, can I PM you?

[quote=rosymonroe]Wow, someone else that is still in the dating scene? I haven't really started dating again but I have many questions and some anxiety about it, can I PM you?
[/quote] absolutely!