Relay for life....it hurt tonight.

[Nushka]

Tonight I walked in my second relay for life. The first year I was sick I was on chemo when it came about and was too tired to walk. I went feeling pretty good about it. I got there and went to sign in. The lady asked me the general questions and when it got to the place where it said what kind of cancer I said lung. The first thing out of her mouth was "Oh, I guess you smoked". I wanted to hit her very badly. Instead I walked away and got as far from her as I could. Now this would have been bad enough from the people that didn't know better but this lady worked for the American Cancer Society. Can you believe it? We all try so hard to educate and then it hits you in the face and it hurts. I walked but not with enthusiasm and came right home after. I felt ashamed. Then I got mad...the ashamed again. I wanted to scream. I know you all understand, and I am ok now...but the more we can educate these people and tell them about all of our friends that NEVER smoked that are sick, the better.

I'll quit fussing now.

Nina

[ginnyde]

Nina,

I am sorry. We need to come up with some response to that remark - let's get some input from everyone here.

[Patkid]

Hugs, dear. People in general are so un aware of the pain we can cause in a careless moment.

I am no help w/ coming up w/ a retort or response.

When folks find out that my sister died of SCLC at age 50 I lie. I tell them she never smoked.

It is easier than trying to tell them what a vibrant funny loving caring smart giving gift she is to all who knew her considering they have already judged her.

Pat

[SDianneB]

My response would be: "Oh, and I "guess" you were never taught to make such assumptions about other people, much less to have the grace and good sense not to say such things that you have no knowledge of."

What a jerk. I think I would have told them I'd keep my money and time and energy and donate it elsewhere until they can educate the people holding these events for them.

DI

[Cindy RN]

I have no idea what to say.

I DO KNOW what I say when someone would say have you gained weight??

I would say "WHAT???? I have????? Oh my!!!!! I had no idea. How could you tell????

Cindy

[Addie]

Well, I tend to get really smartmouth in situations like this. I might not always SAY it (usually do not say it)....but I think VERY sarcastic thoughts!

I'd have WANTED to say...."No. I didn't smoke, but I used to have lots and lots of indiscriminate and unprotected sex!! Isn't it interesting that I didn't end up with a sexually transmitted disease instead of lung cancer???"

Don't let the turkeys bring you down, Nina!! You know...years ago there was a women's golf tournament here that supported the American Cancer Society. We later found out that for our "donation" of $150., we got a round of golf and some rubber chicken at dinner and the rest of our entry fee went to buy new typewriters for the ACS staff!! NOT A RED CENT WENT TO RESEARCH or to help cancer patients!

A good many foursomes dropped out after that...and the next year the tournament was cancelled! A few years later a local cancer support center opened up and THEY now sponsor a golf tournament, the proceeds from which ALL go to this local support center. The tournament is wildly successful and fills up every year!

Not everyone who works for a charitable organization is a compassionate person...and not every charity operates on fully noble principles.

I too wish there was ONE pat statement we could all make to those who are ignorant enough to bring up smoking when someone says they have lung cancer. I mean, when someone has a heart attack....is the first question they get, "Oh, I guess you ate a lot of BigMacs??"

You are at the Relay for YOUR purposes, Nina...so let that be enough. Ignore the "turkeys" and do your walk for everyone HERE and everyone, everywhere with lung cancer.

Or...next time someone asks, "What kind of cancer?"...just say, "The kind that required chemo!" and walk away.

[Frank Lamb]

Yes it can really ruffle our feathers sometimes.We notice it more and are angered by it more because we have and are fighting lung cancer.

I always respond to that with No-- I'm a non smoker (present tense.)No one needs to know what my past tense was.

[stand4hope]

Nine,

I'm so sorry that ruined your day.

I think it's best to answer a question (or statement) like that with a question.

I would simply say, "Hmmm. Why would you say that?" or "Hmm. Why would you ask?" Be kind, but look them right in the eye when you ask and wait for an answer. They will either apologize, fumble around or come right out say that they knowthat smoking causes lung cancer.

Then you come back with another question. Did you know that 15-50% of people with lung cancer are nonsmokers or never smoked? Just take it from there. You get the picture. I would then leave the conversation without giving him/her an answer, and I'm sure they won't ask you again.

Everyone, please remember that 90% of the people that say ask this or think it aren't even thinking about how rude the question is. It just doesn't occur to them. Most people really aren't rude and wouldn't hurt your feelings for anything in the world, and would feel really bad if they knew. They just simply need to be educated. We can do that without making them feel bad. If you would use this type of technique, I don't think he/she would ever ask another lung cancer patient that question again.

Of course, a small percentage are going to be buttheads no matter what - just forget them and move on.

Big hugs to you, Nina! You have nothing to be ashamed of.

Love,

Peggy

[cathy]

I'm sorry Nina, I completely understand how you must have felt..Hopefully by you walking away from her without a word she got the hint..

[cindi o'h]

So sorry this happened to you, Nina. You didn't deserve this. Just an ignoranus, right, Ginny?

That's a dumb butt in case you were wondering...

Cindi o'h

[Connie B]

No Shock to ME !! ACS does NOT sympathize with Lung Cancer Survivors, for the most part. They honestly do very little to support LUNG CANCER ISSUES!

They DO however have lots of information on SMOKING CESSATION PROGRAMS! Lot of good that does, once your dealing with lung cancer issues. Oh well!

So sorry you had to go through that. It honestly should never happen no matter where you go! It's just WRONG!

I don't do RELAY walks anymore, until they start paying more attention to LUNG CANCER ISSUES AND PATIENTS!

Hugs,

Connie

[Debi]

Nina,

I am so sorry that this happened to you, I felt your disappointment and hurt through your post.

I don't have any answers either and have been put in the same situation. It reminds me of when I stopped drinking and learned how ignorant people could be. I would tell people that I was an alcoholic and they just wouldn't understand, they would look at me like I was "weak" (people even said that), and ask me stupid questions like, "Why don't you just slow down?" Duh! I always felt like even my close friends thought there wasn't such a thing as alcoholism and that I just didn't have any willpower (I must have heard this HUNDREDS of times). Like the shambles my life was in was something I asked for. I could go on forever...

My point here is I knew that I was an alcoholic and I never stopped telling people that I was a recovering alcoholic when the need arose and sometimes when it didn't. By putting it out there, among other things, it took the "shame" that others wanted me to have, away. When someone asks me if I smoked, I look them straight in the eye and say "yes, I did". Sometimes I want to follow it up with something combative like, Your point? or another cutting remark but I really don't think that the person is intending to be small-minded or vicious. They just have their preset ideas and notions about certain things just like we all do and have never been in these shoes. They have no idea of the hurt their comments bring and I think we need to stop giving these people the power to make us feel bad. Rather than thinking of something to say, we need to look at changing our emotional reaction because we all know there is no shortage of ignorant people out there.

This is all easy to say of course, and I'll try to remember it myself next time when someone asks me if I smoked because I know how you felt too well Nina. I hope your feeling better about it today..

[SDianneB]

I'm with Connie on this one. Now and then I'll check out at Walgreen's or somewhere like that and they ask me to give an extra $1 to the ACS. I tell them I'd be happy to once that organization recognizes ALL forms of cancer.

Grrrrr.

Di

[Snowflake]

Di,

That reminds me of MY last trip to Walgreen's with the hubby...as I check out, I was asked if I wanted to "Give $1 for breast cancer?"

I told her "No thanks, I have my own cancer, and it was free!"

I didn't think Mark was ever going to stop laughing...he walked all the way to the car without a breath!

**********************

Just for the record, it p*sses me off to be asked, too. I'm a lifetime non-smoker, but what a RUDE question!

[Connie B]

Snowflake,

I have a good freind who is a 5 year SCLC Survivor. Well, she went to Walgreens about 3 weeks ago to pick up her perscription for her BRONCHITIS, when the gal behind the counter asked my friend "Would you like to give a Dollar Donation to Breast Cancer Research?"

Well........, my girlfriend went into a 5 minute speal all about LUNG CANCER, well, the gal behind the counter said, "My dad died of Lung cancer and I had NO IDEA that lung cancer doesn't get much attentions, etc..." Well, my girlfriend said, "When Walgreens wants to offer AWARENESS to LUNG CANCER RESEARCH, or any OTHER KIND OF CANCER RESEARCH, THEN you can ask me to donate a buck or MORE, in the mean time, Thanks but I'm sure you'll get lots of people who will donate a dollar to Breast Cancer, HOW UNFAIR!" And off she went.

Just wanted to share that with you.

GOOD FOR YOU SNOWFLAKE ON YOUR COMMENT! GOOD ONE!

[kimblanchard]

If she was volunteering, then one might assume that she does care, just is very inept at it or uneducated. I like several of these responses, but maybe the one with the best end result would have been something like -

"Maybe you don't realize how much a remark like that hurts. Please, think it through next time and get some more education. But no offense taken, I think you just don't understand yet. Have a good day."

or if you thought she was being deliverately ignorant - you could be as blunt and says "What a mean thing to say." Then walk away. And have a good time in spite of "some people."

[kimblanchard]

I am very sorry you were put in that position and I hope the bad feelings have passed. Like we used to say about men - one man is only worth so many tears. You know? (no offense, good men) Best wishes, Margaret

[SJAS]

Oh my gosh, I'm still cracking up about that one Becky.

Sorry to show up so seldom these days. Work, medical issues,teenagers...etc. I just popped in quick but wanted to share my ACS experience.

We're still trying to set up a group in no. Calif to make sure that at least something is planned for LCAM. ACS has been pretty much unresponsive. They did give me the name of an ACS staffer who lost his nonsmoking wife 2 years ago. I was thrilled thinking we had an "insider" to help. Wrong. He told me that ACS needs to put its $$ where they get the "most bang for their buck" and that is to focus on smoking. He also said that there isn't as much funding for LC research because "there just aren't many promising options." (Heard of "chicken or the egg first...?)

One more thing on Relay for Life. My son volunteered to be the team leader for his school. In the literature he brought home it said that ACS funded research which "established smoking as cause of lung cancer." Not "a cause" or "one cause" just "cause" period. I tried to protest to the national ACS - to no avail.

[kimblanchard]

There are plenty that are not just sick, but dead.

Curtis

[stand4hope]

I've been thinking about this ALL day. I liked Frank's response, and I liked Debi's response a lot. Maybe you could answer the question, but just take the opportunity to educate the person. I also liked Margaret's response: "What a mean thing to say." I like that especially if you feel the person asking is being judgmental.

I was going to change mine and say drop the question "Why did you ask that?" and just start off with "I get asked that a lot. Did you know that 15-50% ......."

Anyway, after I read Debi's response, I remembered that's what my husband does. Yesterday, at the onc's office, before we got to see our regular onc, we got one of those "baby oncs in training", you know that fumble around with what to say. Well, he got hubby up on the table to check the lump and asked him, "Were you a smoker?" He said, "Oh yeah! Heavy smoker! 3 packs a day!" The onc is just kind of nodding his head, and hubby lets there be a long pause and stares him right in the eye and said: "30 YEARS AGO!!"

I don't think you could ever convince him that his lc is because of smoking. He worked in a gas station as a teen until he was about 25, and has worked for Eli Lilly (pharmaceutical co) for 32 years, so he's been exposed to all kinds of chemicals his whole life.

Peggy

[Kasey]

Okay - my ACS experience.

I had extensive open chest surgery. Surgeon recommended the exercises for breast cancer patients (makes sense - chest exercises) called Reach for Recovery. Suggested I ask my local ACS for them. I called. We were all friendly, etc. She would send what I needed right away. Then I asked about support groups available. She was ready to give me (right there on the phone) all the contacts from the different hospitals and telephone numbers as well. Then she mentioned breast cancer support. I told her, "No, I am a lung cancer survivor. I am looking for a lung cancer support group."

Now remember - she was ready to give me all the info over the phone at that time. All of a sudden I get this, "All the information is in what you will be receiving in the mail." END of conversation. Once it was established I was a lung cancer patient, survivor, WHATEVER - she was done with me.

Sad, but true. Not sure we can change this, can we?

Kasey

[Maryanne]

I know, I went through the same thing in a supermarket, they asked about the dollar for Brest Cancer, I told her no, and proceded about the no funding for LC. I don't know why I went into that, but I guess I was just a little peturb about it always being Breast Cancer.

The girl just symphasized with me, but really I could tell she didn't really care.

Maryanne

[Connie B]

Kasey,

As for your comment about "Can we change this?" Well, I haven't seen any change in ACS for the last 10 years. I have had Lung Cancer Support Group members come to group or call me with some very sad and hurtful stories in how ASC treated them once they learned they were Lung Cancer Patients/Survivors.

We had our First Lung Cancer Awareness Event here in Minnesota back in 2000. Well, long story short, we had asked ASC on several occasions if they would like to be a part of our WONDERFUL event that was being held at our STATE CAPITAL to BRING AWARENESS to LUNG CANCER, and sadly enough, they Declined each and every time we asked them to join us. BUT, I will say this, The American Lung Association came and lended us a WONDERFUL hand and praised us for all we did and do to bring Awareness to Lung Cancer.

I wouldn't walk across the street for ASC. And I was a volunteer for them for 3 years. (another story) NEVER AGAIN! They are all about MONEY!

OH SOOOOO SAD!!!

Love & Hugs,

Connie

[Nancy B]

I walked the Survivor's lap at a Relay for Life this morning. All over the place were signs about quitting smoking. I had printed out the ad from the Wall Street Journal about the gal who couldn't quit smoking, because she had never started. I took it to the booth that hands out information and asked if they would post it and they said they would be glad to. I didn't contribute as I like all my donations to benefit lung cancer concerns.

Is there a place to donate that you know the money is going for lung cancer research? Before I got hit with this again, I was looking into doing a Run for the Lungs marathon for the Lung Cancer Alliance - I may still try.

Prayers for all.

Nancy B

[SJAS]

A further thought...How about if we all make copies of this thread and walk into our local ACS office and give it to the director? Or send it to the national office of ACS? How about our local newspapers? Wonder if ACS would respond if they were getting a lot of "heat" during this high profile time.