Dealing with People's Questions/Comments/Silence

[Treebywater]

This has been mentioned in another thread already, but it seems like every day since Mom's diagnosis, I am... processing through my feelings about the way people react and the feelings of support/lack thereof I've felt since everything came down.

It's funny, I don't think people can say anything right to me right now, but people not saying anything is even worse. I don't like the questions, 'How are you?' or 'How is your mom?' because I don't know if people really want to know.

When people DON'T ask or I get through a whole conversation with someone I haven't talked with in a bit, but who knows the situation without anything even being mentioned, I wince at that, too. Don't they care that this is happening to us? I know that they do, but likely don't know what to say and/or can't or don't want to think about something like this happening to someone.

Apparently, when my folks have told a couple of people, they've had to deal with... of all things... lectures/I told you sos about smoking. As if anyone ASKS for a disease like this.... That makes me the most angry.

So... I feel bad for anyone who tries to talk to me about this stuff at this point (aside from you folks with the 'been there, done that' t-shirts), because unless they are extremely intuitive and sensitive they're damned if they do and damned if they don't. And at the same time... I am finding that the feelings of isolation from dealing with this as well as other uncertainties and impending obstacles, is no fun too.

I guess I need to stop being so over-sensitive and let people deal with it and me as they are able... and I'm sure my expectations are too high and my communication about the issue haven't been the greatest.

Anyway... I guess I just wanted to muse about that for a second. *Musing finished*

[TAnn]

Treebywater,

I know how you feel. I have found over the past 20 months as I have battled this disease that people just don't know WHAT to say to us. Many have told me that. "I haven't called because I just don't know what to say". Some of these people are my closest relatives. I can understand how they feel, and I know it is hard for them, to see me like this.

I've gotten to the point when someone politely says, Hi, How are you? I just say, "fine thank you". Sometimes if I'm feeling a little cranky, I'll say, "I'm ok, I could complain, but I won't". I always get an uneasy laugh with that one!

We are all in a difficult situation, and have to accept that most people are not comfortable talking about cancer. That's why I am so glad I have everyone here. Like you said, we've all been there, done that. I've learned not to take it personally and understand that for the most part, they do care, they just can't get past their own feelings in order to be able to know how WE feel.

Hang in there, and try to take it all in stride.

TAnn

[cindi o'h]

Hi Treebywater,

I tell ya....good thing you can come here to vent. I can certainly relate to what you are talking about! It is another process. These feelings. Hurt, sadness, fear, isolation, lonliness. All come with the package...

I remember after I was first diagnosed, I felt I had to present myself to the world and couageously come out of the closet. I was scared spitless. I didn't have time to think through things.

I had been invited to a New Year's Eve party and I knew most all of the people there, tried to make excuses why not to go and was shoved into this situation at the goading of a well meaning friend. This one man decided to call on his cell phone one of "our" buddies... from across the room I heard my name... "Cindi" he says in his loud (he has a loud voice) whispered voice into the telephone"...no, not that Cindi... the other one...the one with KAN'-SUR"

I looked at him and again, he "whispers" CANCER! You would think that he was announcing that I was dead or had a monkey stuck up my butt or something really nasty and awful. At the time, it just felt dirty. Now when I look back on it, it makes me laugh. He is an idiot. No doubt. Insensitive gossiping idiot.

Depends on how much I reveal to whom. I find most people don't want to know. They really don't. As long as you are still ticking, then everything must be all right... I am amazed by some of the support that out fellow board members have in their communities and in their families. I think it is just great.

Me? I gotta go looking for support. If I am going to survive this deal, then I have to unload somewhere. How 'bout you? I need a place that is safe and nurturing and with effort, I found my haven, with other people who are going through other serious illnesses. They "get it" too.

One of my friends said that I should get a Tee-shirt made that says,

"Ask me how it turned out" Isn't that funny? Most of the time, now, I don't care who knows...lung cancer, lung cancer, lung cancer... and I get to say it with a grin.... yep still kickin'...just too mean to die! How are you doin'? Then I get to listen to the bad boyfriend story for the umteenth time. That's a yawn.

The way I kinda got it figured, is that we are all in this here world with our individual troubles, just doing the best that we can. Some have a lost job, lost pet, spouse, grandparent, kid trying to get into the right college, overwhelmed with work, child, health, or like my friend, worried about the BF and what their next vacation will be.. it is a problem...it really is, for her. Mine is a problem too....for me...it really is. Some of them "get it" and some of them don't. I am kinda glad I "get it".

I figure I got this suffering put in front of me for a reason. I am not clear what it is yet. But, I will give it a whirl. As long as I have my Healing group that listens to me, I am pretty much good to go. I do need my time though, before I can be a good listener for someone else. Lots and lots of feelings. And they change from moment to moment. That is what makes us human. These feelings.

Talk about what is going on with you and your family wherever and whenever it feels safe. You will find safety in some of the people you never dreamed. And some of the ones that you thought you could talk about this stuff to will turn and run. Go back to the ones who will listen and lend a shoulder... The grief has got to come out or else it gets stuck.

And who needs a sticky Treebywater?

You take care of yourself. You are doing a good job.

Cindi o'h

[SDianneB]

Been there, done THAT. Sheesh.

My sister and I had a little go round recently, because of something she says (repeatedly) about when I was in the hospital. Once, when the pulmonologist was leaving my room, she asked him about me smoking. I wondered why at the time, but didn't say anything. (This is the sister who will hog all the time with the doc and ask what she wants to know, and then later act like I know all I *need to* -- feh. )

After that, she tells everyone that she asked him "just in case" I wasn't planning on quitting smoking. So, I finally confronted her about this and asked why she thought anything she said or did would have any impact on my decisions in that regard? After a while of the standard song and dance smoking lecture from her, I finally reminded her that I am an adult -- all grown up at age 51, and will make my own choices. Further, she knows now why I don't allow her to go with me on doctor visits -- because almost the entire medical establishment wants to treat me like a 12 year old, and when my sister tries it, I won't have it from her too.

Of course, she loves me and cares about me, but the truth is that she had a heart attack about 2 years ago and was really sick for a while -- much sicker than I've ever been. And as bad as cigarettes were and are for me, the stress she keeps herself immersed in 24/7 is worse for her with her heart disease.

Do either of us *deserve* what we got in terms of illness? No, I don't think so. But it is a consequence of the way we led our lives, and so we have it to deal with. I told her that since I DID stop smoking, that it's now her turn to take care of herself with the same kind of conviction she had just after the heart attack. We'll see if it made any difference.

Interestingly, when she was sick, there were people lined up at the door with food, offers of help, etc. -- for months. While I was in the hospital, many of those same people would call and talk to her about me, but not talk to me, and I saw about 2 of them -- briefly. The rest stayed far away as if I were contagious.

Unbelievable.

Di

[Don Wood]

Yep, that's a real dilemma. We've all been there. My approach is to realize that is the way it is, get over it and move on. Some people truly care -- they just don't know what to say, and sometimes they say the wrong thing without realizing it. If you want to weed out the ones who want to know, just be honest with everyone, and give them a quick update. Those who really don't want to know will stop asking, and those who really do will continue to keep in touch. People will surprise you both ways -- some you think would respond will not, and others you really didn't think would will. It's a funny world. Just as ourselves, you don't know how you will respond to cancer until it happens. Naturally, those of us who has been there usually respond more appropriately, so part of it is education. Hang in there. And forgive those who are ignorant or just hopeless. Don

[SDianneB]

Yep, that's a real dilemma. We've all been there. My approach is to realize that is the way it is, get over it and move on. Some people truly care -- they just don't know what to say, and sometimes they say the wrong thing without realizing it. If you want to weed out the ones who want to know, just be honest with everyone, and give them a quick update. Those who really don't want to know will stop asking, and those who really do will continue to keep in touch. People will surprise you both ways -- some you think would respond will not, and others you really didn't think would will. It's a funny world. Just as ourselves, you don't know how you will respond to cancer until it happens. Naturally, those of us who has been there usually respond more appropriately, so part of it is education. Hang in there. And forgive those who are ignorant or just hopeless. Don

Reading what Don wrote led me to another thought -- about *etiquette* I guess! I don't want THE topic of conversation to be me and my cancer, but I'm happy to talk about it to people when they ask. I also love getting opportunities to tell people about lung cancer, and encourage them to insist on being checked periodically. I'm getting a little better at it, I think, but it was difficult at first for me to find a happy medium -- somewhere in between being an obnoxious "sick" person, and just discussing my situation with those who are interested!

Now, I don't bring it up, but the button I wear all the time ("Cancer Sucks") is rather a hint! I try to guage interest by facial expression -- if they are yawning and about to go belly up, I figure I've bored them enough.

Seriously though, it takes some time to go from having *cancer* on your mind ALL the time and wanting it to be the sole topic of discussion to just having it come up as a part of conversation.

I guess that would make a good New Year's resolution -- to work on that and improve it somewhat.

Di

[daggiesmom]

Dear Treebywater,

As far as what people say and how they react when they learn you have LUNG CANCER, yes, it is amazing. Yes, you definitely get a different reaction to someone who has a "sympathetic" disease, such as heart disease, or even breast cancer. People relate very differently to those diseases. Probably because the general population doesn't relate those diseases to how the victim got the disease (self-inflicted being the last possible reason). In part, I think people have alot a fear inside about what they could possible come down with, so when they hear cancer, especially lung cancer, they do a quick mental rundown even as you're talking to them - you can see it on their faces, "Thank God I quit smoking, or I didn't smoke, or the "Well, what did you expect" face. People, naturally, are very concerned about themselves and many times are too busy processing the news you just told them about yourself. Once they do know your situation, many do feel it is self-inflicted, you are stupid for having caused it and you should have known better. I know that's cruel, but let's face it, some people are cruel. I've had people tell me that "people should take responsibility for their lives and smoking is irresponsible" or " I'm looking for the hole in your head" or "people who smoke in front of their children are unfit parents." All those comments hurt me very much. But then I realized that these people are reacting out of ignorance and fear, so I learned to let it go. It took awhile, but I also realized that I've been grieving for over two years now. Cancer causes you to grieve for your loss of health. These people do not realize that. So try to look at it from the perspective that you have to fight your own battle, put up your "dumbell shield" when the comments come and realize that this board is where you can blow off steam from the nasty comments. We will listen and give you the energy to go on. There are many compassionte and caring people here for you.

Joanie

[Snowflake]

Joanie...and Val,

When I tell people that I have lung cancer, OF COURSE the first question is "Did you smoke?". Now, those of you with that guilt from smoking (that you should NOT have, but many of you carry) would be "shamed" by these people, incriminating you on the self-infliction BS... But when I say "Nope, never." they REALLY start to squirm. See, many of the people that would condemn someone because they "deserve" the disease are one of the 90% of smokers who don't get cancer...or someone who did smoke and has stopped....and gee, sure does make 'em uncomfortable to know that all their preconceptions on lung cancer are wrong.

Hey, I'm with Jack on this one all the way, smoking is NOT the only cause of lung cancer, and until we can separate the stigma from the disease, people are going to keep being diagnosed with this crap.

As for wanting to talk about it...well, there are days.

There are days I don't mind talking about it, I feel strong, I feel secure and I feel hopeful that I'm going to beat all the odds.

There are days where it all depends on who brings up the subject and if they're just looking for fuel for the fires of gossip or if they really care (and some days, I feel pissy enough, I give 'em an earful of ailments "attributed" to my cancer...LOL).

There are days when I don't want to discuss it, days when I just want to crawl into bed and pull the covers over my head because the monsters are SO big and growling from all corners of the room. I sure don't want to be reminded what I'm fighting and don't want to be reciting odds, statistics, etc.

So, I guess the answer to "what do you do?" is to just do what you feel...and if that involves firing up the beer truck and takin' a few of the busybodies out - well, hey, just ask for the keys. They're hanging on a hook by the back door...

Oh, yeah...and your emotions? LOL - SOME of that is due to being pregnant, donchaknow? If you weren't thinking of chopping off someone's head over something they said or seemed to think about lung cancer, there'd be some other reason you'd want to chop off their heads - like breathing in your space!

Take care,

Becky

[Andrea]

I almost think it is a human reaction to ask if someone smoked. I am getting tired of it too, but I can't get too upset b/c I myself was ignorant and would have asked the same question about smoking before I knew better. Although I wish I never had this education, sometimes ignorance is bliss

For fun twice recentlydoctors (my own doctors, not my moms) asked me if my mom was a smoker and I said NO and saw the shock on their face. In reality she DID smoke but quit 25+ years ago. However I did not feel like sharing that b/c many never smoked.

As for wanting to talk aobut it, I usually do want to, but my mom doesn't as much, so go figure, we can't even get it in sync in the family Just shows taht we all handle things differently

[kimmek]

To talk or not to talk......

I actually like to talk about it, and I think people get tired of it, especially those who are clueless. I am going to do what ever i can so that they understand. I have not noticed so much the stigma with my mom. I kno w everyone from her job has been wonderful to her, and coming from a very small family there really are not that many we have been in contact with. Of course many many different docs and nurses, but I think for the most part they do not judge or at least thats what i like to believe.

Mom will not and has not ever talked about it. She still remains pretty much in the dark when it comes to lung cancer. All she knows is she had it and its gone. Good enough for her. Not good enough for me. Its hard for me to talk to her about it, about things we/she can do to hopefully prevent it from coming back. So even though mom doesnt talk about it, even with me I dont think its as unhealthy as I once did. If someone calls her or we see someone and they ask how she is, she will answer that one question, if they ask more she then refers them to me, and if she starts talking, she gets so nervous and shaking that she cannot even talk. This has started since her dx, as she has never had a problem talking to people before, with out having to take xanax and shaking all over from nerves. Sometimes I think she is the one carring the stigma around about lung cancer, almost as if she is ashamed.

kim

[teresag]

Sander Gilman, in Disease and Representation speaks of our need as human beings to "locate" and therefore separate ourselves from "the Other", i.e., the diseased person who has failed, collapsed.

Quote: "...the fear we have of our own collapse does not remain internalized. Rather, we project this fear onto the world in order to localize it and, indeed, domesticate it. For once we locate it, the fear of our own dissolution is removed. Then it is not we who totter on the brink of collapse, but rather the Other. And it is an Other who has already shown his or her vulnerability by having collapsed."

How can knowing this help? I think by affirming that people who avoid the person with lung cancer and ask if you smoked are only doing what humans do naturally, although it is awkward, and even cruel. It has to do with keeping their own world safe and understandable, and free from the fear of suffering and decline that surrounds lung cancer. It also explains the discomfort displayed when Snowflake informs someone that, no, she did not smoke. Their beliefs about lung cancer, their way of localizing it, is shattered.

Which is not to say that it is okay. It is self-serving and thoughtless to ask someone if they "caused" their own disease. I don't have the perfect retort to those who ask if you smoked. Maybe to take the opportunity to educate them that there is ample evidence of genetic and environmental causes of lung cancer, that squamous cell ca which is most strongly associated with smoking, is on the decline and adeno ca is on the rise. Maybe simply smile and tell them that people with heart attacks aren't usually asked if they failed to exercise. For those who simply avoid the subject of lung cancer altogether, maybe you need to bring it up. "You probably find it awkward to ask about my cancer," might be a good opening line. Or, if you don't want to talk about it, and they do ask, "You know, I'm tired of thinking about cancer. Let's talk about _____." Just a few ideas. Hope they help someone.

Peace in the new year, Teresa

[melaniem]

I've been busy w/life, cancer and chemo and therefore have not posted in quite a while. I seen this post and it is something I have also battled and thought I'd add my thoughts.

When upon hearing about my cancer being lc, you're right, first question is YOU SMOKED?? And the thought that goes through my head every time is "So I DESERVE it?". I guess it shattered my own 'perfect and safe world' as well. Never being a 'heavy smoker', less than half a pack a day, I never thought I'd get cancer, again....another ill-conceived notion about who does and does not get cancer.

I work with the public and see many of the same people every week. There are several wonderful ladies, in their 80's, who smoke.....I mean SMOKE..you always know when they are in the salon because they reek so badly. They have to have breaks so they can go outside and smoke!!!!I know everyone on this site knows people like that.

So..yeah..I've questioned God and all I can come up with is what was in the post several before mine. That we all have our own crosses to bear. No one goes through life un-scathed. What's the saying, that it's 10% circumstances and 90% your attitude toward it.?

I say all that but to get back to the original question of people asking if I smoked and getting the feeling they think I deserve it...... I deserve it as much as an overweight person deserves to have a heart attack, or get diabetes. Never, NEVER, do people say "Well it was all those Big Mac's" to an overweight heart attack patient.

I also think human beings have an innate desire to feel good. The majority of people have a vice, be it smoking, drinking, over-eating, prescription drugs, constant gossiping, work-aholics, working out to the extreme,etc,etc. I'm not trying to justify it, really I'm not, I just think we all have that certain something that makes us feel better or good and I suppose some things are better than others. I'm just saying we all do things that are not the best for us but to label smokers as being deserving IS cruel.

Anyway, that is some of my many thoughts about this sucky disease.

By the way, today I finished my 4th round of chemo!! That's a big YEAYYY, because now i'm done. But I will feel lousy for a week to ten days before I feel like celebrating but I AM glad to know that at this point I don't have to do any more chemo.

Love to all who read this,

Melanie in Texas

[Elaine]

Thank you all for these astute posts. It's also so good to hear from you Melanie. I had been thinking of you and I am glad to see you post.

Thank you Thereas for that Gilman quote. I see that so much on the faces of people.

Supposedly we are the only "beings" who are aware that we will die. (Maybe not.) But even though we have that awareness, we really can't imagine not existing, really--as our point of reference is this world.

I am reminded of a maze created with shrubery in New Harmony, Indiana. Once I had had a little too much to drink and decided to walk the maze.

It was a moonless night. I was with several friends but for some reason, as we walked the maze, we all kept silent. We walked with our hands--and it was frightening to be "lost" even though we all knew that we certainly weren't "lost." Sheesh, if nothing else, the sun was surely going to rise.

We had no point of reference. I am sure all of us have had an experience somewhat like this.

I think of this experience now, very often. It explains the way I feel and the way others must feel confronted with my illness-even though we come at the "experience" from a totally different anlge--my illness and the illnesses of the "other" catch us walking (stumbling) in the dark, with our hands.

elaine

[teresag]

A poignant story, Elaine. Thank you. I'm glad you liked the quote. I had hoped it would help make some of this seem less bizarre to people with lung cancer. It is the unfortunate nature of human beings to separate the "Other" from themselves.

I heard a writer say once, "Writing is like driving at night in a fog: you can only see as far as your headlights penetrate, but still you reach your destination." The same applies to having cancer, I think. The future is imponderable, so just do your best today.

Peace to everyone, Teresa