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An interesting topic...born out of another thread


Nick C

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How can we as advocates maintain a relationship with someone who "should" feel like we do about LC, but they really don't care/want to care about lung cancer?

I have this issue in a lot of places. I have a friend who has lost her mom to LC...but she doesn't really care at all about lung cancer. This has always confused me...

It's also always confused me how others who knew/cared about my mom don't care about the cause.

I have a girl who is the ex-wife of a frat brother I wasn't SO close with and every year she contributes to our golf tourney. I don't even know if she's been touched by LC. But she cares...

I didn't put this in the grieving thread...it isn't a grief issue. It's a how do you cope with/live life with/not resent when people don't care about lung cancer. And even worse when those people, from where you are sitting SHOULD.

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Nick,

My response is that you can't change how most people feel or deal with issues like lung cancer. My Mom passed away from this in '83. I (and my Dad) wrote a few letters that first year, and dropped it after that, until I got my dx.

There is a lot of pain and suffering in the world and I think we can only absorb so much. I feel a lot of compassion towards people who are in so many troubled circumstances but I can't give time, money, or energy to all of them. I've thought about this a bit as I still have a will that gives $ to non-disease causes - education, arts, nature. I think we need those in the world, as well as a cure for disease and support for patients, survivors, and caregivers.

I assume others have their own priorities. Sometimes, it may be putting food on the table or keeping a roof over their head, and sometimes it may be buying the most toys or eating in the most expensive restaurants. These can change over time and depending on the circumstances. Organizations such as LUNGevity give us a framework for the grief and need to do something, but retention in any organization is hard.

Thank you so much for caring.

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Hi Nick,

I understand the context in which you write this too. I agree with Steph, in that there are so many distractions in this world, and not everyone will have the same passions that we all share.

Because of my many experiences with cancer, obviously I advocate big time for all cancers. Lung cancer is the one that has most affected my family, so I advocate hugely for that. And yet my brothers? Zero interest.

Part of this, I believe, is the stigma. So MANY people still believe that lung cancer is a disease that is caused by life style. That is why it's imperative that we continue the work we do in this. When I tell people the accurate statistics of LC, they are shocked. They feel vulnerable as well. They just assumed that you only got it if you smoked, and if you smoked, well you deserved it, it's a consequence of poor choices.

Katie taught me that I can have compassion on these people, because they react as they do out of fear. The statistics on LC long term survival are so grim, that it's a highly feared cancer, and people hope they are exempt.

As we know, no one is exempt from this disease, so we continue on in our work, and hopefully change the world, one person at a time.

Thanks for the post. It's a good one!

Judy in MI

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Hey Nick ~ I agree with the others and all they had to say. I have some ~ no MANY ~ friends and close ones who contributed to the walk I did the first year. One actually said to me, as she donated her $10.oo, that she hoped this wasnt going to be a yearly thing. I assured her that it would be. Then there are others ~ not real close friends ~ who contribute EVERY year ~ more than $10.00 too. The first year I walked I raised $3500: the second year ~ $3000: the third it was $2500: and the last 2 years it was under the $2000 mark. Close friends, who are not struggling to put food on their tables and such, just are disinterested. I am (or supposedly am) a Good friend. Sure makes me feel I am not very important to them. I also cannot talk about LC or my checkups or scares or anything with them because I am tuned out. When I actually confronted one of these ladies, she denied knowing what I was talking about :| .

So..............I put them in the category of 'good times friends' ~ meaning as long as we are having a good time and I don't mention LC or bring attention to the fact that I cannot do all the things I did before things are okay. All these people I keep in a separate box and now think of them much differently than I did before.

Long story to vent here, Nick. Thanks for the opportunity. Bottom line is this ~ it's not important to them in their life at this time, so don't bother them with it. But here is one last issue. I asked the gal who had done my hair since 1979 to donate to the first walk I did. Keep in mind that she is the shop owner and I tipped her GENEROUSLY ALL those years. She said her kids ~ all adults and out on their own with good jobs, etc., etc., ~ were her charity. Now 6 years later her son has ~ guess what? ~ lung issues. I get him sent to NIH to my doctor and he gets all fixed up Turns out it was not LC but my guy helped him. All of a sudden, When is your walk??? I want to contribute. I say HOGWASH!!!!

There, now I am done!

Love you, Nick, all all who continue caring!

Kasey

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I understand this more than most because I have been asking people to care for 9 years....and i've seen all kinds...even people who have had lung cancer and are now survivors--tip-toe around the issues but not wanting to be involved or seemingly care. Even some people who have been on LCSC...People who have lost spouses or parents or relatives or friends....my own family...every single one of them except fpr my husband and children (who quite literally have no other choice but to be on this ride with me) can walk away and "move on"

I agree with the others---people have different priorities and personalities and focus.

One of my best volunteers has never lost anyone to LC, but she lost her dad to heart disease around the same time as I lost mine and she misses him so much, and in watching me talk about my dad and my event she began helping me and now she loves our walk.....

For some people, it's easier to move beyond, for others, they couldn't stand the thought of living life without trying to make a difference.

Kasey- I'd love for you to come to Hope Summit next year.

The most amazing thing for me was riding in that bus to the concert--at the front seat near the driver--and behind me hearing all the survivors, talk about their lung cancer, their surgeries, side effects, stigmas, chest tubes even! And for two straight days that's how it was and it wasn't morose or angry- it was affirming and comforting and a relief that for the FIRST time (ever for some, in a long time for others) they could talk about their LC openly and often with people who really understood and really "got it".

You can't make people care...it just has to hit them in the heart and oftentimes if you give them something to do, they will feel like they can make some sort of difference.

You do your mom and all of us proud Nick.

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I'm not happy with my ability to advocate yet. I tried once when I was feeling good and the local reporteR gave false promises and left me flat. Mostly I struggle to be well and donate each year to a couple of LC events.

This thread touched on a fear I've had that my life centers around LC. Most of the friends and family I am close to are in some way linked to LC. In my mind that shouldn't be good. But it's hard to be around people for any length of time and not talk about the struggle to stay alive beyond 3-5. I find myself jokingly saying that now I have my eye on the five (I passed the three). I'm not sure this is exactly what this thread is about except I have a friend who hosts an annual event and she has a rule, we're only allowed to talk about our health issues for 5 minutes. For her it's the aging thing. Old people talk about their health issues and we're all around 66-67 but we're not old. And she has another friend with chronic LC but I don't think she can let her mind really wrap around it. It's just easier to be with people who get it.

Judy in KW

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The most amazing thing for me was riding in that bus to the concert--at the front seat near the driver--and behind me hearing all the survivors, talk about their lung cancer, their surgeries, side effects, stigmas, chest tubes even! And for two straight days that's how it was and it wasn't morose or angry- it was affirming and comforting and a relief that for the FIRST time (ever for some, in a long time for others) they could talk about their LC openly and often with people who really understood and really "got it".

When I was at the Hope Summit 'this' meant a lot to me. I had not ever been around other lung cancer survivors and it was great to talk to people who knew exactly what I had been through. I don't normally talk about my lung cancer - I figure people don't want to hear about it so I don't talk about it a lot. I do talk about funding for lung cancer research whenever I get a chance.

Paulette

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Thanks everyone, such great responses. There sure is a lot here!

I saw a lot in these responses that hits really close to home.

I know no one asked me to do this golf tourney, and so I never take it personal whe folks don't golf/help/contribute. I really don't.

I guess I just feel, well sad, that folks don't look at the opportunity to help as a blessing...not an annual "curse".

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KW Judy, I saw your post in the Air today, and this one too. It made me sad to think you can't get together with girlfriends and be you. I understand her concept that she does not want the "girls" to talk about old lady issues. However, surface friendships that never get to the heart of things that are important are friendships that I've let go of.

I had some "friends" like this. We'd get together and everyone had a stupid fake smile plastered on their faces. They all talked about how wonderful their lives were.....blah....blah....blah......superficial, surface, fake stuff.

I don't want to waste my time on stuff like this anymore. It's not that I want conversation dominated by LC, I don't! However, I want to be me, be real, and transparent.

I so understand. I have a post I want to write later, so I'll be back!

Judy in MI

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Judy, I obviously painted a slanted picture of my friends and my weekend. There are several women who call me through the year and are very interested in my health and well-being. The hostess is one of them but in the group at the shore she wants us ageless and fun lol. Can't knock that. A big part of this problem rests in my own defenses. I had a tragic childhood but always smiled and played the part. I was the fun, funny girl and I now have trouble keeping in character. There, that was honest lol.

Well now, this is starting to feel like therapy and been there done that!

Judy in KW

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I think a lot of people feel torn about things that they care about and things they care about on behalf of other people. After feeling really conflicted about things from my own perspective I think the issue might be more complex than people not caring--at least for some people.

I tend to be the kind of person who cares deeply about a lot of things. I went to a camp that provided services for kids with disabilities one year back in high school and was hooked. I worked with kiddos who had autism and suddenly I wanted to be active in anything that had to do with supporting families affected by autism (in fact I ended up going to school for a degree in special education). Fast forward a few years and my Mom gets Lung Cancer. I learned the facts and stats and wanted to mobilize. Fast forward a couple years and I end up having Postpartum Depression. I learn the facts and stats (especially regarding people in the military family demographic) and I immediately wanted to mobilize. Fast forward a couple of years and I get a rare tumor. I learn a lot about these tumors and find others dealing with it and... well you get the idea.

On top of that, in my family I have an uncle who died from cancer on his adrenal glands, an uncle who survived hairycell leukemia, an uncle who survived lymphoma and prostate cancer, and an uncle who survived kidney cancer--that's all on my Mom's side and not counting my aunt who survived breast cancer and my grandfather who died from stomach cancer... Or my friend who died of pancreatic cancer. Or my dear friend whose baby girl was born with hypoplastic left heart syndrome AND my husband is in the military so there are whole lot of other issues that I should really care about--wounded warriors, war widows, and morale, welfare, and recreation.

So... If I gave money to the organizations represented by things that have affected people I've cared about, I would literally go broke. Even if I gave of my time and my money even just to the things by which I have been directly affected, I'd be working 24-7 and also in the poorhouse.

I think a lot of my family, honestly, probably wonders why I am so 'lung cancer specific' in my support given the multiple ways we've been effected. THIS is why I wish the American Cancer Society was a more effective organization which put it's moneys toward supporting all cancers in a statistically equitable way. I DO WANT to support any endeavor which globally leads us closer to cancer cures and cures for rare medical maladies.

I don't take it personally when people don't support me or do so to a greater degree one year and not the next. Chances are their plates are full with causes they deeply care about and people they dearly love who are struggling too. AND sometimes I focus more on loving the people in front of me instead of the charities that raise funds to fight the specific diseases. Sometimes my resources--time, talent, money etc. go there.

I've felt guilty at times about pulling back from here and personal activity for Lung Cancer. Since I had my own different health concerns this last year I pulled out of nearly everything and haven't figured out exactly how and where to re-engage. Do I support just the things that are effecting me now? The thing that is the most deadly? The thing that effects the most people? The thing that is more under-represented? The thing that is so rare that people feel absolutely isolated and unable to find support? I don't know. But I just can't throw myself at everything anymore and it's becoming more and more apparent to me that there will always be an important cause which personally affects me. I can't help but wonder if it's the same way for a lot of other people... Especially in a world of Facebook and Blogs which have the amazing capacity to draw our attention to the stories of others who re suffering, but the flipside of that is that almost become numb to that as a result.

I guess what I'm saying is, it might seem callous to us. It might seem like people don't care. But maybe some of those people really DO care but have focused themselves somewhere else. Maybe it is compassion fatigue. Or maybe it's that they haven't been gutted by the experience of being personally effected yet.

Anyway, that's kind of where my thoughts are on the issue right now.

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