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How Good We Have It


Connie B

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Hey Friends,

I have to share a funny Lung Cancer story with all of you.

I just learned HOW GOOD WE ALL HAVE IT HERE AT LCSC! :D Now don't get me wrong, I have ALWAYS known LCSC is the #1 BOARD for Lung Cancer Survivor's/Caregiver and I have ALWAYS known how laid back and SUPPORTIVE and KIND and CARING and HARDWORKING Ricky & Katie have always been with everyone on this board and all that they do and have done. So, having said that...............

I was lurking on this OTHER Lung Cancer Board for about a year now. (No it's not LCA or ACOR, but there really are other UNCARING LC Boards out there :roll: ). Anyway, I was Lurking on that board and I noticed over 10 months that hardly anyone posts on that board, not to mention when someone does post NO ONE answers them. :shock::? Well, about 2 weeks ago, I registered on that board and thought I would share a little of me and my story and give them hope and support, and at least TRY to help some of the people on that board, being NO ONE ELSE ever did! (truthfully I don't think people ever go back and check there posts being no one replies)but........ So, I posted my story, and LOW and BEHOLD not one person (out of about 30) never replied to me. Okay, that's fine!

Well, yesterday some lady wrote in asking me how come I know so much about lung cancer and how did I know that smoking wasn't the only cause of lung cancer? She went on to ask me a few other questions as well. So, I answered her. In my answer I shared with her LCSC & LCA & ACOR websites saying they have a lot of wonderful lung cancer inforamtion on these sites. WELL THAT WAS THE WRONG THING TO DO!!!!!! :shock:

Because I did that, they SUSPENDED ME from the site (Johnny on the SPOT! :shock::?:lol:

I just sat here and LAUGHED !!!!!!!!!

Having told you my silly little story, I just want you all to know WE HAVE IT MADE HERE AT LCSC and LCSC ROCKS!!!!!!!!!!!!! :D:D:wink:

Thanks Katie & Ricky for giving us a SAFE, WARM, COMFORTABLE, SUPPORTIVE, KIND, CARING, EDUCATIONAL place to go during these very difficult times in our life. And THANKS for letting us Share other Websites with one an other withOUT suspending us!!!!! :roll::wink:

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OMG Connie - they suspended you???? Like being back in school, huh?? :shock::shock:

This is the only site I have ever been on (except Dr. Wests to ask a question) and have no desire to go to another one. Cause yes, everyone here rocks!!!!

Hope that lady got enough information from you to come on over and visit us so she can see what a REAL support group is!!!

Hugs - Patti B.

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Thanks for sharing Connie. I did visit another site once just because I was trying to find someone else on the clinical trial I was on. I found it very difficult to navigate and surely did not feel welcomed. I think the only person that answered my post was someone who had already switched to this site!

I have also heard from another member here who belonged to another site that it wasn't all that positive and that this one is so much better.

Having said all that, it really was just by luck that I found this site. And really just because of 1 member here that I stuck around at all....I didn't post anything after introducing myself for quite some time and and probably never would have if it wasn't for that member. And if anyone is able to find any site, then it is probably better than no site at all and I wouldn't want to badmouth any of them having not even been to more than one other.

That is funny that you got suspended though..shame on you at your age! LOL

I agree this is a very positive caring supportive site...and much much better than in person support groups although I would dearly love to meet many members here in person.

Sandra

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omg Connie, that's ridiculous, but it would also really make me mad. Don't they know what country we are in--you know, freedom of speech and all! You should share the name of the site, but then no, they'd probably sue you!

I love that we can share with other sites, specifically Dr West and colleagues at cancergrace. I did visit another site for a very little while. Sandra, probably the same one you mention because people were in the process of coming back here when I went on there. It's been awhile and I don't even remember the name. I tell people I don't know how I would have survived this ordeal without this site. Thanks Katie and Rick.

Judy in Key West

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I joined another site for aspergillus survivors (John developed this the summer before he died). I wanted to learn more about it and get some information. I got a couple of nice replies and thought all was well. Then some of the members got into a nasty back and forth which I could not believe. They were so incredibly nasty to each other I wrote and ask to be removed

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Sorry JB but to be totally honest with you that was the first time I was ever suspended from anything in my life. (might be hard to believe, but true)!

One thing about LCSC and I am guilty of it as are some others, is, when we are under the influence of drugs (steriods, chemo's, cancer drugs, antidepresents, heart meds) those meds do wonderful things for most of us, but they can and do play havoc on our personallities/emotions, & attitudes and who we really are. And LCSC (Katie & Rick) knows this and allows us to go goofy/crazy/down right ugly, but they know this isn't the person talking, they know it's the meds. GOD BLESS EVERYONE that understands.

I pop in to other sites just to see if someone may need an extra boost of hope and then I jump in if I can help, but my heart and my home is ALWAYS here at LCSC.

What I found sad about that other board was there really were a few people on that board that NEEDED SUPPORT and HELP and weren't getting it. I can only hope they do a goggle and find us here at LCSC.

I think it's sad what they did to me, and I think it's funny, but I feel bad for people who post on that board because it's a waste of preicious time for those looking for help & support and maybe in time they will find us here.

Oh Judy, before I forget, I did also in my message that suspended me, I did mention Grace and Dr. West on that message too! Shame on ME!

Love & Hugs to All,

Connie

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I am reminded of so many other stories I've heard over the years of other message boards and their moderators and strict rules, etc... unfortunately, freedom of speech doesn't apply to message boards and threads of privately owned websites. It only applies if you are typing/saying something on your OWN website.

What made us different I think was that I was a caregiver and I wasn't someone who did this as a "job" or employed by anyone to moderate content. I was seeking information just like the members here and Rick and I started LCSC simply to find HOPE. Maybe it helped too that we had never been users of any message boards and we just tried to treat people the way we wanted to be treated! :wink:

If this website had been created and an affiliate of a "group" or run by employed staff- I'm very sure it would be like the other sites- afraid of what might be considered "competition", or an advertisement for another organization when you post about another site or event, etc..----Your post will be removed or you might be "suspended" like Connie, as they are thinking of themselves over their members.

Instead, when you come here, you know that YOU are the reason we are here and we think of our members above anything else. It's simply about support, survival, and hope in as many ways as we can provide it.

I'm sad thinking about those other people on that other site who are getting limited support and information.

I think it's important to share information to educate ourselves. For example, while we can't answer med. questions here, my friend Jack can on his website. (And I had a link here to onctalk long before I became a member of the board of directors of GRACE)

We share information about our treatments, different facilities, other websites that do different things than this one that benefits a lung cancer survivor- it helps when you're fighting this disease to have access to all the information you can.

So good for you for trying to help others. We are pretty high in the search engines, I think positive thoughts that those people will find us eventually.

xoxo

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