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what is the Importance??


RandyW

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of LCSC??? would like to hear everyone's thoughts on what is going on?

I have been active here for some many years now and came here seeking info on Tarceva when It came out and never left. that was about 8 years ago or so it seems. I have been without Deb for going on 7 now. after deb died I felt like helping out and trying to make make my voice heard. I do a lot of yelling with many friends on Facebook, I admit that but have loyalties to the cause of fighting the disease. I smoked up until almost 10 years ago last spring. I could get cancer from that and many other things I know. I want to help the world find a cure so if I do I know there is a better chance for me to live and prosper.

I came to LCSC seeking info, and found a lot of caring understanding people here. Most of them have passed away since then. the list is so long you really don't want to think about it but in my time I am pretty good at grief counseling since I began a journey here.

I am here just as much now as I used to be. I stop in frequently and clean up spammers mostly. If I can contribute to a post or question I do that when i think my response could be beneficial. I like how LCSC is run and managed by Katie. She does an awesome job considering all she has on her plate at the same time!

I do miss the old days when things were more Active her though. I used to host a weekly chat room for all of us . this is where the bus trips and the fun of LCSC came in. we could joke and have fun adn then we got back to business until the next weeks chat session. these forums were buzzing all week about support and tips on how to deal with different lines of treatments and questions for me to research. Yes I do moderate for new Clinical trials forums and a couple others. we shared tips on recipes and healthy living, jokes, advice , prayers, inspiration, grief and obituaries.

Since Dr West stepped in and kind of took the helm for the Medical advice I kind of feel left out but not os much. I am a research guru of sorts and welcome a challenge to find info on conditions and problems and trials... Did a lot of work into Cachexia for a few people here!

so how do we get back to caring and sharing? By posting about things. we need to get back to asking about treatments and such to help each other out. ask questions. be inquisitive and curious about things. I see so many post once or twice and disappear. Makes me sad though that they do not seem to stay around..we need to fix things!! but we need to keep doing things and being active in other forums as well .. even a lot of our old regulars are gone that used to be here that I see on FB these days.

OK long enough Rant. Dare ya to beat that one folks...

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Unfortunately not everyone can see the activity level that I do,

Hundreds read our posts everyday. It is a lifeline to so many.

I met a woman yesterday who has been a lurker here for 3 years.

so imagine people are reading your words,,,and it's so impactful for people.

The complaints I hear are only from about a handful and it's about JFF airs not being so active anymore..... honestly I have some survivors who hate that forum..and wish I would remove it completely. ConnieB was one of them. Like so many others she wanted things more serious on LCSC...no other LC site has a "fun" forum...But i leave it alone because we have had it forever and people do like it.

Today we still have our Live Chat (randy, people still use it) and facebook and twitter for the "fun" connections...we also have the good old telephone.

I have SO many people needing one on one support and others who need people to reach out to them who have cancer issues...they need our help and they need connections.... That's what LCSc means to me. It's a LifeLine to people. a safe place where people can talk about lung cancer specific things.

Obviously if people want just for fun postings and fun chats, please schedule regular chats again the chat room...everyone wanted chat but no one wanted to volunteer to host it and remind people about it, and it just became easier to use Facebook.

And always remember that someone new is lurking and needing a lifeline...not discouraging posts.

the folks who started Airs did so as a relief to the other things they were doing....NED posted everywhere everyday many times with information and supporting people, but posted an AIRs maybe once a week....AIRs was started by people who used to use the chat room every Tuesday but didn't have time to meet there to talk "live" anymore so they'd drop a message daily for their friends.

Social media has definitely slowed things down a bit here in- but I don't thnk of it as damaging to LCSC in anyway. It serves it purpose. We have a LCSc group on Facebook as well as a Hope Survivors group on FB which is very active with people keeping in touch and supporting each other.

I also post calls to action and support needs and it's been incredible.

It all goes hand in hand.

People who want to gab can still use the chat room, or Facebook or the telephone, right? It's perfectly OK if people don't want to post about their lives in the AIR. It's a hard forum for people to break into when they are new.

I'm thankful for the moderators and long term members who pay it forward and give back.

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Also, just a reminder....we used to have a great Welcome Wagon of volunteers who would take time out to private message newbies and encourage them to post after having post 1-2 times. That helped a lot then,

LCSC is what you put into it, if you don't put into it, and if there are few volunteers, it really shows.

But I want you to know that an average of 149 private messages on LCSC happen everyday. The posts get clicked and read by an average of 29 individual people during 24 hours. We have thousands visiting and read our site weekly. Post count is about 18% lower than 2 years ago, but traffic and interactions is still very high, and now we can add to it 3 new LCSC Facebook Groups.

You're making a difference by being here. Every word you write is a lifeline to someone else!

If you want to do more, please message me!

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I am very new here. I was very grateful to find a place where were there are other lung cancer survivors willing to listen and answer my questions. Not everyone who visits this site will be comfortable sharing their deepest fears in a forum, but they may be able to read a post from someone else to whom they can relate. And gain some comfort and support. We are all human and all satisfy our needs that suit us best. I like to talk. I ask a lot of questions. I am lookimg for answers on how to live with lung cancer. I have serious questions and I like to hear about what kind of flowers someone planted for their patio. I want to be a well rounded person and don't want my life to just revolve around cancer. When I was going through chemo I had not discovered this site. But, now I have and I have found answers and support for where I am now. I appreciate the people who do post, my thoughts are with those who do not post a question, but gain some insights from the many survivors who have left wisdom and support even though they are no longer here. It is all invaluable. Thank you to Katie B and all those who visitor post on this site. You all give me hope!

Susan

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For me, LCSC was a place to gather information. To be informed. To gain knowledge and understanding of treatments so when I went with my parents to the doctors I could understand what was going on. It gave me the upper hand. I was able to ask intelligent questions.

Also I met some awesome people along the way!

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I'm thankful for the moderators and long term members who pay it forward and give back.

Katie....you are so right about this. I must admit that I wasn't coming around so much after Don passed away because it was so painful for me. I feel terrible because I SHOULD give back and help the new members the way you helped me.

I'm going to change that....get ready to see more of me my dear friend. If I can help anyone.....I certainly will :)

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Good Evening Everyone,

Lots of thought provoking comments to consider,thank you everyone,gosh, wish I had made up a list to remind me of them all.

Whats in a name,Just for Fun?,surely a rose would smell as sweet if it were named differently?did someone in history say that before LOL?.JFF has been my loyal friend since I arrived here over three years ago,its title may not quite embrace all what it is,but its sentiment represents to me something most important,particularly for post dx lung cancer survivors,that life is meant to be enjoyed.The range of posts there may not fit the title,since in a family of friends sharing their lives here,things are not always fun,sometimes we need to just share our innermost feelings to help us through a difficult time.

Long live JFF,one comment that stuck with me,was that this forum was difficult to break into?for the life of me I cannot think of a single reason for anyone to harbour that view,yes I dare say there are long term postees to this forum,but it is not a "Clique" and never will become one,its strength lies in its accessibility to everyone,regardless of whether you are a survivor,carer or supporter of LCSC.

Please if you are a reader of JFF,but for whatever reason are reticent about posting in,for whatever reason,please pick up the quill and write in,there is nothing we enjoy more than welcoming a new writer,your thoughts can stimulate and encourage others to reply.

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Copied from General forum:

Hi everyone! Many of you remember me I know and many are new here. I was just thinking about all the changes both good and bad I've lived through these past 3 yrs since Donald was diagnosed with Lung Cancer.

One of my thoughts was about lcsc when I first joined here. I was so frightened and lost trying to care for my husband and trying to understand what was happening to him and why. I had no place to turn before since the doctors were useless in educating me. I remember my very first post here so many came to my rescue immediately. I remember reading all the heart felt words posted by so many and it brought tears to my eyes. The true feeling of knowing you "aren't alone" ....I just can't find the words to tell all of you how very much your friendship meant and still means to me.

My life has changed so very much since Don passed away. Moving from California all the way to a tiny little town in Illinois....oh myyyy what a change.

BUT.....I want you all to know that I truly don't think I would have ever lived through the experience of that enemy we call cancer without you!

God Bless each and everyone of you! You helped give me a new life! I love you all :)

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I can only say how I found this site and what it meant to me. I was a two year survivor, having surgery and chemo treatments. When I found this site I was so excited because I thought it was a lung cancer support community! The first forum I looked for was the one that was most active, which of course was the Daily Air. I didn't know the history of the Lungevity site, or of any of the different forums. I remember posting my first post in Introduce Yourself, and then made myself at home where everyone seemed to be hanging out - in the JFF Daily Air. I did figure out that you could post things like test results and the like in the other forums, but still a lot of people were using the Air as the 'how ya' doin' place to be, so that is where I stayed.

I didn't even know what the Daily Air stood for. I just knew that a lot of people posted there and I wanted to get to know a lot of people. Which I did. Then when the site got quieter and quieter, I felt sad. Judy in KW was still posting on an almost daily basis, and she was writing about her cancer stuff, and there were days when we joked that we could use this place as our daily texts to each other because it had got so quiet. She did PM me and told me that sometimes it got really quiet, and other times not and to not get frustrated or sad when that happened, so I tried to just go with that.

Like I said, I didn't know anything about this place other than that when I did a Google search for lung cancer support forums, this is the one that came up. Back then I couldn't wait to get to know the stories of the other folks both from a lung cancer perspective but also as a care giver since I was both. And I thought that this would be a place where I could 'give back' to the new ones that would come on feeling as alone and scared as I was and needing a friend.

Then my cancer came back. The Daily Air had already changed and hardly anyone was posting in there anymore. I did still try to use this to get daily support as I went through my stuff, but a lot of the ones that used to be there weren't anymore. There were still some that came on and would encourage me, and I am so thankful for that. But it was not what I thought it was obviously.

After reding what Katie has posted, I can see that I obviously didn't understand what this place was for. It actually embarrasses me now because I shared a lot here that I'm sure now in retrospect I would not have. It also embarrasses me that others that had been around here for years never took me aside and told me that I was way off in what I thought this place was. If someone had told me that I was intruding and trying to turn this into something it wasn't, trust me I would have tucked my tail and run.

And so after Judy died, I tried to think of how we could get some spark back here. I thought if we did Daily fun stuff like theme days that I introduced last week that this would bring some fun back and get more activity. And then I thought I'd also have another daily post where people again could write about their journey as it is happening right now. Clearly I had no idea what I was doing.

It's no wonder I wasn't hearing from the folks that I got to know in my first year or two here. I didn't understand and no one thought to help me understand.

I do now. I won't bother anyone again with my cancer support stuff, or my daily stupid silly stuff.

I see now how fun stuff should be handled.

"Today we still have our Live Chat (randy, people still use it) and facebook and twitter for the "fun" connections...we also have the good old telephone."

Or.

"Obviously if people want just for fun postings and fun chats, please schedule regular chats again the chat room...everyone wanted chat but no one wanted to volunteer to host it and remind people about it, and it just became easier to use Facebook."

Clearly I didn't understand.

And being one of the newbies to the site, I didn't know people's real names to be able look them up on Facebook.

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Judy:

I can't speak for Katie's intentions, but from my own perspective I have enjoyed and been given hope by what you contribute to this site. I have been inspired and given strength by your story. You have been through some very hard stuff. This support community has so many different forums with a wide range of topics. So much good information and so many personal stories shared. Some days I am looking for a serious topic to be answered and some days I need to smile because my heart just can't take any more pain of my own or those who are sharing theirs here in this safe place. I have found both here and you have touched my heart. Please know that. I don't feel like there is a wrong way or a right way to use this site. It is for US! LUNG CANCER SURVIVORS!. I truly feel Katie is an advocate for us and has a true love for all of us going through this sometimes horrifying journey. I wished I could give you a big, long hug after I read your post. I am thinking of you! My fellow Michigander!

Susan

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Hi Judy,

Since my dx,I think I have changed so much from the person I used to be,my family agree,I became more gregarious,relishing the company of others,making new friends,becoming blind to faults in other people,just to enjoy and think of them in positive light,goodness knows how many flaws I have in my character.There are times when I think I have overstepped the mark, perhaps in being too opinionated,there are cultural differences in Scotland and America,so like you,I am not sure sometimes,if my posts may be interpreted differently from what I had intended.

Personally I do find some posts here and in other places that go " against the grain" to my particular viewpoint,but it dos'nt really upset me,each person is entitled to their own opinion.However, again like you,if I do err,feedback for "reallignment" would be much appreciated,that I can still make a positive contribution to the LCSC.

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I can only say what LCSC meant to me in March of 2007 when I found it. Mom had been diagnosed with stage IV NSCLC in January and I began grieving immediately. One night a couple of months later while I was on the Internet looking for something, anything that might help her I found LCSC. It was literally the first time i learned there was hope and that people could survive this disease.

One of the things I always liked about LCSC was that there seemed to be a place for everything. A place to introduce yourself, a place for caregivers, places to share good news and bad and yes, a place just for fun. One thing about lung cancer is that if it robs us of our humor and our laughter it wins far more than it needs to. Sure there is Facebook, this is for people touched by lung cancer. Sometimes when I post something on FB, even humorous, I get crass responses that if people didn't smoke there wouldn't be lung cancer. Well, you know how that sets most of us off. Here that doesn't happen. So, yeah I think it's nice to have a place just for fun on the forum. I think that participation is entirely voluntary and is what we make of it. It was not a place I posted much, but I often read the Air just to see how folks were doing.

I'm also one of the folks that keeps up more on social media these days. I also have to admit that after mom passed, I found it very hard to come here and greet newcomers with hopeful stories. I need to get over that. We need to help each other because it is such a lonely journey. That was brought home when I read that Donna Summer kept her lung cancer a secret because she was ashamed. We need to help each other and all those out there who will need us one day.

Susan

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I absolutely did not mean to offend or rub you the wrong way Judy. No one, especially me, was inferring that you overstepped or did anything wrong in your posts or sharing. I dont know how you can think that. Please don't imply that is what I meant.

That was not what I meant at all.

I was addressing the negativity of any complaints about not having "enough" people post in JFF or the JFf not being the same.

Things change. Day to day, week to week, people and circumstances change...we lose people we love, we gain new members.

LCSC is what you put into it. it lives and breaths and changes, it's been 10 years of growth and constantly changing with the posters and supporters.

My posts above were to encourage people to post, put IN and pay it forward and if this place isn't helping or anyone is unhappy with the ebb and flow of posts, there are other support options, like chat, Facebook, twitter and our Facebook groups. There are many different ways we offer support.

Please don't make out what I wrote as a personal attack on you, Judy. It definitely was not.

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The day I happened upon the LCSC was the best day I had in my journey through lung cancer. It was that day that I found hope that I could get through the diagnosis and treatment with success because I found others who had gone before me and succeeded.

I saw people who were successful and getting back to their lives before cancer-changed for sure, but getting back and that made me think it was possible for me as well.

I saw people who were not as fortunate as I in terms of regaining their health, and I stood in awe of their courage and grace, and felt better for having 'known' them, if only online.

Caregivers gave everything they had, and sometimes it was still not enough to bring their loved one through, and yet they stayed here to help all of the rest of us with our battles.

Things change, and I don't come here nearly as often as I used to-life gets in the way and other things can quickly divert your attention.

My mom is sick-not cancer related at all, but very serious and her status can change on a dime at any time-and has, several times over the past year.

My sister, who has been my mom's most direct caregiver, is moving to another state in a few weeks, and I am truly at a loss. Not only is she my mom's best advocate, she's my best friend. She's the person who's known me longest besides my mom, and I find this all very upsetting that she's leaving.

I attended the HOPE Summit 2012 a few weeks ago as a panelist/survivor and I can't quit thinking about it. Last year, I attended, and I met some amazing new people and reconnected with some old friends. This year, it was the same thing, but much much more. Without the LCSC I would have never been exposed to this network of fantastic people.

June 20 will mark my 9th anniversary of my lung cancer surgery. Coincidently, it is also the day of my annual visit to my lung surgeon. I have had a lot of anxiety issues with these visits in the past and while they get better as time passes, they still can get my head spinning.

So, long story short, I am here today because I find comfort and hope here, just the same as I found it in 2003 when I was facing the scariest time in my life.

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I'll be brief. I can't tell folks irl when I miss my mom, but I can here.

I can smile when someone says something stupid and insensitive, because I know you've all heard it too.

I know I can get it for other people who in there real lives are surrounded by people who don't.

I will also always remember the blessing I was given by this place in my darkest hour.

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  • 2 weeks later...

Glad you asked, Randy! Nearly 8 years ago ( will be on the 26th) , I Googled lung cancer support and found this site. My husband Mike had just been diagnosed with a recurrence of his lung cancer and we were devastated. It was stage IV this time and the prognosis from the doctors was not good. Finding this site was what put hope into the picture for us. It's one thing to get a clinical diagnosis and another to actually read what other cancer patients and caregivers are saying. The knowledge that I gained from reading and participating here made me feel that we had some control in the situation. I can't begin to tell you how many times the members here wrote to me on and off the board to share their opinions or experiences which in turn was shared with Mike and then his doctors. We went to appointments armed with knowledge and were able to ask intelligent questions. I don't know what I would have done without the caring members we met here. And now, my mom has lung cancer which is currently NED.. for this we give thanks to Joel and Maryanne for sharing Joel's cyberknife treatment with us. My mom is a 5 year cancer survivor, at 83 years old, and the last 2 1/2 years she has been NED since she had her cyberknife. Yes, many times over the years, my family and I have been thankful for all the caring people who share on this site and first and foremost, to Katie Brown for creating such a wonderful haven for us all . I try to help when I think what I have to say may help or I just want to give a big ole hug to someone who is struggling as my family and I have. God Bless you all! This place will always hold a part of my heart.

Hugs,

Sue

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When I had LC in 1998, I searched on line for a support group. There was a web site for Alcase that offered you a "phone buddy". I applied for one - but never got a response from anyone. There was a sort of support group on yahoo -- but it was really funky and people would post once and never been seen again.

When I was dx again in 2008 I hoped things were better. The first site that came up was this one, and it was great. Going through treatment I didn't post often, but if I was having problems I did and always received many responses. It was so helpful when it came to how to deal with side effects, etc. Had 2008 been like my experience in 1998, it would have been just awful. I am so grateful that this site was here. I don't really do social media -- honestly it's all I can do to keep up with my kids and grandchildren on FB and I just don't have the time.

It is true that there seemed to be more activity - but like Nick said, I think that just comes and goes.

I have two phone buddies that heard about the buddy system through this site, but never post -- so if it hadn't been here they would have been left alone as I was in 1998.

Diane

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I think I lurked here for almost a year before I first posted.  I found the site by googling questions I had and I kept finding answers by the same person - Ernie, from the Lungevity site, so I decided to check it out.  I am a generally shy person.  Even on line.  (I don't ask people to be my Facebook friends, I wait for them to ask me.)  So, I just lurked, afraid to butt into a conversation.  But in those months I began to feel like everyone here was my friend.  When I first posted I was overjoyed to get responses from people I had been "reading" for so long, Ernie, Ry, Ned, Beatlemike, Bruce, Kasey etc.  It gave me such an instant connection, a feeling that I was no longer alone.  I started telling all my family and friends about my "friends on Lungevity".   I have come here often, with questions, with good news and bad, and hopefully I have helped others with support.  I have also spent a lot of time in the Just for Fun forums, because, let's face it, we have to remember to forget about the cancer and have fun!  There have been periods when I disappeared from the forums for a while.  Sometimes after the loss of someone I have grown very close to or when I am going through a really difficult time, it is just too hard for me to be here.  But, I know that when I am ready to come back, the folks here will accept me back, no questions asked and support ready!

My family and friends all know how important this site is to me, I have said before that this site and my in person support group are my life lines.  Everyone here gets it.  It was very hard for my husband to understand the connection, until the Hope Summit.  He was so amazed at the connections a group of virtual strangers had, the laughter, the smiles, the hugs and mostly that his shy wife wasn't being shy!

I have been watching the "visitor" numbers on the bottom of the page.  Lately  it seems the numbers have been high, 50 or so visitors when I am posting.  that is a lot of people getting support and hope from this site, whether they are posting or not.  Someday they will break their shyness barrier and join in too and when they do, we will be there for them.

Katie, thank you for all of your hard work.  God bless you.

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The importance is to be able to talk to others who have been there and done that. They understand because they have lived it or are the caregiver of someone who has lived it. The importance is getting answers to the questions that you do not even know to ask, and learning to ask questions of your health professionals that NEED to be asked, being told what test are coming up and what treatments are available and how they feel. The importance is the support that you get here and the importance is to help and support someone else. The importance is being able to read the signatures and realize that other people have had you stage and treatment and are doing well. I could go on and on about all that I have learned here. To summarize, I thank God that this site and the people on it are here!

Carol

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