Snowflake Posted April 12, 2007 Posted April 12, 2007 For those of you who have been here a while or have experienced a "new normal," why do you continue to come here? To post? Don Wood, RandyW, Stand4hope, Ginny D, Debi... I think I know why I do. I found this website during some of my darkest hours. I was researching lung cancer, after my surgery and learning my staging. I read the statistics, each word echoing like a nail in my coffin...and then my brain flipped the coin. My inner self spoke to me and said, "Self, why are you so dumb? You are looking up statistics, NUMBERS, what you're really interested in is SURVIVORS, word your search better!" So I searched on lung cancer survivors, because even in those statistics, there WERE some mentioned... ...and I found this site, and I found HOPE - and SURVIVORS. I had been in the deepest pit of despair and then I saw it, a small ray of light that just kept getting bigger as the flame grew within me. I was still a bit cautious that the light at the end of the tunnel might be a train (or a beer truck), but I read posts...and more posts...and finally, I posted my first post, and was welcomed with open arms. I'm still here because I SOOOO remember those dark days of despair, and anytime I feel I can help someone through it, to let them know that I'm here with a flashlight and a ball bat to help fight their monsters, I feel I'm repaying all those who carried me when I needed it so desperately. ...and I'm still here because I promised Fay A. I would be - she was one of those first people to hold me up (and she pushed, too!). So, what's YOUR story? Quote
carolhg Posted April 12, 2007 Posted April 12, 2007 Snowflake, you along with KatieB, ConnieB, Kasey, Don, JimBen and others were here for me when I first stumbled onto this site looking and afraid of what I might find. From the bottom and the top of my heart, THANK YOU!!! Carol Quote
Geri Posted April 12, 2007 Posted April 12, 2007 I came originally when I was 2 years out and working myself into a lather about upcoming scans. I wanted to know if it ever stopped being a melt-down period. So many people answered, Daggiesmom, Don Wood......it was wonderful not to be alone anymore. I stay because I have made friends here, some are still a name on a screen some are "real" people I've met in the flesh, some didn't survive lc, some are doing great but all are very important to me. I think I give new members hope that they too can beat this demon, I can no longer offer much advice on tx as things have changed in the last 5 years and my memory has archived some of the more distasteful bits. I'm not solely altruistic in my reasons for staying, I'm getting reasurance too from other survivors....they get what I'm saying and my family and friends, as much as they love me, just don't understand in the same way. I also stay because I'm constantly learning things about the disease that takes so many of us down a road we have no affection for. Because of this site I was able to get in touch with Rich (Dadstimeon) and we started a walk which will hopefully go on long after a cure is found. More importantly we became friends and so did so many others through our walk.......maybe that's why I stay, because I like all the caring that I see here for others that we wouldn't recognize if we passed them on the street. We're a true family ~~~~ we close ranks when one of our own is being picked on or treated unfairly and we squabble too at times. That's why I'm still here. Geri Quote
RandyW Posted April 12, 2007 Posted April 12, 2007 Support and the need to help others in return for the help that I recieved. Is a combination of the need to repay a favor, paying forward a favor, and being a caretaker I literally have no one to care for right now. My parents are in good health in general right now. Quote
Larry Posted April 12, 2007 Posted April 12, 2007 Ok SnowFlake the reason i'm still here is because i enjoy reading your "booger remark's" . No just teasing, the reason i came was like most looking for hope,information and to meet and read about other's in the same boat.I not only found all this and more plus a group of friend's that are more like my extended family.I feel like i've known so many of you all my life and would not trade you all for any thing. I stay for all the afore mentioned and hope that in some little way i can give back what you all gave me in my darkest hour's. All i can add is a heartfelt GOD BLESS you all.... Quote
Kasey Posted April 12, 2007 Posted April 12, 2007 I found LCSC totally by accident in my darkest hour. I almost didn't even take a better look when I realized it was a support group. I had visited several and found I just became more and more depressed. There was no light at the end of my tunnel and I would not see flowers in the spring. They are the exact words of a couple of the doctors. Every one of my reports was 'grim'. I figured that meant I would be gone in less than 4 months or so. I was filled with hopelessness and despair. When I 'somehow' figured how to make a post, DonnaG responded immediately. She led me to mhutch, who led me to NIH, where I was reevaluated and deemed a surgical candidate. Well, to make a very long story short, here I am today, over 2-1/2 years later. Normally I am a shy type, so to venture onto a message board was very intimidating........actually still is to some extent. BUT that is outweighed by the tremendous debt I feel I owe to all those here. I know the importance of a quick response to a newbie. It can make all the difference between hope and going over the edge. I received hope here. I received information here. I received support here. I received understanding here. I received friendship here. I remain here to be able to offer to someone new perhaps just a portion of all I have gotten. I was a very timid poster at first. I credit Fay A with nudging me on. She made me truly believe that I could make a difference and charged me with remaining to offer what I could. So, for oh so many reasons I stay. I received my life here. The folks found here are among the most courageous, caring, giving people I know. I am humbled by their strength. Sharing in the journeys makes me a better person. Finally, I am here because I can talk about lung cancer. Can any of us leave it behind EVER? Some of you know I have a couple of my oldest and dearest friends who refuse to acknowledge my lc. We 'pretend' that elephant isn't in the room. So I play along. Then I can come here and truly be myself because, although I am not defined by my lc, it has made me a different person......a person who fits better here than with some old, old friends. I love LCSC! Kasey Quote
Donna G Posted April 12, 2007 Posted April 12, 2007 "If the Battle is Over, Why Am I Still In Uniform?" by Brenda Elsagher (comedian) I am going to a Cancer Survivor Celebration luncheon on the 21st of the month and this comedian, who wrote that book, will be the speaker. But isn't that really the answer to the question you ask? Just as if it was yesterday, I remember how devistated I was the day I was told I had lung cancer. I knew I was the walking dead. Even after my Onocologist told me he planned on curing me of this cancer the months that followed were so hard. I know how I needed help and support. I also realize how much women (and men) need to work to get the public to realize we need research and better treatment and money must be spent to do this! I can not imagine the day when I take off my "uniform" Donna G PS: I am an RN so I am used to wearing a uniform also Quote
Connie B Posted April 12, 2007 Posted April 12, 2007 I continue to come here because I too still need support and eductation even though I have been cancer free for over 11 years I am still dealing with this monster. I also come here because I like to think I give HOPE to those that are dx.d late stage lc or for that matter, any stage. I was a Stage IIIA-B when I was dx.d and I know there aren't many of us running around in this world, so if my being here offers HOPE to others then it makes my heart feel happy. I also come here because like many I too lost loved one's to lung cancer. I lost my dad, mom and sister to this monster and they never had anyone to talk to about there disease in the 70's and 80's. Even when I was first dx.d in 1995 there wasn't anyone to compare notes with or Internet boards to go to. I thought going through it with my family members I pretty much knew all there was to know about lung cancer. BOY, WAS I WRONG!!! I felt so alone and so sacred in my battle the first 3 years of it. I never knew anyone lived from lung cancer, I only knew that everyone I knew died from it, so that only meant I was going to die from it also. (And of course I thought that would happen the first year of my dx.s. being that no one in my family lived more then 10 months after they were dx.d) I have been apart of this board shortly after it started up over 4 years ago or somewhere there about. DavidP was one of my very first contact people on this board. He wrote his journey about lung cancer and called it, "My Badge of Honor" He's a 28+ year LC Survivor and he's still beating the odds. He doesn't come to the board very much, but he was and is still my hero. I have met many HERO'S (Patients and Caregivers) on this board, many of them are no longer here, but they will always be hero's to me. I still gather HOPE and SUPPORT from all those that continue to come here and those that stay here. THANK YOU ALL! Quote
Sis Posted April 12, 2007 Posted April 12, 2007 I stay for several reasons: 1. Reading the success stories of the survivors. Although there is nothing I can do to bring back my sis, just hearing that others are continuing to fight...and WINNING makes me feel so good. 2. Communicating with some of the events organizers at LUNGevity and trying to get involved in helping with some of the upcoming fundraising events in Charlotte and the D.C. Marathon. Honoring her life means doing something positive to help to find a cure. 3. Knowing that there are so many kind and caring people who are willing to share their helpful thoughts and advice. Quote
luvmydog2 Posted April 12, 2007 Posted April 12, 2007 I found this site while surfing the net looking for hope. I found about 300 (yes 300)loving and careing people. Most of these people are the ones that kept me going forward. Today there are over 3000 members. We have lost several to the disease and others no longer come since their loved one no longer needs us. Then there are those like GinnyD and Standforhope that continue after their loved one passed on. Why do I come here? Because I hope that I can give that small ray of hope that someone gave me, to someone else. We are like family here and we prop one another up when needed. I only hope that I have helped a few others that are walking this road with me. Quote
ginnyde Posted April 12, 2007 Posted April 12, 2007 Oh Becky, heavy question. I was the 24th to join here in January 2003. I was then just ginnyd but somehow I lost the ability to use that signon. Earl had been dx'd in 10/02. World upside down time. I was searching desparately for something, anything to help me understand this thing called lung cancer. Thank God, I stubbed my toe on this wonderful site. Earl's dr. used to tease me about the questions I came equipped with, information I had garnered from this site. One time, even before I asked, the dr said, "No, Earl is not a candidate for Tarceva.". He knew that it was the latest scuttlebutt for lc. Information, support, understanding and many, many more things that I received from here helped me help Earl through this journey. Along the way, I met many terrific people that I now consider friends. I don't feel that I can offer much information any more. It is over 2 1/2 years since Earl died (although I still expect him to walk in the door). So my medical information is ancient and my memory of his illness has dimmed in many ways. BUT, I can't seem to leave. I want to contribute to the noisiness about lc to help get the funding for research that is critically needed. I want to hold hands with people that are taking this journey, certainly the wives. BUT, mostly I need to stay in touch with the lives of my friends here. I miss many that have passed through this site. I believe that staying here in some ways honors their memory. Thank you Snow. Quote
Don Wood Posted April 12, 2007 Posted April 12, 2007 This site was an oasis in the desert of LC when I found it in late 2002. So much good information on the cutting edge, and so, so much love and support from the people for Lucie and myself. It is almost 7 months since Lucie died. I know in my heart that at some point I will need to move on with my life. Right now, I still have something to give to others and I love the many friendships I have made here. This is truly a site of angels. Don Quote
Ann Posted April 12, 2007 Posted April 12, 2007 I came here on January 9th, 2003. I had been active in another forum that several of our current members had been involved in, so I have actually been chatting with some of you long before 2003. I found strength from members while Dennis was ill and suprisingly found even more strength after his death. I stay in hopes that I can help someone else that has had a spouse diagnosed with cancer. I'm here to listen, offer support and try to make you laugh. Of course, I still gain more than I can ever give by coming to this board. When I'm down, you guys always seem to know the right things to say to lift my spirits. Although I have been without Dennis for four years, a part of him still lives on through my participation with this board. Quote
shineladysue Posted April 12, 2007 Posted April 12, 2007 I was looking for information , hope , survivors and support. It only took me about 15 minutes to read at this site and realize that I could find all of that here. I can't leave because I feel we are family here. I continue to come here to give and receive support among people who have all had their lives in one way or another touched and forever changed because lung cancer was a part of it. God Bless you all, Sue Quote
Treebywater Posted April 12, 2007 Posted April 12, 2007 I signed on a day or two after my Mom's diagnosis in Nov. of 2004. I was looking for information, and I'd found the dreadful statistics.... I just couldn't wrap my mind around the journey we were going to face. It didn't line up with my perceptions of 'fighting cancer' at all. Then I came here..... and there was hope. There were survivors. There was Snowflake and jimben and Frank and Don's Lucie Fay A. and Rich and Geri and Cindi and Kasey and Connie--I mean Connie with this kick-*ss 11 (how many now, Connie?) years under her belt and then.... so many others that were and still are putting up a helluva fight against this ugly monster of a disease. So I came and I read and it was my lifeline of hope all the way through Mom's journey. I would read here and report to her. I would offer possible questions for her and Dad to ask. And then it was a safe haven to say the tough stuff that you don't want to or can't say anywhere else. I'm still here for several reasons. 1) I hate leaving a book in the middle of a story, you know? And I became friends with so many here and was involved in so many stories... I couldn't not stay. 2) I felt like I was given so much here that maybe.... I could offer something back. I don't know that I do. Sometimes I worry that I am just a maudlin reminder of what could happen, but I hope that in some small way I contribute positively here. 3) Staying here helps me remember what happened. It helps me stay connected to my Mom. Maybe that is unhealthy, and maybe I should move on... but Mom's illness and death completely remade me and I need to stay connected to a part of that remaking. And... sometimes I still need support. I still need to say things about my grief. And I know I can do that here. 4) This place helps me to remember to be a rabble-rouser. To speak up for LC and other under-represented cancers. It gives me ideas for how to fundraise and ways to participate in the fight to eradicate LC. And then there was Fay for me too, telling me that I had to be a voice now, for her and my Mom and everyone affected by this disease and this place helps me to find that voice. So... that's why I'm still here. Thanks for the question, Becky. I think it's an important one. Quote
Debi Posted April 13, 2007 Posted April 13, 2007 Becky, Good topic- I keep coming here because I feel I need to for a variety of reasons. First, to keep up to date on everyone- with my current position I work long hours and don't always have time to post, but I have time to browse. I always take at least a few minutes to assure myself that everyone is okay. Secondly, I come here because I feel like somehow I owe something for being alive. Sometimes I wish I could be like some of the other survivors who came here in the beginning, and then left and are living their own lives free of reading daily stories of people suffering with the same disease that you have had. To be honest, I am slightly resentful of these people that left, to be able to walk away and forget. I can't forget and live in this sort of purgatory - between the well and the sick, between those here and those not, waiting and yet needing to move on in so many ways. This board holds so many memories of so many special people who are gone forever - I sit here keeping company with the few that remember them all, sitting in for those we lost because if they were still alive, I know they would be here. I come here because I feel there needs to be a representation that people need to know that there can be life after lung cancer. Although I don't always post I still feel that what I can give,which is only my presence on some days, is some sort of testament that life can go back to some sort of normalcy. I don't have advice on chemo or radiation, or about some of the issues that come up in a more advanced stage of lung cancer, so as time goes on I answer less and less posts, but I stay just the same because I just can't go.. Quote
Jyoung20 Posted April 13, 2007 Posted April 13, 2007 I continue to come here because of all you.. Your stories, your inspirational messages, comraderie, and support keep me here!!!! I know I couldn't have survived without you!!! God Bless!! Jamie Quote
J.C. Posted April 13, 2007 Posted April 13, 2007 I came on this forum just before Mike died, October 13th 2003, why I'm still here, 42 months later? I have friends but no family left, I still work with cancer patients two days a week and it is here that I get some knowledge and ideas about new treatments for them. I take from the forum to give to others. Quote
mamasbabygirl Posted April 13, 2007 Posted April 13, 2007 I come here as a legacy to my mama, to help others in any small way I can. This site gave me and my mom so much hope. I printed many posts/profiles and read them to her. Through using this site as an inspiration in my mom's fight, I started to care about everyone here. I've said it before and I'll say it again-You are like my family. Quote
daggiesmom Posted April 13, 2007 Posted April 13, 2007 This site has been so very helpful to me. It has encouraged me to go on during hard times and has taught me that there IS hope and that there are many wonderful people in the world. I have been truly blessed to have reached my five year mark and want others to know that this can happen to them as well. God Bless you all. Joanie ((())) Quote
stand4hope Posted April 13, 2007 Posted April 13, 2007 I stay here to keep Snowflake out of trouble! It's true! Just ask her! You all know why I stay here (or at least keep coming back) - it's because of YOU. YOU being whoever is reading this. Love and hugs, Peggy Quote
flwrjunke Posted April 14, 2007 Posted April 14, 2007 I'm still here. Lurking. I read all of the post, and pray for everyone that's here. Sometimes I thought that I was still here because it kept me close to Mom. But in all realality, I started to care for those that are here. Going through some really tough times, sharing, like a family. I'm still here, for all of those, who reached out to me, at the lowest time in my life, I will be forever grateful. I will always say a prayer for you. You were here for me, your still here for me. Why would I ever leave? Patty Quote
Bev'sSister Posted April 14, 2007 Posted April 14, 2007 I am so grateful for all of you that have stayed on. You have made this journey with my sister bearable. Thank you all so much and I plan to always stay with this board, reguardless of what may come, just to try and help anyone I can, because I owe it. Thank you all! Love, Bobby Quote
rvillella Posted April 15, 2007 Posted April 15, 2007 I stay here out of respect for those who have helped me and gave me hope while I was in that deep pit, and have passed on to their freedom from this dreaded disease. To many times I felt sorry for myself and just couldn't see going on any more and there was a posting on the boards from someone that would remind me how lucky I was to be getting treated and having the possibility of a cure. Snapped me right out of my pity party and brought me back to reality. Without all of you here I don't think I would have had the strength to make it. Ralph Quote
missyk Posted April 16, 2007 Posted April 16, 2007 I stumbled on this site when I was researching Mom's diagnosis...and knew I'd found something wonderful. Knew it enough that I immediately called Mom at 11:30 at night and told her she HAD to sign on and read. I come now because it's the place where I'm not ashamed to sit and cry and be scared and worried or feel like I have to explain myself in any way. Every single person here understands...many have been there before me and many have lived the other side of it...and can help me when I'm weak and human in a struggle that takes, sometimes, inhuman strength from everyone. I will continue to come here because of those things above. If there's someone who can benefit from Mom's journey and what we've learned, then I'm here for the long-haul. Quote
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