Fay A. Posted August 24, 2004 Share Posted August 24, 2004 We're only 18 away from 1,400 registered users. Back when we were just a triple digit number the consequences for the things we wrote didn't carry the same potential for trouble that they do now. It was more like the disagreements found in all families. I think that this still holds true, but on a larger scale. We have to accept that to be a member of a large family means the potential exists for misunderstanding, miscommunication, and differing expectations. And disagreements will happen, even in the best of families. It's then that we have to search for and find common ground. We all want things to be the way we want them....but trying to define that need for 1,400 people is an impossibility. None of us can be all things to all people. We need to grow in number...If we don't band together our collective voice will never reach the decible level required to be heard over all the other valid causes needing medical research funds. We have to join together. We have to forgive one another for being human and strive to be more as a group than what we are as individuals. I'm a total screw up, guys. I'm not one of those who "did it all right". But I know I'm not wrong here. I think we've reached a crossroad as an organization. I need all of you far more than any of you have ever needed me...but I need you all together. See, I expect that a couple of my children are going to reach their 30s and early 40s and be diagnosed with Lung Cancer. And I need THIS group to have evolved into something that will insure that in a few decades there really will be treatments for my children. And in the interim, I sure do enjoy your company on this lonely road I'm walking. Much Affection to you all, Fay A. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted August 24, 2004 Share Posted August 24, 2004 Dear Fay, I unfortunately am no longer intimately touched by lung cancer. BUT I am still absolutely committed to this site becoming a force, a strong voice, the Susan B. Komen of the lc community. We are a very diverse group, with differing opinions, hopes and dreams but we are drawn together by a common cause and that alone should allow us to overcome our differences and get on with it. Earl's onc. just called me (finally) to tell me how sorry he was about Earl and how he will miss him in clinic. We talked at some length about lung cancer. He said there is an epidemic of lc in young women who never smoked and that no one knows why. He said that breast, colon and prostate cancer are no longer what they were with all the advances but that was not happening with lc. Many drugs that they thought would work for lc ended up working for colon cancer. When I spoke about activism, he said his experience was that his patients were either too busy fighting the disease or wanted to move away from it, not much hope for activism there. He was not all doom and gloom, just sad that more progress wasn't being made. He said they can now fingerprint lung cancer they just haven't figured out what the fingerprint means. He said much progress was being made with stage III patients. He has hope (or he wouldn't stay in research) that new drugs will come along and they should offer even greater success. So let us act as one, support and care about each other, respect our differences and let us move forward. Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 24, 2004 Share Posted August 24, 2004 I was thinking about this myself, today. You said many things, beautifully, Fay. There is bound to be disagreement, especially when it come to discussing the very things that WILL get this organization involved BEYOND support--IF that is the direction others want to take it. Like Fay, I fear for my children and not just MY children but many hundrends of thousands of children and people yet to be DXed. My lot is set. I got LC. So whatever I can do now is of uptmost importance to me--for the future "mes." I have been blessed with several months of being relatively able to use my mind and the few God-given skills I have. Maybe I have seemed "intense" to some--. I am not asking forgiveness for that. Time is of the essence for me. I am proud to be intense about whatever it is I CHOOSE to do. If I at times have seemed impatient. Believe me, I AM. I had hoped to do things WITH this group, but have decided not to wait because groups take a long time. But I also know that groups are more effective, so I hope and pray the group can do some things that Fay suggested. But first, the plans need to be concrete--not generalized. That is where disagreements are bound to happen. Unlike what seems like a common opinion, I think DISAGREEMENTS, when handled in an adult way, are extremely healthy and lead to action. If people are afraid of disagreements, things stay stagnant. These are my opinion. Let the bullets fly. I too made an error or two as for my own advice about being adultlike. And I have done my best to make ammends. The bottom line is what can we do to show a strong face AND get the kinds of discussions going that can lead to ACTION? Is there a way to have one section of the board be private, so that only people who wish to be involved are able to be involved? I am NOT talking about a place where ANY ONE OF US CAN COME AND BASH ANOTHER. I mean a place where postition papers can be drawn up and action plans put together. For example, a couple of us want to put together something about the trend toward using placebos in clinical trials. I suppose we can do that in a chat, but how does one keep a record of the conversation in a chat??? Well just my thoughts, which are about worth what you paid for them. elaine Quote Link to comment Share on other sites More sharing options...
Andrea Posted August 24, 2004 Share Posted August 24, 2004 Elaine, You can use the Activism forum for that. Quote Link to comment Share on other sites More sharing options...
J.C. Posted August 24, 2004 Share Posted August 24, 2004 Fay, I always look for your posts, I do not say much but I keep everybody in my good vibes and prayers when they need them, I also am happy for all the good news around and very sad for all the bad news. I may look cold by my short answers, but I am far from that, it is my way of caring, just to be there, just hope I never hurt anybody by my simple way of being myself. So many people, with all different needs, their life are on a stop and hope trip all the time, no wonder tempers flare and words are said in anger, pain or for other reasons. You explained very well the situation, like in a big family nobody can't think the same way as his/her sibblings or get along well with all of them all the time. Harmony is more constructive than flaring tempers. Progress will be made and the children will be fine. Thank you Fay. J.C. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted August 24, 2004 Share Posted August 24, 2004 Elaine, About recording a chat... When all has been said and done (does it ALL EVER get said and done?), place the cursor into the chat box (the one with all the responses) and use a right click. Press down ctrl-A and then ctrl-c. Open a Word document and press ctrl-v. This should paste the entire chat (wherever you entered) into the Word document.... Becky Quote Link to comment Share on other sites More sharing options...
Teacake Posted August 25, 2004 Share Posted August 25, 2004 Fay, Your comment about big families is right on the money. I had just thought earlier this week that these recent threads about feelings, negativity and such sounded like, well, my family. But we seem to have rebounded with only a few minor sore spots yet to heal as the lchelp family is rebounding and remembering just what is most important. It just is not possible to have the highs in a relationship without the lows. That is the typical wave pattern in all of nature. Everybody take care, Fran Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted August 25, 2004 Share Posted August 25, 2004 This is Kaen. Fay, as usual, very well said. Ginny - my gosh, Earl's oncologist sounds so caring, really, and eveything he told you is so intriguing to me. Elaine - Andrea's right - and the Activism forum needs to be used more. As for me, I'm all for activism, but I'm one of those people Earl's oncologist mentioned. I'm too exhausted just fighting my husband's own personal battle and trying to keep my own family together - full time job, toddler child, mother sick with another deadly cancer. I can't manage much activism. I come here for support and sharing of information and experiences. not to say I won't "go along" with real productive activism, I just don't have it in me or have the time to initiate any. The most important thing I think is for everyone to use some restraint and courtesy when posting to this board so that new people who are looking for support and information aren't scared off. That is vitally important if you ask me. I wish I had more substantive things to add but I'm just too tired . . . Karen Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted August 25, 2004 Share Posted August 25, 2004 Fay, I really feel like you guys are family. I agree with you, like any family there will be "growing pains." What a boring world this would be if everybody agreed. I for one, like diversity. We just have to learn to accept differing opinions, not necessarily agree with them. Fay et al, I love you guys! Cheryl Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 25, 2004 Share Posted August 25, 2004 Karen and all I guess I meant a place where if people needed to discuss something that might have a chance of being disagreeable they could do so. A recent thread comes to mind about who should or should not be highlighted in media-it did cause some disagreement. Maybe somebody was not happy with that, though mainly it stayed above the personal level. Stuff like that. Karen you have a heavy burden as we know, and no one expects that everyone wants to or can do more than they already are doing. Your support is appreciated by many! Cheryl, you and Jack are a part of my family as are Becky and Curtis--even if I am one of their black sheep . I love you all (1400 plus) for the uniquness you have brought to my life and for the lessons I have learned from each of you whose words and voice I have been priveledged to have read and heard. I miss those who have left us--no matter how they have left us. I hope we can do them proud. elaine Quote Link to comment Share on other sites More sharing options...
Nushka Posted August 25, 2004 Share Posted August 25, 2004 Fay and Ginny, Well said. I need this family myself so for selfish reasons I hope that we can all realize that we are under tremendous stress. Those of us who are sick and those who are caregivers and all at wits end so much of the time. Friends take you as you are and love you anyway. I want us all to be friends, family, and supporters. Nina Quote Link to comment Share on other sites More sharing options...
SDianneB Posted August 25, 2004 Share Posted August 25, 2004 Well, after reading all this, I'd just like to say that I am perfect, am never negative, I always say just the right thing at the right time and in the right way, and I am, of course, better than anyone else on the planet. JUST KIDDING!!! I do so enjoy reading all you have to say about your lives and your experiences and your families, even the negative when it rears its ugly head, because that's a part of it, I think. I'm glad I found you all and this place. I'm also totally clueless about whatever negative has allegedly been going on around here, but me being clueless is NOT a new phenomenon! Take care you all -- I NEED you!! Di Quote Link to comment Share on other sites More sharing options...
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