Where is everyone?
Comments
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I agree that number seems
I agree that number seems awfully large. Thousands of people here but only a handful being active. I think the reason for this is multifaceted. Many people come here to ask questions, get their info, and then never come back. I myself notice that when I log in there are a lot of new faces but once they have surgery, many don't reappear. In one way, that's great, we've helped! In another it's a bit difficult because we should be a community of people. I want to know how they are doing 6 weeks, 6 months, and even years later.. I understand life happens. With young people being incidentally diagnosed, they get back into work, kids, etc. and don't think to log in here regularly. That's great, I get it. I just look at it as a small group of people that can remain close for years to come.
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I hope to be here
for a while yet... cant tell you how important you all were in that first week when only my eldest son and myself was aware that just four years after losing his father to Lung cancer that now he was facing losing his mother as well
the kindness and hope you showed me then I could never repay
I understand too how people want to move on but after two weeks spent reading almost every post here I too am baffled by the number of people who ask one or two questions.. get help from the kind and sometimes very ill people here ... get told don't worry.. in all probability you will be fine and then leave .. or maybe not leave but dont come back and said yes you were right I am fine ... thanks for your help
In the wise words of Kat.. we ( I am including myself in your esteemed ranks) should be a community... I left my very small town in Ireland some years ago as the dullness was not for me... but at a drop of a hat when any one is ill , passes, have babies the whole town is there helping and praying within hours.
I have no idea of my outcome but I am beyound grateful to each and everyone of you who have helped me and everybody else who asked for your help
I got told my diagnosis in an emergency room and was then sent on my way... me and my child... the fear and emotional impact was hard to bear in that first week..
except here I got education, support and sense of strenght back
in fact. This should be made to be part of the Opening dialogue
just after the Wonderful Iceman ( who I have named Gary because he looks like a Gary) says hi you will be fine
Fox then pops up and asks. Are you just checking in or stretching out
Annie
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Ahhhyfoxhd said:All I try to do
is find ways to get a dialogue going. I don't intend to make anyone feel pressured. Sometimes I just stir things up. Sometimes to change or start a new focus besides cancer. (Remember our cancer does not define us.) The best dialogue is when people participate. Obviously.
No one has ever come here with the goal of making friends. Interaction breeds familiarity and comfort. I am one who has always looked forward to opening this site, so that I could learn something new, share experiences, and see everyones picture. Believe me it is awesome medicine. Karma. But that is not why I joined this or any forum. Passion about the topic is. Take Iceman. He has no reason to be here. Small tumor, surgeon got it all about 90 years ago with sharpened clamshell. He should have forgotten all about this a couple of eclipses ago. Why is he here? What good does he do anyone? Medicine is greek to that attorney. Yet everyday he puts on his top hat and tails, opens the blinds, and starts every newbies nightmare with a warm, compassionate welcome. Assuring even the least knowledgeable that they will find the answers and support necessary to help them have a great outcome. Has anyone ever not been thankful to him when they think of this site? I doubt it.
Jan has a heart bigger than Irma. Her hand is always available to hold. Here is a lady I never met in person. Now I tell her I love her. I could go on because Steve and Jerzy, the Donnas. Kat, Ange, sarah, Apny, and Jojo are a few more giving of themselves to help others. None of them need help any longer. That is the definition of caring.
I have been surrounded by professionals my whole life. But I also am a patient. Just like most of you. That bond is unique. I do not visit every day to make new friends. That just happens. With conversation.
fox:
now I am hurt that you didn't mention me....
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Ahhhyfoxhd said:All I try to do
is find ways to get a dialogue going. I don't intend to make anyone feel pressured. Sometimes I just stir things up. Sometimes to change or start a new focus besides cancer. (Remember our cancer does not define us.) The best dialogue is when people participate. Obviously.
No one has ever come here with the goal of making friends. Interaction breeds familiarity and comfort. I am one who has always looked forward to opening this site, so that I could learn something new, share experiences, and see everyones picture. Believe me it is awesome medicine. Karma. But that is not why I joined this or any forum. Passion about the topic is. Take Iceman. He has no reason to be here. Small tumor, surgeon got it all about 90 years ago with sharpened clamshell. He should have forgotten all about this a couple of eclipses ago. Why is he here? What good does he do anyone? Medicine is greek to that attorney. Yet everyday he puts on his top hat and tails, opens the blinds, and starts every newbies nightmare with a warm, compassionate welcome. Assuring even the least knowledgeable that they will find the answers and support necessary to help them have a great outcome. Has anyone ever not been thankful to him when they think of this site? I doubt it.
Jan has a heart bigger than Irma. Her hand is always available to hold. Here is a lady I never met in person. Now I tell her I love her. I could go on because Steve and Jerzy, the Donnas. Kat, Ange, sarah, Apny, and Jojo are a few more giving of themselves to help others. None of them need help any longer. That is the definition of caring.
I have been surrounded by professionals my whole life. But I also am a patient. Just like most of you. That bond is unique. I do not visit every day to make new friends. That just happens. With conversation.
fox:
now I am hurt that you didn't mention me....
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HUGS Annie! Well said!Wehavenotimeatall said:I hope to be here
for a while yet... cant tell you how important you all were in that first week when only my eldest son and myself was aware that just four years after losing his father to Lung cancer that now he was facing losing his mother as well
the kindness and hope you showed me then I could never repay
I understand too how people want to move on but after two weeks spent reading almost every post here I too am baffled by the number of people who ask one or two questions.. get help from the kind and sometimes very ill people here ... get told don't worry.. in all probability you will be fine and then leave .. or maybe not leave but dont come back and said yes you were right I am fine ... thanks for your help
In the wise words of Kat.. we ( I am including myself in your esteemed ranks) should be a community... I left my very small town in Ireland some years ago as the dullness was not for me... but at a drop of a hat when any one is ill , passes, have babies the whole town is there helping and praying within hours.
I have no idea of my outcome but I am beyound grateful to each and everyone of you who have helped me and everybody else who asked for your help
I got told my diagnosis in an emergency room and was then sent on my way... me and my child... the fear and emotional impact was hard to bear in that first week..
except here I got education, support and sense of strenght back
in fact. This should be made to be part of the Opening dialogue
just after the Wonderful Iceman ( who I have named Gary because he looks like a Gary) says hi you will be fine
Fox then pops up and asks. Are you just checking in or stretching out
Annie
JanHUGS Annie! Well said!
Jan
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Sarah, Sarah, Sarah,Srashedb said:Ahhhy
fox:
now I am hurt that you didn't mention me....
Never forgotten. Gosh, you tease. When people pulled for me when I was crashing hard, I put my life at risk with some bold decisions. You ALWAYS reinforced my choices. You have such a solid logical thought process. No one else provided your insight. I thank you so much. For ever. FLY deeply.
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SarahSrashedb said:Ahhhy
fox:
now I am hurt that you didn't mention me....
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Just Checking In
I come here less often than I did the first couple of years. Why? Well most recently it had to do with Irma, but this is a short term excuse. Long term I have moved 3 times, traveled widely, and care took for a gravely sick father in law. I have changed jobs 3 times after retiring as well. The schedule has been full. But stoppiong by to check up on folks here is never far from my mind. I read more often than I post. Fox you have been an inspiration from the start. To be honest the loss of some of the charter members like Texas Wedge, GSRon, Neil, Stomps, and others has made it difficult at times because of the sense of loss.
I have been blessed so far to not have a recuurence of my RCC, I hope not to take that for granted but neither will I fail to appreciate my good fortune and live life to the fullest. As a result of this I sometimes forget the initial fear and mental agony experienced by our new members particularly. Iceman has been ever present for welcoming the new members. No one has more compassion than Jan. I have benefited from kind and helpful conversatons with so many here, but I search for places where my unique circumstances and experiences can help someone.
A bit of rambling here, but I will endeavor to participate more.
Jack
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Why I don't post
Fox,
I love you! Each time you start a thread asking why us old-timers don’t post anymore, I start to draft an answer, but then decide you probably won’t understand. I’m not sure that extroverts can comprehend introverts.
I first joined the site in 2012 after I received my diagnosis and I was in a panic. You, Texas_Wedge, IceMan, and others brought me back from the edge. I was not close to my family, emotionally or physically. I was a workaholic and didn’t have friends. I was distrustful of people, but I was desperate and, thank God, this forum (and you) were here.
A couple of months after surgery, I also joined ACOR (now SmartPatients). I got some valuable information and advice there, but it scared me to death because most of them were Stage 4 and some were in really bad shape and people would die too often. This site is more emotionally supportive.
Since becoming Stage 4, I mostly stay on SP(SmartPatients) and don’t come here often and here is why:
I am not the best encourager. I feel I should not post unless I can offer encouragement or helpful info. Often I will read a post by someone who is Stage 1 or 2 and the replies are telling them how lucky they are, forget about cancer, and go on with their lives. I disagree. Even Stage 1 patients have a risk of recurrence, and especially Stage 2. I started out Stage 2 and my surgeon announced to myself and my family that he “got it all” and I was cured. I worry about those advised to forget the cancer and move on because they may then not get follow up scans or even see an oncologist. I could post my opinion on all of those threads, but I’m going to be drowned out by all of the optimism. I don’t think I’m a pessimist, just a realist. Optimism is great to a point, but can go too far. I can either post my less optimistic opinion and feel bad about that or post something I don’t really believe and feel bad about that or just lurk and not post and feel bad about that.
I think this site is very important because SP can be too scary for newbies.
I love you Fox and I rarely come back to this site except to check on how you are doing. The rest of you are really nice folks too, but Fox holds a special place in my heart and I don’t want to come here and just bring people down or scare them. That’s not helpful.
Kathy
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Jack,
I have not gotten over our friends passing either. It is why I feel like a dino. Being one of the last alive since I joined is unsettling. It's not just the 6 1/2 years. It"s that I've been stable at times but never well. How fast time moves on blows my mind. Then I get up and go about my business. No longer the bad a$$ biker but the skinny old man.
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Kathy,NewDay said:Why I don't post
Fox,
I love you! Each time you start a thread asking why us old-timers don’t post anymore, I start to draft an answer, but then decide you probably won’t understand. I’m not sure that extroverts can comprehend introverts.
I first joined the site in 2012 after I received my diagnosis and I was in a panic. You, Texas_Wedge, IceMan, and others brought me back from the edge. I was not close to my family, emotionally or physically. I was a workaholic and didn’t have friends. I was distrustful of people, but I was desperate and, thank God, this forum (and you) were here.
A couple of months after surgery, I also joined ACOR (now SmartPatients). I got some valuable information and advice there, but it scared me to death because most of them were Stage 4 and some were in really bad shape and people would die too often. This site is more emotionally supportive.
Since becoming Stage 4, I mostly stay on SP(SmartPatients) and don’t come here often and here is why:
I am not the best encourager. I feel I should not post unless I can offer encouragement or helpful info. Often I will read a post by someone who is Stage 1 or 2 and the replies are telling them how lucky they are, forget about cancer, and go on with their lives. I disagree. Even Stage 1 patients have a risk of recurrence, and especially Stage 2. I started out Stage 2 and my surgeon announced to myself and my family that he “got it all” and I was cured. I worry about those advised to forget the cancer and move on because they may then not get follow up scans or even see an oncologist. I could post my opinion on all of those threads, but I’m going to be drowned out by all of the optimism. I don’t think I’m a pessimist, just a realist. Optimism is great to a point, but can go too far. I can either post my less optimistic opinion and feel bad about that or post something I don’t really believe and feel bad about that or just lurk and not post and feel bad about that.
I think this site is very important because SP can be too scary for newbies.
I love you Fox and I rarely come back to this site except to check on how you are doing. The rest of you are really nice folks too, but Fox holds a special place in my heart and I don’t want to come here and just bring people down or scare them. That’s not helpful.
Kathy
Believe me. I think of you often. Always waiting to hear from you. Sometimes I get in hot water for slapping people instead of being a cheerleader. Tough love. It is why I stir things up. There is so much to talk about besides crappy cancer or bad choices about one's care. In real life I have been an introvert also. Major problem growing up. My career made me learn to take control when appropriate. I became quite effective and it is like flipping a switch when I need to use it. I never intended to be here until death due us part. But here I still am. I can't stop caring for everyone and can't quit. Even when I lose peoples respect for exposing reality.
In other words Kathy, come and say Hi once in a while. Leave the cancer for others to discuss. You are one of us. I care.
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Nice Post!NewDay said:Why I don't post
Fox,
I love you! Each time you start a thread asking why us old-timers don’t post anymore, I start to draft an answer, but then decide you probably won’t understand. I’m not sure that extroverts can comprehend introverts.
I first joined the site in 2012 after I received my diagnosis and I was in a panic. You, Texas_Wedge, IceMan, and others brought me back from the edge. I was not close to my family, emotionally or physically. I was a workaholic and didn’t have friends. I was distrustful of people, but I was desperate and, thank God, this forum (and you) were here.
A couple of months after surgery, I also joined ACOR (now SmartPatients). I got some valuable information and advice there, but it scared me to death because most of them were Stage 4 and some were in really bad shape and people would die too often. This site is more emotionally supportive.
Since becoming Stage 4, I mostly stay on SP(SmartPatients) and don’t come here often and here is why:
I am not the best encourager. I feel I should not post unless I can offer encouragement or helpful info. Often I will read a post by someone who is Stage 1 or 2 and the replies are telling them how lucky they are, forget about cancer, and go on with their lives. I disagree. Even Stage 1 patients have a risk of recurrence, and especially Stage 2. I started out Stage 2 and my surgeon announced to myself and my family that he “got it all” and I was cured. I worry about those advised to forget the cancer and move on because they may then not get follow up scans or even see an oncologist. I could post my opinion on all of those threads, but I’m going to be drowned out by all of the optimism. I don’t think I’m a pessimist, just a realist. Optimism is great to a point, but can go too far. I can either post my less optimistic opinion and feel bad about that or post something I don’t really believe and feel bad about that or just lurk and not post and feel bad about that.
I think this site is very important because SP can be too scary for newbies.
I love you Fox and I rarely come back to this site except to check on how you are doing. The rest of you are really nice folks too, but Fox holds a special place in my heart and I don’t want to come here and just bring people down or scare them. That’s not helpful.
Kathy
Kathy, I can relate to some of what you said. Thanks.
I too I am not a great encourager, but I come here often and post what I know -- if it's applicable -- and with a bit of levity if I can.
I can remember a post from foxhd ~2 years back that prompted me to contribute to the forum. Thanks Fox! You've been my greatest encouragement.
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Still a Bad A$$ biker!foxhd said:Jack,
I have not gotten over our friends passing either. It is why I feel like a dino. Being one of the last alive since I joined is unsettling. It's not just the 6 1/2 years. It"s that I've been stable at times but never well. How fast time moves on blows my mind. Then I get up and go about my business. No longer the bad a$$ biker but the skinny old man.
Fox, you are and always will be a Bad A$$ Biker to me and others who know and love you so much. You still the man! You really need to know what a huge impact you make to so many folks! You hang in there and have some cold beer and pizza to celebrate your Bad A$$ness!
Jack
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I don't know where I fit in.
I don't know where I fit in. I feel strange saying I "had cancer." Little bitty tumor discoveredin April 2014 and gone in July 2014. Just got my 3 year clean bill of health and moved to the survivorship program. Frankly, I sometimes feel guilty saying that with all of the struggles others are having. That aside, both of my brothers have different forms of cancer. One seems like he will be fine after surgery, and the otehr is working through a strange issue. So, other things in life have taken me away form here, but I check in at least once per month.
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Tough Lovefoxhd said:Kathy,
Believe me. I think of you often. Always waiting to hear from you. Sometimes I get in hot water for slapping people instead of being a cheerleader. Tough love. It is why I stir things up. There is so much to talk about besides crappy cancer or bad choices about one's care. In real life I have been an introvert also. Major problem growing up. My career made me learn to take control when appropriate. I became quite effective and it is like flipping a switch when I need to use it. I never intended to be here until death due us part. But here I still am. I can't stop caring for everyone and can't quit. Even when I lose peoples respect for exposing reality.
In other words Kathy, come and say Hi once in a while. Leave the cancer for others to discuss. You are one of us. I care.
I don't think anyone comes here to be slapped, do they?
There must be ways of communicating that get a point across without causing offence.
It's ok to be assertive but anger and aggression are nearly always counter productive.
Steve.
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Hi Fox
For me, I don't post very often because I feel that I am always asking questions and not really offering much help. Sometimes, after I have posted something, I think, "oh my goodness, that's sounded needy or just silly". But I think of everyone and wonder how you are all doing so often.
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NormalNewDay said:Why I don't post
Fox,
I love you! Each time you start a thread asking why us old-timers don’t post anymore, I start to draft an answer, but then decide you probably won’t understand. I’m not sure that extroverts can comprehend introverts.
I first joined the site in 2012 after I received my diagnosis and I was in a panic. You, Texas_Wedge, IceMan, and others brought me back from the edge. I was not close to my family, emotionally or physically. I was a workaholic and didn’t have friends. I was distrustful of people, but I was desperate and, thank God, this forum (and you) were here.
A couple of months after surgery, I also joined ACOR (now SmartPatients). I got some valuable information and advice there, but it scared me to death because most of them were Stage 4 and some were in really bad shape and people would die too often. This site is more emotionally supportive.
Since becoming Stage 4, I mostly stay on SP(SmartPatients) and don’t come here often and here is why:
I am not the best encourager. I feel I should not post unless I can offer encouragement or helpful info. Often I will read a post by someone who is Stage 1 or 2 and the replies are telling them how lucky they are, forget about cancer, and go on with their lives. I disagree. Even Stage 1 patients have a risk of recurrence, and especially Stage 2. I started out Stage 2 and my surgeon announced to myself and my family that he “got it all” and I was cured. I worry about those advised to forget the cancer and move on because they may then not get follow up scans or even see an oncologist. I could post my opinion on all of those threads, but I’m going to be drowned out by all of the optimism. I don’t think I’m a pessimist, just a realist. Optimism is great to a point, but can go too far. I can either post my less optimistic opinion and feel bad about that or post something I don’t really believe and feel bad about that or just lurk and not post and feel bad about that.
I think this site is very important because SP can be too scary for newbies.
I love you Fox and I rarely come back to this site except to check on how you are doing. The rest of you are really nice folks too, but Fox holds a special place in my heart and I don’t want to come here and just bring people down or scare them. That’s not helpful.
Kathy
I agree 100 percent that even stage1 people cannot take it for granted that it won’t return. Sure, statistically the chance of it returning is slim, but then so was the probability of getting kidney cancer to begin with. So while I try to remain optimistic, I never forget the DJ was also stage 1 when first diagnosed.
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All I try to do
is find ways to get a dialogue going. I don't intend to make anyone feel pressured. Sometimes I just stir things up. Sometimes to change or start a new focus besides cancer. (Remember our cancer does not define us.) The best dialogue is when people participate. Obviously.
No one has ever come here with the goal of making friends. Interaction breeds familiarity and comfort. I am one who has always looked forward to opening this site, so that I could learn something new, share experiences, and see everyones picture. Believe me it is awesome medicine. Karma. But that is not why I joined this or any forum. Passion about the topic is. Take Iceman. He has no reason to be here. Small tumor, surgeon got it all about 90 years ago with sharpened clamshell. He should have forgotten all about this a couple of eclipses ago. Why is he here? What good does he do anyone? Medicine is greek to that attorney. Yet everyday he puts on his top hat and tails, opens the blinds, and starts every newbies nightmare with a warm, compassionate welcome. Assuring even the least knowledgeable that they will find the answers and support necessary to help them have a great outcome. Has anyone ever not been thankful to him when they think of this site? I doubt it.
Jan has a heart bigger than Irma. Her hand is always available to hold. Here is a lady I never met in person. Now I tell her I love her. I could go on because Steve and Jerzy, the Donnas. Kat, Ange, sarah, Apny, and Jojo are a few more giving of themselves to help others. None of them need help any longer. That is the definition of caring.
I have been surrounded by professionals my whole life. But I also am a patient. Just like most of you. That bond is unique. I do not visit every day to make new friends. That just happens. With conversation.
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No excuses
As a somehwat younger patient, I can speak for those who are Stage 1 and often want to "move on" from the pressure and worry of cancer. I am guilty as charged that I lose myself in my son, my job and get too comfortable with myself. The whole reason this site exists is to comfort and consult those like us and if you're not there to consult then why not just delete your profile? I know how you feel. I confess that some of the reasoning for not being here is technical... This site doesn't work right on mobile devices and I find myself using my iPad way more than my computer and this site is actually a preference that pops up automatically when I log on. But I rarely use my computer to surf the web anymore. So I kind of let CSN slip. But I plan on checking more often now. So I humbly ask permission back to the site.
- Jay
0
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