Where is everyone?
Comments
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"281 reads in 12 hours. I can
"281 reads in 12 hours. I can hear Jerry Seinfield saying, "Who are these people?""
281 reads does not equal 281 people have read the thread it only means the thread has been opened, or read, 281 times.
Right now there are 21 posts and 300 reads. If one person reads the thread every time there is a new post then he/she would have read the thread 21 times.
(You can refresh the thread page it counts as a read when it is refreshed)
You can divide 300 reads by 21 new posts to read, it is only 14 people.
However we can assume more than this have read the thread because many people are not reading every time there is a new post and instead might see and read the thread when there are three or so new posts, for example.
You do not have to be a member of the forum to read a thread and have that counted as a "read".
Last check the "treatment with interleukin 2" thread opening post has no reply and 114 reads over 5 days.
Same number with the "clinical trial sutinent and votrient" thread opening post with no reply over 4 1/2 days.
This forum is a very important global source of survivor contributions. People from all over the world read this forum, for example from Asia, Africa, and South America. For many of these people English is their second language or they might even run the threads through a translator. These people are unlikely to join the forum and post.
We also have an enormous number of people searching for information for different reasons either for themselves or to find out what is happening to those they know. These people are not searching for a forum to join so they can have a chat.
For example, after my diagnosis I had a friend contact me and tell me she had found someone on a forum who had a 13cm tumor removed and who was still alive 15 years later so I shouldn't worry too much. My friend had been searching for information about kidney cancer to understand what was happening to me, including reading forum threads, but had absolutely no intention of joining a forum and having a chat. That wasn't what she was doing.
One person could easily have 20 other people, including family members, friends, and colleagues, search for information about kidney cancer when they hear about the diagnosis. These people will read forum posts related to their search, or read the latest topics of a forum they find, but they are not going to join a forum and have a chat.
Only a small minority of people join a forum like this and only a small minority of that small minority regularly post. That is the nature of things.
Also, as some people have noted, of that small minority of a small minority, many really do not want to be here, as much as they love and care for other patients and survivors.1 -
Be careful what you wish for
I reckon at least 10 of the hits on this page are due to me. Maybe 20. I pressed refresh a few times and watched the counter going up. I've also visited the page several times checking for new messages. When I submit this post I bet the count goes up again.
I understand what you are saying though. I guess not everyone is a supportive type.
Anyway, if everyone who read a post made a comment this site would be flooded.
Steve.
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Experience,opinion,goodwill
I'm a newbie. Duringing the day I check in to see new replies. I don't reply to posts beyond my experience, but do to situations I think my opinion might help. Often I Google the Meds and symptoms posted. Helps with my own education. I have gone back about halfway of the almost 100 pages of this forum, about 4 years back. I have learned so much. Met many of the people you have mentioned through their writing. The forum changes often in the nature of posts over the 20 odd years. From newbies, current treatment, mourning of friends. Also there are many light hearted posts that seem to be not posted as frequently as in the past. I am going to try and read all of them as I learn a lot. I am guilty of reading a lot and not posting. But I am uncomfortable posting on subjects I have no experience with. I hope this long post explains my lurking.
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many people
from caregivers to stage 4 have been doing this a long time. Many stop in as little as once or twice a year. I want to get to that point. To live a normal life not dominated by cancer every day. But no matter how it is explained, the numbers are staggering. At least in my mind. I would be surprised if more than 10 of us have posted regularly for at least 5 years. I don't know what that means. I do know the steady dialogue sure has helped me. I don't need much medical advice but the emotional benefit has been so valuable to me.
I'm not suggesting everyone needs to participate. Actually I wish everyone got better and this site dried up.
But 52,000? I also am amazed when I read back and see just how many people post just once and never return to the site again. I wish I could have moved on so easily.
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I joined this forum when my
I joined this forum when my husband was diagnosed back in May. He's since had his nephrectomy, and I will continue to read and post here because I want to help others, just as you all have helped me (us). I, personally, find it comforting to participate here.
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Guilty
I am one who reads posts everyday but more and more don't jump in. For those who don't know me (most), my husband is the kidney cancer patient.
Fox, I think you know what a guiding light you and Ron were following the devastating diagnosis; two guys with stage 4 riding motorcycles, playing golf, just being alive gave me not just information but encouragement that it was not the end of the road.
Today, we have lost Ron to not cancer but complications and we have Fox with some debilitating side effects but still kicking and still the guiding light.
So, my update is that my husband has not yet (and hopefully never) taken meds but has had SBRT several times; his cancer so far has remapines in the bones. That would be "remains" with one small met in the opposite adrenal which surgery handled. Everyone and every cancer is different and I hesitate to share my thoughts on the meds currently available. Initially, it was exciting but the more I read, the less excitement. The side effects and toxicity of them freak me out and the quality of life issues are at least in my mind.
it has been just over 4 years and once he went through the initial 4 months of hell (surgeries, hospetal stays, etc.), we have been blessed with 4 grandchildren, lots of trips to Hawaii, vacations at Lake Tahoe, the mountains and this summer, he took a trip to Turkey and reruns from Palestine tomorrow after two weeks of walking through history. He retired in 2013 but I work. I am not big on long flights and he manages well as a solo traveler so it has worked well.
he is set for MRIs, a PET/CT scan in October and honestly, I really hate those follow up and necessary tests because the dread is that the charmed life will end. I don't know how he would be doing if he had taken xgeva (now being reviewed by studies), votrient and other medical recommendations. There is a lingering cynicism in me about those meds really extending life but I won't go into that here since I am not a doctor nor want to discourage anyone.
That is my update today but I promise to post more; Fox, you have been a dear cyber friend and I cherish your posts. I hope you keep posting.
Sarah
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It is really nice to have a
It is really nice to have a place to read about and talk to people that are going through or have been through the same thing as you. This diagnosis is such a shock to hear and process. While friends and loved ones help... it really helps knowing people that have been in these shoes. To share your complaints and victories and fears because they understand on a level most cannot.
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I dont think there is
I dont think there is anything "wrong" with reading and not posting. People are unique individuals. How anyone uses this site is their personal choice. One very important fact to remember is that this is a public site. When I first googled RCC I read a post by Fox on this site back in 2012 or 2013. I really dont want to share in a public forum.
Another issue I had was the barrage of praise re positivity by the people who post frequently. When i havent felt well, I did not feel welcome. I emailed with Djinnie and also with NeilF. To me, its terribly sad that they felt they couldnt share the worst part of their journey with RCC on this site. They cared deeply for all of us.
You posted this question, and I hope I dont get blasted for my opinion, but if I do, it kind of proves my point. People who think a bit different than the frequent posting members are not very welcome.
There was someone shamed for not wanting scans and someone else for not wanting treatment. These people have every right to speak, be heard, and belong. They should be respected.
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a_oaklee said:
I dont think there is
I dont think there is anything "wrong" with reading and not posting. People are unique individuals. How anyone uses this site is their personal choice. One very important fact to remember is that this is a public site. When I first googled RCC I read a post by Fox on this site back in 2012 or 2013. I really dont want to share in a public forum.
Another issue I had was the barrage of praise re positivity by the people who post frequently. When i havent felt well, I did not feel welcome. I emailed with Djinnie and also with NeilF. To me, its terribly sad that they felt they couldnt share the worst part of their journey with RCC on this site. They cared deeply for all of us.
You posted this question, and I hope I dont get blasted for my opinion, but if I do, it kind of proves my point. People who think a bit different than the frequent posting members are not very welcome.
There was someone shamed for not wanting scans and someone else for not wanting treatment. These people have every right to speak, be heard, and belong. They should be respected.
disagree with DJ and Neil not feeling comfortable posting; both were quite ill at the end and couldn't post. They shared quite a bit. I do agree that not everyone is the same nor that everyone should post.
When someone is dx with a terrible disease, it is the most heartening thing to read that someone similarly dx is still around, still engaged 4, 5 or 6 years later.
i don't feel obligated to post and yes, there is a small likelihood that a post can go publi as are most things online; there is a sense of wanting to give what I got when faced with my husband being dx with stage 4 and my world got rocked.
DJ didn't want to bring anyone down; she was not seeking privacy but being unselfish as was her styl; TW was at the end of his journey when I joined but he posted and his posts made clear that his particular type of cancer was extremely aggressive and urging others not to lose heart. Again, unselfish.
We die as we live and that is our own individuality; I end this by saying that my post is written with respect for all views
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oaklee--
I completely agree with your statements around this being a public forum and people using it as they need. But, since you bring it up in your last paragraph, let me share how I took those conversations. (I was one of the members that posted on the thread about not wanting scans). I think people responded as a plea in their attempt to help. It did take a turn partly because of the passion people have about their desire to help. But, those type of conversations help us grow in our perspectives and beliefs. I love those mental and spiritual challenges because it opens new avenues of thinking. I encourage you and others to post (or read) feel good stories and challenging perspectives. All of them are benefitial.
Stub
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Guilty
Hello Fox,
i just want you to know. I hear you. I see you. I am afraid. I'm afraid to look at this evil. So I watch on the outside. It feels safer here. If I speak out and acknowledge that I am a part of this evil disease then it becomes real. I don't want to see the truth.
Thank you. Your words will and have carried a lot of us "sideliners" along. Hang on Fox!! Keep on Truckin!! we Are watching!!!
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Hoovering
Many years ago before the days of Facebook i was part of some sports forums. We would talk about the people that lurked but didn't comment. Someone made a comment that they were "hoovering". He meant hovering but we all got a good laugh about hooverers and from that day forward we referred to lurkers as hooverers. This brought back some great memories. I admit I have hoovered here. I think anyone that need to find information to help them through this and doesn't want to share should do that. I gathered much information on my own and with a friend who went through this in March. I was overwhelmed and needed to be in my head with this information before I was able to talk about it in a forum like this
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Stage 4
Srashed: You misquoted me. I never said anyone was uncomfortable with posting. For the record: You and I agree with eachother.
My intention of posting now is only to answer Foxs inquiry of why I read but not post.
I thought of another reason for why I dont participate more. My husband was diagnosed at Stage 4. Frankly I am so busy helping him survive and doing research that I dont have anything left to give to newbies. There was a time early on when I did, but his condition warranted me to get more involved at Smart Patients. Smart Patients has more Stage 4 patients.
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Posting
I have been guilty of not posting much here. I do go to Smart Patients daily-sometimes twice a day-and I do write on that board frequently. I also appreciate you so very much. When my hubbys cancer returned last Feb., you were the first person who got back to me. Since then you have been there for me several more times.
I promise to post more on here from now on.Thanks for the reminder. Caring is like a well-you cant keep taking out without putting some back in.
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No rules, no guilt
There is no reaon for anyone to feel bad about not contributing.
A gift not freely given is not a gift.
Steve.
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Oh and Foxy, here I thought
Oh and Foxy, here I thought you were upset with me? Honest. I send you an email and never heard back. Now I know why. I even asked admin if they knew you (and JoJo) got my emails.
I too lurk, but on other sites for other people. I had a wild month of July where I was on Bone Cancer site, reading everything, until... I got the answer that the 3 spots on my spine were not really there? It as another kind of relapse. Not fun.
What I learned though was to appreciate coming back here. Hard to muster up support when you are facing your own "stuff" right Foxy? There are a lot of new folks here. BUT why does it matter if anyone just visits, or posts 1x or never returns? That is just human nature on the internet.
BUT to stay...aah.. to connect hopefully, to understand, but to VALIDATE another's experience.
So yes, you have been on my mind and forever in my heart. Be real with ME please. You can email me...if.. you wantlll
Sending you serenity, connection, appreciation and yes, caring LOVE, like so many here..you'll see CARE ABOUT YOU!
And yes, your bada**s is stirring up yet another conversation.. wherever it may go... and go...
Sending you gentle, understanding hugs, the kind that touches your heart & brings happy tears to your eyes!
Jan
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I have to admit I started visiting and posting
less, ever since we lost Stomps but that is not the only reason. I was also starting to live my life without remembering everyday what I had gone thru or thinking about the what's and ifs... Also I sometimes don't have the experience to offer advice. But I think that both Supersum and Fox together have expressed all the things I have asked myself, believed and experienced about this subject. 3 years ago I joined and soon after I basically knew everyone who posted regularly, it was like family but don't get me wrong! There are amazing and wonderful new people here that help so much that are so giving and caring, others are so funny and fun to read, some very, very witty! Things and people come and go like waves sometimes.
I have been so busy with my passion: photography, it has been a blessing for my crazy head! Also my 2 new grandchildren! I will always come back even if Im around less frequently. This place made me keep my sanity and the inmense pleasure of laughing out loud, after I had gone thru hell and back and for that I will always be grateful. I also love to be able to help make others feel what I felt here then; that there is a life after diagnosis and that cancer does not define us as Fox always says... and speaking of Fox, I don't even know how to begin or what to say but I think and I hope he knows! You do, don't you Foxy!
Take care everyone! We can do this together. And yes all those topics that are missing about our life and how we carry on and what we do... I think I am or want to be in that frame of mind on this moment, but I uderstand that its not everyone's priority at this moment. I love when we cover other aspects of our life or the many other things of how we live our life after diagnosis with work, family, friends, state of mind, fears, hopes. I'd love to know how more people out there in a very similar case as mine are doing and I get discourged of finding so many "blank" my space pages with no info!
But no more complaining. This site is one of the best things that happened to me since my world was turned upside down or so I believed! Love to all.
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