Where is everyone?

foxhd
foxhd Member Posts: 3,181

I've had several messages from friends I've made on this site. They notice I've been quiet. Neuropathies make typing difficult for me and it can take 30 minutes or so to post a message. I no longer can play guitar or ride motorcycles, or use many tools. Including eating utensils. I have my ups and downs but manage to be active and remain independent.

I have been a part of and witnessed many relationships develope here in 6 years. Sincere concern and support for each other made this a place so valuable. Now many of my friends are dead or have recovered and moved on. I am the dinosaur. Further and further away from 95% of the topic posts affecting new RCC people. My journey deals with complications and issues few have yet experienced How I hope most of you never know what I am talking about. Organ damage. Dental issues. Paralysis and sensory dysfunction. Sometimes I swear I am end stage M.S. Psychotic episodes literally drive me insane. How do I hold it together? I think I do anyway.

In  any event, I often wonder what happens to some people. Are we a culture of peeping Tom's? Do we draw the type of people who always take a penny or two from the dish near the register but never donate one?

A thread has popped up started by Hannah 814 from 2006. It has had about 60 responses. Of those 60 maybe 8-10 took the time to join this site,( I didn't count) took the time to post, and never again visited this site. What????  How can that be? What does that mean?  They didn't get suddenly better and move on. And not likely had they died. And this is just one post! There have been hundreds like this. The  real mind blower is that the thread has had over 50,000 reads!

50,000 reads and only 60 responses. Some dead. A few still here. The rest weren't really interested in participating. Why post at all?

The best posts are of being NED. We follow the stories with joy and are thrilled for the thanks of support in return. Feels good all the way around. Many move on but many are still here with encouragement for the new and scared.

So I gotta ask. Who are the 49,000 people who feel there is nothing to contribute? This number is mind boggling. Perhaps someone can explain away a couple hundred of them. But 49,000?????

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Comments

  • Hd67xlch
    Hd67xlch Member Posts: 151
    edited September 2017 #2
    Im guilty of reading posts and moving on..........

    I dont really have anything to contribute unless it comes to someone asking questions about lung surgeries due to rcc mets. Its been over 6 years now for my kidney removal and I dont even think about that anymore.  Me Im NED now but realize that most likely I will have to deal with this disease again in my life time, I just try to forget about it till when and if the time comes again Good luck to you.

  • BoondockSaint
    BoondockSaint Member Posts: 242
    I'm fairly new......and while

    I'm fairly new......and while I don't read every day, I do often and contribute when I feel I can be a benifit. I think I will always have a tie here and will always be drawn, just for the simple fact that this place was a "Lighthouse" for me when I was in a fog.

    Ya'll aint gonna run me off!!! hahaha

  • Angie1496
    Angie1496 Member Posts: 154
    I just joined today!  not

    I just joined today!  not sure why I didn't before now.  Too much was happening too fast I guess!  im 1 week post op... 

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Don't blame me

    I try and ice down most of the newbies. Most of the time it works although every once in a while someone takes offence at my comments.

     

    Icemantoo

  • Trucker1
    Trucker1 Member Posts: 82
    Very Helpfull

    I have read everyday since I first found something was wrong a month ago..

    For newbies all things are so overwhelming and absolutely scarey, I don't know what to say or if I'm saying it "properly". I have used your stories as hope that my life is not over just headed uphill for a time...I truly  appreciate all the post. .Fox, iceman and boondocks saint-Thank you!!

  • lobbyist0724
    lobbyist0724 Member Posts: 484 Member
    edited September 2017 #7
    Fox, I wouldn't say I

    Fox, I wouldn't say I understand how you feel since I know it is not even comparable... but I already find it overwhelming for myself worring about the future everyday (especially when I look at my little girls...)

    I read daily and will anyser any questions related to Cystic RCC, which is what I am had.

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Hi Fox

    I googled 'problems after nephrectomy' and Hannah's post from 2006 was near the top of the results. That probably accounts for most of the 50,000.

    Steve.

  • foxhd
    foxhd Member Posts: 3,181
    6 responses in 5 hours

    with 128 reads. Who are these people?

  • APny
    APny Member Posts: 1,995 Member
    I read for quite a while

    I read for quite a while because this site is not the most user-friendly to register. It kept saying the user name was taken so I tried again, then it wanted a different email so I had to open one, blah blah. It really was a royal PITA but I'm glad I persevered. But difficulty with registering still wouldn't account for 50,000 readers of a topic, obviously.

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    I'll post tomorrow...after

    I find out what's on my CT scan.  I already know I have to have an MRI of my brain to get a new baseline for staging.  And don't even ask about the mind games my hospital plays with patients.  I tried to ream the Radiology Dept. Ch. an new one last week and fired off a very specific set of complaints to the Hospital Administrator.

    Later...at least I only have asthma from the wild fires and our house is still standing.  And regrets to all my southern friends about Harvey and Irma.

    donna_lee

  • Zoozoo
    Zoozoo Member Posts: 1
    New Here

    i have been lurking here because I am expecting a kidney cancer dx on Tuesday. Blood in urine brought me to the urologist.  Had CT scan--dr office said I had some abnormalities.  Got the paperwork for an MRI and it said for a kidney mass on left kidney.  Why a CT then a MRI?  I'm thinking they want to stage me. 

    I'm a 49 year old woman.  

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Zoozoo

    Zoozoo,

     

     

    Not sure why the MRI. Ask the Doctor about the size of your suspected mass. Also since you are startng a new topic open a new forum post and fill out your bio under Mycsnspace.

     

    That way we can help you the most.

     

    Icemantoo

  • Supersum
    Supersum Member Posts: 109
    edited September 2017 #14
    Everyone has their own story.


    Everyone has their own story. One day things are humming along nicely next day there's a shock awaiting, there's a thing growing inside you which wants you dead. It happens to people from all different cultures, social classes, and demographic groups with vastly different personalities, all with varying levels of support ranging from a close extended family and a network of close friends to almost no support at all.

    All these people have different needs they don't all want to or have the confidence to start chatting with people on an Internet forum, even though they might find a huge amount of comfort and understanding from reading the posts of others.

    When I was diagnosed I undertook a crash course in learning about kidney cancer from all the documentation, websites, research papers, forums, and youtube. It wasn't in my mind at the time to join a forum and have a chat with people.

    There would also be a multitude of people wanting information about what is happening to their loved one, friend, classmate, acquaintance, neigbour, or colleague. These people generally do not have any real need to join a forum and start chatting.

    foxhd I remember seeing your photo in the early days of my investigation I remember thinking here is this big tough guy in a leather jacket he's been through what I am going through and he's still here nearly six years later this guy can be an inspiration to me, I will be like him I will tap into my inner tough guy and I will get through this hell.

    At the time I did not have any inclination at all to join the forum and start chatting.

    After my nephrectomy I realised this was going to be a very long journey so I joined the forum and tried to contribute when I could. However most times I don't post anything because I worry what I say is not right or my manner of communication is not good or I might seem foolish. A few times I have spent over 30 minutes writing a reply and then just deleted it because of this. Not everyone finds it a smooth process to interact on a forum, even those few who join. 

    Anyway brother you are not getting "further and further away from 95% of the topic posts affecting new RCC people". In fact you are getting closer and closer the longer you are here, you were right there with me long before I had my nephrectomy and joined the forum. You can't be there to give someone scared a hug, you can't drop by to go for a walk with someone feeling alone and depressed, but you can keep posting, offering your insights and friendship, and finding some comfort yourself when things aren't going well for you. 

    Keep on truckin' buddy.

  • BoondockSaint
    BoondockSaint Member Posts: 242
    Absolutely.....Fox you are

    Absolutely.....Fox you are like a stone. 

    Some people, at least I think may join to gather info and converse with people who are going thru a similar situation. The they pull thru and life goes back to normal, or a new normal I should say. Then they fade back into the shadows and read and lurk which is fine. As long as somebody get something out of our ramblings, then we have done some good.

  • stub1969
    stub1969 Member Posts: 954 Member
    edited September 2017 #16
    That explains it

    I've been waiting for a response to the last message I sent you.  Have you looked into some adaptive technology i.e. voice to type?  You'd be amazed at what is out there.

    As far as this post goes, I agree with Supersum.  Everybody is looking for different things.  Quite honestly, If I had a post that had 50,000 reads and a few responses, I'd feel good about the possibility that we helped a few of those readers.

    I appreciate your post, Fox. Collectively we are stronger in our knowledge and support.  I hope you stick around and continue to contribute because your thoughts and comments mean a lot to many people.

    Take care

    Stub

  • hardo718
    hardo718 Member Posts: 853
    That's a crazy high number!

    Personally, if I feel like I can't contribute anything worth while, I move on to a thread that I can say something of value.....I hope.  :-)   I'm glad you checked in, been thinking about you lately.  Wishing you wellness so you can carry on with the things that mean the most to you.

    Donna~

  • foxhd
    foxhd Member Posts: 3,181
    A big part of what I'm saying

    is if literallly thousands of people find this forum necessary to read, then why not participate? There are always a hundred reasons and excuses why people come and go, but thousands and thousands on this site are just just lurkers?  Again, keep in mind we are not talking about a hundred people but thousands.

    We are missing out on experiences and opinions. I think there is much to be discussed. Relationship issues.Loss of income, insurance, home. Maybe things like social stigma or feelings of abandonment. Maybe hospice issues. Has anyone given up the corporate world to sail around it? There is so much territory to cover after diagnosis, nephrectomy, and scars.

     

  • foxhd
    foxhd Member Posts: 3,181
    icemantoo said:

    Don't blame me

    I try and ice down most of the newbies. Most of the time it works although every once in a while someone takes offence at my comments.

     

    Icemantoo

    Don't blame me

    LOL! Iceman, you are the mayor of this site. Full tenure.

  • foxhd
    foxhd Member Posts: 3,181
    edited September 2017 #20
    281 reads

    in 12 hours. I can hear Jerry Seinfield saying, "Who are these people?"

  • foroughsh
    foroughsh Member Posts: 779
    I'm stage two so although I

    I'm stage two so although I read most topics, it's not easy to participate in a subject I have no experience about,so I usually end up replying newbee's posts or NED related topics. Sometime I really want to participate but I don't know what I should say to someone who's dealing with stage four difficulties. Reading those posts also brings back all my fears of what if it comes back!. I unintentionally want to make myself believe it's gone for good and each and every post with non happy ending stories make me terrified about my future so sometimes I log out and make myself busy with something else just to forget my fears.