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foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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?????

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

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's picture
BoondockSaint
Posts: 240
Joined: Mar 2017

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's picture
Angie1496
Posts: 154
Joined: Sep 2017

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's picture
icemantoo
Posts: 3208
Joined: Jan 2010

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

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's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

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's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

with 128 reads. Who are these people?

APny's picture
APny
Posts: 1933
Joined: Mar 2014

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's picture
donna_lee
Posts: 892
Joined: Feb 2009

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
Posts: 1
Joined: Sep 2017

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's picture
icemantoo
Posts: 3208
Joined: Jan 2010

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's picture
Supersum
Posts: 103
Joined: Aug 2017

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.

Mary H.
Posts: 17
Joined: Sep 2017

Just wanted to let you know I love your profile picture.  My husband was part Lakota and his spirit animal was the hawk. 

BoondockSaint's picture
BoondockSaint
Posts: 240
Joined: Mar 2017

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's picture
stub1969
Posts: 790
Joined: Jul 2016

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

HAHA... good one!

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

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.

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

"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.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

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.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

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.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

DreamOnDeb
Posts: 112
Joined: May 2017

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.  

Srashedb
Posts: 482
Joined: Dec 2013

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

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

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.  

a_oaklee
Posts: 436
Joined: Nov 2013

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.   

Srashedb
Posts: 482
Joined: Dec 2013

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 

stub1969's picture
stub1969
Posts: 790
Joined: Jul 2016

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 

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

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!!!

JoanneNH
Posts: 115
Joined: Sep 2013

Not the first time Foxhd has scolded people,  perhaps trying to make us feel guilty for not participating in conversations.  Works for a short while.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

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  

 

a_oaklee
Posts: 436
Joined: Nov 2013

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.

Bellafelice
Posts: 57
Joined: Sep 2008

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.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

There is no reaon for anyone to feel bad about not contributing.

A gift not freely given is not a gift.

Steve.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

Srashedb
Posts: 482
Joined: Dec 2013

fox: 

now I am hurt that you didn't mention me....

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

Srashedb
Posts: 482
Joined: Dec 2013

fox: 

now I am hurt that you didn't mention me....

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

from you lately Jan. I've had evidence some others have tried to communicate with me unsuccessfully too. Admin. says nothing appears wrong.

marosa's picture
marosa
Posts: 332
Joined: Feb 2015

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.

  

 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

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. 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

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

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

HUGS Annie! Well said!

Jan

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

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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