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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?????

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

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

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

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.

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

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.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

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.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

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. 

angec's picture
angec
Posts: 924
Joined: Mar 2012

Kathy, so good to see your post. Haven't seen you in a while. Hope you are doing ok. What treatment are you on? HUGS!

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

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.

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

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

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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.

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

Pos, because your picture shows you don't forget about others. Because you care about them. Your needs are secondary.

sandy23
Posts: 143
Joined: Jan 2017

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.

jason.2835
Posts: 337
Joined: Nov 2014

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

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

and your baby's!!!  Happy all is fine!

penitent
Posts: 79
Joined: Jun 2016

When Opdivo is just humming along and scans are coming in good or 'okay'...there are large gaps of time between things to report on my son-in-law.  I don't have the cancer myself, so it's kind of a third party update.  Is John having a hard time?  Depends on the news.  His last scans were clear, but he couldn't have his infusion of Opdivo last Saturday because his liver enzyme numbers jumped from 40 to 140.  My daughter and he are having an emergency strategy meeting tomorrow...so I'll something new to report after that.

I appreciate everybody's comments when I do post, but mostly I check in to see how you'all are doing yourselves.  Otherwise...I'm just not a very chatty person.

Blessings to all.

Allochka's picture
Allochka
Posts: 949
Joined: Nov 2014

It is a very serious topic we are discussing here. I also visit this site less frequently nowadays. One of the reasons - busy life. Our daughter has started kindergarten, and it is a pretty difficult time for her, plus lots of work/projects going on in my and husbands career.

But second, most important reason - I am a bit of hypochondriac. So sometimes I'm afraid of coming here and finding out that someone from our gang with Stage 1 diagnosis has had  a recurrence... I immediately would start thinking the worst - what of my husband would get it too? I am trying to fight hypochondria at the moment (meds, therapy), so I am afraid that frequent visits and cancer discussions would destabilize me. It is not the problem of this site, this is my own mental problem which I am trying to fix.

My apologies for not being here as much as it is needed by newbies and our old friends.

Alla

angec's picture
angec
Posts: 924
Joined: Mar 2012

Foxy!!!  That is an awful lot of people.  Where are they?  Lol. Actually, i have sent several emails to you but each time got a message there was an error, i gave up.  Sometimes i reply to posts and also get an error.  I try to get on when i can.  I have not been on top of the new meds etc.

As you might remember i help mom who had stage 4 then was ned, then two stable nodes and now she had a major heart attack. She had a stent put in but had to stop the votrient due to possible interaction with the blood thinners she has to take.  She just went back on a few days ago. Mom just turned 85, diagnosed at 79 and was told by her surgeon she wouldn't make it long.  He was not too up on all of the new meds. 200 mgs of votrient along with homeopathy helped bring her this far.  Very busy with her, homeschooling my son and dealing with my RA and fibromyalgia. My brother had thyroid cancer, his mil had breast cancer, and his fil has prostate cancer.  There is no shortage on which way to turn next.  

I have been on when i could to help when i can. But, my plate is very full and can't get on like i want to.  I always look for you and those other dinosaurs.  Miss our friends so much. I am sorry to see you having such a hard time. Are you still on Nivo?  Have you seen they are now taking tumors and fixing them and putting some cells back in to clear out the cancer?  Keep going for the new things, keep pushing for the latest treatments. Remember, you are our poster boy! We always want to know how you are. If i don't see a post i worry!  To all of our friends, stay strong, stay positive, keep busy and remember, rcc is now managed as a chronic disease. My mom, stage 4 doing pretty good for 85.  There is lots of progress and hope. Love you Foxy!  ANGE

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hey folks, no more excuses WHY you haven't posted.. it is all okay! 

You have your lives and your personal reasons are fine. 

BUT for those of you who don't feel you can post to newcomers, or because you're not good at being a great encourager, jut VALIDATE what they are going through at the time. Its THEIR experince not yours. But they want to know the process, recovery, pain issues, next step...things like that. You don't have to be a downer, or hit them with too much reality. Remember, they are NOT where YOU are now. 

They just want OUR SUPPORT guys. 

I personally know of one woman who left abruptly after being slapped by reality. i tried to reach out to her=no response, she just up and left us.

AND..the email system doesn't always work. Told Admin too. 

Post from your heart, when you have nothing more to day. 

Remember, they are scared, in shock or in denial. 

Know the stage of grief: shock/denial, anger/depression, bargaining, till, if ever, acceptance. And its not in that order. You can get stuck in any of these stages. THAT is when they come to us. Its for information and support. 

Hang in there. For all of you are special and unique.

Sending ALL  loving hugs, 

Jan

FLOSSER
Posts: 17
Joined: Jul 2012

I visit this site every so often to see the few that are still posting.(Especially Fox)It has been 4 years since my Captn Matt passed away from his kidney cancer mets. I stay busy with church. I live in the same home & work 3 days a week. I am the sponsorship chair of my county's Relay For Life. This year I raised $4,000 for the American Cancer Society. This summer I became a Hospice volunteer. There are so many ways to give back & keep busy. Glad to see so many of you still here helping each other. I will continue to check on you and pray for a cure for this awful disease. Hugs, SUZ

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hi Flosser, glad you posted. Sorry for your loss and what you have been through with your husband.

But yes, what a SPIRIT, to give back and do it so well. Hopefully others appreciate your efforts and talents!

I am a widow as well, and my last job was in Hospice work. It is very rewarding!

Sending you continued healing hugs~

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

I am so happy to hear from you. You lost the Captn, too fast. So sad. It is awesome you are so involved. I bet it is extremely satisfying. I can feel it in your post.

Stay well. Everyone needs you.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I am guilty of not posting for quite a while but Ihave had so mch going on and im sorry I let you people down.  You all help so much when I was diagnosed with kidney cancer and i will try to get back on here more regular to help with others.  Since i last posted I have had throid tumors the have biopsied and all was well.  This past Feb. I had a total knee replacement and i have been working since then to get my knee back in shape.  Still swollen.  I had a large lymph node under  my arm they biopsy and do not know why its swollen and that it is a fluid collecting in it but no clue where the fluid is coming from.  Istill have the mass in my right breast they watch every 6 months.  I now have liver disease, my liver is swollen below rib cage and they monitor that,  causes a lot of pain.  THen i had six month scans and found changes in the surgical site of kidney where cancer was in in August  so done an ultrasound of all my organs and found mass in liver and mass in left kidney.  Had a MRI last week and the changes in the kidney area is fat necrosis that is going up to the tip of liver.  Now i dont know all  i have to go through.  I dont feel good most of the time.  Very tired. no appetite.  I complained a year with pain in my left upper back and had scans in august 2016 feb2017 and aug 2017 and none of radiologist said anything about the pain until this August and i have a non healing fractured rib in the back.  Lung doc looked back at the scans and could not believe they did not mention that and it is plain as day on scan.  So my liver doc is on medical leave, cancer center gave me to nurse practitioner in august my 5 year survival so i get her now to watchmy scans and she knows nothing.  She said this MRI last week was a good scan!!!!   So my family doc said she had a gut feeling I need to go to Mayo Clinic with fresh eyes and fresh docs to take over me and check me out with all this stuff going on.  She said necerotic tissue would not still be there after 5 years.  It would have been gone long ago after surgery.  So I dont know.  Thats why I not been on here,  But I need the support and I will do better.  I seen where Someone said Stomps passed.  Sorry to hear.   But I need prayers, vibes as I travel around to new docs far from home.  Hope you are stable Fox.  Miss you.

love_of_my_life
Posts: 77
Joined: Jul 2012

Fox, you and many others helped out so much back with the diagnosis and surgery for my wife in 2012.

I hang out on this board and check in once a month.

Tomorrow is Holly's 5 year scan result appointment and the anxiety doesn't get any easier year after year.  You guys are the best.

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

for awhile.. on the Oregon Coast.  So was my internet... We are back at home in good old Sloughhouse, California.  I have survived the summer, and the "old" new normal starts over... again.

I am passing my five year diagnosis in 6 days.  I am at 3 yrs, 9 months two weeks since being classed stage 4.  I joined after the brain surgery, and have had such great support emotionally here.  My friends found here are all important to me, and I check on you often. 

It takes a Fox post to jolt me to pipe up again on this site... I played turtle after I read Stomps was gone.  I went through a tough summer,  and once I get a few more ducks lined up with oncologist tomorrow, I will catch up with all of you "oldies"  later on.  

Still living, loving, trying to FLY... 

Pam

Pam

 

Mary H.
Posts: 17
Joined: Sep 2017

Just joined recently and have been  posting where there is something I feel I can comment about with some degree of knowledge.  Try to point out that I had a diagnosis, had surgery, and just got on with my life.

Since you  rode a motorcycle, something you might find of interest:  We bought a bike several years ago, a big touring model.  Figured when we were semi-retired we could go on road trips.  But my husband quickly learned, from a couple of tipovers, that the legs he used to have and the legs he has were two different things.  So...sell the bike or convert it.  He spent four years turning it into a trike.  In June, 2011, 4 months after my surgery, we took off on a 26 day, 10 state, 4000+ mile adventure.  We did another trip in 2013.  Mostly the same states, but  visited places we couldn't go to before because of time constraints, but about the same distance.  In late August, 2014, my husband was diagnosed with lung cancer.  He went through treatment and it was gone.  However, in September, 2015, we knew our extended trip days were over.  We made plans during the winter for weekend trips to nearby areas.  The best laid plans....In February, 2016, he had trouble swallowing.  A trip to the ER.  Scan, scope, biopsy.  He had esophageal cancer.  Was given 6-12 months.  He lived only 7 weeks after the diagnosis.  Now...I have a beautiful trike...and no one to ride with.  Need to put it up for sale, but my heart won't let me do that.

One reason I don't post much...I start to tell people how well I'm doing, being able to take the road trip and all that, and it segues into my husband's condition and death. 

Anybody in the market for a trike?

lcsvb's picture
lcsvb
Posts: 41
Joined: Jan 2016

I am coming up on my 2 year "scan"niversary of when I started my cancer journey and y'all gave me great hope and advice before surgery.  I am so glad to see so many of you alive and well! I have moved from the hot humidity of Florida (surgery at Moffitt) to the arid desert of Arizona! I am in search of a good Doctor to switch to for my December scans and such. Do any of you have any recommendations in the Phoenix area? Is the Mayo clinic here known for renal cell carcinoma expertise?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hello all! I have been very very neglectful these past months. Please accept my most heartfelt apologies! Foxy was very gracious and mentioned me in a favourable way. But I didn't deserve that. I won't be making excuses, but life has been incredibly busy of late. Please know that I think of you all often and send out good thoughts hoping everyone is doing well (in fact, I woke up at 4:00 this morning thinkng of you!).

On this site I have had the good fortune to (virtually) meet some of the kindest, compassionate and caring people. You people reassure me that there still is so much good in this scary world! 

So as the colder weather approaches, I vow to participate more here!

Lots of love and hugs

Jojo

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

You've been missed.  I hope all is well.

Donna~

I am alive
Posts: 315
Joined: Jul 2012

i checked into this site specifically too see what you were up to, Fox. And I see you are stirring the pot!!

Happy you are here, happy you are encouraging folks to reach out. I've been gone for many months. Like other longtime members I get sad when regulars die. It makes me stare at my own mortalitY. And i miss them & feel bad for their families. And, like others, i tend to limit my comments to things I have personally experienced. Others are wonderful blanket encouragers and I stand humbled & grateful in their presence.

I have Chromophobe, a rare RCC subtype. The good news, it's slow growing. Thirteen years since diagnosis, 9 years stage 4, drug-free for the last three years, five months while watching small, incremental growth. But a 4cm tumor was surgically removed from my shoulder, replaced with  a rod, screws & plates, two years ago. One year, four months ago  I  had spinal surgery (more screws & plates!) to repair spinal fractures incurred from radiation back in '11. I'm giving the litany of all this to leave a footprint for another chromophobe who might read this & see a long road ahead for him or her self. 

I've got probably a half dozen tiny liver mets, and more groin & lymph node mets, and my onc wants me to begin Opdivo soon. No, he doesn't know of any chromophobe who has responded to it, but there are so few of us it's impossible to know if it doesn't work! So might as well try. And so life goes on, and it is good! I've said it before and I will say it again - you are my hero, Fox! Never leave us.

JackieP125's picture
JackieP125
Posts: 56
Joined: Jan 2012

Hi Everyone.  For the first couple of years before and after my neph,  I posted on this site regularly.  But since I had lots of complications during surgery, I felt it better if I did not share on this site for fear I would scare someone or cause unnecessary worrying. Since then I have still kept up with everyone by reading/stalking your comments.  So to answer Fox's question.....that is where I have been for the past 6 yrs.  I have kept up for Fox's post all this time because he is a miracle.  God Bless Everyone!  Praying for all fighters and survivors. 

saintmont
Posts: 63
Joined: Feb 2013

Hi people I only post sometimes  its because I'm in Tasmania. I am doing fine I like reading post but not good at expressing myself in posts. I have just celebrated 6 years since operation to remove RCC and 5 years of treatment I have being on an opdivo trial for 23 months . Before Opdivo I was on Affintor, Sutent,and Votrient. I have being a poster boy Opdivo in Australia I have being interview on TV about it. In Australia Opdivo has just gone on our PBS which means it only cost you $38 per infusion if your under the public system.

Regards saintmont

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Fox, old friend. I must admit, I am one of those who was relatively active when I was a cutting edge Nivo guy. I recently celebrated 5 years since diagnosis. It had the pleasure of reading my doctor's notes from my first visit When I was in for my infusion last week. It brought back a lot of emotion and reminded me that CSN was a huge place foe support as I struggled with worry. Since my arm of Nivo was never approved, nor will it ever be (Nivo plus Sutent) I had less and less to contribute. My recollection of diagnosis is not crisp, and I know little about the new treatments. 

Honestly, I check in to see that you are still doing what you do best, supporting your friends. I read and post when i feel any advice I have is not redundant, but those times are becoming less and less frequent.

as a stage IV cancer patient Passing 5 years, I know I can offer hope to many that the news of cancer doesn't mean the end. In the five years since, I have only missed work for 3 weeks, just after surgery. I missed a couple days for unexplained headache, but other than that, have lived a normal life. I have lost friends to RCC and feel almost guilty posting how well I have been doing.

i am still here, still checking in and offering support where I see I can add meaningful input. 

 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Great post and I do agree.... It is a strange thing. We live in a society now that lacks committment and social skills. Communication is no longer an art. I also agree that we should discuss finances and how this affects us in every way. Why not?? We have all gone through or are going through it. This is real life. Why not be honest? Why not open ourselves and be vulnerable. Write posts with honesty and be genuine with answers. My surgery is one week from today and I appreciate all the tips I have received. We like to be islands unto ourselves, but now is not the time. I find it helpful when some of you really open up and share. Brave even. It is also comforting to know that if you made it through then there is hope for the rest of us. Thank you for your post!

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

My thoughts and prayers are with you on your upcoming surgery.  Keep us posted when you get home!!

Pandabear1011
Posts: 123
Joined: Jun 2014

I'm still here. I stay busy with my home and family life. I was moved to yearly checkups back in February 2017 and it has given me time to let go of some of the anxiety related to cancer. I still check in here from time to time and comment when I feel like I can be of help. I also keep everyone in my thoughts and prayers daily. Love and Hugs, Panda

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I just like to lurk.

I'm an introvert, so I will spend most of my time reading, and not interacting.

I've also had a stable few months since surgery to rebuild my tumor addled hip.

I've really tried to live a bit of a normal (pre-diagnosed) life while I was able, before roped my back in to reality.

I also use the word "I" a lot, I've just noticed. It's embarassing....probably part of the reason I don't post much ;)

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