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

Just a vent.

I've been here 3 years now. I came here like most of us do. I had questions. Needed answers. Once I got them I didn't abandon this site. I shared my experience and progress with those that helped me out. And those newer than me who I was able to help. My testing, biopsies, surgery, information on clinical trials were reported on. I was able to share that which was fresh in my mind. Not so fresh anymore.... But those things are much more fresh to all the members who have joined here since then.

However, When newbies come along with basic needs, most of the support offered is from members who have been here a long time. Why is the participation from newer forum members so poor? Dozens read this site everyday. Yet few participate even monthly. For example, I'll bet that over the course of a week only 10-15, people start or answer a post.(and that estimate is probably high)  However when our beloved member Ron passed away, we had nearly 50 members submit a post in 4 days. We all loved and will miss Ron but where is everyone day to day?

Folks we do this together. Everyone has something to share. Information like, "When can I exercise? Incision vs lap? oncologist vs urologist? clinical trial vs approved drugs? stage 3 vs stage 4. And let's not forget humor. We've had people voice complaints about our jokes. Thinking they are inappropriate on a cancer site. And that is their only post in weeks or months. Sometimes people who joined this site did well and disappeared. 6 months or a year later when things may have changed, they are back. Not to share optimism but to pick up where they left off. Asking us for help.

We will all dearly miss Ron. Anyone who has not watched the video interview of him is missing what a true friend is. Ron cared about others. Ego-centric he was not. Ron was always sharing information, offering advice, and lifting others spirits all the while he was suffering from complications from his own cancer. Karma folks.  Ron was probably our leading poster. But no more. I am sure he would love to see all our lurkers pick up the slack in our forum participation. In about a years time we lost not only Ron but we lost Texas Wedge.  I think that because of the effort that they both provided, this has been one of the most active and beneficial cancer forums for its members. There used to be a commraderie that was almost palpable. Yet one of the most common complaints that I read here is about people not having a support system, or being alone, or not having friends or family that understand. Some close friendships have developed here due to active participation.  But not recently. I don't get it. I thought that we were all in this together.

angelsnls
Posts: 67
Joined: Nov 2014

Hi foxhd I hope that I will still be a participating member of this site for many years to come, I am sorry that I did not know Ron he sounds like a really wonderful guy, it will be nice getting to hopefully meet a lot of new friends and hopefully helping with any advice I can. There is nothing better than a few jokes for making people laugh and it helps cheer others up. 

Take care and look forward to getting to know everyone on this site x

Srashedb
Posts: 482
Joined: Dec 2013

Fox:

you always start interesting discussions; I agree that this forum should be questions, answers/experiences, information sharing.

i came here because of my husband AND because when I was dealing with breast cancer in the '90's, the exchanges were so helpful and because giving back is such an opportunity.

sometimes, i have refrained from sharing because the person is just at the beginning of this with some not-so-great facts and despite the naivete, who am I to impart information.

I love this board so will commit to sharing more.

How are you doing, Fox?

Sarah

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

foxhd, I am a newer poster.  I think more newer posters are contributing than you think.  I count myself, APny, Dave418, firedude21, and others as those that contribute.  Some are not comfortable sharing information, and others may not want to step on the more "experienced" members toes.  I try to answer when I have something to contribute.  I actually found this site AFTER my surgery, but I like to try to offer encouragement to those that are worried or scared prior to their surgery.  This is a wonderful community and support group.

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

I agree with you , My daughter found this sight for me when I had RCC in right kidney had SURGERY ,i don't post much because I do not know what to say just this . This sight is wonderful and enccorges me and there is a lot of smarter ones out there that can answer lots os questions I had surgery in April doing ok so far, Sitll have aches and pains but I try not to worry ,Thanks ea and   everyoe who posts on here for your imput ,questons answered and encourgement. 

                                                                                                      Ree from Md

 

           

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I think you pose some interesting questions, and they inevitabley correspond to complex, highly individualized answers, depending on different people's experiences. My opinion is that most people don't come here to help others. Sorry, but it's probably true. I just don't think everyone has that ability or comes here with the mindset of "helping others" and I think it can be difficult for some people to feel like they have the time, energy, capability, or knowledge to put forth for others. And I totally get it. 

I also think that it's the nature of social media in general, message board culture so to speak. It's that condition of anonymity that makes it easy for people to float in an out of partipation online, whether it be Twitter, Facebook Groups, etc. This is sort of unfortuante, but very much the nature of the beast in my opinion. 

 

Me, personally: I was in a dark place dealing with my husband's cancer.  Very, very dark. I came here and found help and it made me want to stay and help others. But my husband doesn't have cancer anymore. And I don't know if I could be here regularly if/when it ever comes back. So I guess others probably have experienced that as well, and dropped off to lurk, etc. Some may evern move on to Smart Patients only, for that matter. Who knows. All I know is that Ron's death for me, being here since February hit me hard and I've been here since February. It makes me think twice about forming connections here, for my own metal health. But I doubt at the end of the day it will change for me. Like John Wayne said "Courage is being scared to death, but saddling up anyways. " Just saddle up, keep living, and try to help others. 

 

telephantasm
Posts: 14
Joined: Nov 2014

I hear ya foxhd. I guess it's a comfortability thing for some. Me bein one of the newbies to this site. I am still continuing to learn in hopes of making some valid contributions to this site as I go through this process myself with my father's diagnosis. I can definitely offer a supportive ear to many. This is still relatively fresh for me. But this site we'll continue to offer me hope through all the posts I read as I further enhance my knowledge base with regards to kidney cancer. There is a lot of valuable information to be learned via these posts. I will share information as things come available to me. 

What is a good dietary regimen out there (has anyone vastly changed their diet?), any natural products out there that can aid in the fight

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

Hey Foxy,

Thank you for putting into words, what I have been thinking about the last couple of months. I joined October of last year, so was not fortunate to get to know Texas Wedge, but felt everyone's pain when we lost him. This year I have gotten to know many people here - a wonderful group. People that I think of every day and say a little prayer for every night. And I know that so many of the other members are doing the same. Family.  I sense a few dropouts and do feel some sadness about it, but understand that it gets hard to be on this site all the time. But everyone needs to know that this group needs some maintenance - TLC, if you will. I cannot tell you how hard Ron's passing has hit me. I have only known him for one year. But I could honestly feel his goodness ooze out through his words of support and humour. I had to stop posting things about his passing because I think I was starting to look a bit "stalker-ish"! I want to console everyone and share their pain, as I have so much pain that is difficult to share with people in my non-virtual world. He deserves proper tribute. We are family of a different kind. But it is a wonderful, warm family.

I worry about you, most of all in this loss, as I believe you and he (and a few others) were close to each other and had similar morals and big hearts. I am glad you voiced your opinion today. :)

Hugs

Jojo

 

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

 

“My opinion is that most people don't come here to help others. Sorry, but it's probably true.”

 

Sblairc, yes, I agree that you are probably right. I also came for answers and support but once I received it and recovered from my surgery I wanted to be able to do the same for others. And so I've stayed. Often I find that I can’t say much that's helpful because fortunately for me, mine was a stage 1 cancer and sadly, many who are seeking answers and support are at a much more serious stage. I’m not arrogant or foolish enough to think that can’t happen to me in a year or two or ten, but right now, I am not much help to those seeking advice on treatment options for mets, etc. Still, I try to contribute as much as possible when appropriate. And while I’ve not even been here a year, Ron’s death hit me very hard as well. He was amazing in his compassion, spirit, and sense of humor.

 

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

I've been here about a year, but in terms of treatments I am kind of a newbie.  Nephrectomy in Sept 2013, found lung mets in January and had IL-2 in March and July.  A couple of weeks ago with the third scan indicating progression I was put on Votrient.

I do tend to comment about things I've experienced--radical open nephrectomy and IL-2--but I am just getting started with targeted drug therapy.  Most of the time I am reading this forum on my phone so writing long replies is not easy.  

Ron's death really shook me--so much so that I couldn't bring myself to post anything meaningful.  He was a role model for many of us I suppose in how he dealt with cancer and hearing that he ultimately lost the battle scared the bejeebus out of me.

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

Fox,  Your point is valid. I have been less participatory than usual myself.  I could move on altogether, but for the fact that when I was given my second chance by my surgeon I wanted to be able to pay it forward in anyway I can which might include helping someone on this forum.  We all go through this in our own unique ways, but the experiences are similar.  Ron contributed a great deal here and his shoes will be hard to fill.  Some of the anguish felt by the folks here will take some time to heal. 

         Some of us stage 1 folks feel unequipped to add to some of the threads.  Providing some humour or positive stories would be step in the right direction.  I for one, will endeavor to be a bigger contributor going forward. 

Jack

 

 

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

I'm one to fade away occasionally, but that's due to being involved in so many medical issues, the least of which is my RCC.  I say I 'had" kidney cancer.  Once my incision healed, I filed that life event away.  Not that I don't deal with cancer on a daily basis.  I hope my postings help someone in some way.  I know I can add perspective of multi/comorbid diagnoses.  After all, once you've had 1 cancer, your chance of another is higher.  I can help our friends here should that ever happen. 

I don't like starting new topics much though.  Much more comfortable replying to existing ones.  Been that way since I joined almost 2 years ago.  I learned so much from everyone, and try to pop on when I can to keep updated, even if I don't have time to post.  I've been spending a lot of time on BCO.org learning about my new cancer and treatment options.

 

Anyway, the phenomena of the one post wonder happens everywhere.  What irks me is when they post a new thread then never return to update. Arg

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

are one thing. There is a name for visiting boards and not posting. Lurkers. Right?  That is thought of with a negative connoctation...(did I say that right?) It is almost like being a peeping tom. Or evesdropping.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

I kind of just decided to come here today...I had not been here in a long time.  For me, kidney cancer is becoming secondary to my life.  I plan to be here a long time, I am still young, and I have been really busy lately with work.  I have three companies trying to buy my services.

Clearly, the cancer is never far from me.  I am always feeling pain at the site of the nephrectomy, and neuropathic pain from the wedge resection, but I am lucky so far.  I have not required any systemic treatment.

Maybe I should hang around more, as I can help the newly diagnosed understand what it means.

When I was diagnosed Stage 1V (two years ago), I had one real goal:  to be around for my daughters Bat Mitzvah....that is in about 5 months.

And I am thinking more long  term.  

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

Some days nothing is posted. Other days much more. Just bringing up a bit of controversy such as I did, resulted in 10 comments in 2 hours. Some agree and some are offended. (just wait until we hit 20 posts). And nothing was a question or answer about cancer. I only initiated dialogue and I got responses 180 degrees apart. For those without much to say, a heart felt "Good Morning" can be appreciated. Not everyone can comment on things like having just finished Il-2. Can't be expected to. But a sincere "Good luck" or "We are pulling for you!" can go a long way. I know that for me it is difficult to remember what recovery from surgery was like. It seems like a long time ago. Plus letting things go and moving forward is part of my coping process. So I think answers to those questions are best answered by people who have more recently experienced it. ie newbies.

When there were questions Re: clinical trials came up, I had plenty to offer. Research went Nanos' or Texs' way. Tension relief went to Gary. ( who hasn't been here in a while because I'm sure he was beginning to not feel appreciated.) Then we have always had spouses here. They were always good for a hug for everyone despite not having kidney cancer themselves. They were here for us all. Not just their sig. other.

I have hit some pretty low lows and high highs. My emotions have had a pretty good run. From not a chance in hell to survive, to watching tumors disappear like melting snow. Then to qualify for Il-2 and surviving the most inhumane treatment that can be given to a person. I had support, best wishes and  many held my hand as I endured the psychosis, weight loss, and altered physiology. For those with stage one or two, thank your lucky stars. Because surviving as a stage four can be so hard that death could have been a welcome option. ..But not for me. Because I'm pretty tough and had a forum full of supporters who continually helped  carry my load...I gotta tell ya, I don't see much of that these days.

I have been told that that is  the nature of forums today. You search for information you want, then move on. Again the self centered culture of today. I just don't believe that is true. Not when nearly everyone who joins this site, does so out of desparation. Afraid of dieing. I don't believe that once support is given, it's "Hurray for me and screw you."

I am just trying to say that anyone who joins this site does so because they don't know where else to turn. It can't be asking too much to pay it back. Share your experience, knowledge, and insight. It will be much appreciated. I have seen love generated here that runs full circle. What goes around, comes around. I know that I believe in Karma.

angec's picture
angec
Posts: 923
Joined: Mar 2012

Foxy how are you doing these days? Last i remember you had pain, was it in the neck area somewhere, possibly from the IL2?  I hope you are doing better. You sound like you can use a hug, some beer and pizza, and perhaps a nice, long ride! Too cold for that now!  Love you Fox!

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Hi Fox,

So good to hear a real person voice their true feelings in this world of the politically correct!  I could sense your frustration.  I can only answer for myself.  I came to this sight a year after my husband passed away.  I was searching the web for ways to use all the information we had learned over the 8 years and 3 months that we walked this walk, in order to help someone else.  I have shared a little in the past year but my husband lost his battle.  That fact left me in a very precarious position.  Though i know somethings I do not want to bring anyone down.  I visit occasionally as a lurker mostly.  I have become attached to some of the people on this sight and am praying for all of them.  I am just not sure where I fit in.  I told you in past posts that I thought my husband would have liked you very much.  He was a very strong fighter.  He did all that he could have done to stay.  He had surgery and radiation and IL2 and stereotactic radiosurgery and a hip replacement so he could undergo more radiation.  He was on sutent and then participated in a clinical trial in India just to try to stay here longer.  Today marks 2 years when we went to his neurologist for a plan on how to tackle his latest brain mets.  It was a very difficult day.  I knew he didn't have much more time.  He was just 60 but on that day he looked much older than his real self.  He passed just one month later to the day. 

So this sight makes me relive maybe what he should have done or could have done that we didn't think of or know of or ask about.  You have all helped me remember that it didn't only happen to him or us but it is still happening every day and I wish I could find a way to make the reserachers feel the pain on this sight and work harder.  Cancer really does suck!  It makes me more frustrated because it seems that kidney cancer and the dollars spent on it now are where breast cancer and the dollars spent on it were 21 years ago when breast cancer stole my mother at just 63.

So you see, my stakes are high.  I lost the two people I was closest to, to cancer too soon.   All of you on this sight have inspired me but I am still searching for a place to fit in.  I keep hoping it will come to me somehow.  I wish I could help but I'm not sure that I can.  I have learned in my grief that many people cannot handle many of life's sorrows so they leave.  I have lost some very dear friends because they don't or can't GET it.  I think it is true that unfortunately many people aren't really interested or concerned with helping others they are searching for themselves and that is all that even occurred to them to do.  If I can help anyone send me an email and I'll try.  Thank You Fox for your strength and honesty.

Arleen

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thanks for caring and sharing Fox! When I joined early last year the site was always so active, questions, advice, detailed medical information, Gary's crazy jokes and banter, and that which Texas referred to as the not so relevant fluff. I loved the jokes and took comfort from the fluffy stuff, it took the pressure off the more serious problem for a short time.There was a marked change after Trevor died, it was a painful time, he was like the oracle and of course now sadly Ron, they have left a big gap. Their dedication to this site along with several others like you Fox created a unique place for information and much needed comfort and support.

I love the people on here and have made some good friends. All the time I am fighting this blight of a disease this will remain my go to place, and am happy to offer any support I can even if it is only fluff:)

 

Djinnie x

 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Just to say I appreciate everyone who posts and think of all of you often. I don't always know what to say to new people on the forum. We are in a really weird headspace at the moment. I paid so much attention to what was going on with Phreds cancer diagnosis I missed noticing our daughter starting to go downhill through it all. Keep an eye on your children everyone. Extended levels of stress are no good for anyone.

 So grateful for everyones honesty and for being there for us when it was needed at the beginning. It is a very scary time to be told you or someone you love has cancer. Love to you all and please keep posting. I will try to more as well

Hugs Melissa

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Thanks for the post, Fox. This is a good productive dialogue. This is a pretty active board on here, compared to some of the others. Go browse, you will see some are pretty quiet. I think we are luck to have each other, even if it is't as much as it could be. 

angec's picture
angec
Posts: 923
Joined: Mar 2012

I guess people have various reasons for being here or not being here. I, myself have been on smartpatients most of the time.  I come here once in a while to see how others are doing that did not join smart patients.  But for myself, i now have three family members  and several friends with cancer and it has become a little overwhelming for me.  I don't really have the time to be regular but try to pop in when i can and offer advice.  On a side note. My mom had a great last scan. NED.. was unreal. Still on Votrient which will be two years in December. She is on the 200 mg dose.  Ron will be missed. I had regular contact with him on SmartPatients.com.  Came as  a complete shock and no one knows what went wrong, except that maybe he had a blood clot, that is not confirmed.  You always bring up good points, Foxy. We need to be here for each more often.  I will work on that!

 

AprilandChuck's picture
AprilandChuck
Posts: 110
Joined: Feb 2013

I am guilty.. as the kids in our life started to grow and grow up( we have many.. our own, ones who were friends with out daughter who passed, and ones who passed through our lives when they needed help).. we would go long periods of time without hearing from them...when they would pop in or call... I was never angry.. I always told them "That life gets in the way of life" meaning sometimes we get so busy dealing with what comes up.. we for forget to check in.. and its ok... because life has a way of doing that.. its no excuse its just truth... Dealing with Chuck and my Mom... )first uncontrolled Diabieties then advanced small cell lung cancer with Mom) and continuing to deal with Chucks Cancer and various issues with other family members and our children.. time went by way to fast... and I should have checked in sooner... I can not promise I wont loose track of time again... but I can say I will try to do better!! Since Chuck first got sick this site and all who pariticipate here have been a huge comfort... and I am sorry I let you all down! Hugggssss

 

p.s. Chuck is 1 year and 4 month on the maintance phase of the Phase 1 Anti PD1 plus Ipi trial... his next scans are Nov 25th... at his last scan he had a Lymphnode that changed shape... prior to that he was stable disease and had at least 1 NED scan!! That gave me time to deal with whats going on with Mom...since she would not move to NC that involved a large amount of travel.. between here and Pa... taking care of her and being here for Chucks scans and infusions... then My Aunt who was helping got worse she has severe COPD with Heart issues... so we had to get her to a specialist.. and the cherry on top of our Sunday.. My Cousin who is 47 years old and was also helping me with Mom had a heart attack in her widow maker... she is stinted and recovering... but not out of the woods yet..  I thank God everyday that Chuck has the team at Levine looking out for him and all of us!! they have been a God send to us!!

mjl66
Posts: 8
Joined: Nov 2014

I'm new, and here for my husband who was recently diagnosed. Let me restate that, I am infact on this site for the both of us, we are both going through this together.  In the short amount of time that I have been here you have all helped me greatly.  I know that I am not alone, and that others understand the pain and frustration in dealing with this illness.

I really don't know what I have to offer at this point, but I am greatful for all of you, you are appreciated.

MJ

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

from moving forward and from biting the hand that feeds you. We all wish to return to our so called "normal" lives.  But it is nice to hear from you when you get the opportunity. So many have done well and have permantly moved on. Good for them. How nice to never worry about cancer again. Most of us unfortunately aren't so lucky. Sounds like you have your hands full. Yet you know that when you come back to see us, people express their concern.

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

In every thing you have said.  When I was first diagnosed with kidney cancer 2 years ago and I found this forum I was so happy that there was people here who had already had surgery and could tell all about it.  My fears was calmed here and I thank everyone from the bottom of my heart.  I post occasionally just updates on what is going on with me and my battles still, but as I reflect, that is very selfish of me and I apologize.  I think of you all everyday and your in my thoughts.  I will try to do better.  I owe this forum that much to repay and help the new ones who come on board.  Thanks for opening my eyes.  Hope you are doing better Fox.

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

 "There is a difference" was supposed to be a private message.

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

foxhd, you can edit your own posts.  There is an edit link, if click on it, you can delete the text.

a_oaklee
Posts: 436
Joined: Nov 2013

I appreciate the sentiment that you expressed Fox.  I don't think that visitors to this site should feel like they owe something, nor should they apologize for not participating more.  I've never judged the extent of a persons involvement or lack thereof.  I have been concerned for the health and welfare of some of the visitors here.  I've always recognized it to be the public forum that it is, with few rules.  I am sure that there are thousands of reasons why some people don't have lasting involvement.  It doesn't make them any less in my eyes.  I don't view them as a taker and not a giver.  Unless you ask the specific individual the reason they are distant, you just don't know.

i read a post here that greatly affected me.  The young man was advising people to not read anything posted by stage 3 or 4 patients.    That when he begins to read a post by an advanced cancer patient he stops.   He went on to say there should be a warning system so he could avoid THOSE PEOPLE.   Someone else said this is the fun site, and sick people should go to Smart Patients.   They were honestly sharing their feelings.  It doesn't mean it's easy to read.  I immediately joined smart patients.

and then of course there are all of the stage one patients that are traumatized and horrified of getting mets.  I get it. I understand it.  I appreciate the fear.  BUT......I feel even more hopeless and doomed....every bodies biggest fear is to be us.

Let us not forget all the people who cannot get through their depression.  Positivity is highly touted here.  Sometimes it feels like a requirement for The club.  I think people are trying to do the best they can at any given moment.  It saddens me when someone says they don't participate because they don't feel positive.  They actually apologize For being sad.

I also look at some of the younger people, raising children, missing work, etc, who has time to get online and chat.  Maybe some of these individuals are trying very hard to get that damn song out of their head.....

i am thankful to sites like this one and smart patients.  Please keep doing whatever you can do to take care of yourselves and your family first....then come visit here whenever you want to.  

 

 

Srashedb
Posts: 482
Joined: Dec 2013

my husband is stage 4, grade 2; a stage 2, grade 4 has a great chance of recurrence so am a bit troubled if some feels "safe" at being stage 1 or 2.

as for this being a "fun forum", again troubled and it is somewhat contradictory to being freaked out by stage 3 or 4.

in 1992, when i was diagnosed with breast cancer and the mother of 2 young sons, a breast cancer survivo/volunteer came to my hospital room and told me "this is not a death sentence" and told me she had been NED for 7 years, it meant more to me than any medical opinion or statistic of survival.

that has stayed with me and what I tell anyone diagnosed with breast cancer; the devastation before processing that the very word carcinoma brings can be understood only by those who have experienced it.

there is no obligation to give back but for me, I see it as something I want to do. I have learned so much about renal cancer from this forum and from smart patient.

Positivity? It is not mutually exclusive to have that along with reality; the gut fear of the newly diagnosed can be softened just a little by reading of others.

and, I enjoy the camaraderie here, the asking where someone is who has stopped posting.

Early on, Ron was one of the first to respond to me with both his experience and the banter we all know so well.

this is not a "club" requirement but if you have received it is natural to want to give back. And, if someone doesn't feel that, it's fine.

just my thoughts 

Sarah

I am alive
Posts: 316
Joined: Jul 2012

So well put, AOkaly. I agree with much of what you outlined. But I understand Fox's frustration - I rely on his and other's input. I look for it. I open up chats sometimes just because I see that he or others have commented. Still,  I think such generous participation is in your nature, or not.  I often feel I have nothing much to contribute. I think most of us do the best we can, given our own issues and time constraints. 

Karen0074
Posts: 64
Joined: Apr 2014

When members are first diagnosed the blind panic sends them to post almost daily at first as this forum in the most supportive and active on the Internet, IMO.

I got through those first weeks with yours Fox, Ron and icemantoo help. Thank you.

As time has gone on and I had op and diagnosed stage 1 grade 2 ccrcc life has got easier and less need for support, selfish I know. Also because I am British and this is an american site I feel a bit out of my depth with the different ways in which we are treated by drs.

I feel I can only be of assistance to newly diagnosed as I can relate to the terrible scary first few weeks after diagnosis. I am in awe of you oldies!

I lurk most of the time now and love to see all your comforting comments especially fox and icemantoo and of course the wonderful Ron, who I miss dearly.

thank goodness for all the posters who keep posting a long time after diagnosis, you keep this forum going. I promise to comment where I feel I can help.

 

much love to you all

 

Karen x

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

My feeling is that whether or not one participates is largely based on one's temperment and personality.

For example, I am an engineer by education.  I believe that "knowledge is power" and that you can't have too much of it.  For that reason I post far more on SmartPatients.

Nothing makes me happier than to dive into a detailed research or scientific paper.  But then I try to translate what it says into a language that any layman would find helpful.

But that's just me.  In the past, when I have tried to point out, for example, the advantage of paying attention to diet and nutrition (which, incidentally, can have far more benefits for Stage I or II patients - it's already too late for Stage IV patients like me) - I was occasionally met with resistance or even ridicule - as if I was "against" one having a nice beer and pizza to celebrate a happy occasion, etc..  This response did not bother me because I just go where the science leads.  I believe it is then up to each individual to make what they will of that knowledge.

I miss the back and forth that I enjoyed with Texas Wedge - as we occasionally saw eye to eye but just as often did not. I loved that because it made me think even deeper.  That's why I came to this (and other) sites.  However, I acknowledge that perhaps many others can feel uncomfortable when there is any "dissention" or lack of round-the-clock "positvitiy".  I do hope I am wrong about that.

I read each and every post here.  But I do not feel compelled to respond to any of them - unless I can make some sort of contribution that someone might find helpful.

Just my 2 cents.

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

When I first came here, I was scared to death.  I came here soon after diagnosis and several people brought me back from the cliff.  I then joined ACOR which has become SmartPatients.  Most people there are Stage IV.  We have felt the pain here of losing board members but it happens even more often there.  It scared me to death and I had to stay away from there.  But, then I became Stage IV.  After that happened, I first posted here and was flooded with people offering encouragement and I am forever grateful, but now I spend most of my time on SP because of the volumes of information about treatments and they also have emotional support there from people in my Stage IV shoes.

As has been said, I think everyone is in a different place emotionally and physically.  I have never been especially “active” here except when I was in a state of panic.  Even in the non-cancer world, I just don’t say much.  I’m a quiet person. If we were all in a support group and in a room together, I wouldn’t be saying much.  I enjoy being with everyone and listening.  It’s just my personality.  Then, there is the fact that most times, I don’t feel very positive when it comes to cancer.  I know that everyone is quick to poo poo statistics and I agree when it comes to things like 5 year survival rates, but some statistics are valid.  Around half of people who get kidney cancer become Stage IV and once you are Stage IV, despite all of the advances in therapies, there is no cure (other than sometimes IL2).  Do you really want me coming here and posting that?  I don’t want to say what I’m thinking if it will scare people.  I have trouble comforting people and saying it will all be okay when often it won’t.  I feel disingenuous when I do.  I still visit here because I do care about the people and pray for many of them.

 When I get to a different place in my head, I will participate.  My mood changes day to day.  In the meantime, I will still check in to keep up with everyone.

 Kathy

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey,

I think on the whole people want to keep it real, who wants to be deluded . I remember when you pointed out to Twinnie she shouldn't be tucking into chocalate cake, she didn't want to hear it but within a short time was asking for your dietary info. I thought I had a pretty good diet but made more changes after reading your studies. I know at Stage 4 you say it's too late, but it's never too late to eat right. I think the weath of information you bring to the site is amazing. I used to like reading the discussions between yourself and Tex. I for one like people to be outspoken and no sugar coating, if it's bad news then it is what is is!

Djinnie x

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Many thanks for those kind words of support, Djinnie.  Yes, of course I agree that it is never too late to eat right.  What I meant to emphasize was that many Stage I, II, and III patients get spooked by the thought that they may be at some ill-defined risk to graduate into stage IV.  But if they eat right (and make a few other lifestyle changes) they can definitely reduce that risk.  And even if you are stage IV you can still reduce the risk of your tumors progressing:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209346/pdf/dmj-38-330.pdf

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Also Nano just a quick after note. I read about how you were doing earlier in the year, I am so glad you are now doing so well now:)

Dj

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

Cancer or no cancer. Patient or caregiver. Every so often I stir up the bees nest. Just from this posting we have learned more about many of you than has been offered up in months or longer. That is the point. If people have time to visit here, then they have something to offer. Medical info, coping, healthy lifestyles, where and how to persue doctors or treatment plans. I could go on. And yes I agree that the internet allows anonymitity ?sp. The quiet ones still sit in the back of the room like in grammer school. People like me don't shut up even when asked to. Funny thing is that I am an introvert by nature. But by working in health care I have learned how to be outspoken and confident. I have been  a leader in the health care business. Yet I could go from friday after work until monday morning not speaking to a single individual. Quite the range of difference. You can be sure that in a couple months that I will bring up some other topic to get people involved. That is because this site is valuable to me. You see, I expect to be here until I join Tex,Ron, Blkjak, Cap'n Matt and others who have permanantly moved on. You see, if my cancer doesn't get me, the treatments, side effects and complications will. I will continue to defy the odds. But I don't belong here. I should be dead.  That is why I find this forum so important to me.

Karen0074
Posts: 64
Joined: Apr 2014
foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

..and they blocked it Karen. I will use my imagination....hmmm....I like it!

Karen0074
Posts: 64
Joined: Apr 2014

...I am British after all

it was an emoji face blowing you a kiss!!

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

what I was thinking! Thanks!

 

My parents always said that the British didn't have a sense of humor. I LOVE British humor. Mrs. Buckett. Benny Hill, Monty Python.

 Kisses back at you!

myoung790
Posts: 75
Joined: Sep 2014

Being new here, I would like to participate more.  I just feel that I don't really have much to offer.  I do try to offer encouragement when I can and as I learn more, I will do my best to continue to participate.

Scottie22's picture
Scottie22
Posts: 66
Joined: Apr 2013

Hi Fox,

I understand where you are coming from and the degree of frustration that you mention.  I read this site daily and like all others who have written was shocked and saddened by the news of Ron's passing.  Oftentimes I want to comment and reply to posts but tend to defer to others who have much more, in my opionion, to offer. As it happens I have my 6 month follow-up appointment tomorrow (18 months since nephrectomy) and am feeling pretty uptight.  I also have another major surgery coming up in December (not kidney related) which is also on my mind.  I am always with you all and thinking of you just not finding the right words I suppose.  I do remember the replies I got to my first post after diagnosis, Djinnie and Iceman and others were right in there with support and encouragement which was so valuable and precious.

Scottie

aamdsi
Posts: 284
Joined: Apr 2014

I took some tome "off" and felt bad not being on here.  I was busy for one (had Granddaughter to chase/snuggle for a weekend) and guess just tried to put it all out of my mind for awhile.

But...couldn't.  This site offers refuge, answers, hope, a smile and a tear and occasionally a good laugh.

So - for better or worse, I am back 8-)

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

See. Most everyone can particpate and share their thoughts. Once you sign on you are part of the family and can speak up. Reminds me of "Hair" Something like, "long ones, tall ones, short ones,round ones , green ones, red ones , and spaghetti....All different.

Sometimes I think people feel like they have to be invited. Everyone has something in common, with their own unique perspective. Damn cancer. It's also fun to interject some humor. Texas Wedge and Ron did more than anyone to teach, laugh, and live. Right up to their last days they remained active. How does it go? "Live, love, laugh." That is how they would want us to continue on.

So here's a bad one......What did one casket say to the other casket ?                                                         "Is that you coughin?

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

I browse the posts every day and they usually affect me in one of two ways...

A.  I get freaked out thinking about mets, reoccurences, etc.

B.  I feel better by reading about people like Fox, who threw RCC a solid beatdown. 

 

I try to only respond to posts where I have some personal experience, (33 years old, male, Stage 1, grade 2, 2.2cm, open partial neph). 

With that being said, I do feel an obligation to share my story with people who are in a similar situation.  The people on this site really helped to calm me down when I first was diagnosed, so I try to pay it forward.

 

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Fox,

I understand your frustration and concern.

I have thought about it before. I always think before I post. Texas used to jump on me (and I wish he was around to do it again) about posting when I "didn't know what I was talking about". One of my criteria is that I should know what I'm talking about. Sometimes I just don't feel like my knowledge is up-to-snuff and I definitely wouldn't want to lead anyone astray. Heck, sometimes I'm wrong even when I think I do know what I'm talking about!

Personally, I find lots of "me too" posts to be a little frustrating and I find myself being hesitant to jump on when what I'm saying doesn't add any new information. Can you imagine if we all posted and each post was the same? That'd be frustrating as well. Although I do see your point that numbers can be a good thing in certain situations (like knowing others are there for us).

I find that I don't have the time to keep up even with what's already being posted, so I get behind and can't catch up. Time in general is a problem for me, so I have to pick and choose.

Even when I see someone that needs support, I feel inadequate about what to say that would be supportive/helpful. I err on the side of silence. I say a little prayer for them and decide not to put my sentiment in writing, leaving it to those that seem to do better at providing kind words of support. I find words just fail me much of the time.

Sometimes because I don't keep up with everything, I don't feel that I know the person or situation enough to chime in (I guess I might even feel like an outside to what I've observed to a little group within our group, which may not even be true, but it's the way I feel, so I stay silent).

Part of the reason I can't keep up, is because I find that when I'm here reading all the time and keeping up with my posts, my anxiety about my cancer returning goes through the roof. I have to go away for a few days. I'm sorry, but it's something I have to do to take care of myself. I wish I could be supportive without that. I'll consider it.

Thanks for your concern for our community here. I appreciate your involvement.

Best wishes,

Todd

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

a long time Todd. I've always felt you have had plenty to add to conversations or conversations you started up. I know what you mean about Tex keeping a tight ship about being accurate in statements. I miss him for that too. I understand and follow the concepts of treating this disease. But like you, I haven't kept up with details like Nano does. For me that would be like being at work. I have enough to keep track of my own care. I want to act retired with the time I have left. I just kind of felt that this site needed a jump start.

angec's picture
angec
Posts: 923
Joined: Mar 2012

1999, that was a good year, and also then number of posts Fox made!  Keep it going, Fox!  Great to see you and Nano offer up very beneficial information to the rest of us!  Nano, I appreciate all of the posts and articles on smart patients. Thanks for keeping that up, many are helped by your research and your encouragement. The same for you, Fox! 

Rea's picture
Rea
Posts: 28
Joined: Feb 2013

I totally agree with you Fox and I am guilty of not contributing much to this forum. I appreciate you, Ron, djinnie and Neil Nano to name a few who has taken the time to share your thoughts and knowledge about this dreaded disease. I wish I can contribute more and this will be my goal now to learn more about this illness and share my thoughts more often than I should, to post not only when I have concern but also to offer a listening ear and words of encouragement to everyone on his forum. I am so blessed to be able to work 10 hours a day and take care of a 4 year month old baby girl. I want to continue like this and find time to be visible in CSN and SP. thanks for opening my eyes on this. 

I hope you're dong alright and I pray that we all get well and win this battle. I was so sad seeing the bad news about Ron in SP. My posts have not gotten much comments but Ron has always shared What he can, it's just sad. 

Thnaks everyone ffr or being there for me when no one seems to understand what I'm going through. 

 

PS

just to update, I'm carrying on 800mg of votrient now for a week (I was on 400mg for 14 days) not much SE which made me worry if I am taking the meds correctly. Will do liver function blood works next week as my enzyme went high while on 400mg but onco still decided to continue for 2 weeks. If all same, I need to switch to Sutent. 

 

God old bless us all and I pray that we alone around for a much longer time. 

 

Rea

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

I hear so many people here stating that they have nothing to offer. I would like to argue that! Everyone has their strengths and gifts. Some are the educators, some are the compassionate, some are the comedians, some are the reliables. But we are all here for the same reason, aren't we. We all have a common denominator. And that is what binds us. I think Foxy started this topic to wake everyone up, remind them that they are all valued members - and that he just plain misses seeing some of his friends here.

Hugs

Jojo

 

 

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