Why I stopped posting

[CRguy]

While I hesitate to post into this topic I probably should not, hesitate that is .... just that I will do so now, after other forum issues have quieted.

Reading Scott's original post, and not so much the aftermath, I believe I may recall the specific issues he recalled on the forum and .....
I absolutely relate to his personal issues which he is/has/continues to address for himself.

I could well have been on either side of the flame war in the past, in fact usually was involved in some capacity. As just a regular human being ... I first "see" the discussions thru my own eyes, filter and process ..... then act or step back. As a Mod ... the issue I think he may be talking about involved a poster who had basically caused some "issues" behind the scenes for months while we were dealing with even larger issues ON forum. When I posted into that topic it was as a pissed off Mod who had dealt with this individual for a while and cleaning up the debris. In addition I did not really resonate with the offhanded drive-by, throw it away post content ... when the folks I care about here were having serious issues and some had recently passed away.

The reason I draw a distinction to my on forum responses and behind the scenes duties as a Mod is because it is still essentially me.. the same person ... BUTT in wearing different hats, sometimes we gots to do what we gots to do.... There are times when I probably go overboard with folks as a poster here and I guarantee there are times when I back off and do not kick the ass of those who seriously need it ! Just so you know that also applies to anyone behind the scenes on this forum. I am who I am, and just remain true to myself... all any one of us can do. SO just because all the gory details do not show up in each and every topic which lights up here like a PET scan at Christmas !!!! ....does NOT mean that there is not often a huge amount of shit which has been / is being dealt with behind the scenes. WORD !

WHICH ... brings me finally to my reply to Scott's original post.

You are not the same person through all this, none of us are.
We have good days, bad days, you and your SEAL buddy are experiencing your own kind of PTSD.
I have never been in military combat, but have stood in front of psychos with weapons, and "trained" to eliminate the threat so that I prevailed.
Doesn't mean it doesn't change you.... just means you get to walk away that day.

I do not think any normal human could go through that, and what we endure on this Journey, and still be the same person without reassessing who we are, what happened and how it changed us.... and most importantly where do we go from here ?????

I think we'd be lying to ourselves if we did... or even could.
I look into the mirror every morning when I wake up, shave etc. and remember my father's words, which he may have paraphrased from the Bard ?

" The ONLY person you need to answer to today, is the one looking back at you right now. "

If that is not the first priority to me for that day, then what the hell good am I to anyone else with anything else I try to do ?
Folks always need to know the difference between shit and shinola.
WORD !

thanks for letting me share my thoughts in this topic and hope you keep up a presence here Scott
on the Journey with you
CRguy

[WifeOfMike]

For MOST of this thread, the conversations & inner reflections that people have posted here have been very thoughtful & enlightening. I have gained new respect and incite into all phases of those lives touched by the Cancer experience.

We have heard from Ned's (recent & longer term), all 4 stages, present & past caregivers, moderators, newbies & old timers here on CT. I have found myself most often nodding my head in agreement. I have heard very thoughtful replies (for the most part) as to what people WANT to get from CT.... a whole fistful of different & similar GOOD things. It is NICE to have all sorts of people,' with so many different perspectives, and a means for all of us to get what we need HERE.

I chose to skip over the negative rants about or from a particular person. I do not have time in my life to try & persuade people in this frame of mind to change. My personal experience has shown that this is a waste of both my time & my energy. THEY, rarely change. I will NOT let them change ME. I do not have to read it, hear it or have it rammed down my throat, or let it get my goat.

CRGuy's story regarding (perhaps) the person in Scott's original comment & the WHY he was flamed, is a perfect example of not jumping to conclusions & either condemning or coming too fast to someone's aid. It shows that unless you have the FULL story- you can only ASSUME you know what the right response should be.

Sometimes the TRUTH is in front of AND behind the curtain, or perhaps sometimes the story is sprawled into multiple threads, some conversations changed or erased, some identities changed to hide from their behavior, partial conversations or pictures posted from other threads out of context are shown. .....
WE are not necessarily seeing the whole picture. The TRUTH is not always all right before us tied up in a neat package.

IMO:
SOMETIMES, our original thoughts/ feeling about anything we SEE HERE...... is not always correct/ had we seen/ heard everything/ all sides of the story.
Trust me when I say.....sometimes those we ASSUME are Bad or Guilty of wrong doing...... The "flamed" are sometimes just a scapegoat/ diversion from the TRUTH
BUTT in this case.... after hearing CRGuy's explanation of THIS particular person- my original assumption was WRONG, and I stand corrected.
I am NOT sorry the guy was "flamed". It sounds like he got what was deserved.

You, on the other hand Scott have a definite right to how you are feeling, and should NOT be flamed. I hope you stay, I hope you are not discouraged having started this thread and watched the turmoil in the middle blow up..... and you leave here totally discouraged. I can wholeheartedly say, this place has many of my close friends roaming these threads.

Thank YOU CRGuy, for showing once again another way to look at things.
Have a Wonderful Evening, or as YOU would put it......... WORD!
Vicki

[wwroam]

At the moment I really don't have the time to engage but I feel I should put my 2 cents worth in.
I am a long term member and personally am travelling along quite well. Over the years I have learnt a lot, mostly so that I could have a plan B and C in place if needed.
In March my SO was diagnosed Stage IV with mets to liver, breastbone and ovaries. At the time she felt that she was about to die. I searched out an old threat of Stage IV survivors. While she accepts that the end will come, it is not about to happen just yet. That thread gave some hope.
Today she starts her 6th cycle of Folfox6 + Avastin. All the knowledge that I have acquired over the years has made the last 5 cycles fairly comfortable.
There is a place here for all.
Wayne

[stu]

Hi.

I think it is great that you guys can put down what you actually feel. Your freedom of speech always takes me by storm. I prefer straight talking but can not abide rudeness. I have no need to dominate any forum but have found this place a connection point in finding info for my mum and have been popping by for the last five years. When people complained about carer participation I decided to honour that and switched to pm because I still think some people might find it interesting as we have a different treatment approach and my mum is a stage 4 patient who has had very little chemo and six years later has a great quality of life and has been treatment free for four years. People might be interested to know that or not. Either is fine.


However, I have noticed after a long period of observation that certain behaviours exist on forums. Some have difficulty navigating others , perhaps not used to it in real life others get really bad scanxiety and they become more noticeably agitated with others contributions just before the period leading up to their scans . But I have always found Karin to be a lovely balanced contributor and when I read this I could associate as I have asked myself a few honest questions , gosh I am just my mum's daughter now not even a carer. I also felt really worried for you Karin because without a shadow of a doubt your doing the hard work and to me I just worried that this difficulty with others posting was more symbolic of just how hard continuous treatment surely must be.
Anyway I hope you are ok. You guys have a freedom lots of us don't and you have the option to use it wisely and keep the legislators well away from it. And just for the record I think it is great that people who become ned stay and show that some people do get to move through this,some even in a stage 4 setting.
Wwroam you remain such a voice of reason.
Regards
Stu

[Kathleen808]

scottyg,

It is good to see you here. You are always welcome and we care about how you are doing now and in the future.

Karin,
Your words:
"Caregivers with dead husbands or wives - move on too. Focus your energies on something other than cancer as it no longer rules you." Let's read that one more time, "cancer no longer rules you." You, my dear, have no idea.

Kathleen

[michelle c]

WOW! I have to say that I couldn't believe my eyes when I read what Karin wrote - how rude, inconsiderate and mean, yes mean. You offended me and others but I guess that was your intention. Jaynee, for one, shares so much information, she is knowledgeable and helps so many people, same with Bev. If you don't like it here then find another site but no need to offend others with your harsh comments. I came here to find support, advice, hope and personal experience - now I try and help others who are recently diagnosed.

[zx10guy]

Scott (scottyg),

I totally understand where you're coming from and am going through my own challenges. As far as I know, I'm NED from my diagnosis of Stage 3b colon cancer back in Dec. 2012. By all accounts, I should be very happy with where I am now. I was not impacted financially with all the medical bills. My employer was very understanding as well as my coworkers. Things were worked out to provide coverage while I was getting infused and recovering from the side effects. I wasn't forced to take disability. I also got married and had a daughter since finishing treatment. By all accounts I have lots to be grateful for. But I still haven't been able to get over the emptiness I now struggle with. We all know no one understands unless they've been through what we've been through. I still remember the feeling I had confronting my mortality when I was laying flat being scanned by a CT machine the next day after the colonoscopy I had found the tumor. The shock of being told I most likely have cancer and then to realize the CT scan was to see how bad things were. I was in a state of shock as I was shaking uncontrollably on the flat platform for the CT scanner. The nurse who was with me helped calm me down enough to stop the shakes. It was hard for me to process everything as I have never been very ill. I've never been in the hospital for anything major. And I've helped people in the past as an EMT.

I've tried couples counseling with my wife. I've tried seeing a therapist who is trained in EMDR as I've had other traumatic situations in my past which I've never had closure on. Both the counselor and my therapist agree I was suffering from PTSD. I even met with a psychiatrist and went under anti-depressant medication and a sleeping aid as I was only getting about 3 hours of sleep for almost a year. I don't feel any of this has had any long term effect on making things better for me.

As far as the controversial post.......

I find it out of line but can understand some of the frustrations the poster is conveying. Regardless, the poster did cross the line where she shouldn't have even factoring in the challenges she is going through. It was good to see the moderators voice their opinion on this. And I feel something like this should be done when there is friction or closed threads on a more consistent basis. But this poster in question didn't post the most egregious post I've ever come across. I'm also on another Colon Cancer support forum. This care taker of her husband with Stage 4 Colon Cancer took it upon herself to bash another care taker's fear and worry about her husband's Stage 4 condition in a thread she posted looking for support. This selfish individual tried to make things about how bad she had it and how she didn't want to read the bad energy created by non-positive threads. So she was telling everyone what she felt was appropriate to post in that forum. The mods didn't reprimand her but took a very neutral stance. I was appalled with the lack of any disciplining this person should have received. Well this selfish individual blew her top when no one was jumping on her bandwagon point of view. She spent who knows how much time going through all of her past posts and edited all the text she had out of them which was about a hundred to two hundred. Then proclaimed to everyone she was done and won't return. Some individuals asked her to come back. I say good riddance. She did eventually return but never apologized to that care taker she attacked.

[JudeD59]

Some people just don't give good message board.

To me, a message board is like the playground at recess. I've been a member of several boards and even a moderator on a pretty active board. There are always the "cool kids" who are tight and have inside jokes and respond to each other's posts because they have been around awhile and have built strong bonds. Then there are a few who are trying desperately to fit in with the cool kids and get frustrated when they don't. There are those who have very strong opinions on a lot of subjects and like to share those strong opinions. There is always a large group who hang in the shadows by the school wall because they don't want to get hit by a dodge ball thrown their way, so they lurk. Then there are those who, like playing jumprope, run in, leave a post, and jump back out into lurk-land. There are some who hang around, join in, and eventually become part of the inside jokes and "cool kid" group. There will be some tantrums and disagreements. And there are always some, like the person in the last post, who get angry and take their ball and go home. (Definitely not talking about the OP here, just the person described in zx10guy's post).

You can't expect everyone on a message board to agree with you. You can't expect to fit in to every message board. And you can't expect to like everyone on a message board. It's too much like the playground with too many different personalities. What offends one person doesn't offend another. What one person finds hilarious is confusing or insulting to another. And what one person sees as being blunt and honest comes off as harsh and mean to someone else. It is what it is.

Then there are the moderators, or as I like to call them, recess monitors, who try to make sure everyone is respectful and following the rules of good message board. It's a hard job, takes a lot of time, can earn you a few kicks in the shins, and is generally thankless.

This is a good message board. I've been on some that were nightmares. People here are welcoming and supportive. The moderators don't jump in and over-moderate. Very few threads slip off the front page without some sort of reply. There is tons of good advice and personal stories to help members. There are skirmishes, but overall, everyone treats each other with respect and support.

Thanks for letting me spend my recess here.

Judy

[BrownBagger]

^^^^
Nicely presented, Judy. Having belonged to and moderated a few boards myself over the years, I think your playground analogy and observations are spot-on.

[bitchslapped]

To me, a message board is like the playground at recess. I've been a member of several boards and even a moderator on a pretty active board.

A bunch of school yard brats, we are, yup, yup. I agree w/BrownBagger. Well thought-out analogy, Judy. Sounds like you were a former moderator. We like the ones we have who so generously donate their time & energy for so long...glad they stick around. Thankless job no doubt.

This is a good message board. I've been on some that were nightmares. People here are welcoming and supportive. The moderators don't jump in and over-moderate. Very few threads slip off the front page without some sort of reply. There is tons of good advice and personal stories to help members. There are skirmishes, but overall, everyone treats each other with respect and support.

Agree. This was my first skirmish to witness; didn't enjoy it. Though this forum is a small part of the overall website, its impact as a resource to the public including bringing public awareness to the site itself, should not be minimized in relation to the overall mission statement of The Board & the why to's/where for's of its humble beginnings . So having said all that, I hope there are forward-looking thought processes in the works through which to further aid our moderators to support/manage the integrity of the forum. Always room for improvement, always, including us. Spent many years in a company where president after president was replaced until those in the "glass palace" had an epiphany that the answers to positive change toward improved success lie within those carrying out the day to day "hands on" duties in the trenches so to speak.

Points to ponder...

BS

[canadiandaughter]

Perfect analogy! Being I work in a school I can 100% agree with everything Judy said! Love it!!

[Lee]

Jude D59<

Yes that was a good analogy. Thank you,

Lee

[Patience]

General thoughts about forums:

There are the school-yard-type-bullies on most forums, some more than others. In a different forum (not here!), I had an early experience with a long-time-poster to that site. I think she just felt overpowered by her illness, and decided that maybe she could be top-dog for awhile by berating others online. Sort of like the wife who has an a$$hole husband who verbally abuses her, and in response, she passes on the nastiness towards her children by calling them names and yellling (so she can feel superior for awhile).

It takes all kinds. Don't let the a$$holes chase you away. Why they are mean is not to be figured out, what is to be figured out is how to block them so you don't have to read their mess.

[JudeD59]

Thanks Eric, BS, Canadiandaughter, and Lee.

Judy

[KWT]