Why I stopped posting

[BrownBagger]

allright Horizon, nobody appointed you moderator either! So how long have you been NED? How often do you check the boards and how often do you post? What sort of advice do you provide to people? Basically, how much time do you put into this board and what do you get out of it? Do you have an end date as to when you want to stop posting on cancer boards, and stop having cancer be a part of your life? I'm not being a smart*ss - I'm really curious as to why NED folks stick around.

kathybrj: true re: bonds. We do make friends/bonds on the boards; that I understand. That's probably a factor as to why some people stay.

brownbagger: yeah but it might be unhealthy for some people to linger on here, and if nobody ever says anything, many of us are creatures of habit and would stay, even if it weren't in our best interests... These boards are a community, but also can become like an addiction. We patients tell our life stories here sometimes, and the sagas of our struggles are almost like a reality show.

- Karin

Well, I am a moderator and my advice to you, Karin (since you don't mind dishing it out to everyone else) is to tone down the aggressive interrogation and opinion pushing, or you're going to find yourself alienated and unwelcome around here.

A lot of us have been here a long time and gained a great deal of help, support and camaraderie in the process of participating on this board. Nobody likes to be told they're an addict or a fool by anyone--much less by someone who just showed up.

You know?

[Annemiek]

Pfft, emotions seem te be running high these days. As a new joiner I can see Karin's point very clearly, I look forward to ending the treatment and picking up my nw normal, which might or might not include posting here, probably depending on the day. I long to get back to my life as it was and I'm so sad that that will never happen, it will all be different and having to deal with that brings up strong emotions, like Karen's , who wants her life back at some point and like Jayneys, who deals with it in her own way by putting herself "in service" through moderating this board and helping óut others. It's all good stuff.

Don't lock this thread just because there are difference of opinion. This is a discussion! Different opinions are entitled. As much as I understand Karins words, I understand that some people find it harsh, but as I said, it's the emotion on this board and the difference in dealing with this stupid cancer that connects everyone and makes this board so very valuable!

That's my two cents.
Annemiek

[aja1121]

Annemiek, I agree. I can see both sides on this one, and it does seem like emotions are running VERY high around here these days.

[jalusa]

I really wish there were more long term NED stage IV folks on this board. They should post daily.

[Regan]

Jayne
I am so very moved by your post.....
And...yes dear Kenny... They are opinions and I'm still sorry you were hurt because of the lock (I don't understand it either)

Jaynee. I have marked yor post because it is yet another one that I will re-read at some needful time in my hubby's journey...and then the rest of my life ...as it looks like my precious hubby will have to leave sooner than we planned 40 years ago...

So hope you dry your eyes.... Because yet again, a topic has given to me and I am sure many others

[BrownBagger]

I can see both sides, too, and I applaud those who get cured or otherwise unburdened by this disease, and decide to move on and get on with their new lives. That's their choice--a rational one--I certainly get that.

What I don't get is rude behavior--implying (or saying) that those who stick around are somehow stupid or in danger of losing their free will. Clearly, Karin believes--and is happy to point out--that she's right and those who disagree with her are wrong. That's rude, inconsiderate and insensitive behavior, in my book. This site is for everyone who knows how to behave in public. For those who can't or won't, maybe it's time to find another venue to prosthelytize in.

[mackswife]

I was just thinking about Skifletch. I miss his informative and encouraging posts, and would love to read an update from him again. On the other hand, I celebrate the fact that he has "moved on" with his life, and have total respect for his decision to "turn his face to the sun." Choosing to stay active on the board, or choosing to move on are both valid choices. Each choice has the potential to impact our lives in a positive way.

[annalexandria]

I can see both sides, too, and I applaud those who get cured or otherwise unburdened by this disease, and decide to move on and get on with their new lives. That's their choice--a rational one--I certainly get that.

What I don't get is rude behavior--implying (or saying) that those who stick around are somehow stupid or in danger of losing their free will. Clearly, Karin believes--and is happy to point out--that she's right and those who disagree with her are wrong. That's rude, inconsiderate and insensitive behavior, in my book. This site is for everyone who knows how to behave in public. For those who can't or won't, maybe it's time to find another venue to prosthelytize in.

Eric, I think cutting Karin some slack might be appropriate, given where she's at in her treatment. Undergoing a very challenging trial in a desperate shot for survival makes her a hero in my book, and maybe we can take that into consideration.

I've been NED for years now, and I am totally ok with Karin said. Does she sound angry? Yes, she does, but I think she may have that right at this moment in time. And it's a hell of a lot easier for ME to exercise that compassion, given that I survived stage 4 cancer and don't look to be dying anytime soon. How much easier to do so should it be for some here who have to deal with a few bathroom problems as they go on their merry way?

Maybe a little more compassion from all of us, and a little less indignant pearl-clutching, might make this board a better place.

Karin, I get where you're coming from. You are so brave, and I support you.

[Bev G]

Hi Karin,

Have you thought about how the board might be very different if there were only new folks here? In my early years with this diagnosis my experience here would have been severely diminished if there were not the experiences of "old-timers" for the benefit of all others, butt especially the newly diagnosed. I assume you were referring to me when you wrote about someone 5 years NED who still posts nearly everyday, and implicit in your comment is that I should move on and get a life. well, yep. I've got a life and thanks to treatment it pretty much sucks. This board was a lifesaver for me when I was sick, and I think my ongoing presence has been helpful to at least a few people. i'm not going to further dignify you post with additional comments except to say if you are annoyed or offended by posts from NED people, block me, block them...it's easy. Go to your user control panel and you'll see how easy it is. I'm about to do that right now with you.

The cancer kidnapping can be unbearably hard. Most of us know that. I am really sorry for what you are going through...what everyone is going through. I think a lot of times, however, help and support can come from many different corners.

I hope you get to a long-term NED status. You will understand that NED or not, cancer never really goes away.

WIshing you well.

Bev

[JudeD59]

I am noting the irony of this thread being started by someone who stopped posting because he was afraid that sharing his true feelings might be controversial and result in angry posts. He was encouraged to share those feelings, whatever they might be, by a number of members, but when Karin did that, in the same thread, she received the angry posts the OP worried about.

I get why Karin's post was shocking and offended some people. My mouth dropped open when I first read it, too. But then I thought about how frustrating it would be to want desperately to be able to move on from the daily world of having cancer and not be able to, yet watch others who had the opportunity to move on not take that opportunity. And I feel for Karin. Granted, her words were blunt and she could have phrased them more gently, but she was expressing her frustration and true feelings and I hope that is what this board is all about. If we can't let out our fears, frustrations, and true feelings on here, as ugly as they are, where can we?

I personally am very grateful that people stick around to share their experiences, both survivors and caregivers, because their support and advice is priceless. But I think allowing members to see that this is a safe place to vent when you are in your darkest place is also priceless.

Just my 2 cents.

Judy

[KWT]

Regan, I'm over it for the most part. I Totally see Karen's point and she's just not pussyfooting around. Do you guys realize how hard it is for stage four people to hear some of the stuff the lower stage people complain about? Their farts smell worse now is one I remember. And I hate to see anyone run off here. I'm not trying to pick a fight with Jaynee but the last time she got butthurt over a post that person left and I feel he would have been a great addition. It was the other Justin case. Jaynee posted a completely off topic rant about hurting herself on a friends trailer and when Justin questioned something he was attacked and left. I wish he would have showed a little more grit but he said he just didn't want to be bothered by it.

And I'm sorry but a stage four guy who went through the wringer big time and came out NED to be run off by a few was a mistake.

[weisssoccermom]

Karin,
I may have 'calmed' down quite a bit but as one of those long term NED survivors, I am still quite offended by your post. As others have said, you are entitled to your opinion but I don't think it wise to call someone an 'addict' (I've had personal family experience with Rx addiction and trust me....this is NOT an addiction) because....first of all, it isn't correct and secondly it is generally thought of by most as something derogatory.

IMO, you sound angry and bitter....and I don't fault you for that. I can't begin to understand what you must be feeling or what you are going through so yeah, I 'get it' when someone faced with a future that is so uncertain can be angry and/or bitter. Just as I can't understand your position, you can't begin to understand what I am going through either. Cancer takes so much control away from us....it consumes our lives during treatment and changes the way we think, how we act and, in some sense, who we are.

While you are dealing with the very real ramifications of treatment side effects, don't minimize what survivors have to deal with as well. It is frustrating to think that you 'survived' everything...the radiation, the chemo, the anxiety, the sleepless nights, etc. only to be faced with a new set of 'survivor' issues. You believe that you want to 'exit' the cancer life and go on to life a new 'normal' life but it isn't that simple. I still have chemo brain and will forever....nothing will take that away from me. It is just a part of the equation....a part of my new 'normal' that I have to live with. I spent two years going from doctor to doctor trying to figure out what was wrong with my face...why it was going numb, and why I had excruciating pain in my jaw and side of my face. No, not TMJ, not trigeminal neuralgia....nope, mine was caused by damage to nerves/muscles caused by my port. Of all things, the friggin port that I only used for ONE stinkin' week....the thing that, no matter how insignificant, has caused me this type of pain that will NEVER go away...yeah, it still pisses me off but it is a part of my new 'normal'. Are you aware, Karin, that the long term side effects (that don't go away) of 5FU include things like peripheral neuropathy (have that....in fairness also have it from prior feet surgeries as well...double whammy), hypertension (don't have that one), fatigue and cognitive issues such as chemo brain (have that to some extent. Long term side effects of pelvic radiation include the very real, higher than normal risk of having to have a hip replacement and problems with sciatic nerves (got that one).

Don't get me wrong...I am 100% thankful to be alive and have control over my life again....to the best extent that I can have it. Are you aware, Karin, of what it is like for many, if not most rectal cancer patients to live long after diagnosis? There are bowel issues that many face...sometimes so severe as to limit what they can and can't do in their everyday lives. That was my main reason for pursuing a different surgical course.

As someone mentioned, bonds are important and I come here on a daily basis out of respect, love and and admiration for members like Terry, Belle, Bradyr, Justsing, Starbuck, Ashlee, Jessica, Tim, Kathryn and PammySue....all who have lost their lives to this disease. I also come, for those same reasons for members like cptmac, Fletch, Surroundedbylove, Trish, Magnolia, anita and our founder, Molly, who fought hard, beat this disease and have 'moved on' and finally, I still come here for present members who, while I may not understand what they are going through and sometimes I may not agree with them, I am still impressed by their courage and their tenacity to continue to fight....members like our other two mods...Crguy and brownbagger, Carolyn, Kenny, Bev, justin case, Delinda and last, but not least, for someone like Frenchie. Finally, I realize that someday, I also might be a caregiver for a loved one with cancer and wow, what I could learn from members like WifeofMike, mummabear, canadiandaughter, Sharon Brent or chixter would be invaluable.

This forum is NOT just for those living with the disease or for a caregiver of someone with this disease. It is for EVERYONE who wants support, who needs support and who feels that they can GIVE support to those going through those treatments. Cancer is an insidious disease....it robs us of our dignity, it takes away our control and it can make us feel angry, scared and so unsure of ourselves that we oftentimes cannot function....particularly when our future is in doubt. Don't minimize, Karin, what perspective SURVIVORS can contribute to easing someone's anxiety, to be that 'calming' voice when everything is so mixed up and seemingly out of control. Don't underestimate people and their intentions Karin. People may not always agree with me (fine) but I do try to practice the last line of my signature....PERFORM RANDOM ACTS OF KINDNESS"...because I really believe that if we can offer the next person something in life....even if that something is nothing more than a 'I understand' or "hey, I'm here for you'....the world would be a whole lot better place. I only wish that when I was diagnosed, I could have had a place like this where someone who had been through the treatments before me...could have been there for me....to help me understand the terminology, to prepare me for the side effects and to just be that someone that I knew 'got it'.

My very sincere wish for you is that you can find some peace as you move forward in your treatments and while I don't agree with your assessment of some of us (myself included) I will try to be more compassionate because you are dealing with some might hefty stuff right now....stuff that I can't possible begin to comprehend. As much as you don't want to hear this though, IMO, cancer doesn't give anyone a 'pass' for bad/rude behavior....and, although you are 100% entitled to them, I (potentially because I am one of those you are calling out) found your comments, to be rude and insensitive.

[kathybrj]

I can only say that I am grateful everyday that my DH is in an "ok" place- at the moment. I know he has a long way to go with lots of scans, anxiety from those scans and fear of the unknown. I also know he could, at any moment, become someone that may not have many options left if he has a recurrence. I have no clue how he or I would react but I figure it would not be pretty.

I am thankful for all of the opinions expressed here. I am grateful for how those opinions are expressed as well. It reminds me of how very hard people are fighting or even trying to cope and it's good to see it all- it helps to keep my thoughts grounded.

[radnyc]

I must say that I mostly agree with Karin on this. But, perhaps I would have been a bit less confrontational.

[BrownBagger]

I don't want to belabor the point or further escalate the rift that appears to be forming in this thread. I just want to point out that, as a moderator, part of my job is to see that the rules are respected for the good of the board.

Here's part of what Karin said:

I've seen people who've been NED for five years post once a day on these boards. Another woman was stage II and NED for ten years and posted a lot. Get a life! Seriously. Why do they not want to join the "land of the living" as I call it? And they aren't particularly helpful on the boards because their cancer experience is outdated. They haven't taken the new chemos, they aren't up-to-date on the new ablation techniques. Ditto with the caregivers.
Karin

Here's a request contained in our Code of Conduct:

▪ Please be considerate and respectful of your fellow posters.

In my view, the part of the message quoted above is not being respectful of fellow members. I imagine that the two members mentioned in the first sentence know who they are (and the rest of us could probably figure it out if we wanted to). They are no doubt aware that they are being singled out for ridicule. Telling someone to "get a life" is not being respectful, in my view. Seriously.

Note that the line I quoted from the Code of Conduct is a request, and not a hard and fast rule. It's open to interpretation. Part of my job is to make that interpretation. I asked Karin to tone it down, and she hasn't responded yet. I'm curious to see how she will respond, if she does.

I have great sympathy for Stage 4 patients who have a poor prognosis and are facing almost certain, untimely death. And that includes me. I've never been NED for more than one scan, I have lymph node involvement and I know that I'm probably looking at a horrible death at some point in the near future. Still, I manage to remain civil and respectful. That's all I'm asking right now.