Why I stopped posting

[exaussie]

I still come here because of the people first and foremost. As a caregiver to a son who "moved on" in a way I never wanted, I just like to encourage those new to the battle or old to the battle and those who get to survive the battle. I am drawn to post because my son's greatest wish was to have cc eradicated in young people. I will most likely be a caregiver again whether cancer or other disease (my mom has dementia). For the most part this board is doing exactly what it's supposed to be doing, making people see cancer has many faces young or old, asian, european, african, it has no prejudice...

my 2 cents

[JudeD59]

I still come here because of the people first and foremost. As a caregiver to a son who "moved on" in a way I never wanted, I just like to encourage those new to the battle or old to the battle and those who get to survive the battle. I am drawn to post because my son's greatest wish was to have cc eradicated in young people. I will most likely be a caregiver again whether cancer or other disease (my mom has dementia). For the most part this board is doing exactly what it's supposed to be doing, making people see cancer has many faces young or old, asian, european, african, it has no prejudice...

my 2 cents

See, this is the kind of interesting post/discussion we could be having if the original post by Karin hadn't been quite so confrontational and singled out individual members. I think the question, asked nicely, of "Why do you still come here?" is valid and I personally would love to read more comments like the one above. What a wonderful reason for coming to the board! And it's nice for me, as someone relatively new, to read the other responses about friendships made and bonds formed. I sincerely hope this thread can turn from confrontational to a healthy discussion of what brings people here and what makes them stay.

Judy

[O Stoma Mia]

If you're interested in why people come here, there's an old thread that covers that topic:

What makes you participate here?
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=34183

[JudeD59]

If you're interested in why people come here, there's an old thread that covers that topic:

What makes you participate here?
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=34183

Thanks!

[jalusa]

I come here to look for hope. I have met some neat people in similar shoes to mine. I come here because the folks on here "get it".

[lilacbreastedroller]

I'm back... My original post was a rant. I could have said it more diplomatically - absolutely. But the subject of lingering long-term NED people and caregivers has been bugging me for awhile, and I own what I said. It is how I feel. Everyone may not agree. [ For the record - I did not single out Bev. Didn't even realize she was a five year survivor. I used the five year mark because that's usually a sign of "all clear."]

It's been interesting to read peoples' "why they are here" testimonies, which have opened my eyes a bit.

I don't have much else to say, and I don't think I'm the first person to brush up against the code of conduct. I'll be more diplomatic in the future. Duly noted.

- Karin

[BrownBagger]

Thanks, Karin.

[bitchslapped]

I signed on because cancer struck my family for the THIRD time. As a former caregiver & considered strong by many who know me, I no longer felt strong. I needed to brush up on the latest & greatest. However, none of the latest & greatest would help my DSS. I was desperate. So I spent hours upon hours researching the forum, didn't ask questions, rather posted status updates to the original thread BECAUSE the cancer was just too far advanced. There were no answers the members could provide & I knew this, so why take their time & energy? The search box became my friend.

I was welcomed, learned quite a lot even though it wouldn't help my particular situtation & wanted to GIVE back...call it "user fee", if you will. In doing so, it helped me cope by taking the edge off. I've made some friends, had some laughs, identified w/some of the struggles.
Basically what exaussie said. If I could welcome a new member, provide a perspective maybe from my experience, console, encourage, then it felt like paying it forward somewhat. And ya, I get my back up once in awhile. If it took some of the burden for the smaller stuff on here from those that didn't feel well & were more qualified to spend their limited "feeling good" time for the more significant areas, then it was sort of picking up some of the slack so to speak.

So bottom line: through helping others, it helps us. Since my most recent loss, I tend to stick to the lighter stuff during the grieving process, & tend to respond more to the threads that have 0-3 responses; just to pick up some slack as I've said.

My wish would be that everyone here who has cancer, has a strong, loving advocate & caregiver. You either have it in you or you don't. And let me tell you, I have seen the difference from those that don't have that in their life. As CRguy says: "Those who know shit from shinola" ...applies to the "basic human condition", not just the disease itself.

I have to tell you, though cancer ate away @ the inside of those who were the fabric of my life, it never ate away their spirit through hostility/anger . Because of that, they were always WINNERS in my mind. If I could only make them feel loved & cared for then that was the least I could do.

My hat is off to those w/this disease that continue to advocate on their own behalf. It is humbling to see this.

May be time to move on myself. So there you have it.

None of this horse manure as of late changes MY very best wishes to all of you.

Bitchslapped

[Danieljt]

Karin, you are Way out of line. You've voiced your opinion, so ok You move on. Ned cancer patients give me nothing but Hope for my husband and I. When I read that people have been Ned for 5,7,10,15 years I think gee that could be me. If you don't want to read their posts pass them by and I'll also pass yours by.
Jackie n dan
Both 4 months Ned.

[Bev G]

After this comment, I want to and will leave this topic alone (still really glad to see you Scottyg!)

My dear friend OSM posted a thread from a few years ago, and ironically it was re-reading this thread that helped me understand why I stick around here. It's been several hours since I read Karin's post and have felt very hurt/angry/frustrated since reading it. I don't anger easily, and I typically don't take on other people's opinions, butt I've felt SO bothered by it that I realized, "gee...maybe she's right" If she wasn't, why would I be so upset by it? And, WHY DO I STICK AROUND HERE? if I left, others would undoubtedly pick up any slack I might leave.

I've always felt like this is a unique board, with amazing and sometimes near-magical help and support. When my husband was diagnosed with lymphoma, I went in search for a lymphoma board. It was incredible how different the lymphoma board was. Yes, it was still a cancer board, and we'd been told Steve had <1 year to live...butt on the lymphoma board the encouragement and support just wasn't really there. Last week I had a bunch of vascular studies done and I have severely diminished arterial flow to my left leg. They're planning for intra-pelvic vascular surgery in a few weeks. Can't even find a board to ask my questions about that..

Then I opened OSM's thread she posted. I remember Ashlee started it in response to some conflict (can't remember what) going on here at the time. It was immediately apparent that so many of the posters, my friends, on the that thread are now gone. NO. I am not over it. I cannot and will not move on from their lives and their legacies. These memories and the important role of these now departed friends in my life haven't gone away just because my acute battle with the cancer has. We were important parts of each other's lives. Not a day goes by that I don't think of many of them; Ashlee, Gwen, Lohidoc, KarMel, Pog, Kathryn...the names seem to go on forever. I think the main reason I stick around is this board feels like my connection to them. If I have any advice to give, I've gotten it from my relationships here, with them, and dozens of others we've lost in the 5 years I've been on the board. Anything I post, I hope, honors them and their legacy. For some here members do become like family. When family passes we don't stop thinking about them or loving them, we hopefully don't stop thinking about all we've learned from them, and how sweet those connections were. They live on in a way through our testimony about what they have shared.

I will be re-thinking about my participation here. Perhaps any usefulness I had has been depleted. I think it's generally a good thing to consider new perspectives when they pop up.

[weisssoccermom]

Karin,
I apologize if I came off as being ticked off....because I was. Could I have handled it better...sure I could have. This board is made up of survivors, cancer patients, caregivers and their friends who may need support or reassurance. It isn't a board solely for the stage III/IV patients either. In the past, we have had a couple of comments directed specifically at stage I/II patients that were unkind and caused them to leave or only 'lurk' for fear of reprisal. Two people, both of whom I considered close friends, were initially diagnosed as stage I/II and BOTH had their cancers come back in their lungs. While one, Terry, remained on the board and was a very active member, the other was so hurt by the comments and attitudes of people who felt she shouldn't be here that basically just lurks and won't post. Had some narrow minded people had their way, no one other than a stage III/IV would have been 'welcome'.

I believe Karin, had you asked the question as why survivors, like myself still come to the board, it may have been a more appropriate way to voice your opinions and may not have caused such a stir. You are, however, entitled to your opinion and I very much appreciate the fact that the link to the other topic about why people come here was posted...perhaps, as you indicated, it gives you more of an insight into why we all are here and why some of us remain.

Originally, IMO, Scott started a topic about why he stopped posting because he saw an attitude (in the past to a prior poster) that would seem to indicate that anyone who survives and remains NED should somehow be happy with their life (Scott, I could be reading this all wrong - please correct me if I did misinterpret this) and since he doesn't seem to have that 'zest' for life that he once had, he didn't want to post his 'complaints' and get flamed. That is entirely different than how you approached the subject, IMO.

I would like to quote from the President's Letter (on the first page of this forum):

"... I want to remind everyone of the original purpose of our Message Board. The Colon Club Message Board was designed for those who have been diagnosed with colorectal cancer, their friends, family and caregivers to come together for support, respect, understanding, kindness, hope, and strength."

Regardless of our stage, age, sex, race, religion or income level, we are all in this together. We have all been there or been/are close to someone who has been diagnosed with colorectal cancer. While we all have different roads to travel and different trials to deal with, please don't minimize the contributions of those who have gone through treatments, are done and who still come to this board. At least for me, I stay here out of memory and respect of those who have moved on, for those who are still yet to come and for those who are still here. In the process, we ALL can learn from one another.

[Voxx66]

Some of the best advice I have been given has been from the NED members here and those who have lost their loved ones to this disease but still post. I will be forever grateful they have chosen to stay and share their accumulated experience with the rest of us. I also understand that one may never really get over having this disease and they may benefit from support here. I will not however criticize anyone who chooses otherwise as it is after all their choice.

I want to thank those who have posted in this thread who are currently NED and have been helpful and kind to me and others. This especially includes Jayne and Bev.

[KimT]

I've been NED from colon cancer for 5 years. Just because our cancer is Ned does not negate the friendships and relationships that have been built here.

IMO nobody owes anyone else an explanation or justification for remaining on this board.

Please use the block button if it bothers you that someone is still hanging around the board after long term NED or after a loved one dies.

Cancer is not a license to be a jerk.

Compassion and support are never outdated.

[kellywin]

First - Scott - I hope that you resume posting, at least occasionally, I am not a stage IV, so I can't relate to what you've gone through. I can relate to some of your feelings - at least what I think I understand your feelings are from your post and I think a lot of people can be inspired by your NED status from stage IV. I also think many people can benefit from your feelings now. Nothing is the same after cancer, not your mind/outlook on things, your body, anything. It's hard to deal with, your a perfectly healthy person and bam, one day your not, and every day after that you aren't the same person. Some people may feel better after. Maybe. I'm not one of them, but I people all the time in claiming how it was a "blessing" or that they've "learned something". Good for them. I'm happy for them. But living with the effects of cancer, whether it's financial, chemo, radiation, etc., are not easy, and I think I have it pretty good compared to some. But "pretty good" is "pretty hard" to deal with when you didn't have any of these issues before. When treatment stops, it's not over, at least for me, and I think for many people, it just depends on where you were to begin with, where you went, how you did it and where you end up. And no matter where any of that started or went, there's no right or wrong answer about how to feel now.

Second - Karin - Wow. Really? It's one thing to ask, "hey, why do you come back", but seriously telling people to:

Go! Walk out that door! Dont' come back to bother me

I don't care that it's a song ( which I actually really like, by the way, but the Cake version, not the Gloria Gaynor version) is completely out of line. You have no right to tell anyone who can or should post here and why or why not they shouldn't. Others have said they support your perspective, or your opinion. The things you posted are not a perspective or an opinion. You attacked other members, calling them out, telling them they provide no value, telling them to not post. That's what's out of line. If you personally feel that once someone is cured, they have no business posting here, you are certainly entitled to your opinion, but there's no sign on this board stating "Stop: for current patients only, those who have done the deed back off".

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. Go! Your husband's been dead for two years, MOVE ON!!! I've seen some former caregivers who live on these boards still. This not healthy, I don't think. Same problem with outdated info.

Where exactly do you get off saying to someone that because their husband has been dead for two years that they need to move on?? This is incredulous to me. Actually, most of what you've said is incredulous. Especially the part about the "outdated" techniques, well how about the fact that there are doctors out there that are "outdated" and don't mention Xeloda?

Without the people that have been there and done that, a lot of people would be lost, fishing around for information, advice, a sounding board. I know that it the people on this board helped me when I was first diagnosed and I knew nothing. I come around to see the people that were here when I joined and the ones I've encountered since and to maybe provide that one piece of information that will help someone else. If I can provide one, just one thing that can help someone else, then coming on here and checking and posting has is worth it. But to call any of us unhealthy because we want to help support each other? That disgusts me.

You are certainly entitled to your opinion, but in my humble opinion, you aren't entitled to what you said.

[Nik Colon]

I don't want to say too much but yes I was very shocked. I do understand frustration but.....all I can say is I am stage 4 and currently fighting and could possibly be cured but it's not a guarantee. As to moving on, I personally like to help people when I can and talk about past things such as losing my best friend at 35 from od almost 5 yrs ago and my brother at 45 from suicide almost 3 years ago. I feel it's very healing especially talking to others who may just have these things recent in their life, being there, explaining from both sides as I have clinical depression and was close to not being here a few times in my past. Now with this, I want to also be there for others and if I get to NED will most likely want to still do what I can to help from experience. For me personally it also helps me as I feel if I can help even just one person my personal hell has meaning.