There are people here who need urgent psych help,

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peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: There are people here who need urgent psych help,

Postby peanut_8 » Fri Jan 06, 2017 10:19 am

Utwo wrote:
peanut_8 wrote:... there does seems to be a pattern with certain posters that goes beyond a typical cancer rant. After being called out on inappropriate comments, they profess sorrow. Sorry, sorry, sorry. Butt never apologizing to the original person they maligned. :(
peanat, I read this forum regularly although post rather infrequently.
I found a lot of nice people here and complete absense of typical Internet trolls.
Some people need more support, and I am OK with this.

I do not recall any post when somebody was "maligned".
People provide feedback here, and sometimes people have different opinions.
However I would not characterise such discussions as "maligning".

Although vilca11 has some valid points, her concerns are overblown.
Let's accept people "as is" without imposing our particular vision of Internet etiquette on them.


The hurtful posts were soon deleted by the poster in question, just as she has done previously.

The posts in question dealt with whether one contributor in particular, had a right to post on the forum. This seemed to imply, at least in my opinion, that posts by him/her were less helpful than others, thus maligning their contribution. I might add that the poster is a respected one, and does the forum a great service by updating news stories through the year in a sticky thread.
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

Re: There are people here who need urgent psych help,

Postby zx10guy » Fri Jan 06, 2017 12:01 pm

Ok. I'm lying as I said I wouldn't respond anymore on this topic. But this is going to be last time I will respond based on some of the replies after my post on this topic.

What will really help and make a difference for all the concerns being brought up is to split the forum up into subforums. There could be a General Colon Cancer Medical Discussion subforum and then an Off-Topic subforum for rambling about anything one wants to talk about whether it be having a crummy day to sports. I can also see another subforum for Emotional Support. A ton of forums have been organized this way and I'm surprised as popular as this one is there hasn't been an attempt to do same.

This addresses the concerns of those that say certain threads push medically interesting threads from the first page or they get lost in the clutter. It will also allow better search capabilities as you can just target subforums with your search terms. The second issue this addresses is if one is going into the Emotional or Off-Topic subforums, you understand what you're going to get yourself in to; especially the Emotional Support subforum where people should be allowed to rant, rave, yell whatever they want.

Again, no one forces anyone to click on a thread. If you don't like the topic within, don't click on it. Simple. And if it's only a particular person's replies that bother, again there's an ignore function on this forum which some of you all should use. Then you won't have to read their posts as the system will automatically block them from you.

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: There are people here who need urgent psych help,

Postby peanut_8 » Fri Jan 06, 2017 12:10 pm

zx10guy wrote:Ok. I'm lying as I said I wouldn't respond anymore on this topic. But this is going to be last time I will respond based on some of the replies after my post on this topic.

What will really help and make a difference for all the concerns being brought up is to split the forum up into subforums. There could be a General Colon Cancer Medical Discussion subforum and then an Off-Topic subforum for rambling about anything one wants to talk about whether it be having a crummy day to sports. I can also see another subforum for Emotional Support. A ton of forums have been organized this way and I'm surprised as popular as this one is there hasn't been an attempt to do same.

This addresses the concerns of those that say certain threads push medically interesting threads from the first page or they get lost in the clutter. It will also allow better search capabilities as you can just target subforums with your search terms. The second issue this addresses is if one is going into the Emotional or Off-Topic subforums, you understand what you're going to get yourself in to; especially the Emotional Support subforum where people should be allowed to rant, rave, yell whatever they want.

Again, no one forces anyone to click on a thread. If you don't like the topic within, don't click on it. Simple. And if it's only a particular person's replies that bother, again there's an ignore function on this forum which some of you all should use. Then you won't have to read their posts as the system will automatically block them from you.


To your last point, it should work in theory, butt in this particular case, the thread started off as a Happy Holiday post. And because of general principal, I don't believe in putting anyone on ignore.

peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: There are people here who need urgent psych help,

Postby radnyc » Fri Jan 06, 2017 12:21 pm

This reminds of a particular poster, no need to name, who was on here a few years ago. She was very authoritative and seemed to posses vast knowledge of science and cancer in particular. She had many posters on here who admired her, and many like me who found her comments arrogant, and condescending. As her disease unfortunately progressed her posts became more and more unbearable, she eventually succumbed to the cancer. The last straw for me was when she PM'ed a very young poster with very aggressive, incurable disease, who was clearly desperate for some comforting words. Well what ever she told him did not help and he posted some very angst ridden, painful posts after that, he soon lost his battle. She did not help. This board has been very helpful to me and many, medical info, diet, supplements and exercise information, and HOPE. Words do matter on here, please be careful.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: There are people here who need urgent psych help,

Postby mariane » Fri Jan 06, 2017 2:42 pm

I once was a member of infertility forum. It was very helpful to me. To help find the necessary info faster but also provide emotional support forum was divided into sections. There was a section: "let's talk". On this section everybody could seek support or talk even about snowy weather if was in the mood. Maybe "let's talk" section could help people here as well. I strongly believe that we cancer patients need emotional support and I received it here when I badly needed it. I, as many more found hope and help here. People who seek only info about treatment do not have to even check the "let's talk" section while others can find friends who share their concerns but also hopes and small joys.

I think everybody finds some threads difficult. Some of us are more sensitive than others. Anyway I think even discussion how we deal with our stress/ life during treatment/after treatment/ palliative treatment may help.
Last edited by mariane on Fri Jan 06, 2017 10:35 pm, edited 1 time in total.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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vilca11
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: There are people here who need urgent psych help,

Postby vilca11 » Fri Jan 06, 2017 3:18 pm

I did not mean to create such a discussion on this subject. All old members of this forum recognized who I am talking about, judging by Thank you emails and PMs I've got... That one particular poster, that I had in mind, as it was mentioned before by others on the thread, was advised many times in a nice manner to seek help, but never listen. No one was able to stop that person from the continuing pattern - it is a modus operandi in that person's life to contaminate others. So for me it was "enough is enough"....

New people here misunderstood my message. I was always among the first ones to share important info, among the first ones who showed compassion, empathy, emotional support to our fellows who cried, lost hope, vented, desperate, depressed, etc... But anger, hate, jealousy are not what we need to be repeated in rants here.... all about Me is not what we need to be repeated in rants here...

Out of 700+ posts that I wrote in 3 years of being here, less that 5% are about me, or with my questions, and I never complained. Even these "less than 5%" almost always had info for others... I am "scheduled" to die soon, I've been making my last extremely hard efforts to save my life for the last 15 mo , and I did not want to add any of my negative feelings to the suffering of others - that is why I was out of the board for a long time, posting only at the beginning of my experiment and after it. Btw, I do not have any negative feelings - that is what spiritual work for the last few years did for me... And one more Btw - my post was the only post of this sort I have ever made... that alone shows you how much me and others were fed up....

My message to this one poster who aggravates heck out of others was not an expression of anger or any other negative feelings of my own - it was a need to stop that person from contamination of the board, need to speak the only language that person understands and need for a direct reflection of the behavior that person is exhibiting - may be now it is evident to the poster how such behavior could be viewed, which might help to stop it...

I thought I owe the board some explanation, so now you have it...
Thanks, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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BrownBagger
Posts: 7954
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Location: Central NYS

Re: There are people here who need urgent psych help,

Postby BrownBagger » Fri Jan 06, 2017 3:32 pm

I'm very, very close to someone who needs "urgent psychological help" who refuses, for whatever reason, to seek it. There's nothing I can do about it, so I don't complain or take it personally. I've also discovered that pointing it out or attempting to get others involved, does no good.

So, I live with it.

Just to be clear, we have clear standards of conduct and behavior on this board. My fellow mods and I can't ban or sanction people who don't violate them.

We live with it.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: There are people here who need urgent psych help,

Postby mypinkheaven » Fri Jan 06, 2017 3:54 pm

BrownBagger wrote:Just to be clear, we have clear standards of conduct and behavior on this board. My fellow mods and I can't ban or sanction people who don't violate them.

We live with it.


The only good thing about this thread is hearing from BrownBagger. I hope you're doing well.

Sally
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: There are people here who need urgent psych help,

Postby ams5796 » Fri Jan 06, 2017 4:07 pm

The only good thing about this thread is hearing from BrownBagger. I hope you're doing well.



I was thinking the same thing! Always the voice of reason.



Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

bitchslapped
Posts: 1538
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Location: PNW/USA

Re: There are people here who need urgent psych help,

Postby bitchslapped » Fri Jan 06, 2017 5:53 pm

Maggie Nell wrote:I am confused: do people not have the intelligence to navigate this forum and to go to the RH bottom of the screen and click '2' to turn the page...or
to avail themselves of the search function? :? Maybe there needs to be a 'next' button in big letters and chasing lights for the numerically impaired.


vilca11 wrote:who post for the sake of posting and being on the first page, who confuse honesty with their verbal diarrhea...


Sophy wrote:It is sad that new people who come to the forum nowadays may not be able to see the posts which might help them among the Look at Me Me Me posts and Vote For Me Me Me posts.


Pita wrote:And what is wrong with thanking the people that give you advice, seriously I wish I had the stamina to do like others do, one by one, but I'm basically a lazy person and I do one post for all thank you's. If you don't like a particular post, skip it. Or maybe I had to be here longer to understand it, seems the ones complaining have been around a long time but sure haven't been here in awhile, at least I haven't seen them much in the almost year I've been here. If you so dislike how it is, get back on here and be active.


Intelligence s/n be confused w/behavior. Some may tend to stick to the front page news, while others appear to enjoy being front page news, very possibly w/o realizing it. Some of us have bumped a thread or two that may have gotten buried & glad to do it, & lo & behold, they get some &/or additional responses.
# of "thankyous cannot be assumed as a measure of any given person's gratitude on the board for input received. It's what we do here; give/receive. While a lot of us follow the board, nothing wrong w/reserving input until one actually feels they have some & prepared to deliver it.

Best Wishes to ALL
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: There are people here who need urgent psych help,

Postby Utwo » Fri Jan 06, 2017 6:07 pm

That's strange.
Nobody posted in this thread who was hurt by supposedly "maligning" posts by a person in question.
Everybody tried to defend somebody else's feelings.

I suspect that these people do not need our protection.
They are adult and can complain directly to moderators in case they are really hurt.

Anyway, if a person found this forum using Google, she came here for information and would disregard a tone of the responses. So, do not worry about newcomers. They have different priorities.
If they were able to find this forum using Google, they will be able to find infirmation on 2-nd or even 222-nd page using local search function.

I am concerned about a risk that the energy of this forum can be destroyed by either heavy handed moderation or by proposed modifications to its structure.
Right now Colon Talk is a site with the highest traffic among all sites related to colon cancer.
Let's keep it that way.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

ccmc
Posts: 43
Joined: Mon Jan 21, 2013 9:13 pm

Re: There are people here who need urgent psych help,

Postby ccmc » Fri Jan 06, 2017 7:45 pm

Members please note :
This topic appears to have run its useful course and may be closed,
after review of numerous reports and PMs received by the Administrators and Moderators.

Please remember this is a support forum and guide your participation accordingly.
Colon Club Moderators Committee

CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

Re: There are people here who need urgent psych help,

Postby CLD » Fri Jan 06, 2017 9:36 pm

My impression is that this forum has different meaning for different people. When DH 1st dx,I was on constantly and felt I could ask, share whatever I needed to. I always felt grateful for any advice. Now that he is further along in journey, I often skip a day or 2 without even thinking about it. As scans approach, Im on more frequently. Anyhow, maybe for some people, this forum is what keeps them going day after day, treatment after grueling treatment. I agree with the previous posters who say just dont read the ones that dont interest you.I dont know who the "offender in question" is, but we are all in this fight together.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

Nik Colon

Re: There are people here who need urgent psych help,

Postby Nik Colon » Fri Jan 06, 2017 10:26 pm

I'm only posting to answer the question...I AM THE BIG BAD WOLF! And since some may have not seen my apology to Garbovatwin...I am very sorry, I was out of line and wrong.

There you go,
Hope you all get to NED and have a great life.
Peace

I thought this topic was closed but obviously not, so, there is your answer.

ETA: Here is the link and my apology which "I didn't make" supposedly

viewtopic.php?f=1&t=56730&start=15

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: There are people here who need urgent psych help,

Postby mypinkheaven » Sat Jan 07, 2017 12:49 pm

Nik Colon wrote:Hope you all get to NED and have a great life.
Peace


How are you doing, Nik? I know how difficult it must have been to learn about the lung mets. Have you come up with any plan with your oncologist?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping


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