I was so lucky to find this forum a decade ago

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I was so lucky to find this forum a decade ago

Postby Kick'nAssCancer'sAss » Fri Mar 01, 2024 8:41 pm

Chapter 32

Over the course of writing this journal, I have mentioned a few times how valuable the Colon Talk forum has been to me personally during my journey. I stumbled across the forum by accident a couple months after I was diagnosed. I read every day and I read literally hundreds if not thousands of posts as my impending surgery was approaching.

I received insightful down to earth information regarding almost every aspect of colorectal cancer. Everything from diagnosis, treatments, surgeries, reversals, symptoms, side effects, drugs, chemo and radiation. I had all the info I would need right at my fingertips just a click away.

Since its inception in 2005 the Colon Talk forum has had well over 40,000 worldwide members with discussions related to colorectal cancer exceeding well over 40,000 topics.

Many members with hundreds, some with thousands of well written detailed posts made me wonder if some members just wrote posts all day every day. Sharing valuable information and experiences seemed to be a mission amongst many members on the forum.

In the beginning I just read as a guest.

On February 25th, 2014 the day before my big operation I officially joined the Colon Talk forum under the handle Kick'nAssCancer'sAss. I waited a couple weeks after my surgery before writing my first post on March 11, 2014.

*Looking for some good advice
Hi I am new to the board
I was diagnosed on October 31 2013 with rectal cancer after colonoscopy
The following day my CT scan showed no METS
My MRI confirmed I had a T3N0M0 about 9cm from AV
clinically Stage IIA
I did 5 weeks of radiation (25 sessions) ALONG WITH 5fU chemo 24/7 December 2013
LAR TME open surgery Feb 26 2014
Temp Ileostomy bag
left hospital 7 days later when surgeon shared my pathology report
27cm of colon taken out 24/24 lymph nodes all negative for cancer
I thought this was good news but then he told me I HAD A COMPLETE PATHOLOGICAL RESPONSE and the
original 5cm tumor was now just a 2.5cm scar tissue with no signs of cancer in the specimen
Apparently, this happens in about 12-18% of patients with pre-op therapy
Do I need more chemo?????
I meet with ONC later this week and would appreciate any feedback regarding
more chemo.
Thanx for any response*

It now seems so long ago when I wrote that first post from my laptop back at my old condo. I had just gotten home from the hospital after my surgery and I still had no idea what to expect going forward. I had gotten the great news from Dr. G about my pCR (pathological complete response) and I was indeed very happy. But like others who find the Colon Talk forum, I too was desperately searching for reassurance from other members that I was going to win the war on my cancer.

Although I hardly could be considered a frequent poster, I did read new posts every single day. I scoured the forum looking for members as far back as 2005 when Colon Talk began.

I would be searching other member’s signatures for those with the exact same rectal cancer diagnosis. I even found a few who also had a pCR like me. It was those members who gave me so much hope in the early days of my journey.

Many members who I read diligently back then were not so fortunate. They would lose the war on cancer. They openly shared their battles and for many of the battles they would come out winners. But like all cancer patients know it is not winning the battles, but winning the actual war that really only matters in the end.

I would be amiss if I did not mention the many members who in my early days I read daily and are no longer with us today. Many of them unselfishly imparting hope and advice to other members right up to the end. All of their posts are still easily accessible on the Colon Talk forum.

Olivia 'singingholly' - Belle 'NWgirl' - Kenny 'kennytwisted' - Tom 'DK37' - Bev 'BevG' - Richard 'trbiggins' - Carmen 'cb75' - Christine 'Icesk8r' - 'Cherie' - 'H is for Hawk' - 'Mastan' - Ron 'Frenchie' - Nik 'Ritz 75' - Michael 'Voxx66' - 'mstults'.

There are so many others who I enjoyed reading and who are no longer with us today. Fellow Canuck and stage lV rectal cancer survivor CRguy manages an ongoing 'In Memoriam' thread. On this thread he keeps members up to date on other members who have passed on. As I glance through the names there are so many that I remember.

There were two members in particular whose deaths I recall that really hit me hard. Marco was a 30 year old guy from Milan Italy who posted under the handle 'Nester'.

Marco fought his war valiantly for two years. When he realized he was in his final days he simply requested other members from all over the world to send him postcards from where they lived. It was Marco’s way of visiting parts of the world he knew he would never live to see.

The outpouring was truly amazing.

Members sent postcards from everywhere, as far away as Australia. When Marco got them in the mail he would thank publicly in his posts the members who had sent them.

I now regret not sending Marco a postcard. I wish I had.

I remember openly crying reading Marco’s 'My Last Post' thread. The last entry being made by his father informing us all that Marco had passed. He once again thanked everyone for the postcards and how much it had meant to his son.

Probably the one member that stands out above all the rest was Eric who posted under the handle 'BrownBagger'. Eric was a stage IV rectal cancer patient himself, who fought his disease like a warrior since being diagnosed back in March 2009.

Eric’s motto was simple.

'Live your life like it is going to be a long one because it just might, and then you’ll be glad you did.'

For whatever reason no other member captured my attention like Eric did. His motto had stuck in my head since I first read it back when I signed up. I have read every single one of his posts since I joined.

I never met Eric, but in many ways I felt like I knew him personally.

His close to 8,000 posts were always informative, detailed and well written. Eric took the time to always help others, imparting his wisdom and advice to anyone needing it.

As a chemo for life patient himself, Eric knew that once the chemo stopped working he would not survive. He had endured close to 140 rounds of various chemo cocktails. He knew eventually he would run out of options.

It was just a matter of time.

Maybe my attraction to Eric was he like me was an avid cyclist. Eric had logged well over 10,000 miles since his diagnosis. Eric also had a green thumb; he was always posting photos of his garden. It was a very sad day for me when I found out about Eric’s passing in July 2017.

Although Eric did live his life as if it would be a long one, it never was meant to be. Eric was fifty-nine years old when he died.

So many have come and gone over the years since I joined the Colon Talk forum. Too many have sadly died. Many who like me post very little, but we continue to visit and be avid readers on a weekly basis. Others who have won the war on cancer now prefer to move forward with their lives forever putting cancer in their rearview mirror. While some members still just post on a cancerversary to share hope with new members just starting their journeys.

I will be forever grateful for finding the Colon Talk forum.

My goal from day one was to also someday post a post of hope and encouragement. A post after I had been discharged from the Cancer Centre by my oncologists, I was now considered cured. When I first joined, it would be my dream post and it seemed like a lifetime away back then in early 2014.

I now look forward to posting my dream post.

Just like the hundreds of members before me and the hundreds who will no doubt follow me. All of us with one goal in mind, to give newly diagnosed cancer patients hope.

Cancer can be beaten.

Afterall, all a newly diagnosed cancer patient can truly hope for is for hope itself.

53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal

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Re: I was so lucky to find this forum a decade ago

Postby CRguy » Sat Mar 02, 2024 12:02 am

SO many wonderful, poignant and powerful remembrances here, my friend.
Thank you for sharing them in your post.

FYI Eric was my best friend here and we shared many valued times online and offline via phone chats.

The true value of this forum, echoed in what your post says,
IS ... that WE here are ALWAYS here for each other ...

On the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Posts: 340
Joined: Mon Jul 03, 2023 7:57 pm

Re: I was so lucky to find this forum a decade ago

Postby Pagola44 » Sat Mar 02, 2024 12:54 am

I'm stage 3b, sometimes i get worried about recurrance, i have random aches and pains and immediately think its something bad :(
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: I was so lucky to find this forum a decade ago

Postby kiwiinoz » Mon Mar 04, 2024 7:35 pm

Hey, good to see your post and I am glad that an oldie is on posting like this.
I too remember you from the past and am happy to see you are doing well.
I think we all agree that Eric was a legend and his motto helped me too, and I am sure many others. Loosing him was a big loss to the entire CC Community so I appreciate that you too are giving back.
May you continue to do well in the future too.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

Posts: 678
Joined: Tue Jul 02, 2013 3:08 am

Re: I was so lucky to find this forum a decade ago

Postby PainInTheAss » Tue Apr 09, 2024 11:36 pm

Pagola44 wrote:I'm stage 3b, sometimes i get worried about recurrance, i have random aches and pains and immediately think its something bad :(

I STILL get them. One time it was from a kidney stone. Another was my gallbladder aching.

I mentioned my aches and pains to my onc at one point and he gave me some sage advice:

"Don't worry about it unless it keeps you up at night."

So far, nothing has, and I'm still cancer free, going on 11 years.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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