Chapter 32 of my 'kick'n ass cancer's ass" journal
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, literally dozens 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. Now all the info I would need was 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 40,000 topics.
Many members with literally hundreds, some 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 ‘Muskokamike’. I waited a couple weeks before writing my first post on March 11, 2004.
(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
HE SAID GREAT NEWS
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
Thanx for any response)
It seems so long ago when I wrote that post from my laptop back at my old condo. I had just gotten home from the hospital after surgery. I still had no idea what to expect going forward. Sure, I had gotten the great news from Dr. Gupta about my pCR (pathological complete response) and was 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 cancer.
Thank you so much to the five members including Shannon ‘GreenMonkey’ who also became a Facebook friend. Thank you Jaynee ‘weisssoccermom’, ‘kiwiinoz’, ‘llupp’ and ‘mstults’ all for your positive feedback to my first post.
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 member’s signatures for those with my exact same rectal cancer diagnosis. I even found a few who had a pCR like me. It was these 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, 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.
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’.
Along with these members, many others who I enjoyed reading, 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 I remember.
There were two members whose deaths I recall really hit me hard. Marco was a 30 year old guy from Milan Italy who posted under the handle ‘Nester’.
Marco fought his war for two years. When he realized he was in his final days he simply requested 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 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 regret now not sending Marco a postcard.
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 and once again thanking 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 in March 2009.
Eric’s motto was simply “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 had. His motto had simply 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 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 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 rear view mirrors. While some members still just popping up on a cancerversary or major milestones, just 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 that post of hope and encouragement. That 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 look forward to sharing my dream post. Just like the thousands before me and the thousands who will follow me, one goal, to give newly diagnosed cancer patient’s hope.
Cancer can be beaten.
All a newly diagnosed cancer patient can truly hope for is hope itself.
53M Dx rc10/31/13
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 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