COLON TALK is part of my journal. Thanx to everybody here

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muskokamike
Posts: 217
Joined: Tue Feb 25, 2014 4:38 pm

COLON TALK is part of my journal. Thanx to everybody here

Postby muskokamike » Sat Jul 06, 2019 7:31 pm

Chapter 32

Over the course of writing this journal I have mentioned a few times regarding 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.

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
more chemo.
Thanx for any response

March 11 2014


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 my surgeon 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, Shannon ‘GreenMonkey’ who also became a Facebook friend. Thank you Jaynee ‘weisssoccermom’, ‘kiwiinoz’, ‘llupp’ and the late ‘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 members 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 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 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. Too many. 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 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 myself, post very little but continue to visit and be avid readers on a weekly basis. Others, who have won the war on cancer now preferring to move forward with their lives, forever putting cancer in their rearview 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 a dream post and it seemed like a lifetime away back then in early 2014.

I look forward to sharing that dream post. Just like the thousands before me and the thousands who will follow me, all of us with one goal, to give newly diagnosed cancer patients some hope.

Cancer can be beaten.

Afterall.

All a newly diagnosed cancer patient can truly hope for, is hope itself.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
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
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 Sept 18
0-4 normal

Jacques
Posts: 414
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: COLON TALK is part of my journal. Thanx to everybody here

Postby Jacques » Tue Jul 09, 2019 12:25 am

Thank you for sharing Chapter 32 of your journal. It is well-written and informative and gives a very good overview of the virtual community here on ColonTalk.

And congratulations on reaching the end of your 5-year surveillance period. It won't be long now before the oncologists will get tired of seeing you every year. In a year or two they will likely re-assign your case to your GP and be finished with you.

That's what happened to me this year. I went in for my annual review of scan/bloodword recently, and the meeting only lasted about 2 or 3 minutes. Just long enough to tell me that I don't need to do annual scans/bloodwork anymore.

Looking forward to seeing your "dream post" some day ...
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
End of six-year follow-up period: 7/2019
7 years NED
7 years LARS syndrome + peripheral neuropathy
----
Info links:
List of forum features
How to select a surgeon

MissMolly's insightful posts

User avatar
CRguy
Posts: 9927
Joined: Sun Feb 10, 2008 6:00 pm

Re: COLON TALK is part of my journal. Thanx to everybody here

Postby CRguy » Tue Jul 09, 2019 12:07 pm

Thanks for sharing that Mike,
it is a poignant reminder to us all how valuable this forum is
AND how many wonderful folks have been here and continue to be here.

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


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