I will always be grateful I found Colon Talk

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muskokamike
Posts: 227
Joined: Tue Feb 25, 2014 4:38 pm

I will always be grateful I found Colon Talk

Postby muskokamike » Sun Mar 29, 2020 9:50 am

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
more chemo.
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.

Afterall.

All a newly diagnosed cancer patient can truly hope for is hope itself.
53M Dx rc10/31/13
WTF!
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
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
0-4 normal
https://kicknasscancersass.blogspot.com/

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CRguy
Posts: 10141
Joined: Sun Feb 10, 2008 6:00 pm

Re: I will always be grateful I found Colon Talk

Postby CRguy » Sun Mar 29, 2020 2:39 pm

That is a beautiful tribute about who we are here and what we all do here.
We care for each other, the people inside the disease, and let the doctors take care of the disease inside the people.
The strength of this forum IS it's members.

I have actually come to view the "In Memoriam" topic as more of a celebration of friends because they lived here with us, and now, less of a remembrance that they have passed. Too many have passed.

Thank you for sharing your heartfelt memories and hopes.
I hope members take the time to check out your blog. They will really get to know you better !

Love Peace and Harmony
to all on the Journey

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

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Jack&KatiesMommy
Posts: 610
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: I will always be grateful I found Colon Talk

Postby Jack&KatiesMommy » Mon Mar 30, 2020 9:16 am

Just beautiful. I have no other words.

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: I will always be grateful I found Colon Talk

Postby Lee » Mon Mar 30, 2020 8:12 pm

I agree, beautiful words.

I remember Marco and all the other folks you mentioned. I remember getting a couple of post cards for him and then going to the post office. Some kind of express (EXPENSIVE) mailing. The person at the post office, looked at me, looked at the price, then looked at me again. "Are you sure you want to do this? (for a couple of post cards)' Between gritted teeth, yes, JUST DO IT!! I did NOT want to go into details as to why .

A week later, I was in another state, family reunion, got a few more and sent them the old fashion way. Regular mail.

Many years ago, down in Australia. An elderly man who had survived colon cancer ONCE would get brain mets years later. It took them awhile to figure out what was happening, then he was deemed terminal, months to live. Anyway when he was finally diagnosed his daughter got on line to this forum, since the Christmas holidays are coming up, could you please send him Christmas cards. At first, he got very concerned, he could not remember the names of all these people sending him cards, he was scared he was losing it. His daughter told him what was going on. This was something of a rural area and he was getting Christmas cards from ALL OVER THE WORLD. He became something a local legend, made the nightly news, all his cards were on display for all to see. He passed a few days after Christmas. For many years, those cards were on displayed.

Sometimes, we as humans do get it right, we see the goodness. I think we are seeing a lot of that right now.

Be safe, be healthy,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: I will always be grateful I found Colon Talk

Postby JJH » Tue Mar 31, 2020 2:28 am

Lee wrote:I agree, beautiful words... I remember Marco and all the other folks you mentioned. I remember getting a couple of post cards for him and then going to the post office...


"The darkest hour is just before the dawn" - Thomas Fuller (1650)

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CRguy
Posts: 10141
Joined: Sun Feb 10, 2008 6:00 pm

Re: I will always be grateful I found Colon Talk

Postby CRguy » Tue Mar 31, 2020 12:59 pm

Lee wrote:Many years ago, down in Australia. An elderly man who had survived colon cancer ONCE would get brain mets years later. It took them awhile to figure out what was happening, then he was deemed terminal, months to live. Anyway when he was finally diagnosed his daughter got on line to this forum, since the Christmas holidays are coming up, could you please send him Christmas cards.

if you have a spare Christmas card..this would be nice
was the original topic from catta
and Ashlee H. continued the theme Xmas cards 4 Percy - All 50 States Represented!

I recall we also did a Card Shower for DK37 started by our very own President Phuong
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: I will always be grateful I found Colon Talk

Postby JJH » Wed Apr 01, 2020 6:07 am

Mike -

Now that you have reached your 6th and final goal and have concluded you blog with an Epilogue, would you consider transforming your set of blog posts into a book?

There are several people on this forum who have done that sort of thing. Some have even published their books officially with a proper ISBN number. Some have published in Kindle format using the Amazon platform. Some have published in paperback format and have had book-autographing events in their home-town bookstore.

There are several apps (some free) and services (some for a fee) out there on the internet that can help you do this -- i.e., to create a hard-bound book, or a digital PDF file book, or a portable e-book, for example. Here is just one of those services:

Converting blogs to books
https://www.blog2print.com

I think there would be two main audiences for your blog/book:

  • Stage IIA patients - Adjuvant therapy patients who would like to see what's involved in a successful treatment plan to reach complete remission by the end of the followup period
    .
  • Patients/caregivers in the "Class of 2014" - For persons who browsed or joined this forum in the 2013/2014 time frame, your blog posts serve as a kind of memory book or class yearbook that documents many of the things that we experienced together when we were "in the trenches" undergoing treatment and accessing the forum frequently.
So, what do you think? I think it's an option that would make your blog post chapters available to a wider audience.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

retiredteacher
Posts: 114
Joined: Sat Oct 21, 2017 1:34 pm

Re: I will always be grateful I found Colon Talk

Postby retiredteacher » Wed Apr 01, 2020 11:59 pm

Beautiful Mike. Powerful heartfelt words. Feel likewise about this forum and believe you speak for many of us sharing the same connection to this place ... A wonderful tribute and many thanks to the admins and moderators who have kept afloat this lifeboat for so many years. With love - Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

kiwiinoz
Posts: 1149
Joined: Thu Jan 03, 2013 11:44 pm

Re: I will always be grateful I found Colon Talk

Postby kiwiinoz » Thu Apr 02, 2020 5:09 pm

Hi Mike
I think we all agree that Colon Talk provides a safe haven for a great variety of different folk. What we all want from this environment is different for us all, and it differs as we pass through different stages.
I too have a great recollection of Eric and his passing really shocked me. I knew it had to happen one day but I thought he was in a stable place so the quickness of it shocked me.
How is your life outside of Colon Talk? Has it changed much from pre cancer? Do you view things differently, or much the same as before?
kiwi
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 - 22 May 2019
Port Out 26 March 2015

DarknessEmbraced
Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I will always be grateful I found Colon Talk

Postby DarknessEmbraced » Sat Apr 04, 2020 11:01 am

Thank you so much for your beautiful post! I know I am very glad that I found this forum after my diagnosis in 2014 as I would have been lost without the support I found and still find here. :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Rob in PA
Posts: 2003
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: I will always be grateful I found Colon Talk

Postby Rob in PA » Sat Apr 04, 2020 1:12 pm

Great post Mike! Almost every obstacle i faced in my journey was discussed at some point on this forum, and for that, I am forever grateful.

This Board got me through some of the darkest moments of my cancer journey.

Thanks again Mike!


Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

User avatar
muskokamike
Posts: 227
Joined: Tue Feb 25, 2014 4:38 pm

Re: I will always be grateful I found Colon Talk

Postby muskokamike » Sat Apr 04, 2020 2:05 pm

CRguy wrote:That is a beautiful tribute about who we are here and what we all do here.
We care for each other, the people inside the disease, and let the doctors take care of the disease inside the people.
The strength of this forum IS it's members.

I have actually come to view the "In Memoriam" topic as more of a celebration of friends because they lived here with us, and now, less of a remembrance that they have passed. Too many have passed


A celebration of friends does sound so much better. Thanx again for all you do here and continue to do.

Jack&KatiesMommy wrote:Just beautiful. I have no other words.


Thanx you for your kind words Cynthia

Lee wrote: Sometimes, we as humans do get it right, we see the goodness. I think we are seeing a lot of that right now.

Be safe, be healthy,

Lee


Yes we do. There has always been a lot of goodness on this forum. Thanx Lee for your reply and you too be safe and healthy.



JJH I had never seen those videos. Marco truly was a warrior right until the end. Thanx for sharing and your kind words about sharing my blog. Maybe someday I will do the book thing. There have been close to 6000 reads on my blog already. A few people have contacted me and relayed how the blog had helped them prepare for their journeys. That was my intention for writing it.

retiredteacher wrote:Beautiful Mike. Powerful heartfelt words. Feel likewise about this forum and believe you speak for many of us sharing the same connection to this place ... A wonderful tribute and many thanks to the admins and moderators who have kept afloat this lifeboat for so many years. With love - Terri


Thanx Terri for the positive review.

kiwiinoz wrote:Hi Mike
I think we all agree that Colon Talk provides a safe haven for a great variety of different folk. What we all want from this environment is different for us all, and it differs as we pass through different stages.
I too have a great recollection of Eric and his passing really shocked me. I knew it had to happen one day but I thought he was in a stable place so the quickness of it shocked me.
How is your life outside of Colon Talk? Has it changed much from pre cancer? Do you view things differently, or much the same as before?
kiwi


Hey kiwi one of my first post replies was from you. Thanx again. My life has pretty much turned to as close to normal has I could have expected. Actually better than I could have expected. I learned from cancer that you should always cherish life and live each day to the full. You just never know what is around the corner. Most members on here can relate I am sure. Still have some issues but I will take them. They are a very small price to pay to be able to still be here reading this forum while self isolating.

DarknessEmbraced wrote:Thank you so much for your beautiful post! I know I am very glad that I found this forum after my diagnosis in 2014 as I would have been lost without the support I found and still find here. :D


Thanx Riann and fellow canuck. You def would be considered a frequent poster with lots of "hugs" to go around. Hope you are doing well

Rob in PA wrote:Great post Mike! Almost every obstacle i faced in my journey was discussed at some point on this forum, and for that, I am forever grateful.

This Board got me through some of the darkest moments of my cancer journey.

Thanks again Mike!


Rob


Hi Rob, you're another frequent poster with so much good advice. If I recall also a Penguins fan. Hope you are doing well also.
53M Dx rc10/31/13
WTF!
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
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
0-4 normal
https://kicknasscancersass.blogspot.com/

Koreysue
Posts: 147
Joined: Mon Apr 30, 2018 2:36 pm

Re: I will always be grateful I found Colon Talk

Postby Koreysue » Fri Apr 10, 2020 1:51 am

Very well written. Beautiful sentiments.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month


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