Just an O/T rambling

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Just an O/T rambling

Postby CRguy » Fri Nov 25, 2016 12:58 am

Very often I feel I really don’t have a place to be “heard”
I have a number of real friends I chat with offline or by email or IRL

NO EFFIN” WAY by f book !!!!! :twisted: :twisted: :twisted:

BUTT the only REAL experience I get when I go outside my own personal circle, which IS small

IS the ColonTalk forum
I post and we go back and forth

I PM and we can go deeper …. back and forth

I can email and get even deeper into … back and forth.


Always Yin / Yang :

there are those who we lose
… who I miss every day

there are those who are here
… but we take for granted

there are those who just arrived
… we may not yet value ???

BUTT

we are ALL
after all
just US
just HERE
JUST ………………….. ?

we are all here for our own reason, with our own story

which I guess is why I am posting THIS

I am here because when I NEED to be here
if and when I NEED to be heard

I AM HERE WHEN :
“ Very often I feel I really don’t have a place to be “heard” “

WE all speak the same language
and someone HERE will HEAR us

end rambling,
still on the Journey

Harmony to ALL
CRguy
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

Nik Colon

Re: Just an O/T rambling

Postby Nik Colon » Fri Nov 25, 2016 1:47 am

I hear ya! I will try to think of something more poetic and get back to ya :)

Nik Colon

Re: Just an O/T rambling

Postby Nik Colon » Fri Nov 25, 2016 2:00 am

One fish Two fish
Red fish Blue fish
This one has a little scar
That scar is a little far
Some are long
And some are tall
Some are wide
And some are small
Some poo's hard
Others are soft
And some let off
An awful waft!
Some get worse
Others get better
And don't forget
Us poo bed wetters
Form near to far
From here to there
Us CRC's are
Everywhere!

Just off the top of my head, could have made it longer (and better, more like the original format, butttttt)
Feel free to add!!! :mrgreen:

Nik Colon

Re: Just an O/T rambling

Postby Nik Colon » Fri Nov 25, 2016 2:06 am

FYI, I'm always here for you and anyone who wants to talk. <3

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Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Just an O/T rambling

Postby Cowgirl918 » Fri Nov 25, 2016 11:34 am

I love both of your creative compositions. Keep up the good work. :D
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just an O/T rambling

Postby DarknessEmbraced » Fri Nov 25, 2016 6:58 pm

We are all in this together! :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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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Just an O/T rambling

Postby chrissyrice » Fri Nov 25, 2016 9:46 pm

Always like to connect here... this is where I first arrived some 5 + years ago when colon cancer hit my ass :(

So many wonderful people and wild discussions O/T or serious On Topic ... missing a lot of people who died over the years and touched my heart in such special ways.

Families broken and families healed too.

I stop in here a lot and FB too... but it is a bit more easier to follow along here with people and our signature stories.

Glad I am still around :D

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Just an O/T rambling

Postby BeansMama » Sat Nov 26, 2016 6:43 am

I am thankful that I can come here and talk with people who understand. I can PM/Email/text/call (although I'm not a big phone call person) if I need to and they get it.

It is hard for someone who hasn't actually gone through this to give the support needed sometimes it takes having gone through it to fully understand what someone needs. Here I don't encounter the awkward situations where a person doesn't know what to say. They think I am expecting them to impart some great wisdom and really I don't I'm just saying it sucks.

I can vent, ponder different treatments, get information on those treatments that I am thinking about. There is support when I have a bad scan or when chemo is whipping my butt.

The people here are invaluable and I will be forever grateful I found this site, and I will always do my best to support and uplift the others here.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Just an O/T rambling

Postby Lee » Sat Nov 26, 2016 2:04 pm

CRguy wrote:
NO EFFIN” WAY by f book !!!!! :twisted: :twisted: :twisted:

CRguy


I'm not a fan of facebook. Too many people writing stupid comments WITHOUT looking to the eye of the person they are writing to. I know for many people it is an extension of themselves, butt not for me. It can be a wonderful way for many people to keep in touch and communicate. I can't help butt feel for some who hang out on face book so much is because they don't have a real life. So very sad.

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 - 16 years and counting!

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Just an O/T rambling

Postby teachpdx » Sun Nov 27, 2016 10:25 pm

I post on FB butt not when it comes to my cancer journey. Not looking for sympathy, just understanding, and know that won't happen on FB. This site is my source of strength when needed.

Peace, Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Just an O/T rambling

Postby LeonW » Tue Nov 29, 2016 6:10 am

CRguy wrote:NO EFFIN” WAY by f book !!!!! :twisted: :twisted: :twisted:

CR, I beg to disagree;
It's *not* off-topic! Just one of your many contributions that make this board great :D
Plse keep up.
Thanks L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Just an O/T rambling

Postby CRguy » Sat Dec 03, 2016 11:23 pm

Ok so Yes, I do go O/T
BUTT .... I’ll just add this here to save us all the distraction of reading a new topic !!!

Today :
5 am there was an armed robbery / home invasion at a house my D and her BF live in.

D was outta town for the wk/end on a girls shopping expedition
BF was there.

Knock on door
Front porch lite goes on
sees a girl on the porch asking for help
opens door
guy rushes in, pulls a machete
asks for cash, grabs laptops and set of house/car keys
in / out in under 2 minutes ……GONE !

YES I know I have had this discussion already :
“ You opened the effing door ? “

Police 911 called
changed house locks
car is in limbo ( not there when the robbery took place )

I am sitting here just thinking
Yeah OK quiet community, coulda’ been a neighbor in need of help ?

I don’t open doors for folks I don’t know …..
DUH ……

Yeah I know hindsight is always 20/20
which is why I practice FORESIGHT !!!!!!!!!!!!!!!

Which is kinda why I can be a bit of an asshole at times :
" No I don't just trust you up front .. you need to EARN my trust and respect. "

End rant
for now

still working on Locking the comps and dealing with insurance / gendarmes

YES I had better things to do today
BUTT this is what I NEEDED to do.

UPside = nobody got hurt

CR ... out :twisted:
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

Nik Colon

Re: Just an O/T rambling

Postby Nik Colon » Sun Dec 04, 2016 1:21 am

That's horrible! so thankful no one got hurt

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Just an O/T rambling

Postby bitchslapped » Sun Dec 04, 2016 5:43 pm

To your original post: Yes, Yes, & Yes!!!
To your 2nd post: OMG! Apparently we live in the age of security lights & cameras.
As an aside, my mother believed in some type of locked screen door as an extra small barricade between you & the person on the other side of the door to buy some time in situations such as this. Calling 911 may be all the time one needs. Not a door answerer myself, but some type of security door sounds like a cheaper alternative to nothing at all.

Things can be replaced. People can't. Glad it wasn't any worse than it was.

Best Wishes
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

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Just an O/T rambling

Postby fumaros » Sun Dec 04, 2016 7:35 pm

to the first topic - you guys feel more real to me than most of the people i interact with in real life. Excellent poetry skills CR Guy and Nik Colon - I am jealous of your rhymes and flow. Your writings are beautiful.
2nd topic - wow. a machete! that is not your conventional armed robbery weapon. Really glad no one was hurt thought.e
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED


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