Please don't call to tell me your friend died from CC

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dontwanttobehere
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Joined: Sat Apr 25, 2015 5:41 pm

Please don't call to tell me your friend died from CC

Postby dontwanttobehere » Tue May 26, 2015 4:49 pm

As thought coping isn't hard enough, why do people seem to have diarrhea of their mouth once they hear you have colon cancer. I haven't told many people and I have not been specific about the stage. But of those few, several have felt the need to tell me someone they new or loved also had colon cancer...and died. Seriously, my neighbor just called. She said her friend is worried about me because her own mom had died from CC so she had questions she wanted my neighbor to ask me. But she tried to brighten my day by telling me I should be hopeful because they operated on me and they don't do that if you are going to die :shock: Basically I said "I gotta go".
47 y/o; mom to 5,7,16,18 and 20 y/o
4/20/15 had first scope as recommended by OB/gyn due to family history with large mass found at splenic flexure
unable to pass and see the remaining 2/3 of colon
4/22/15 cancer confirmed, MSS, had genetic testing-all negative!
node in lungs, cysts in liver and kidneys ??all benign we hope
5/12/15 left hemicolectomy laprascopically
T3Nb1MX

localyokal
Posts: 22
Joined: Wed Mar 27, 2013 5:06 pm

Re: Please don't call to tell me your friend died from CC

Postby localyokal » Tue May 26, 2015 5:30 pm

When I was first diagnosed I had a guy tell me that his mother died of colon cancer and that it was a real brutal way to die. That really brightened my day. I don't know about some people.

momof3
Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Please don't call to tell me your friend died from CC

Postby momof3 » Tue May 26, 2015 5:45 pm

Ok don't wanna try to one up anyone, but this reminds me of the nurse my husband had in the er a couple of months ago. He had a micro perf in the bowel. This nurse told us her mom had crc cancer and then went on and on about her final months. I wish I had said something, but I was kind of speechless. You would have thought she would have picked on our silence.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Please don't call to tell me your friend died from CC

Postby Bev G » Tue May 26, 2015 6:04 pm

I've often wondered about this often found trait in people. I was diagnosed with type 1 diabetes as an 11 year old. I must have had people (usually adults) tell me a million times about their family members/friends who had died of diabetes. What adult feels comfortable telling a child that?!? (well, many of them) I haven't been told this a lot as a stage IV CRC person, butt I have lots of friends who have had this information "shared" with them. I just don't get it....is it some sort of attempt at "bonding"? I suppose it's one of the reasons I stick around--letting people know that survival is possible.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: Please don't call to tell me your friend died from CC

Postby jillbugs4110 » Tue May 26, 2015 6:08 pm

People are nuts. They say crazy things to you. I don't remember being so ignorant even prior to.my dx. I have always been able to see myself in others shoes rarely do I think wow better them than me or that couldn't happen to me....i know better no one is exempt all time is borrowed.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

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

Re: Please don't call to tell me your friend died from CC

Postby CRguy » Tue May 26, 2015 6:13 pm

Bev G wrote: I suppose it's one of the reasons I stick around--letting people know that survival is possible.

AND we are all VERY GLAD you do stick around Bev ... :mrgreen:

me ?
I try to stick around just to piss off all the assholes who don't know shit from shinola about what the hell they are yapping about.
Probably like y'all ... I see the mouth moving BUTT nothing useful is coming out of it....
= verbal diarrhea ... and mental constipation :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

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MamaN
Posts: 666
Joined: Tue Dec 30, 2014 2:34 am

Re: Please don't call to tell me your friend died from CC

Postby MamaN » Tue May 26, 2015 6:28 pm

I'm so sorry you've had that experience .. . Lately when I share my story I hear good stories people like to tell me how their mom or wives had crc cancer and they are still here 17 yrs or so later, now those are the stories you need to hear!
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc

midnight_engineer
Posts: 37
Joined: Mon Dec 06, 2010 12:31 pm

Re: Please don't call to tell me your friend died from CC

Postby midnight_engineer » Tue May 26, 2015 6:32 pm

I hear you. This comes from a general lack of "other awareness". We are selfish humans. This is part of our animal tendency. We are programmed to think about "us", not other.

Another problem is that people let their worry make them say dumb things. Offering advice is their way of "controlling" the situation in their minds. You should not let your silence speak for you. Being straightforward and firm, yet gentle, is a subtle and often frustrating art.
May07:RHClctmy,Stg1,21 neg LN, no chemo
Nov10:Stage IV,4 Liver,15 lung, 2 LN, KRAS-Wild
Dec10:FOLFOX/Avstn
Jun11:Leucvrn/5FU/ Avstn,3 liver,3 lung
Mar12:5liver,5 lung,Erbtx/Irntcan
Sep12:Stivarga
Feb13:Immunotherapy
Apr13:Bone mets,IVC clot
May13:Hospice, checked out.
May15: Daughter (28) found two polyps

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horizon
Posts: 1670
Joined: Tue Apr 12, 2011 10:10 pm

Re: Please don't call to tell me your friend died from CC

Postby horizon » Wed May 27, 2015 12:15 am

This makes me really glad that I only told a select for when I was diagnosed. I didn't need to be hearing things like this at that time.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Please don't call to tell me your friend died from CC

Postby DarknessEmbraced » Wed May 27, 2015 9:15 am

I had many people who told me how someone they loved had survived colon cancer which made me feel better.
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! :)

MrPleistocene
Posts: 263
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Facebook Username: vinson.jim
Location: San Diego, CA

Re: Please don't call to tell me your friend died from CC

Postby MrPleistocene » Wed May 27, 2015 11:58 am

Image
DX 11/09 RC Stage IIIb
12/09 Chemorad w/Folfox
Surgery 4/10 LAR, Removed Seminal Vesicles
Clean Margins, T3N2M0, 4/19 Nodes
FOLFOX 6/10-11/10
6/10, 10/10, 1/11 Clean Scans, Normal CEA
12/10 Bi-Nephrostomy
12/10-2/11 HBOT
2/11 Reversal

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exaussie
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Location: Silverton OR
Contact:

Re: Please don't call to tell me your friend died from CC

Postby exaussie » Wed May 27, 2015 12:28 pm

^^^^^^
hahahaha that's a good one.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: Please don't call to tell me your friend died from CC

Postby jjlist » Wed May 27, 2015 12:33 pm

Bev, they don't get much tougher than you. Wow.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

wandalein
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Facebook Username: Wanda Leinweber

Re: Please don't call to tell me your friend died from CC

Postby wandalein » Wed May 27, 2015 5:27 pm

I also felt like no one was very encouraging with my husband, a lack of understanding I think, it went from the extreme of denial, like nothing was going on with some family members or the other extreme of not being able to talk to us without crying. My own mother who lives at a distance was the worse. I would say we went for a walk today and she would say "He can walk" or I would he was out somewhere and she would say amazed "he can drive". I think the worst things I heard were in the hospital, a neighbour came to visit and he said "cancer, man you can't beat that" or a nurse who shared had a brother die of colon cancer mention when we were talking about getting back to normal say "You will never be normal". I guess her own personal experience was with her brother and our neighbour also had a brother who died of colon cancer and my mother has never known anyone with cancer that wasn't bed ridden.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Please don't call to tell me your friend died from CC

Postby jdepp » Wed May 27, 2015 5:38 pm

I ran into a distant acquaintance in a big-box store a couple of days ago.

He instantly asked me for my latest medical news.

There was a 0% chance that he was concerned about me, a 100% chance that he wanted a juicy story to tell. The worse my news, the better for him.

Made me sick.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18


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