Hope vs reality

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ScaredButGottaWin
Posts: 15
Joined: Sat Nov 18, 2017 5:53 am

Hope vs reality

Postby ScaredButGottaWin » Wed Feb 12, 2020 12:21 am

I want to be hopeful. Very much so. It is what we are supposed to do. At the same time, I know based on what doctors tell me and what I can figure out online, is that I don't have a lot of time left (maybe a year). How the f#@k are you supposed to live like this?!?! I want to be hopeful, but that is hard in light of the circumstances. Quite simply, my question to the group is how you keep your shit together while knowing what the road ahead looks like?
Colonoscopy Nov ‘17
Peritoneal Mets discovered Dec ‘17 (signet ring cell)
FOLFOXIRI - Jan'18-April '18
HIPEC May '18 (NED!)
FOLFIRI June '18-April '19
Recurrence Jan '20 - peritoneal cavity

Rock_Robster
Posts: 454
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Hope vs reality

Postby Rock_Robster » Wed Feb 12, 2020 5:30 am

Funny I was just discussing this with my therapist today. His view is that the future is unknowable - for everyone, not just cancer patients. But because we have a lot of statistics available to us, we tend to have a false confidence in how we think things will play out (as evidenced by your “maybe a year”, and “knowing what lies ahead” comments). The reality is there is no way to know this for any individual case or person.

Given the future is unknowable, what we can do however is have faith in our ability to cope and handle it, whatever may happen. This doesn’t mean it will necessarily be pleasant, but that we can manage. You have already been through a lot (tough diagnosis, tough chemo, tough surgery), and you have demonstrated repeatedly your competency and capacity to handle adversity. So all you can do is believe in your ability to continue to handle and make the most of whatever the future might bring - positive or otherwise.

Sorry I know this isn’t necessarily great, but I found it more helpful than the “just think positively!” approach.

Rob
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Ileostomy reversed

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GrouseMan
Posts: 830
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Hope vs reality

Postby GrouseMan » Wed Feb 12, 2020 10:31 am

Well - It was especially difficult for me as a caregiver, and former Anticancer drug discovery chemist. I very much knew what the diagnosed meant. The very advanced staging I pretty much knew what to expect, talk about despair that I tried very hard to keep to myself! My wife kept up a pretty positive though unrealistic view of her situation. We both knew but never let it really get her down. She lived her life pretty much the way she desired to live it. Set goals I think deep down she knew she could not achieve, and I went along with them. She retired a few months before her passing, and enjoyed her time on a horse chasing dogs in field trial events and judging these which was her primary hobby. She had judged an event on horseback only a week before she was last hospitalized.

My advice. Look for a clinical trial that might extend that time some if possible, and if your quality of life is still good - do some of the things you always wanted to do but haven't yet taken the time to do. Try and enjoy the time you have left. Spend time with friends and family that you enjoy being around.

Good luck

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

brokenwings
Posts: 109
Joined: Mon Jan 07, 2019 1:50 am

Re: Hope vs reality

Postby brokenwings » Thu Feb 13, 2020 2:13 am

I ask myself that same question on a daily basis... I wish I had an answer...
I feel related to your story because even if right now I'm dealing with some liver mets, I know my demise will be peritoneal disease. I had lots of it before Hipec and it's bound to return and kill me.

I second the idea of looking for clinical trials as I've seen that in some cases they can be life-prolonging... Are you familiar with the Trial Finder?

Hugs
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
10/31/2019: Hipec + 6 weeks in hospital
12/30/2019: 27mm liver met

njknittle
Posts: 8
Joined: Thu Feb 06, 2020 1:09 am

Re: Hope vs reality

Postby njknittle » Wed Feb 19, 2020 9:15 am

ScaredButGottaWin wrote:I want to be hopeful. Very much so. It is what we are supposed to do. At the same time, I know based on what doctors tell me and what I can figure out online, is that I don't have a lot of time left (maybe a year). How the f#@k are you supposed to live like this?!?! I want to be hopeful, but that is hard in light of the circumstances. Quite simply, my question to the group is how you keep your shit together while knowing what the road ahead looks like?


My grandfather was given mere weeks to live. I think 6. Although it wasn't colon cancer it was bone cancer, he still managed to fight for almost 7 years. The doctors don't know everything and I think usually the numbers they throw at you are worst case arbitrary numbers. Stress is fuel for cancer so just keep pushing. Don't give up.

WarriorSpouse
Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

Re: Hope vs reality

Postby WarriorSpouse » Wed Feb 19, 2020 2:07 pm

At the time of my wife's diagnosis, she was given a 12% chance of survival... Many with her condition passed within 6 months to a year. At that point I began to advocate the 50% rule to put statistics in her favor. The treatments will either prolong life or they won't (50/50); and the next surgery will work or it won't (50/50)... In doing so, she made an affirmative commitment to keep trying and surviving rather than waiting passively for the end.

I am just speaking from our experience, but the battle is worth fighting. She is heading toward her 6th year of survival. All the best in your current approach to fighting this difficult battle. You are in our thoughts.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hope vs reality

Postby Lee » Wed Feb 19, 2020 2:21 pm

So very sorry for what you are going through.

This is a thread from a guy many of us loved who past away a few years ago. He was only given a few months to live, butt managed to live beyond 5 years. He made the most of the time he had. Maybe you can find some inspiration in it.

viewtopic.php?f=1&t=50374&hilit=frenchie

Good luck,

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!


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