To share my “ghost” story

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Basil
Posts: 252
Joined: Thu Mar 16, 2017 12:33 pm

To share my “ghost” story

Postby Basil » Thu Nov 08, 2018 9:34 pm

I want to share a brief chapter of my cancer journey as it involves this website and I suspect others will experience the same thing. I found this place shortly after my stage 3 diagnosis early last year and it gave me a ton of support and information. I kind of re-discovered (even though I was here on a daily basis) this place during treatment when I’d dr. Google things relevant to my situation and would find posts here from the past. Thing was, most of them were from 3, 4, 5 or more years ago. I’d read the threads but really find myself concentrating on the sig blocks from way back when. Saw a lot of them similar to me but who had dropped off the radar with little fanfare. It took a while but I figured out that most all of them had rolled with the odds and survived and moved on.

I loved reading those old posts and seeing that the posters had later dropped off the radar. I thought of them as ghosts. I don’t remember if I ultimately made a post about being a ghost, which is what I wanted and aspired to be. And to some degree I now am. I know I’m in the sweet spot for recurrence but cancer is almost all gone from my day-to-day life. Maybe it’s selfish but I don’t check in here much. I don’t feel guilty about it and, frankly, I hope you all fade away one day.

In short, fuck cancer.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

User avatar
horizon
Posts: 1481
Joined: Tue Apr 12, 2011 10:10 pm

Re: To share my “ghost” story

Postby horizon » Thu Nov 08, 2018 11:45 pm

You're not being selfish at all. Some people fade away, some keep posting regularly, and some (like me) are a mixture of both.

I'm glad things are still going well for you my dude!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

Punky44
Posts: 79
Joined: Mon Oct 01, 2018 4:29 pm

Re: To share my “ghost” story

Postby Punky44 » Fri Nov 09, 2018 12:04 am

It is awesome to be able to fade away because cancer is in the rear view mirror! I hope this for all of us, although I do really like how many long-time NED survivors are ever-present to chime in with their positive stories and words of encouragement.

I would like to think one day I will be able to check in from time to time and share advice and hope but then be able to close out the browser for a bit, vs my constant presence here now :oops:
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—1 down, 7 to go!

Maelleous
Posts: 112
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: To share my “ghost” story

Postby Maelleous » Fri Nov 09, 2018 3:27 pm

Funny... until I recently had a problem to ask a question, I have been the same way. I have an appt with my colorectal surgeon to take a look at my bum since I have had some pains recently. Though the more I think about it, those pains have been there since a long time ago, just were frequent lately, nerve pains. I'm also in that sweet spot for reoccurance and just was scanned 2.5 months ago so not as worried as I usually would be. In march at my 6 month scans I will be super nervous again.

It is like living 6 months at a time, you know that if you make it 6 more months, your chances for a long happy life are higher and higher but you dread every six months.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: To share my “ghost” story

Postby susie0915 » Fri Nov 09, 2018 7:30 pm

Those six months scans and check ups are bitter sweet. You want to go and confirm everything is fine and you are still NED, but at the same time you are anxious because it's time to go and get checked to see if you are still NED. I go next week to see oncologist. I am 3 years from resection when I was considered NED. I had a scan in May 3 years from diagnosis and I'm not sure if she'll order another next week or wait until May next year. We will see next week, she'll definitely order CEA but not really a marker. Good luck and best wishes to all that have follow up appointments coming up.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Basil
Posts: 252
Joined: Thu Mar 16, 2017 12:33 pm

Re: To share my “ghost” story

Postby Basil » Fri Nov 09, 2018 11:06 pm

Maelleous wrote:Funny... until I recently had a problem to ask a question, I have been the same way. I have an appt with my colorectal surgeon to take a look at my bum since I have had some pains recently. Though the more I think about it, those pains have been there since a long time ago, just were frequent lately, nerve pains. I'm also in that sweet spot for reoccurance and just was scanned 2.5 months ago so not as worried as I usually would be. In march at my 6 month scans I will be super nervous again.

It is like living 6 months at a time, you know that if you make it 6 more months, your chances for a long happy life are higher and higher but you dread every six months.


Yup, at this point I’m fine until 2-3 weeks before scantime. Then the anxiety kicks in and starts increasing daily. I don’t think there’s any of us stage 3 guys who don’t feel the same thing. But I’ll take it. Happy to take it in fact.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

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CRguy
Posts: 9638
Joined: Sun Feb 10, 2008 6:00 pm

Re: To share my “ghost” story

Postby CRguy » Sat Nov 10, 2018 11:02 pm

Basil wrote:Yup, at this point I’m fine until 2-3 weeks before scantime. Then the anxiety kicks in and starts increasing daily. I don’t think there’s any of us stage 3 guys who don’t feel the same thing. But I’ll take it. Happy to take it in fact.

Interesting discussion buddy
NOT Stage III anymore, BUTT ... with a recent " WTF is that " on chest imaging ....
just gotta say I really can't get too messed up until I KNOW wazzup
BTDT a few times

I know I could worry my ass of about "what IF ????? :shock: "

OR I could live my life with ... what IS ... here ... now

if I let every little glitch mess me up for the past 11-12 years
I would have had NO life despite still being alive

the GHOST thing ....
WE here, have an incredible resource of ALL who have been here
whether or not they are still here comes down to two things ;
- they have passed and cannot be here
- they survived and choose not to be here

Life IS what it is
I accept and respect what that may be for us, and them, and future members

Thanks for coming back, even as a "ghost" :shock:

WE are all one here
past, present, future

to still be here to contribute, means you pay it forward

WORD !

Harmony on the journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3155
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: To share my “ghost” story

Postby DarknessEmbraced » Sun Nov 11, 2018 10:48 am

I am one of the "ghosts" who only checks in every so often. I try to check in at least once a week on weekends. Sometimes more often if I am dealing with something concerning. I have been NED since my colon resection in 2014. I had rectal bleeding and horrible abdominal pain at the end of July and in October. I see the GI on the 21st and hope to get him to do a colonoscopy. My scans are late this year and aren't until December 12th.
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

Basil
Posts: 252
Joined: Thu Mar 16, 2017 12:33 pm

Re: To share my “ghost” story

Postby Basil » Mon Nov 12, 2018 8:23 pm

Good luck fellow ghost-want-to-be.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear


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