SO .. what happens ?

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

SO .. what happens ?

Postby CRguy » Mon Oct 26, 2015 10:21 pm

SO .. what happens ?

when you have been here for others
and they have been here for you
but it just isn't enough anymore ?

time to pack it in ?
time to leave ?

folks here used to muse about those who would post huge " I am going to leave !!! " topics
Ummmmm.. OK just leave :shock:

.................. --->>>>> edit for clarity .... not going anywhere, just chattin' !!!!

I do know the sentiment though
MANY friends here ... then gone

any song, picture, discussion .....
for some of us old timers .. can bring back a flood of memories

SO .. what happens ?
we feel, we cry, we withdraw ....

we come back stronger to BE here
OR
we quietly recede into our own lives

NO wrong
NO right

Just how we need to deal with things

BUTT please Don't stop believin'

When Starbuck30 passed, her partner posted an epic tribute video, now lost on the 'net'o'sphere :twisted: which featured this song

Any time I ever felt like giving up or giving in .... I would play any version of THIS song and never stop believing
which is why I am still here to annoy you all ..... !

CRguy
On the JOURNEY !
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

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: SO .. what happens ?

Postby michelle c » Mon Oct 26, 2015 10:44 pm

Hi CR,

You seem to have read my thoughts.....I feel the same way.

Please don't leave though....especially without telling us, you and other old timers is what keeps me here. So sad that many of my friends here have passed on.....it's just not the same. I miss them very much. Although there are new people here, and no insult to them, it's just that I miss those people very much....they were my mates, my partners in crime, my support, my inspiration, my connection, etc.

What to do? Do I leave or stay or just quietly slink away....(is slink a word??)

Mmmmmm

You are very much the backbone and strength of the website....to me anyway....butt you have to do what's right for you....love you CR guy....❤️

Starbuck, what a special girl Liz, she made me laugh, she made me cry.....love her❤️
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Nik Colon

Re: SO .. what happens ?

Postby Nik Colon » Mon Oct 26, 2015 10:50 pm

Your not leaving, are you? :cry:

Nik Colon

Re: SO .. what happens ?

Postby Nik Colon » Mon Oct 26, 2015 11:46 pm

Image

Nik Colon

Re: SO .. what happens ?

Postby Nik Colon » Mon Oct 26, 2015 11:53 pm

Image

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: SO .. what happens ?

Postby Bev G » Mon Oct 26, 2015 11:58 pm

CR, I feel exactly as you do it seems...and Michelle too. Over the past year or so I feel our losses have reached critical mass. Each individually so important, butt considering the group of our family/friends we have lost has become overwhelming. I've been there before on this board, butt eventually sort of got my grounding back. It just doesn't seem to be happening anymore. I am numb. I try to care but often just don't so much. Each of our loved ones we've lost diminishes me--sometimes in different ways than others. I'm not leaving, or threatening to leave, I just wish I could be as "present" as I used to be. I have a boatload of medical issues going on, not directly related to cancer. I am so tired of it, exhausted with the system, falling apart. I miss our friends so much it's palpable, more intense because it's an empty palpable. Love you all old-timers.

And survival guilt is trying to do me in.
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

Nik Colon

Re: SO .. what happens ?

Postby Nik Colon » Tue Oct 27, 2015 12:11 am

I obviously have not been here as long, but I do feel the emptiness here, especially as of late. I too felt the want to leave at times, but as you can see, didnt. It seems so many that were here when I started less than a year ago are gone. Those I used to talk to and joke with, many gone in one way or another :(

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: SO .. what happens ?

Postby Cb75 » Tue Oct 27, 2015 12:50 am

<3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: SO .. what happens ?

Postby midlifemom » Tue Oct 27, 2015 6:22 am

Thanks crguy (and other old timers) for still being around to annoy us.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

User avatar
cnorton1960
Posts: 27
Joined: Tue Oct 28, 2008 8:12 am

Re: SO .. what happens ?

Postby cnorton1960 » Tue Oct 27, 2015 6:43 am

Nice post crguy! I very, very rarely post but have been here since 2008. I never skip over anything you write! Without knowing it, you and a few others have helped me through so many tough times! Thanks!
Last edited by cnorton1960 on Wed Oct 19, 2016 10:33 am, edited 1 time in total.
[i][color=#008000][size=85]Diagnosed 6/08
Rad/Chemo 06-09/2008
Surgery 11/08-Stage IIA
Temp Illeostomy-R/V fistula
Tried 5x to fix fistula
Ileostomy rev. 12/2010
2nd ileostomy rev. 12/2011
01/2013-Turnbull Cutait procedure-Healed!
3rd ileostomy rev. 04/18/2013-All is good!

TracieLynn
Posts: 46
Joined: Thu Mar 19, 2015 2:00 pm

Re: SO .. what happens ?

Postby TracieLynn » Tue Oct 27, 2015 8:48 am

To all of the Survivors, the Experts (science guys, life experience sharers, etc), Care Givers, the Ones Lost,
As a newbie this site was my lifeline to a group with real world and clinical information. It's not just about HOPE (I admit it's pure joy hearing from survivors) because I feel like we are in the trenches of a War. I'd never make it through this without the support from all of You. You who take the time to share your experience and expertise with us. Standing shoulder to shoulder in the wins and losses...
These posts all live as a tribute to the authors and as an inspiration to those who come after us. Thank you for keeping it alive. I'm believing !!!
43 yr old Wife to DH Stage IIIB w/one Tumor Deposit
1/17 lymph nodes
Low RC Dx 2.26.15 CEA 19.5
Xeloda and Radiation 3.24-5.1
May 2015 break for recover CEA 5.5
LAR June 2015 w/temp ileostomy CEA 3.3
Xelox Aug 2015 and switch To Northwestern
09/2015 blackout, blood clot, seven stitches, on blood thinners
CT scheduled for 12/8/15
Feb 2016 Met to liver. CEA at 3.1
Liver resection @NW 3/23/16
VATS for Lung 5/6/16
More spots popping up lungs
Folfiri+Avastin Started Sept 2016-current (April 2017)

ullefan
Posts: 28
Joined: Mon Apr 21, 2014 6:40 pm

Re: SO .. what happens ?

Postby ullefan » Tue Oct 27, 2015 9:35 am

This board can create a twisted sense of "survivor's guilt" in me.
DX 10/09 IIIb CRC 3/21 positive nodes
11/09-5/10 10rds. FOLFOX 4 rds. xeloda
5/11 NED
5/15 NED

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: SO .. what happens ?

Postby peanut_8 » Tue Oct 27, 2015 10:08 am

I think it's natural to feel overwhelmed, frustrated and have a general sense of loss of control, at times.

I've had this song running through my head for a few days. Can't get it to stop. Maybe I'll have to break down and watch Heavy Metal. Mr. Nut always enjoys that one. :shock:

https://www.youtube.com/watch?v=qa9zJBOqNhs

No one's going to give it away.
They make it hard for the people today.
To get what you want, you've got to do it yourself.
Don't be afraid to drive the nail in the wood.
Or drink the bottle if it tastes so good.
You'll go the distance. You never thought that you could.

Reach out and take it.
Reach out and ta-ta take it.
Reach out and take it.
Reach out and ta-ta-ta take it.
Reach out and take it, oh, yeah!

Cough up the cash when you go over and over.
Before the old one's gone, you've got a new owner.
You need assistance when your head's in the clouds.
You could live easy if life stood still.
You could be faking and breaking and taking it all.
But then you know you're gonna fall.

Reach out and take it.
Reach out and ta-ta take it.
Reach out and take it.
Reach out and ta-ta-ta take it.
Reach out and take it.

Don't have to take it so hard.
Don't have to take it so, so hard.
Don't have to take it so hard.
Don't have to take it so hard!

Reach out and take it.
Reach out and ta-ta take it.
Reach out and take it.
Reach out and ta-ta-ta take it.
Reach out and take it.

Reach out, reach out.
Take what you want.
Reach out, reach out.
Take what you want.

peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: SO .. what happens ?

Postby Maggie Nell » Tue Oct 27, 2015 10:27 am

Is it possible, for the long-timers, that this board doesn't feel the same because
of the existence of social media, such as twitter and Facebook? I'm old enough
to remember when video killed the radio star...
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: SO .. what happens ?

Postby JudeD59 » Tue Oct 27, 2015 11:31 am

I think the very nature of this board makes it difficult to be a long-term contributor. We are all like wounded animals, to one degree or another, and wounded animals can react in unpredictable ways. Some are grateful to be helped with their problems and pain while others lash out at anyone who gets too close because of their pain and desperation. Any message board will have it's ups and downs, but a message board filled with people who are sick, exhausted, frustrated, dealing with life and death issues, in pain, and often grieving is like a powder keg waiting for a spark. It's amazing how few skirmishes there are on here when you consider what we are dealing with and are dealing with to so many different degrees. Good news is important to be shared, but also carries guilt because others aren't receiving good news about their journey. Bad news is also important to share, but it's so painful to read it and feel so helpless to do anything to relieve the member's suffering.

I've only been here since April and have already been heartbroken to read about the passing of members whose posts I read and enjoyed and whose journey I witnessed for a short time. I can't begin to imagine what it's like for those who knew those members well and considered them friends. There are days when I open the main page and read just the thread titles and know I'm not in a good place to read the posts within the threads, so I click the page shut. I wait until I feel stronger emotionally and then come back and try to offer whatever I can in the way of support or advice or comfort. But it never feels like enough and I get frustrated that I can't do more to help.

I think those who have been here for years and have weathered the loss of so many good friends yet still open the page and try to help new members over and over again are heroes. I'm not sure where you find the strength or the kindness, but I'm so thankful that you do because your compassion, knowledge, and experience are priceless to the rest of us. I can understand wanting or needing to take a break from the board now and then, but I hope you'll always find your way back because we value all that you share plus we would miss knowing how you are doing and hearing your updates.

If the board feels empty in some way and you feel like you don't know members as well as you used to, one solution might be to have more off topic threads. It's a little hard to get to know someone and click with them when you are only answering medical questions, but you may find a connection with someone while discussing favorite TV shows, music, movies, food, recipes, whatever. As an added bonus, those threads will provide members with a pleasant distraction when the board is experiencing a lot of bad news threads. Just a suggestion.

Don't Stop Believin'

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4


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