How to Cope?

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Joanne 814
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Location: Farmington, CT

How to Cope?

Postby Joanne 814 » Mon Jun 08, 2009 2:40 pm

Hey Guys,

I've had it. I cannot fathom all this saddness, and am not sure what to do about it. I miss all our fallen friends, and with all this death around us, I am having a hard time. I am sure we all are, but it is really taking a toll on me. It seems to be effecting everything I do. Not to mention I have lost faith in my own health (if that makes sense).

I love this forum, more than that, I have bonded with many people on here, and as I sit here with tears running down my face, I am not sure I have anything else to give. I know this is the reality of the disease, but its too much. And why why why all of these deaths are here in the US. With a worldwide listserve, its shocking to me all these deaths are here.

So many fighters, so many losses. How do we ever know? How do you just "keep on truckin"? I joined the forum only a year ago, and this may be how it is, and I am only just learning, but I do not recall that many deaths as in 2009.

I am sorry to take the forum's time with my whining, but this is becoming all too overwhelming, and I am wondering if I am feeling alone. I think I need a LARGE cocktail to accompany my tears!!! :(


ONWARD...doubtful it seems, but trying to get past it.

Joanne
Age: 51
Dx: Nov 07 @ age 43
Stage IIIC, RCa
Colon Resection: Nov 07, 4 of 27 LN
Chemo/Radiation: 28 treatments w/constant 5FU (Jan-Feb 08)
Chemo: Folfox, 12 cycles (Mar-Aug 08) DONE 8-8-08
CT Scan 1-09 NED

Guest1
Posts: 131
Joined: Wed May 13, 2009 10:12 am

Re: How to Cope?

Postby Guest1 » Mon Jun 08, 2009 2:49 pm

My advice (for what it's worth) is to take a break from this place. I don't even have colon cancer (my father does) and this board overwhelms me at times. No offense to those who are NED (including you), but the vast majority of postings contain bad, worse or the worst news. Go outside and enjoy the summer weather. Read (or reread) a great book. Rent a movie or see a play. Revel in everything that LIFE has to offer. There will be plenty of time for death when you are dead, which my sincerest hope for everyone on this board is many, many years away.

helen098
Posts: 2009
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

Re: How to Cope?

Postby helen098 » Mon Jun 08, 2009 3:40 pm

take a break from the club and come back fresh
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

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justsing
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Location: Pittsburgh, PA
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Re: How to Cope?

Postby justsing » Mon Jun 08, 2009 4:26 pm

I know EXACTLY how you feel. It seems like a huge percentage of the folks that I "grew up" with on here are moving on, and not in a good way!

On the one hand, it renews my commitment to making the most of whatever time I have, and on the other hand it's a VERY real reminder of how little time that may actually be!

I love when I get emails from my perfectly healthy friends and students with little quotes after their signatures saying things like "tomorrow is not promised." It makes me want to shout -- "What do YOU know about that! I'll give you 'tomorrow is not promised!'" But I don't. I just go out and play tennis, or read a book on my tire swing with a big huge iced coffee.

In the immortal words of Mame: "LIVE!!!! LIfe is a banquet and most poor suckers are starving to death!"
justsing, 46
Stage IV
colon resection 12/07
Liver resection 04/08
Phase I vaccine trial
liver, lung LN mets
tried Oxi, Iri and Avastin
now trying new chemo combos then sir spheres
College prof in theatre & voice
2 girls 18 & 14, one son 10

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wamo
Posts: 386
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Location: Fullerton, California
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Re: How to Cope?

Postby wamo » Mon Jun 08, 2009 5:06 pm

I have had to take a small break as well.... I haven't been able to handle my own loss as well as all of the other losses this year as gracefully as I thought I could. I do still pop in every now and then and read the "top ten" posts but my heart starts to ache (and sometimes is pleasantly surprised and cheering you on when NED) so I have to close it and go somewhere else on the computer.

I do plan to be back trying offer help to those with questions, but for me....right now.... I had to take a break. Only you can know when you need to.

Wendy
Hubby-9-05 IIIC Rectal 4/11nodes 40yrs*1-06 LAR FOLFOX *6-07 Mets Lungs-FOLFIRI,Erbitux,Avastin *5-08 Skull met *9-08 ClinTrial EPO906+Celebrex *mets liver,kidneys,adrenal gld *WBRT brain mets *1-09 Gemzar/Xeloda ***2-25-09 Paul entered Heaven's gates.

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

Re: How to Cope?

Postby jdepp » Mon Jun 08, 2009 5:07 pm

Here's a view from Emily Dickinson:

Did life's penurious length
Italicize its sweetness,
The men that daily live
Would stand so deep in joy
That it would clog the cogs
Of that revolving reason
Whose esoteric belt
Protects our sanity. (Franklin poem #1751)

Paraphrase, brief & prosaic:

If it were true that the shortness of our life were enough to intensify its sweetness, if we could realize, every minute of every day, how short life is, then the vast majority of us who live out our time in routines would be so overwhelmed by joy that it would break apart the machinery of our minds and expose us to a kind of insanity. That might be desirable, liberating, frightening, and threatening all at once. It might be sublime, in other words, rather than beautiful.

The odd thing for the speaker of this poem is that for the most part this doesn't happen. It is easy and reasonable for us to know and say that life's length is "penurious," but difficult and maybe even dangerous to act on that, to turn it into a mode of thinking and being.

For better or worse, those of us on the colon club are both blessed and burdened with an awareness of the penury of life. Let's always remember to italicize its sweetness.
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

DeeDee
Posts: 235
Joined: Sat Jul 28, 2007 9:31 am
Location: St. Louis

Re: How to Cope?

Postby DeeDee » Mon Jun 08, 2009 5:09 pm

I struggled with the same thing. I wanted to stay connected with the friends I had made on the board but the bad news was getting to me. I took a break for a while and focused on living. I also took that time to think about how I could deal with the bad news because it was always going to be there. For me, I channel all that sadness into a passion for education and outreach about crc. It is part of what motivates me to be active in CRC fund raising and outreach.
Hugs,

Dee
Stage 2 Rectal Cancer
Tomo Radiation and resection 12/06
Folfox stopped after 3 due to toxicity
Ileostomy reversal 04/07
NED

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Terry
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Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: How to Cope?

Postby Terry » Mon Jun 08, 2009 5:09 pm

I agree with everyone else on here. Take a break for a while. I try and not go on here on the weekends, although I did this last one. But there are days where I just have to stay away. When there's news like we got about KLRYDER it makes me sad and think maybe I don't have a chance to survive. TAke a week off and see how you feel then. I feel your pain and sadness.

I hope you feel better. Is it sunny by you? If so go do something outside.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

gofisch
Posts: 562
Joined: Mon Apr 07, 2008 9:06 pm
Location: Minnesota

Re: How to Cope?

Postby gofisch » Mon Jun 08, 2009 7:35 pm

I could have written your post after Pam died. And I took a break, I don't remember how long, maybe a month even, and it helped a lot. We'll miss you, touch base so we don't worry, but stay the heck away for a while!!!!
Frances
47, Mom
Rectal tumor (stage III) 1/31/08
6 weeks radiation/5Fu
LAR w/ loop ileo May/08
Folfox 7/08-1/09
Done with chemo 1/2/09!!!
Reversal 10/8/09, ileus, blockage, resection, home after 30 days!
4 years NED!

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wwroam
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Re: How to Cope?

Postby wwroam » Mon Jun 08, 2009 8:22 pm

"Not to mention I have lost faith in my own health "..I know how that feels.
This morning I had a crown prep at the dentists, this afternoon 2 carcinomas to be removed at my dermatologists,next Monday cataract surgey and next Friday back to my CR Surgeon for a quick looksee. I feel I'm falling apart. Fortunately for me its all fine on the colon cancer front.
As others have said, take a break. It can all get a bit too much and it's so easy to lose sight of the positives.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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Gaelen
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Re: How to Cope?

Postby Gaelen » Mon Jun 08, 2009 11:31 pm

Joanne--I'm going to go in a different direction.
Don't take a break. Stay here, and face what you're feeling. Discuss it. And show other people what that feeling is going to feel like, because everyone here is going to have to deal with it sooner or later. And it's a lot easier to deal with these feelings as part of a community than it is to deal with it on your own.

The feelings you describe are something a recurrent cancer survivors support group in which I participate has discussed a lot. A couple of us are currently stable or even NED. A couple of us are far from stable or NED. When someone doesn't show up, too often the news is that they're hospitalized, or in hospice. Yeah--we talk about when and how to bring in hospice. Because some of us need that discussion--either because it's a real-time critical situation, or because while we're not there yet, we want to know how to do it, what to expect. Coming to group every other week puts those of us who are in a healthier place face-to-face with people who are...not. It's not a comfortable place to be. We are all some variation of Stage IV. We have different cancers, different challenges, different levels of physical debilitation, but we have no illusions--illusions don't survive in a recurrent cancer support group for very long. We just celebrated one group member's 80th birthday...and reminded her that she can stop her new chemo if it makes her too ill to feel like a part of her own life. And we just all signed a card for a member who has entered hospice.

To be honest, some weeks I don't go. The other currently NED survivor (who looks like a picture of health compared to me, IMO) took an extended break about two months ago--but lately he's been back. Both of us discovered something in our time away from the group which we shared with the group, because it was an important realization for each of us.

We've both discovered that no matter whether we go to group or stay away, we cannot keep cancer and cancer survivor support out of our lives. We are known survivors. That means that even though we don't (on purpose) put ourselves in a support situation, support situations find us--and then we have to handle them without the people who emotionally and mentally support US. We get the family, friend, co-worker and friend of a friend phone calls at all hours from the newly diagnosed, or the survivors whose lives are suddenly turned upside down by recurrence. We are their first-line resources, the people they turn to with questions because they know we've been there and they hope we can help with what they're feeling. We're not logging in to offer this support, or engaged in a face-to-face mentor program. These people are coming to us. We can't turn them away; we know firsthand how important patient support is. But even when we choose to take a break from organized support, that sudden need support finds us.

I'm a CCA buddy. I took a break (about a month) last summer after losing the 4th stage IV buddy in two years. Did cancer patients take a break from seeking me out? Not at all. CCA respected my request and didn't ask me to buddy anyone during that time--but two co-workers were dx'd with advanced breast cancer, a third had a mother dx'd with colon cancer, a 4th lost her father-in-law to lung cancer. I was on a break...and I was doing more face-to-face support than ever. Sometimes it just never lets up.

Yes, it's gut wrenching to read bad news on a computer screen. And you can turn the screen off.
But once you've become 'the cancer survivor' for your own community of family, friends, and co-workers (and sooner or later, you will become that in your circle of family/friends) then cancer can wrench your gut every time you answer your cell phone, open your office door, go down to the coffee machine, go to the gym, take a dog training class. Public cancer survivors really never know when or how a cancer patient who needs the support of an experienced survivor will find us. But they *always* find us. We may try to move away from the face of cancer for awhile--but the face of cancer keeps entering our lives.

The difference between getting gut-wrenching news from someone sobbing in your office and getting it from within a support community is that there's shared strength in a support group (face-to-face or online) which can help everyone get through the difficult news/times. When you're 'the cancer survivor' for the people in your real life, there's no one to fall back on except yourself. And that can take an even bigger toll if you have no understanding support community supporting YOU.

That doesn't mean you should ignore the opportunities to enjoy the life you have, wherever you are.
It does mean that even when you think you're taking a break from cancer discussions, cancer discussions have a mind of their own, and they'll find you. So you need to do whatever will help you with that kind of support.

So my NED support group friend and I go to recurrent survivor group meetings--even though we're not actively in treatment. We discuss our issues, too--with others who get what it's like to need to discuss difficult subjects when there's no one around who understands. They remind us that the same perspective others are seeking is what can sustain us. And they remind us that while everyone's situation seems like the end of the world to the individual, there is always someone else in a worse situation. We (and the others in that support group) recognized together that no difficult subject is too taboo--whether it's about how to die of cancer or how to live with it.

Your mileage may vary...but give some thought to the reality that as a survivor, you need support, too.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

shmurciakova
Posts: 782
Joined: Wed Nov 08, 2006 6:25 pm
Location: Sugar Grove, VA

Re: How to Cope?

Postby shmurciakova » Tue Jun 09, 2009 1:54 pm

Hi Joanne,
I was diagnosed in 2002. Obviously there are a number of people that I "knew" here on this and other forums who have passed away since then. Sometimes when I feel overwhelmed I just choose not to read certain posts. I knew before opening the post about Kelly what it would say. There have been other people even younger than me before her that have lost this "fight" as well.....After a while I guess you just realize from reading these posts how lucky you have been. There really doesn't seem to be any rhyme or reason to who survives and who does not. So far as I can tell anyway...
If you feel that you need to stop coming on the forum for a while, do it. Sometimes I wonder why I still look at these forums after 7 years. I wonder if I will still look after I have passed the five year mark? I probably will. I think it is helpful for those of us that are NED to continue to post and support those who come after us. I agree w/ Gaelen. Every time I have taken a break from the forums I always get pulled back in when someone e-mails me. A person wanting to know about lung mets, or a newly diganosed person who takes strength from reading my story. I know that I have been very fortunate and I try not to take one day for granted (although I know I do sometimes).
No matter what, this is now a part of your story. I don't know if there is really any way to get around that. Although, I do not put myself out there as much as Gaelen. For example, there are people at work that have no idea what I have been through and I like it that way. I mean, they don't see me as a "cancer survivor". They are clueless.
On the other hand people who do know say to me "you are such a strong woman, blah, blah" and I am just like, not really. We cope because we have no choice.
You don't need to feel guilty about it. Clearly there is more that you were meant to do.
I don't know if my ramblings have helped you or not. Just be very, very grateful for the place you are now and realize how fortunate you are!
Chin up!
Susan H.
diagnosed at 31 in 2002, Stage IV
Sigmoid colectomy - 6 mos 5-FU/Leukovorin
liver resection - 6 rounds XELIRI (xeloda/irinotecan)
lung wedge resection Oct. 2004 - no chemo
NED!!


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