SO .. what happens ?

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KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: SO .. what happens ?

Postby KWT » Tue Oct 27, 2015 12:20 pm

We just lost another last week. Richard, 792 views and less than twenty replies. You'll have that beat by noon today. that's what happens.

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

Re: SO .. what happens ?

Postby midlifemom » Tue Oct 27, 2015 12:26 pm

JudeD59 wrote: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


Judy,
I agree - I have felt closest with those who shared off topic convos - such as the chocolate syrup recipe from Voxx.
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?

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

Re: SO .. what happens ?

Postby JudeD59 » Tue Oct 27, 2015 12:56 pm

KWT wrote:We just lost another last week. Richard, 792 views and less than twenty replies. You'll have that beat by noon today. that's what happens.


It's not always easy to know what to say, Kenny. I am one of the views and I was very sorry to hear of Richard's passing, but after twenty people have said, "My sympathies to his family and friends," should we keep posting the same? I'm asking seriously here. If you have a specific memory or favorite story about the person who passed, I think it's wonderful to share it, but if you don't, it's hard to know what to post. What would you have liked to have seen on Richard's thread? What would honor him in the best way?

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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OneFoot
Posts: 28
Joined: Fri Sep 11, 2015 7:29 am

Re: SO .. what happens ?

Postby OneFoot » Tue Oct 27, 2015 1:29 pm

I really really appreciate you all, I have learnt so much from the old-timers by just reading through old threads. Learnt stuff, and also got a feeling that I (dare I say) "know" some of you, starting reading through at the back and following stuff, has me sad with losses and laughing (with my incisions hurting).

Thank you for being around!
Nicci, F, dx age 46
One Foot in Front of the Other
IIIB RectoSigmoid cancer, 09/2015
XELOX 11/2015
T3N1bM0? 3/25ln, kidney status suspicious
perineural and lymphatic invasions

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: SO .. what happens ?

Postby dianetavegia » Tue Oct 27, 2015 2:13 pm

In between tests, I want to forget about cancer and even forget all I've gone through but I'll feel guilty and check to see if there's a question I can answer. Invariably, someone will either have mentioned an old friend or brought up an old post and the pain is so intense. I came across Kimby last week on a long dead thread while looking for a post for a newbie. Gosh that just tore me up. She and I had become very close and that reminded me of calling another friend in the hospital and how great she sounded and she was heading home but died that night! Her husband had a new girlfriend on his Facebook page not 2 weeks later. That sort of stuff just breaks my heart.

So........ How about those Cubs? Almost made it!
Do you think Glenn is dead? I don't. I think Heath went back and somehow saved him. Someone saved him for sure.

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: SO .. what happens ?

Postby KWT » Tue Oct 27, 2015 2:21 pm

JudeD59 wrote:
KWT wrote:We just lost another last week. Richard, 792 views and less than twenty replies. You'll have that beat by noon today. that's what happens.


It's not always easy to know what to say, Kenny. I am one of the views and I was very sorry to hear of Richard's passing, but after twenty people have said, "My sympathies to his family and friends," should we keep posting the same? I'm asking seriously here. If you have a specific memory or favorite story about the person who passed, I think it's wonderful to share it, but if you don't, it's hard to know what to post. What would you have liked to have seen on Richard's thread? What would honor him in the best way?

Judy


It was an observation. Carry on.

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: SO .. what happens ?

Postby NZJay » Tue Oct 27, 2015 2:24 pm

dianetavegia wrote:Do you think Glenn is dead? I don't. I think Heath went back and somehow saved him. Someone saved him for sure.

Diane


While I hope Glenn is dead, as his character bothers me, I VERY much doubt he will be. Far too important a character to dispatch in such an anti-climactic manner.

My guess - Glenn slips underneath the dumpster.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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

Re: SO .. what happens ?

Postby JudeD59 » Tue Oct 27, 2015 2:29 pm

KWT wrote:
JudeD59 wrote:
KWT wrote:We just lost another last week. Richard, 792 views and less than twenty replies. You'll have that beat by noon today. that's what happens.


It's not always easy to know what to say, Kenny. I am one of the views and I was very sorry to hear of Richard's passing, but after twenty people have said, "My sympathies to his family and friends," should we keep posting the same? I'm asking seriously here. If you have a specific memory or favorite story about the person who passed, I think it's wonderful to share it, but if you don't, it's hard to know what to post. What would you have liked to have seen on Richard's thread? What would honor him in the best way?

Judy


It was an observation. Carry on.


I know that and I wasn't being flippant or disrespectful. I was just wondering if there was something else to say, something else to do, when someone has been a member here and we lose them. I guess unless you have personal story to share, all you really can say is you're sorry and give your sympathies to the family.

Carrying on.

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

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: SO .. what happens ?

Postby Sams wife » Tue Oct 27, 2015 3:53 pm

Oops
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: SO .. what happens ?

Postby KWT » Tue Oct 27, 2015 4:14 pm

Really? were going to bump the thread up now? I'm so sorry I brought I up, so wrong. I wasn't trying to use this as a tool. But the fact that it's now being seen that way is just.... Well.... Pathetic. It was just something I always found odd, how quickly we sweep them under the rug. And I did say "we" I hate that I'm Becoming numb to all this. Instead of feeling sad I'm starting to feel envious that they no longer have to live this way.

I'm just more of a tough love kinda guy, while we're complaining daily about about our lives being disturbed by this disease while we're Ned, just remember some of us will never be given that opportunity, and many of you are just fuckin wasting it! :twisted:

That's all, it doesn't matter anyhow, we're all going to die, we're all going to be forgotten, and I'm having beer for dinner.

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: SO .. what happens ?

Postby Ron50 » Tue Oct 27, 2015 4:15 pm

I joined this board in Feb 2006. I have been on CSN since nov 2001. I have gone thru the cycle a few times . Do I stay or do I go. I know that the treatment I have had no longer bears the slightest comparison to what happens now. What I do know about is the long term problems of survival and how I have coped. I guess that if nothing else no one has asked me to leave either board no matter how p*****d they get with me. I am still fighting cancer just as hard as when I actively had it and some of the things I am fighting are just as life threatening. Ron. PS I have come to know some wonderful people on these boards. All of those wo went thru cancer with me ,with very few exceptions , are long gone but never forgotten.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: SO .. what happens ?

Postby canadiandaughter » Tue Oct 27, 2015 5:47 pm

I rarely come here anymore. Some of the last few battles kind of turned me off. Also, at this point in my dads treatments there is nothing to find out or nothing new to report so I have moved on to others areas of my life that need some work. The only reason I pop in once in awhile is to check some posters that I have become quite fond of. When things change for dad, I am sure I will be back asking questions and trying to learn again. I really do appreciate all of those with knowledge that keep checking in and helping those in need. Being a caregiver, I really do not have a lot to offer to the newbies. It is hard to write on posts for those that have passed when you know nothing about them. Just because a person doesnt post, doesn't mean that you do not care or that they/their families are not in your thoughts.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: SO .. what happens ?

Postby justin case » Tue Oct 27, 2015 5:55 pm

JudeD59 wrote: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

Good post Judy,
Bro Nut
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: SO .. what happens ?

Postby justin case » Tue Oct 27, 2015 6:39 pm

KWT wrote:We just lost another last week. Richard, 792 views and less than twenty replies. You'll have that beat by noon today. that's what happens.

On this point Kenny is correct. Many people look for other people who can share, in their sorrow, and neglect the needs of people looking for help. Treatments haven't changed that much in years. In my own case, I took a good vacation for the first time, after regaining some financial freedom, from doctor bills. I am currently working too much to post often, BUTT the last thing I want to see is, (I had this, and feel like crap, so , why are you annoying me (attitude from members).
Perhaps, when someone is new to the board, read between the lines, and be educated in your answer, as you should know this person, has been delivered a life sentence. (Or in complete shock)
New cancer patients, are looking for answers, please share your experiences, if you know their situation. My most critical admonishment is please don't say," Welcome to the board, no one want's to be on."
There are a lot of caring people here, who certainly helped me , when there was no one, I knew, who could understand what I was facing! We all should help new members, and remind them we are here to help, not push our beliefs, personal life's, or anything, that may cause additional stress, to someone , newly diagnosed.
Michael
Last edited by justin case on Tue Oct 27, 2015 8:47 pm, edited 2 times in total.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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

Re: SO .. what happens ?

Postby CRguy » Tue Oct 27, 2015 6:41 pm

WHOOAAHH .... where did this topic take a turn :?: :mrgreen: :mrgreen: :mrgreen:

Just me I know ... BUTT ... was just trying to discuss ..."US" as CRC folks as opposed to "issues" of CRC folks ....
the person INSIDE the disease .... NOT just the disease inside the person
Yeah Yeah just me I know :oops:

some good input here
gonna take a bit to read and reflect ...... BEFORE I hit return
yeah yeah ... THAT is a good plan !!!! :mrgreen: :mrgreen: :mrgreen:

Oh Oh wait for it ... it is ALSO a FULL MOON today ... so I just guess we gets whats we gets :shock:

Cheers all
CR
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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