It came to me this afternoon....I hate

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Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

It came to me this afternoon....I hate

Postby Regan » Tue Sep 23, 2014 7:35 pm

I'm not a victim.
I am a caregiver to DH of 39 plus years.
I cling to this board. I run away from this board.
I laugh at posts
I cry at posts
I sob with losses
I try to make sense of the purpose of going thru hell of getting a few more months--for the kids? For the spouses? For the SO's?....etc

I asked for help...I got it ...don't know how hubby could stand it if it weren't for people here, especially TammyLayne for the one issue.

I hate this board
I want Jeanette to answer Kenny's post "you're gonna love me now"--it would have been epic.
I want Marco to help get Katie thru her next treatment....not be unable to reach her.
I want Gwen to post pictures of the princess
I want Ashlee's thread to have her still writing in it with becmac
I want tom's recipes and food pics
I want tuscondad's daughter to miraculously be ok
I want skypuppy, Bev, Pog, NWgirl, Pollo, ski fletch, KennyT-twisted, singing holly, voxx, and all you other great people to have never had a reason to meet/suffer.

I had a clear thought this afternoon--while "living life like we were just like everybody around us that never thinks of suffering/death that will most probably come--this year, next or 4, 5......."

Even in NED status....it's there...
Tied to tracks....waiting/wondering if/when the suffer train is going to start its engines again and drag him thru pain, sickness, fatigue, sores, cramps, surgeries and then most probably finish him ...trying to grab "life" in between.

Hate the knowing-- non-touched people just live, just worry about trivial things that eventually mean nothing, like we used to do.

Hate the not knowing-- want to know the continuing sagas of the posters here and how they fight, learn and support.
Hate hate hate hate hate--I have to calm the hate...it will swallow me. Then who would hold his hand

Hate waiting for the train.
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: It came to me this afternoon....I hate

Postby Danieljt » Tue Sep 23, 2014 7:47 pm

I fell so strongly about the words you posted. But if hubby n I don't try my family will be devastated. We really want to this Our Way and it might just come to that sooner than later. Please hang in there Kenny! We will all no when enough is enough! I'm not really religious but my friend says god doesn't punish. But how does he explain my hubby and I both being diagnosed within weeks?
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

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

Re: It came to me this afternoon....I hate

Postby canadiandaughter » Tue Sep 23, 2014 9:04 pm

I havent been here long but I get the hate this board but yet come running. Im scared every time I log in that we will see bad news, but I am constantly seeking answers and what good news I can find. I think we all just really HATE cancer!!!
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

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: It came to me this afternoon....I hate

Postby skypup » Tue Sep 23, 2014 9:31 pm

Regan, that was so beautiful, powerful, strong... I don't have words except thank you!

To badly paraphrase Brownbagger: imagine if there were a wonderful community of people who never met and let's call it the internet... oh, yea, this is it!

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: It came to me this afternoon....I hate

Postby singingholly » Wed Sep 24, 2014 4:13 am

Darling Regan, try to leave your hate in your magical strong words, they can tie it down when you need it. And try not to think about tomorrow at all, tomorrow is just an illusion, for everybody, healty or sick... we only have present time to live, with its sorrow and joy. Each moment is a precious opportunity that will never come back again, for nobody... If right now, today, you have a reason for smiling, or laughing, or enjoying something, or filling your heart with love, this one you are living is a beautiful life.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: It came to me this afternoon....I hate

Postby singingholly » Wed Sep 24, 2014 4:33 am

PS
Don't waste your time in waiting a train that may never arrive, or at least nobody knows when... Don't waste your precious time and energy. Just chose not to do it. Don't sit at that symbolic station, just have a walk in the beautiful town around instead, there is a lot to do: a lot of work and a lot of fun. Never sit and wait.
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: It came to me this afternoon....I hate

Postby pollo65 » Wed Sep 24, 2014 3:23 pm

Regan,
That was so beautiful so profound and each of us can relate to some or all of your words. I do at times hate coming here, I have had so many friends taken away but I also have learned to laugh about our/my plight here. And I have learned to love even knowing that that love may be very short lived.
Thank you for this honest and profound post.
Pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

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

Re: It came to me this afternoon....I hate

Postby Bev G » Thu Sep 25, 2014 10:54 pm

Regan,

What a breath-taking and a beautiful post. I feel more and more often that I just have nothing left to say. Rung dry by all the grief. I won't ever stop coming here, I suppose, but over the years the sorrow becomes a greater and greater weight. Thank you for what you wrote. You have a beautiful, compassionate and understanding heart.

Love,

Bev
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

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: It came to me this afternoon....I hate

Postby Regan » Thu Apr 16, 2015 8:24 am

pollo65 wrote:Regan,
That was so beautiful so profound and each of us can relate to some or all of your words. I do at times hate coming here, I have had so many friends taken away but I also have learned to laugh about our/my plight here. And I have learned to love even knowing that that love may be very short lived.
Thank you for this honest and profound post.
Pollo 65


Sweet Pollo, you are/have been a light for many of us here. I am sick for your latest posts/news. Regan (Theresa)
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

wandalein
Posts: 93
Joined: Thu Nov 07, 2013 6:24 pm
Facebook Username: Wanda Leinweber

Re: It came to me this afternoon....I hate

Postby wandalein » Thu Apr 16, 2015 10:09 am

Regan I really hear what you are saying. I remember when we were naive like all those people around us before we were blindsided. I really miss those days. I don't know what today brings, we get the results of my husband's CT scan from last Friday. I keep thinking that since we have not heard from the surgeon it must be good. Ironic that you ended it about the train. I was just telling my husband last evening - And Thanks to the Calgary Flames, a much needed distraction from today - For the past 3 years I have been having dreams of being at a train station, standing on the platform and waiting. Not a familiar train station more like one I have never seen before. I should consult the Oracle on that one.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: It came to me this afternoon....I hate

Postby Regan » Thu Jun 30, 2016 6:03 am

singingholly wrote:PS
Don't waste your time in waiting a train that may never arrive, or at least nobody knows when... Don't waste your precious time and energy. Just chose not to do it. Don't sit at that symbolic station, just have a walk in the beautiful town around instead, there is a lot to do: a lot of work and a lot of fun. Never sit and wait.

H
I so miss the wonderful people we have lost that responded to my thread.

My sweet sweet Holly, I tried to take your advice. DH still in the battle and we have had months that were not projected to be.

But today, our beloved oncologist said "yes" immediately when I asked if it is time to consider hospice. The suffer train has been speeding up for months...

And sweet Gwen.....I so remember when she just wanted to be here long enough to see her princess......we have found ourselves in the same situation. Our first grand baby due in November....DH will be (would be?) the most perfect papaw.

Skypuppy...still can't believe you are gone...pollo, raym, pog, voxx, NWGirl... On and onI thank you all for helping me thru this, I'm so grateful when I see Bev and Tammy post....

Wishing suffer train stops for all.
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: It came to me this afternoon....I hate

Postby Annemiek » Thu Jun 30, 2016 9:14 am

I hate that you have to bring up this topic again. I hate that you had to ask and the onc said yes.
But I love that in this difficult time you still find the time to think about all those people that have come and gone here and give others hope it will just take a little more time, to see a grandchild or an aniversary.

Wishing you bucketloads of strength for you and your family the coming time.

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: It came to me this afternoon....I hate--SAD UPDATE

Postby Regan » Sun Aug 14, 2016 7:40 pm

The suffer train finally won on the 10th.
He gave it all he had.
I was fortunate enough to be in bed with him and hold him while he quietly took his last breath.
Most of you don't know me but I follow you...thinking of all of you
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: It came to me this afternoon....I hate--SAD UPDATE

Postby Lee » Sun Aug 14, 2016 7:53 pm

Regan wrote:The suffer train finally won on the 10th.
He gave it all he had.
I was fortunate enough to be in bed with him and hold him while he quietly took his last breath.
Most of you don't know me but I follow you...thinking of all of you


I am so sorry for your loss. I pray in the days ahead you find love and peace in the love you had for each other.

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 - 16 years and counting!

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

Re: It came to me this afternoon....I hate

Postby midlifemom » Sun Aug 14, 2016 8:03 pm

Regan, sorry to hear of your loss.

I'm not good with words, but somehow i don't believe the "suffer train won".
You assuredly have so many wonderful memories - how could that be a loss?
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?


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