Really hard topic

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Bev G
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Really hard topic

Postby Bev G » Sun Sep 28, 2014 3:09 pm

Hi Colon Talk pals,

With the experiences I suppose both Marco and Gwen are going through right now, and what so many of our beloveds have so recently gone through, I was wondering about something. We are all dying. It's just inevitable, though some sooner than later. Are you able to imagine what would make the process easiest for you as far as the involvement of your family and friends on the Colon Club?

I love that Marco wanted post cards. It is sort of a tangible way for us to show our love and support, and it sounds like it has comforted him a lot. When Ashlee/Judy was walking her final journey I called her virtually every day, and she was glad. A couple of days she wasn't much up for speaking but wanted me to talk to her. The last time we spoke she really couldn't speak much at all, so we cried together.

What are the things we can imagine that might help smooth the way a bit. Can we think ahead to designate someone to speak for us, like Alan's dear friend or Gwen's beloved sister. Sometimes I feel so out of place looking around and trying to find people, but the fact is that we ARE a community, a family or sorts, and when someone goes missing, given the tie that binds us, it is both scary and upsetting.

So, what do you guys think, or are you able to imagine, when it's time for your final walk? Alone, or with help, love and support? I am NOT trying to be upsetting or depressing in any way. I hope you will all understand that.

Love to all,

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

justin case
Posts: 4214
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Really hard topic

Postby justin case » Sun Sep 28, 2014 4:06 pm

I recently saw a child with what appeared to be a chemo pump, although I was discreet enough not to ask the parent involved. Seeing that child with the normal activities most of us can barely remember, the smiles, chasing after another child, from another family, who had no afflictions, almost makes me wonder why we don't enjoy every day, as much as that child who has no reason to question life, as much as we do.
Regards,
Michael
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

Ron50
Posts: 667
Joined: Fri Feb 10, 2006 7:04 pm

Re: Really hard topic

Postby Ron50 » Sun Sep 28, 2014 4:14 pm

Hi Bev,
I physically visited two of my friends the day they died. Both were named Tom. Old Tom had colon cancer and young Tom had double lung cancer. With old tom I must admit the visit was more for his dear wife Betty. She was a really lovely old lady, She and tom were both in their early eighties . He and I went thru the cancer treatment journey togeather. Of the two I was given the least chance of survival but every time I was clear he had a recurrence . Towards the end he became quite bitter and twisted but I still went to see him. I think that even with his attitude he was glad to see me. He died the morning after the last evening that I saw him. Betty rang me and I told her who to call and what to do. I called her family and got them to come up from another state then I went over and had a cuppa with her , she was very happy to have company and help. Tom had absolutely refused to go into hospice.
Young Tom was different. I had been taking him out fishing during his illness. He loved to fish .Most people with his level of disease rarely last more than eight months. He lived nearly three years with double lung cancer. I saw him the day before he died. He had said to me previously that although he was dying he still needed his friends and so many had stopped seeing him. The last time I saw him he could hardly even speak. He was allowed family only in to see him but they let me in. At the end of the visit we said goodbye and I knew I would not see him again. He had gone thru enough and he just wanted to go, We were not sad . Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Bev G
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Re: Really hard topic

Postby Bev G » Sun Sep 28, 2014 5:17 pm

Thank you Ron and Michael for your poignant stories and thoughts. I guess I was thinking of something a little different, and I wasn't clear. What would people want their CC friends to do? How would you want us "with" you? Do you imagine messages would be welcome of become a pressure, like an obligation to respond somehow. Would you be OK with saying "so and so will be responding for me from now on". Would you like people from here to call you perhaps? Postcards? :-) Would you want the pray-ers to pray for you? Would you like candles lit for you?

I know some members here might not feel "connected" enough to want anything. I know I would be very comforted to know that people are thinking of me, wishing me well, and praying for me if they are so inclined. I have connections here that ate very important to me, I would like to know I will be remembered until it's just no longer time to remember...

That's sort of what I meant.
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

justin case
Posts: 4214
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Really hard topic

Postby justin case » Sun Sep 28, 2014 5:24 pm

Rix in Phix said it most beautifully in a last minute PM. I'm going into hospice, please stick around and help who you can. Minutes later, on the forum, he posted he just dropped his phone in the pool, and his sister would update.
Michael
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

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Really hard topic

Postby Bev G » Sun Sep 28, 2014 5:29 pm

justin case wrote:Rix in Phix said it most beautifully in a last minute PM. I'm going into hospice, please stick around and help who you can. Minutes later, on the forum, he posted he just dropped his phone in the pool, and his sister would update.
Michael


Ahhh.....Thank you a hundred times, Michael, for reminding me of Rix. What an awesome, incredible man. And, I was nuts to suggest we ever forget any of our beloveds. Geez, I miss Rix.
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

janklo
Posts: 1565
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Really hard topic

Postby janklo » Sun Sep 28, 2014 5:47 pm

Not sure if this is what you are asking dear Bev. . But personally the messages I received here when Lauren was dying were a salvation to me. I know on here I can ALWAYS say what I think, what's actually going on and how I feel. You can't always to do that with family at a difficult time. It was so helpful for me to have this forum.

But yes everyone who is the cc patient should let a friend or someone know to post on Colon Club when they are unable at the end. Because people here can still provide support!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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

Re: Really hard topic

Postby Danieljt » Sun Sep 28, 2014 6:02 pm

My mother and my mother in law both died of cancer 6 months apart. It couldn't have been more different. I sat holding my mom hand for 4 days until she passed.people in and out of the house the hole time. The last day I wanted everyone gone except me and my sister. (Which she was drunk the whole time. It was like a social event. My sister n law n I stayed with my mother in law for 10 days before she passed. Everyone who wanted to say good bye did and it was so peaceful.
No matter how you want things it doesn't always happen that way. It gets beyond our control unless you designate someone to carry out your wishes. I no my family will have to be firm with my sister and keep her in control. Like that gonna happen. I also no know my husband couldn't handle me going first. Being he has cardiac issues he wants to go by heart attack which would not be so bad
It's so nice to write my thoughts while knowing my family won't read this.
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.

justin case
Posts: 4214
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Really hard topic

Postby justin case » Sun Sep 28, 2014 6:24 pm

Let me splain Lucy,
When I woke up in ICU after surgery, my first thought was get me out of here. If I ever go into hospice, my first thought is going to be, get me out of here. I doubt I will care who is thinking about me :roll:
Regards,
Michael
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

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: Really hard topic

Postby SMR » Sun Sep 28, 2014 6:30 pm

Rix was the first here to welcome me, and he ALWAYS had such wise words to share. I always felt a particular connection to him as besides his warm welcome, he also shared many commonalities with my DH. They both had peritoneal disease, both had Undiagnosed primary site, they even shared a name! In fact, DH and I had plans to go to PHX on a trip, and I had plans to meet Rix in person while we were there. As it turned out, DH had a recurrence and we had to cancel our trip for surgery. Rix passed away before I would have gotten there anyway, and as I later learned based on the words of his close friends here, Rix already knew his days were very numbered before we made our plans to meet, yet he made the plans. I think that he didn't want to scare me (as a relative newbie at the time) knowing how many similarities he and my husband shared.
Anyway, I know that this response had absolutely nothing to do with your question, but I think of RixinPhx so very often.
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

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Frenchie's Wife
Posts: 956
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: Really hard topic

Postby Frenchie's Wife » Sun Sep 28, 2014 6:39 pm

Bev,

I think it's a good idea. I just told my wife to update you guys if I start knocking on heaven's door.

Frenchie
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

WifeOfMike
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Location: San Diego, California

Re: Really hard topic

Postby WifeOfMike » Sun Sep 28, 2014 6:47 pm

I think they ties we build here, the friendships become so intertwined, the caring so deep- so real that when someone drops off the grid- we WONDER, we WORRY
We HOPE they are OK and just busy with LIFE, we also get fearful something Bad may have happened.

Sometimes we start looking for them.... Wondering Out LOUD on the board
We did that for Alan
We did that for Dianne
We did that for Gwen
I worry, that some... who are less chatty here may slip away silently and we will never know what happened
Did they become NED, and are busy Living- going back to the World BEFORE BIG C hit their lives?
We hope in our Heart of Hearts YES... Please Be TRUE

We also wonder if the opposite is true and it bothers us. Worrying about Family & Friends is Normal behavior
Unfortunately we also have the abnormal... BIG C hanging there as a common bond
That is where the Worry for our dear friends comes from.

I am the Caregiver, and odds are I will be here and posts throughout hubby's experience. Sadly IF it happens I am the one who leaves this world first....
Hubby will more than likely NOT be coming here to say what happened.
Now that you have brought this up, I will give my password to my sons....like insurance... I will be covered

As far as others here may be concerned.... I think it is just like everything else here
I think it depends on the person, I think it will change as easily as the direction of the wind- it will change with the blink of an eye
We have heard many friends expressing last journeys of their loved ones & in answering some, I hope I have helped them while their hearts were breaking, given them strength to endure the unthinkable
I am grateful for Gwen's sisters post, Alan's friends post, Marcos own brave posts, Chixter's post, Val & Kathleen, etc (Far too many & like a never-ending tidal-wave)
Although heartsick on the final posts- it eased my mind from worry about the unknown....
I knew these beautiful dear friends were in pain no more, and I hope my sincere condolences brought a smidgen of comfort to those left behind
I also find joy in sending Marco postcards to fulfill his wishes and thinking about the hundreds he now has- is truly heartwarming
It endures me to this Colon Cancer Family even more, to know we made someone happy by fulfilling his wish

Bev G » I know I would be very comforted to know that people are thinking of me, wishing me well, and praying for me if they are so inclined. I have connections here that ate very important to me, I would like to know I will be remembered until it's just no longer time to remember...


YEP..... I will be hunting for you....me and a zillion others

Best wishes to all,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

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raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: Really hard topic

Postby raym » Sun Sep 28, 2014 8:28 pm

I don't have any special plans or thoughts when that time comes. I just have a lot of information written down for my wife..various accounts and passwords, this site being one of them. I assume she will post updates if I am not able.
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

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

Re: Really hard topic

Postby skypup » Sun Sep 28, 2014 10:00 pm

I like holding place for people, like we are doing for Marco and Gwen--just checking in regularly to say we are thinking about them. I know that would mean the world to me, especially at the point I couldn't do much conversing myself anymore.

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Rob in PA
Posts: 1977
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Really hard topic

Postby Rob in PA » Sun Sep 28, 2014 10:16 pm

Hmm? What could cclubbers do for me?

Sneak a good IPA into hospice for me?

Other than that, I'll probably ask my wife to update you guys. Good point Ray, I'll have to write down my username and password for her.

Actually, now that i think about it...the fact that i would have friends from ALL over the world thinking of me, praying for me and putting well wishes into posts for my family to read to me when/if that time comes, that makes me feel pretty damn good!

Good post Bev!

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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