Now on Hospice-How to Live While Dying????

Please feel free to read, share your thoughts, your stories and connect with others!
Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Now on Hospice-How to Live While Dying????

Postby Ceebo » Sat Feb 20, 2016 5:31 am

Quick update that got us to this point: my DH had to have an ileostomy done on 1/25/16 due to a small bowel obstruction from the peritoneal mets. They also inserted a Gastric tube to use if needed. He's had problems with dehydration, he just can eat very small amounts and he's had a lot of abdominal pain. On 2/10/16 we decided to go on Hospice because he doesn't want more surgery and he is ready now for supportive care only.

My question is how do you get through this very sad time? I am having a hard time seeing him lose weight, get so weak, try to get comfortable, etc. He has always been so strong and has overcome so many challenges, but now he just doesn't want to fight. I support him totally, but it's hard to see him fail slowly, day by day. He doesn't like much company at all because of the weakness and discomfort, so I'm the one that's here 24x7. Our grown sons are here for a few days at a time, but they live out of state. I'm getting a bit stir crazy! I just am struggling seeing him wither away slowly. He is eating and drinking only small amounts now so I know he can't exist long on that! He is alert and oriented and is able to walk on his own right now.

Does anyone have any ideas to share on what you did to make it through this very difficult
time? --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

ilivebyfaith
Posts: 116
Joined: Mon Oct 27, 2014 8:18 am

Re: Now on Hospice-How to Live While Dying????

Postby ilivebyfaith » Sat Feb 20, 2016 1:11 pm

We're in a similar boat. Just heard that the 4cm tumor in my dh's liver have grown to 6cm in a span of 2 days, how was that possible! His liver is causing him all the discomfort, the tumor is preventing his liver to function well. Plus he cannot pass gas nor stool. He already have ngt to address the gas and we have drained 1.7liters of water from his tummy this afternoon. His tummy is swelling and it's because of the combination of gas, water and thickening of the peritoneal wall. Which embraces the intestines therefore, preventing the intestines to move and pressures his abdomen. He is on morphin though sometimes he can still feel pain.
It's so hard to witness him, I know what you're feeling. My husband is just 44yrs old, we have 2 young kids, 8 and 3. It's really hard. I think there's no shortcuts for this, we simply have to go thru with it.
Right now I'm savoring my husband, hugging him and kissing him and telling him that I love him.
I pray for your fortitude. My regards to your dh.
Carer to DH 42, DX MCRC IV mets liver,lungs 9/9/14;Wild type, KRAS/NRAS nonmutant; Folfox 3x Folfox+Vectibix 3x CTscan, liver mets gone, colon tumor 12 to 15cm, lung mets inc (31-R, 19-L); Change: FOLFIRI + erbitux 6x, colon and liver clear, progress in lungs. Change: folfirinox + Avastin 12x, lung metastasectomy, molecular profiling, folfiri + erbitux, progression, will be switched to stivarga PRAISE GOD FOR HIS FAITHFULNESS!

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

Re: Now on Hospice-How to Live While Dying????

Postby JudeD59 » Sat Feb 20, 2016 4:32 pm

I'm sorry I don't have any words of wisdom, just sad that you have to go through this. My favorite uncle was on hospice for three months before passing and I spent every afternoon sitting with him at my in-laws house. I know how exhausting and heartbreaking that was and he was only my uncle, not my husband, so I can't even imagine what you are going through. All I can do is send hugs your way and hope that you find the strength to get through this and peace when it is over. I'm truly sorry.

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

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

Re: Now on Hospice-How to Live While Dying????

Postby midlifemom » Sat Feb 20, 2016 5:54 pm

Cindie,
No advice, just sending well wishes that this time goes as best as possible.
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?

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: Now on Hospice-How to Live While Dying????

Postby Joannerogers » Sat Feb 20, 2016 6:07 pm

I just sending prayers your way!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Now on Hospice-How to Live While Dying????

Postby Sixpackmom » Sun Feb 21, 2016 4:01 am

As a nurse, and someone who has done hospice fir friends, my advice. ..
Use hospice as intended. Get someone to sit with him at a time he is usually resting so he won't miss you aND your won't feel guilty. Then go for a walk with a friend. Drive thru coffee with a friend who is willing to just listen. Take those offers to 'help in any way' .... say what you need- it blesses those offering as well as you which ultimately makes it easier on DH. Get phone numbers of a few friends who are willing to talk "anytime" and actually call them. Just speaking to someone outside of home is beneficial. It can be about anything.
After sitting with a patient and dear friend for days I just went to a random movie.... it gave me a break from reality long enough to decompress.
I also use audio books to help distract and relax my patients as well. It gives them a break from their reality too without using precious energy. A friend of mine had her husband doing a legacy book. Just a few minutes each day with her transcribing his thoughts on paper for her, for kuds, grandkids... random at times. I thought it would be hard but it seemed to be cathartic. Giving them a focus and ability to talk w/o always talking cancer.
Hope this helps.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

Sixpackmom
Posts: 17
Joined: Sat Jan 16, 2016 9:28 pm

Re: Now on Hospice-How to Live While Dying????

Postby Sixpackmom » Sun Feb 21, 2016 4:07 am

As a nurse, and someone who has done hospice fir friends, my advice. ..
Use hospice as intended. Get someone to sit with him at a time he is usually resting so he won't miss you aND your won't feel guilty. Then go for a walk with a friend. Drive thru coffee with a friend who is willing to just listen. Take those offers to 'help in any way' .... say what you need- it blesses those offering as well as you which ultimately makes it easier on DH. Get phone numbers of a few friends who are willing to talk "anytime" and actually call them. Just speaking to someone outside of home is beneficial. It can be about anything.
After sitting with a patient and dear friend for days I just went to a random movie.... it gave me a break from reality long enough to decompress.
I also use audio books to help distract and relax my patients as well. It gives them a break from their reality too without using precious energy. A friend of mine had her husband doing a legacy book. Just a few minutes each day with her transcribing his thoughts on paper for her, for kuds, grandkids... random at times. I thought it would be hard but it seemed to be cathartic. Giving them a focus and ability to talk w/o always talking cancer.
Hope this helps.
Rectal adenoma HGD 9/15
3 biopsies tubulovillous w/HGD, partial EMR 12/15
TAE 2/2/16, not clear margins near anal sphincter

ForDad
Posts: 82
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Now on Hospice-How to Live While Dying????

Postby ForDad » Sun Feb 21, 2016 7:57 pm

Cindie,
What an incredibly tough time this must be for you, your husband, and your sons. I just wanted to send you my best wishes.
Take care,
Sue
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo

User avatar
dianetavegia
Posts: 2715
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Now on Hospice-How to Live While Dying????

Postby dianetavegia » Tue Feb 23, 2016 4:32 pm

Cindie, check out Our Journey of Hope thru CTCA. Churches all over the country have Cancer Care Ministers who will help you with chores, cleaning, yard work, sitting with hubby, running errands, LISTENING and more. There's ZERO cost and no one is going to force religion down your throat. I've taken the full course and am being commission/ ordained as a Cancer Care Minister in 3 weeks. When regular classes end, we have monthly visits from CTCA with speakers who are oncs, rads, psych, preachers, counselors, RN's, paths, etc., to keep us up to date of trials, treatments and options.

You can contact them 24 hours a day, too. You don't have to go thru this alone. It's www.ourjourneyofhope.com They're also on Facebook at: https://www.facebook.com/OJOHministry/
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. PET = 1.5cm liver met. HR 4/11/12 No chemo

Over 10 years since dx and 7 years post liver resection.
NED since 2012

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

User avatar
chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Now on Hospice-How to Live While Dying????

Postby chrissyrice » Tue Feb 23, 2016 6:56 pm

Diane,
It was so good of you to recommend the CTCA ministry.

Is it open to all ... not just CTCA patients.

Blessings to you for helping.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

User avatar
artifact
Posts: 8
Joined: Sat Jun 08, 2013 8:44 am

Re: Now on Hospice-How to Live While Dying????

Postby artifact » Tue Feb 23, 2016 7:17 pm

I only know that when Marge got weak and was finding it harder and harder to move around and have energy the Hospice nurse recommended Methadone for the pain and a steroid for energy and strength. The combination did wonders for her, in fact, from my perspective it was even a little strange to see how powerful that combination was. I do think it took it took a toll on her body though but for the time that it did help I think she was happy to have the strength to get around a bit more and do some things.

C.L.
C.L.
Life partner to Marge Leopold (Pollo65) for 28 years
I met her as "Lee", though her given name was Margie and her professional persona over time became, "Marge". Early on in our relationship she got a piece of junkmail addressed to L. Leo Polo. After that she was "Polo" to me. My little niece, at two (more than twenty-five years ago), gave her what might be her most endearing nickname by excitedly scampering to the door and crying, "E's home! E's home!"

rosa01
Posts: 564
Joined: Sat May 19, 2012 1:24 pm
Location: California

Re: Now on Hospice-How to Live While Dying????

Postby rosa01 » Wed Feb 24, 2016 3:12 am

My thoughts and prayers are with you both. I was reading what our friends had to say and they have given you great help. Just remember to take time for yourself. God Bless

Sheila
DX 12/11 DH Stg 4 cc age 60
12/20/1 1 lungs mets
2/1/12 started chemo oxe/ava/5-fu
3/12 liver mete fnd
5/12 new chemo irt/Eberix
8/12 lung surg
10/12 irt/Eberix
11/22- 02/2013 NED
02/13 nw right lung met
06/13 2 New liver lesion
06/13 chemo ?

Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: Now on Hospice-How to Live While Dying????

Postby Hapa » Wed Feb 24, 2016 9:57 pm

I am so sorry that you are in this position. This is certainly one of the most difficult things we do. Take sixpackmoms advice. Call on those who will help. Hugs to you.
DH Stage 3 RC

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Now on Hospice-How to Live While Dying????

Postby Nik Colon » Wed Feb 24, 2016 10:22 pm

So sorry :( hugs
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: Now on Hospice-How to Live While Dying????

Postby Kathleen808 » Thu Feb 25, 2016 2:41 am

Cindie,

This is indeed a very very difficult time. Make sure you get some time to take care of yourself in the midst of taking care of your precious husband. Walk, have a good meal and then I recommend just being with your husband. Read books in the room he is resting in, read to him if he is interested. I recommend hanging out as much as possible. This time is hard but very, very precious.

Aloha
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: ilovemyfrenchie, MetastaticEquilibria, Rock_Robster and 44 guests