How did you know it was the end?

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CrossfitChick1980
Posts: 53
Joined: Wed Nov 25, 2015 9:40 pm

How did you know it was the end?

Postby CrossfitChick1980 » Mon Dec 17, 2018 5:21 pm

My DH said it so simply, "So, we are here." The mets in his liver are growing, despite one round of chemo, he has ascites and is very confused. His bilirubin is through the roof and after a lengthy conversation, he said he wanted to just go home and do hospice. My question for any caregiver, when did you know it was the end? I know hospice will give us a general idea but he is so confused and so frail, I dont think he will last much longer. Any information is appreciated.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

Lee
Posts: 5974
Joined: Sun Apr 16, 2006 4:09 pm

Re: How did you know it was the end?

Postby Lee » Mon Dec 17, 2018 5:31 pm

I am so sorry.

From what I do understand, they generally stop eating food and water. Sleep a lot and can become confused. Hospice should be able to help with any pain he may be having. Front what I understand, hospital bed have been very helpful especially towards the end.

I hope those that have more experience will chime in.

You and your family will be in my thoughts and prayers.

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 - 10 years and counting!

User avatar
CRguy
Posts: 10038
Joined: Sun Feb 10, 2008 6:00 pm

Re: How did you know it was the end?

Postby CRguy » Mon Dec 17, 2018 11:56 pm

CrossfitChick1980 wrote:My DH said it so simply, "So, we are here." The mets in his liver are growing, despite one round of chemo, he has ascites and is very confused. His bilirubin is through the roof and after a lengthy conversation, he said he wanted to just go home and do hospice. My question for any caregiver, when did you know it was the end? I know hospice will give us a general idea but he is so confused and so frail, I dont think he will last much longer. Any information is appreciated.

Hey homie
sending posi +++vibes to your whole family right now
In a bit of a dark space myself BUTT.... need to chime in with any help I can offer.
BTDT thrice

First, he "knows" despite the confusion, as we all must know .... when we are near.
The liver issues will cloud the brain due to body chemistry etc. ... just the way it seems to go sometimes
BUTT yes, I am sorry to say, he knows.

caregivers ? we don't "want to know"
BUTT ... we NEED to know... to be there
JUST to be there ...

my experiences encompass 2 basic situations :
1. strong "mind" and failing "body"
2. strong "body" and failing "mind"
... which both ultimately led to a failing of both mind and body

My question for any caregiver, when did you know it was the end?

when the good moments are outnumbered by the bad
when the pain exceeds what we can control
when the one we love is .. " no longer there..."
when the treatment is worse than the affliction
when our loved one says " ... enough, ... I am ready to pass "

when .... enough has been enough
and we have done all we can do

when I need you
to set me free
that is the greatest
act of love
that you can do

for me
for ever

forever in your heart ....



Love Peace and Harmony
CRguy

always on the Journey with you
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

WarriorSpouse
Posts: 206
Joined: Tue Aug 16, 2016 9:02 pm

Re: How did you know it was the end?

Postby WarriorSpouse » Tue Dec 18, 2018 12:10 am

I am so saddened to be reading this.
Our thoughts and prayers are with you guys.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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Jack&KatiesMommy
Posts: 600
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: How did you know it was the end?

Postby Jack&KatiesMommy » Tue Dec 18, 2018 9:56 am

Is there any chance they could try Keytruda? I am MSS and because I had 12 mutations (most of which probably occurred from all of the treatments that I have had over the last 7 years). I had response within a couple of weeks. Just wondering if you could talk to his doctor to see if this could be an option.
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1
Clear CTs
CEA up to 4.5 Single Node lighting up (mildly)

tammyffb
Posts: 7
Joined: Sun May 01, 2016 5:55 pm

Re: How did you know it was the end?

Postby tammyffb » Thu Dec 20, 2018 12:26 am

I am so very sorry you are going through this, my heart breaks for you and your family. I am a very rare poster here, as was my sister, but felt compelled to answer you as I know I would have wanted answers too. My beautiful sister passed away the day before Thanksgiving, 11/21/18, at the very young age of 41. She had been in the hospital from 11/3 thru 11/9 with a complete bowel obstruction and an NG tube was placed to remove stomach contents. She decided to go on hospice on 11/7, and went home on 11/9. For the next 12 days her husband and I were her round the clock caregivers, alternating shifts of diaper changes, ostomy bag changes, NG tube disposal, med administration, and comfort giving. I would lay in bed with her all day every day. As her skin became dry due to dehydration, I would massage some organic non-scented lotion on her. The physical touch definitely seemed to comfort her. She was mostly incoherent and speaking in hallucinations due to the massive amount of narcotics combined with the fact that her body was shutting down. But please take this piece of advice to heart - no matter how out of it she was or no matter how asleep she seemed - she could 100% hear and process everything we were saying. 100%. We would think she was not even conscious yet out of nowhere she would chime in on our conversation to add in her two cents worth. That being said, she also would say a lot of things that did not make sense, we would just answer her as if they did and assure her everything was ok. Most of it was hallucination type induced anxiety talk and it helped to calmly address it as if it were real and to ease her anxiety as much as possible. She then went thru a phase where she would repeatedly try to get up out of bed and pull her tubes out and walk. She was agitated. We would listen to her but calmly explain that getting back in bed was the best thing for her. We would sometimes prop her up on a pillow so she was sitting and engage her so she felt less "stuck/trapped". At this point she was no longer aware of her condition or limitations. She had a hospice nurse visit 2 days prior to her passing, and the nurse pulled me aside at that time and advised she had about 2-3 days left with us. He pulse was extremely high and her blood pressure extremely low. She also had no control over body functions. Her eyes were sunken in and it was physically apparent that changes were taking place. She slept most of the time and it became very difficult to understand when she did try to speak. We softly played her favorite music and told our favorite stories, and at times she would smile when we laughed - she was listening. The day before she passed she woke up and (although it was difficult to understand) told me that she wanted me to thank everyone for everything they had done for her. Especially over the last year when things got bad. I told her I would tell everyone for her. She smiled the biggest smile I had seen in a long time and said "Thank you. I am done now". A few hours later she woke up again restless and trying to talk, repeating what I believe was similar to our previous conversation. I told her that I did tell everyone thank you for her and they all said that she was welcome and they loved her so much. I then told her (sobbing, but I got it out) that I loved her and it was going to be so horrible without her, however I promised I would be ok. I told her I would talk to her every day and look for her guidance - but I would be ok. And I promised I would look after her husband, my husband, and my dad to make sure they would all be ok as well. I then left her husband, my husband and my dad each with her individually for a few minutes so they could let her know they would be ok as well and say their good-byes. This was what she needed to let go. When I came back to her room after all of us had our time with her she said "I have to go now, I have to leave". That was the last thing she said to me. I fell asleep in bed next to her holding her hand, about an hour after that I woke up to her in a state of heavy gasping/breathing, which only lasted for a few minutes and slowed rapidly until she peacefully took her last breath. I was laying in bed with her, holding her hand, and telling her we loved her the entire time. Your instinct will tell you when it is time, and please just remember that they are looking for peace for their loved ones, can hear everything you are saying, and find comfort from your physical touch. And I do hope, in the midst of all of this devastation, that you will find some comfort and peace in the love and care you have selflessly provided. I am truly so very sorry.

CrossfitChick1980
Posts: 53
Joined: Wed Nov 25, 2015 9:40 pm

Re: How did you know it was the end?

Postby CrossfitChick1980 » Thu Dec 20, 2018 1:03 am

Thank you all for your responses. I have found peace that my husband has fought for so long and right now, it is his time to rest. He has given our kids and I so many memories in our almost 15 year marriage. We have survived a deployment together to Afghanistan ( leaving our children with my parents), one solo deployment from him and two from myself. I am just home from my latest deployment almost 7 months and before I left, he told me "I promise I wont die on you." Well, he kept that promise. He is so frail and weak, and already showing signs that a healing for him with occur on the other side. I am always hoping but I know that he is ready. Hospice care is coming tomorrow, and while I am afraid of a future without him, I unselfishly do not want him to suffer any longer.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

WarriorSpouse
Posts: 206
Joined: Tue Aug 16, 2016 9:02 pm

Re: How did you know it was the end?

Postby WarriorSpouse » Thu Dec 20, 2018 12:00 pm

Our thoughts and prayers are with you during this most difficult time... The entire CT community has your family in our thoughts.
God speed.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: How did you know it was the end?

Postby LPL » Thu Dec 20, 2018 4:43 pm

CrossfitChick1980,
Sending warm hugs to you at this difficult times :cry:
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets


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