Caregiver Survivors Guilt and Unrelenting Deep Sadness

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miked
Posts: 95
Joined: Thu Apr 30, 2009 3:29 pm

Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby miked » Sat Mar 18, 2017 9:48 pm

On February 22nd, my sweet Angie passed away after an 8 year 11 month battle with Stage IV CRC. Original prognosis was less than a year from Hopkins. HA! We went in to the hospital on 2/13/17 for a fresh lung biopsy to use to try get her into a trial at NIH due to progression in both lungs. We were scheduled to go on a cruise with her siblings on 2/20/17 to which all doctors said should be no problem. The procedure and recovery went fine, day one recovery fine, day 2 in AM recovery continues so well they remove chest tube and said they will discharge her that evening. As day 2 progresses, breathing difficulties progress, and breathing difficulties progress over the next week plus. After a 9 day battle, her oxygen saturation levels cannot be maintained, she goes unconscious, they intubate her, and off to ICU and 18 hours later she passes away at 52. While in ICU the say they continue to have problems keeping her BP up and oxygen levels up. I will repeat, we knew there was progression in both lungs and the clock was ticking.

I know there are several people on here who had several similar relationships with their spouses. I feel so guilty that I am still here and she is not. If I try to cheer my daughters up and smile about something it later eats me up. The deep daily sadness is relentless. We have many good memories, but every time I go someplace or do something where that good memory was created I am instantly reminded that portion of my life is gone forever. I am confident she sits with our Heavenly Father today, but the sadness and guilt is well....you fill in the blank.

My 3 daughters and I have begun to attend a group grief sessions and will reach out to some one on one counseling in the near future. Not only do I wrestle with the grief and guilt, but how a lung biopsy that was going so smooth, can do a 180 and take my soulmates life weighs heavy on my mind.

My question goes out to anyone in similar circumstances. Sorry for the diatribe.

Thank you,

Mike
Wife DX 3/08 Stage IV
4 Liver Tumors & Too Many Spots to Count
Xelox/Erbitux 4/08-9/08
10/08 LAR/ 2 Sm Spots Rem Fr. Liver
Irinotecan/Erbitux/Avastin 12/08-04/09
CEA .7-1.5
Maint. Erbitux 10/09 -07/10
07/10 Done Chemo/NED/Yance Protocol Since Day 1

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby Sams wife » Sun Mar 19, 2017 11:42 am

I'm sorry to see this too. You wouldn't think of a normal biopsy doing this. Scary stuff. Hopefully someone will come along soon.

Hopefully this works, I'm sure hubands can get on here too :D
It seems a few people are on this thread lately.
I'm pretty sure you already know its there tho.


viewtopic.php?f=1&t=18704
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

Lee
Posts: 5082
Joined: Sun Apr 16, 2006 4:09 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby Lee » Sun Mar 19, 2017 5:19 pm

(((MIke)))

I am so sorry for your loss. No words can ever take the pain away.

This thread is not as active as it once used to be, butt the right person could bring it back.

On going thread for those left behind

viewtopic.php?f=1&t=46183&hilit


You and your daughters 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!

bitchslapped
Posts: 1292
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby bitchslapped » Sun Mar 19, 2017 5:49 pm

Mike, We have an ongoing thread here : New Thread For Loved Ones Left Behind. You may find it helpful from what others have shared:
viewtopic.php?f=1&t=46183&start=285
(looks like Lee & I were posting @ the same time)

First off...my condolences to you & your daughters for the unexpected loss of your wife. Loss is so difficult under any circumstance of course; grieving so personal.
Caregivers have a hand in everything; an immense responsibility to & for the life of a loved one & those who love them. Sometimes we may feel we failed them in some way, yet in all reality we championed them. Maybe that is a part of survivor's guilt. Why am I still here you ask? Because she needed you to walk her journey w/her?

Difficult as it is to accept, there are some things we will never have the answers to. Depending on how one believes, we find ways to accept that it is not for us to know or choose. Painful as it is, grief is a process. Not something to "get over", yet will lessen w/time.

The rest of my post disappeared so will end w/sending my best wishes to you & your family in healing. So many of us understand your deep sadness.

BS
Last edited by bitchslapped on Sun Mar 19, 2017 6:12 pm, edited 1 time in total.

Lee
Posts: 5082
Joined: Sun Apr 16, 2006 4:09 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby Lee » Sun Mar 19, 2017 6:10 pm

bitchslapped wrote:Mike, We have an ongoing thread here : New Thread For Loved Ones Left Behind. You may find it helpful from what others have shared:
viewtopic.php?f=1&t=46183&start=285
(looks like Lee & I were posting @ the same time)


Great minds think alike :D

Again, Mike, I am so sorry for your loss.

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!

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miked
Posts: 95
Joined: Thu Apr 30, 2009 3:29 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby miked » Sun Mar 19, 2017 7:07 pm

Thanks so much. Over the years we were helped the courage and knowledge of those in the fight and caregivers. I certainly hope I didn't offend anyone or bring anyone down. I have gone to the recommended link and found it most helpful. God Bless You.
Wife DX 3/08 Stage IV
4 Liver Tumors & Too Many Spots to Count
Xelox/Erbitux 4/08-9/08
10/08 LAR/ 2 Sm Spots Rem Fr. Liver
Irinotecan/Erbitux/Avastin 12/08-04/09
CEA .7-1.5
Maint. Erbitux 10/09 -07/10
07/10 Done Chemo/NED/Yance Protocol Since Day 1

bitchslapped
Posts: 1292
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby bitchslapped » Mon Mar 20, 2017 12:20 am

Lee wrote:Great minds think alike :D


I think we are on the same wave length today Lee!


miked wrote: I certainly hope I didn't offend anyone or bring anyone down.


Mike, This forum isn't for the faint of heart considering what everyone is coping with. It is not a matter of bringing anyone down IMO. Grief is ongoing, much further, much deeper than one post or one thread. I think the thread by OP, Helen, as an asset to the forum as most people don't stick around long after losing a loved one & some check in once in awhile. They can't seem to get rid of me, though I'm not as active as I used to be.

Hoping the grief counseling brings some degree of comfort to you.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Utwo
Posts: 129
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby Utwo » Tue Mar 21, 2017 8:42 pm

MIke, my condolences to you & your daughters.

miked wrote:If I try to cheer my daughters up and smile ...
Mike, you do not need to cheer your daughters up. Being sad is OK.
Just try finding some bits of positive in your daily life like hiking together, working in the garden etc.

miked wrote:My 3 daughters and I have begun to attend a group grief sessions and will reach out to some one on one counseling in the near future.
This should help.
Just allow proper time for grieving. Do not force happiness on yourself and your daughters. It doesn't work.

miked wrote:The deep daily sadness is relentless.
Again, this is OK.
Just go with a flow and in time it would subside.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

User avatar
miked
Posts: 95
Joined: Thu Apr 30, 2009 3:29 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby miked » Wed Mar 22, 2017 1:07 pm

thank you!
Wife DX 3/08 Stage IV
4 Liver Tumors & Too Many Spots to Count
Xelox/Erbitux 4/08-9/08
10/08 LAR/ 2 Sm Spots Rem Fr. Liver
Irinotecan/Erbitux/Avastin 12/08-04/09
CEA .7-1.5
Maint. Erbitux 10/09 -07/10
07/10 Done Chemo/NED/Yance Protocol Since Day 1

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CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby CRguy » Thu Mar 23, 2017 10:08 pm

I don't believe there is any "right" way to go through what you are going through, only the way you need to, to get through it yourself.
IMO it really IS whatever gets you through the night ... is alright.

Sharing here with us, as you have always done is part of that, as are the sessions of counseling.
Being there to support your own family and in turn BE supported, sometimes something we don't do that well, will all be part of the new Journey.

All you, we, anyone can do..... is be their own best person, and sometimes that means letting ourselves benefit from a little compassion for ourselves, such as we would extend others.
Your sadness is real, losing Angie.

Your guilt is understandable and "normal" but is it really "real" ?

I have been where you are, as patient and caregiver, and found that I came to understand I was not really guilty of surviving where others passed. I was simple fortunate, and try to live life as a testament to still being here to honor those who I have lost, many on this very forum.

I think you have always tried to honor others and support them, as I said in the In Memoriam topic. So when the "feelings" of guilt are assuaged, my sincere hope for you is that you too may resonate with a more harmonious and supportive inner peacefulness.

It may not be easy, BUTT my wishes for you, are that you can find a better place in your own life and your family's.
Still with the Love and Joy of being Angie's soulmate .... but without the guilt and pain.

In time my friend, as others have said .... in time.

Love Peace and Harmony
On the Journey with you
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Rob in PA
Posts: 1969
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Caregiver Survivors Guilt and Unrelenting Deep Sadness

Postby Rob in PA » Thu Mar 23, 2017 11:06 pm

miked wrote:Thanks so much. Over the years we were helped the courage and knowledge of those in the fight and caregivers. I certainly hope I didn't offend anyone or bring anyone down. I have gone to the recommended link and found it most helpful. God Bless You.



This tough situation. God blesses all
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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