Signs you are dying.

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Cherie
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Location: New Zealand

Signs you are dying.

Postby Cherie » Fri Sep 04, 2015 8:38 am

So I can't find anyone in NZ to give me HIPEC. I continue with vitamin C as my only treatment. It continues to help with fatigue.

This is a hard question to ask because I'm directing at those who have watched a love one die. I want to know what signs you got that things were getting bad and then how long until your loved one passed?

I am trying to figure out how to spend my time. I have a six year old and I asking for a crystal ball. I know this may seem like a cruel odd question, but the praticle mum in me wants to plan to protect my "normal" life for as long as I can while leaving time for my girl.

Maybe I'm asking an impossible question...?
Last edited by Cherie on Fri Sep 04, 2015 8:59 am, edited 1 time in total.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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BrownBagger
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Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Signs you are dying.

Postby BrownBagger » Fri Sep 04, 2015 8:47 am

I think we all go differently, Cherrie, so I don't think it's possible to predict. However, I'm guessing that you'll know when your time is near. Hopefully not for a good long time.

Best of luck to you.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Cherie
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Location: New Zealand

Re: Signs you are dying.

Postby Cherie » Fri Sep 04, 2015 9:01 am

BB do you exercise most days?

I have tried to do chemo again and just end up dying in bed. 100 chemos...you are amazing
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Signs you are dying.

Postby BrownBagger » Fri Sep 04, 2015 9:40 am

I do try to break a sweat, at least, every day. It certainly helps with the chemo. I'm goofing off this week, other than gardening, because we're headed out to Wisconsin next week (the day after my chemo infusion), where I'll be working my tail off.

I'm very fortunate that I tolerate the chemo so well, and that it continues to work. I really don't want to think about what happens when it stops working.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

rickrobben
Posts: 31
Joined: Wed Jan 07, 2015 2:18 pm

Re: Signs you are dying.

Postby rickrobben » Fri Sep 04, 2015 6:33 pm

I have read studies show people who exercise have a 50 percent better response to chemo. I hiked 5 miles a day 7 days a week.

Rick
June 13 2014. Stage 3 rectal
6 rounds Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
11/14LAR complete response
Temp iliostomy
Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
5/15 Reversal
9/1 blood and sigmoidoscopy clear

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chixter
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Joined: Wed Jun 25, 2014 5:31 pm

Re: Signs you are dying.

Postby chixter » Fri Sep 04, 2015 10:26 pm

Feel free to PM me anytime. I've been through the worst. You answered your own question about how wisely to spend your time.
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

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Cherie
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Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: Signs you are dying.

Postby Cherie » Sat Sep 05, 2015 2:40 am

Thanks everyone for your comments I know its hard.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

WifeOfMike
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Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: Signs you are dying.

Postby WifeOfMike » Sat Sep 05, 2015 12:17 pm

Dearest Cherie,

They only thing I can tell you, is that my Mike concentrated on Living LIFE to it's fullest, to the very end. I know from our conversations that he knew he was nearing the end, but it did not fill our days, or conversations. We had already done as much as we could in the 2+ years leading up to the end of his life to ensure me & our sons would want for nothing & the home/ business & legal "things" were well out of the way & firmly grounded. He worried more about US, than HIM. My champion/ personal hero to the end. I spent my energy & focus on spending as much quality time with our sons as possible..... and his last months were during the major holidays, with all of our traditions intact. He LOVED that. It has given ME & our 3 sons a lot of wonderful memories to hang on to forever locked in our hearts.

No one has the crystal ball on when the end would come. I know we did not. I did not want to know, and YES I wish there were more TIME- but not selfishly to extend his life into a longer, perhaps painful ending. I can also tell you that he only had ONE really bad day, in which he struggled harder to breathe..... that was his last day with us. However, the medications/ hospice & me bouncing to his side to up the oxygen/ meds & call appropriate hospice help at the appropriate time eased his worries. He felt NO pain..... I asked multiple times. Rather, I upped the morphine, etc..... his struggling eased tremendously & he peacefully drifted off to sleep/ to fly with the angels. The tell tale signs I saw...... was his appetite dwindled over the last months as his body conserved more energy for his major body functions. Nature taking it's course, from what I read/ was told/ was prepared to see.

So my advice darling girl, would be to concentrate on LIFE, YOU & your family. I KNOW that is sometimes the hardest advice to follow, but where my HEART tells you to go. Who knows what will happen to any of us, or when, or how, or why???? No one on this Earth, my dear girl..... not that I have met/ or heard of.
Much love,
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

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Signs you are dying.

Postby behconsult » Sun Sep 06, 2015 9:21 pm

Dear Cherie, I am sorry you have to deal with such difficult issues and especially so with respect to having a young daughter. I too have two young children and have had in the past thought of how difficult my burden would be on them if passing were an a current issue. I hope you find health and healing in your path.

To answer your question, I work with a lot of end of life patients including those with "terminal cancer." Some have been "terminal" for years.

I notice that a significant marker is when they no longer eat citing they are "not hungry" and it is not a short term thing but consistent (week or more). Once that happens it becomes a time issue (couple weeks). This is assuming no other issues impacting alertness, i.e., delirium, sepsis, etc. I think there is a innate neurological mechanism that kicks in. It is different then when one wants to eat, but can't because of vomiting, etc. I hope that offers clarity. In the interim between now and that time when we all transition, live your life to the fullest, and stay in the present; not the past or the future. Peace, Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

Nik Colon

Re: Signs you are dying.

Postby Nik Colon » Mon Sep 07, 2015 3:08 am

Is there a way to come to the usa?

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

Re: Signs you are dying.

Postby artifact » Tue Feb 16, 2016 3:23 pm

This may well be past the time of appropriate and timely answering of a question but the subject struck me and my response may be of some help to someone else. As some of you know I am Pollo65's partner (I say am because I don't know how to stop being that).

I have to say her passing took me by surprise even though we lived with her stage 4 diagnosis and treatments for 6 and a half years, even though she was on Hospice for 3 and half months. Was it denial? Probably. But it was also hope. And there is something very powerful and delusional about the fact that it all (maybe the medicine, maybe the belief in the treatment, maybe the prayers, maybe the diet, maybe the support, maybe just her strong will, maybe the love, maybe all of it together was a special and unique symphony or dance of sorts) worked, one way or the other, for 6 and a half years.

For me, there was always one more thing we could do, one more adjustment to be made, one more pill, one more affirmation, one more day, one more holiday or sunrise to be had. Being so close (myopically so) to the gradual changes, the small debilitations that aren't fully registered, at least for me not in a way where I ever said to myself this is really, really it. And yet, as I write that I know I knew on an intellectual basis. For god's sake she was in Hospice, had signed a DNR. So the question--the signs, register on different levels. The spirit or the soul and the personality changes.

There are definitely physical signs to those of us on the outside that Hospice is clear to share, those last few days, especially. The changes in breathing and the stopping of all intake of food and water is around 100 hours away.

But the leaving itself I think is a subtler thing. Detachment we might call it. Or a Zen perspective. I saw my Polo getting wiser and calmer. She told me that she hoped I would find peace. And one day she came in from being outside and said please write this down for me: "I will pass in wonder and be renewed in awe."

In many ways she made a clean break 10 days before she passed. She woke up in pain, was clear minded when Hospice showed at 10 the next morning, to turn down their offer of moving her to the Hospice house and then cognitively some time during that day she let go of knowing us or her surroundings. The next few days she seemed childlike, in turns joyful over the sight of flowers over and over again the same flowers and the same joy each time she saw them and resistant and stubborn over our attempts to help her physically with anything. Looking back I see this psychologically while I'm sure some will see it physically (she could have had a met to the brain). The person I knew wasn't going to be cared for physically--it wasn't in her DNA.

So how do we know? We know and yet we don't see. And in the aftermath as brilliantly put by Shane Koyczan "I unexpect your death so hard
that a part of me believes I can make it not true." Even now the denial sends me on a search for finding what is next--where do we go?

What I hope, more than anything, is that when it is our own time, we finally see it clearly for what it really is; that we understand and are at peace with it. And I simply can't imagine that all this incredible awesomeness of life and love just ends.

After all of this I am left with the feeling that I don't have an answer to this. Denial is a powerful thing, in our culture and in our quest and thirst for life. I saw varying degrees of denial in family and friends, after all, 6 and a half years of "believing" you are dying and not dying is a reverberating force unto itself. We all have a myriad of ways that we interpret such a fact. One more was my way.
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!"

radnyc
Posts: 437
Joined: Tue Apr 06, 2010 6:32 pm

Re: Signs you are dying.

Postby radnyc » Tue Feb 16, 2016 7:39 pm

I'm not getting why you're giving up. Have you tried all options? Are you sure you're terminal, did a doctor tell you this? In my view once you start down this path, your mind will begin to see it this way and an unstoppable series of events will occur. Please be 110% certain that you're time here is done.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Signs you are dying.

Postby H is for Hawk » Tue Feb 16, 2016 8:58 pm

It looks like your neighbor Australia offers HIPEC, but your medical insurance may not pay for treatment in a foreign country. One path might be to self pay and set up a fund raising page on gofundme.com
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Signs you are dying.

Postby Lydia666 » Tue Feb 16, 2016 9:15 pm

Cherie wrote:So I can't find anyone in NZ to give me HIPEC. I continue with vitamin C as my only treatment. It continues to help with fatigue.

This is a hard question to ask because I'm directing at those who have watched a love one die. I want to know what signs you got that things were getting bad and then how long until your loved one passed?

I am trying to figure out how to spend my time. I have a six year old and I asking for a crystal ball. I know this may seem like a cruel odd question, but the praticle mum in me wants to plan to protect my "normal" life for as long as I can while leaving time for my girl.

Maybe I'm asking an impossible question...?

How are you , Cherie?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Signs you are dying.

Postby Cowgirl918 » Tue Feb 16, 2016 10:40 pm

We should each spend every day living life to the fullest. We should cherish each moment with our loved ones. We should know that we will be supported by God and the Universe as we make this transition. Peace to you on this journey.

Grow and Soar to Freedom
“When we walk to the edge of all the light we have
And take the step into the darkness of the unknown,
We must believe one of two things will happen…
There will be something solid for us to stand on,
Or we will be taught to fly”
Unknown

http://www.hospicenet.org/html/preparing_for.html
http://hospicefoundation.org/End-of-Lif ... hing-Death
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed


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