This could be LONG ... very long !

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peanut_8
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Re: This could be LONG ... very long !

Postby peanut_8 » Sat Jun 24, 2017 9:57 pm

I always tell my family that I have descended from a long line of Vikings.

Basically, since I don't have a smidgen of evidence for this, there is quite a bit of eye rolling.

Well, sometimes you just know when things are true.

And I think your Mom has an inner strength to pull through this, and come out kicking posteriors.

Best Wishes to your Viking Mom CRGuy, and to you also.

Guess that makes you a fellow Viking as well. :mrgreen:
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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CRguy
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Re: This could be LONG ... very long !

Postby CRguy » Sat Jun 24, 2017 11:40 pm

Hey sista' nut .... Vikings it be :mrgreen:
and actually Yes, I have traced the lineage and her mom's side goes WAY back in Iceland

gotta visit Blue Lagoon someday

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

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ocstacy
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Re: This could be LONG ... very long !

Postby ocstacy » Sun Jun 25, 2017 12:33 am

I hear ya. I am the caregiver of my dear mother, age 77. I made her get ta colonoscopy due to her symptoms. We live 2 houses down from each other (like the greek wedding lol)Well, I pretty much quit my job to care for her and I have drove her to all appointments, scans, researched the best medical team and got her on good insurance. Her chemo/journey will begin next month. She goes through her bad and good day and same here. Some days we feel very weak and anxious and some days we feel very positive and no big deal! From what the medical team says, they all think she is going to kick it's butt, and I do to. She is just a sucker sometimes.. and then she brings me down w/ her. We got her a cute wig and that made her day, she looks so much younger! Anyhow, yes being a caregiver to a parent with cancer is tough but I wouldn't do it any other way. She has been there for me through thick and thin and I am here for her unconditionally! Thank you for your support
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

bitchslapped
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Re: This could be LONG ... very long !

Postby bitchslapped » Mon Jun 26, 2017 2:26 pm

Sounds like Mom w/b up to kicking you in the ass w/the good leg soon enough. Fortunately for YOU, she won't remember that 1st conversation while she was highly medicated :lol: :mrgreen:

Best wishes to your mom for a full recovery. Glad to hear there are people around to help support both of you, ease your mind a bit.

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, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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juliej
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Re: This could be LONG ... very long !

Postby juliej » Mon Jun 26, 2017 5:06 pm

Hooray for old Viking ladies!!! And their fierce Viking warrior sons who stand up to them! :D

My family had a similar experience with my equally fierce grandmother. Here are some of the tactics we used. Hope they help a little!

1. Let her know you're on her side, that you understand she doesn't want to be here. Explain that you and her doctors will work to get her home as soon as possible, but the doctor can’t in good conscience send her home until it’s safe to do so.

2. Explain the factual reasons for her admission to rehab and what the goals are. Explain that it is not a sign of weakness to need rehab. It is a sign of strength to go through it with the goal of returning to an independent life.

3. Give her a projected discharge date to strive towards, with specific tasks that need to be mastered.

4. Meet with nursing and therapy staff to discuss behavioral challenges and discuss approaches that are more effective in obtaining desired results. In other words, say they're going to be dealing with one tough Viking lady so act accordingly! She doesn't want to live as a bed-ridden invalid treated like an errant child by a staff concerned with protocol!

CRguy wrote:LIFE is what it is, and while it may not always be what it seems

it IS STILL the life you are living
so find a way to deal with it and move forward

what IF ... ain't worth shit sometimes

WHAT IS ... is golden and we all need to embrace that and move on
in any and every way we can

THIS new Journey is gonna be a bee-atch

patience will be at a premium

I have a feeling you're right about patience being at a premium, but try to keep your center. Honor what is sacred in you and stand proud knowing that you're taking care of your mom in the best way you know how.

xo,
JJ
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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CRguy
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Re: This could be LONG ... very long !

Postby CRguy » Mon Jun 26, 2017 10:01 pm

The continued support... as WE all know here IS GOLDEN !!!!!!
Thank y'all for your sharing and caring

Hey JJ..... very good points thank you
2 already covered
the other 2 soon shall be detailed and refined !

As for patience for patients :shock:
... and you will know whereof I speak my dear friend

" So Master ... am I now the teacher or the student ?
To which the Master replies .... Yes. " :mrgreen:

Love Peace and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: This could be LONG ... very long !

Postby michelle c » Wed Jun 28, 2017 7:47 am

Oh no, your poor mom. Sounds like she is being well looked after and is well supported. That is always a good thing. Wishing her a speedy and uneventful recovery.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

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CRguy
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Re: This could be LONG ... very long !

Postby CRguy » Thu Jun 29, 2017 10:35 pm

Just moved to new facility
not a hospital ward, but a private room in retirement/residential care facility with 24/7 nursing staff and physio support.

10 min drive from all her friends / congregation and her Doc,
who does ER rounds in the hospital ( 2 min away ) also comes to visit = HUGE WIN !!!!!
her Pastor comes to visit = WIN WIN !
.... and she likes the staff and the place .. AND has some homies / and their kids working here !!!! = WIN WIN WIN !!!!!

So far SO GOOD !

Thanx y'all for all the support
it will STILL be ... very long
BUTT the light at the end of the tunnel is NOT a locomotive :mrgreen: :mrgreen: :mrgreen:

Cheers all
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: This could be LONG ... very long !

Postby JudeD59 » Thu Jun 29, 2017 10:49 pm

CRguy wrote:Just moved to new facility
not a hospital ward, but a private room in retirement/residential care facility with 24/7 nursing staff and physio support.

10 min drive from all her friends / congregation and her Doc,
who does ER rounds in the hospital ( 2 min away ) also comes to visit = HUGE WIN !!!!!
her Pastor comes to visit = WIN WIN !
.... and she likes the staff and the place .. AND has some homies / and their kids working here !!!! = WIN WIN WIN !!!!!

So far SO GOOD !

Thanx y'all for all the support
it will STILL be ... very long
BUTT the light at the end of the tunnel is NOT a locomotive :mrgreen: :mrgreen: :mrgreen:

Cheers all
CR


Sending love and prayers, CRguy. Having people around to visit and keep her Viking spirit up will make a huge difference. Now we know where you got your kick-ass attitude from. :mrgreen: :mrgreen:

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

[Ana & Alex]
Posts: 96
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Location: Austria

Re: This could be LONG ... very long !

Postby [Ana & Alex] » Thu Jun 29, 2017 10:53 pm

CRGuy,

I am accompanning every step of your journey and just didn't know what to say. You are so right when you say that being a caregiver is sometimes harder than being the actual patient...

I'm so glad that it's me that's on this journey, instead of any of my family members - but in the end of the day, we are really in this together, but no matter the perspective very alone still.

Daughter/ son, husband, parent... I can't imagine how hard it must be.

But I was so happy to read your last post, I had to say something.

I hope that all goes well, and that your mother can feel herself "at home" with that kind of support from the community. That goes a long way, to keep one motivated and reaching towards the light at the end of the tunnel..

That definitely won't be a locomotive :wink:

Thinking of you and sending good vibes in your way!
Love,

Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

bitchslapped
Posts: 1538
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Location: PNW/USA

Re: This could be LONG ... very long !

Postby bitchslapped » Thu Jun 29, 2017 11:30 pm

What a relief this must be for you...to know your mom w/b in comfortable surroundings, well cared for. Can be a real challenge pulling it off from a distance. We can't do enough for the moms of the world. They deserve a safe place. :)

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, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: This could be LONG ... very long !

Postby peanut_8 » Thu Jun 29, 2017 11:48 pm

Saw Ian Anderson preform 'Locomotive Breath" a few weeks ago.

He hasn't really slowed down, and I'm hoping the same for your Mom, CRGuy.

Knowing her son, I suspect she's really a 'plucky gal' at heart.

peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: This could be LONG ... very long !

Postby CRguy » Fri Jun 30, 2017 12:32 am

AGAIN !!!! shout outs and mega thanx to ma' homies here .......

Judy, my Viking kickass is hereditary ... fo' sure !
MY grandmother died 1 week short of her 100 th B-day and always said :
"Old age is no place for sissies !!! " ... and SHE was no sissy = WORD !

Ana, the very reason this forum exists and I keep coming back = community and support,
I am on both sides of the caregiver / patient discussion and that means everything !

BS, the actual back and forth physically will take a toll ... BUTT ...
everyone I have dealt with at a distance has been excellent. Yes I know the folks and know the community well but am not there 24/7.
It really IS like it was back in the 50's when you didn't need to lock your doors and if you were late from work, a neighbour would have your kids over for dinner, and a plate waiting for you ! REALLY !

sista' nut ... Jethro Tull IS epic and those 1 legged flute solos = phenomenal !!
just one of my "almost famous" Rockin'Roll anecdotes :
in the 70's on a road trip, visited a synthesizer maker who had just done a Donny Osmond concert backup sound system and were working on an upcoming Jethro Tull concert. Their keyboard specialist was "tampering with some circuits and we got talking ( I am/was an electro-techno geek) got an invite and was backstage for concert while these guys were messing with the high end stuff. Seeing the Ian Anderson solos from stage right is WAY different than from the front
BUTT epic nevertheless. Still love their original "Bourée" as a gentle vibe from the original days.
Damn ... those ARE the good old days of rock .....

GOOD Harmony homies
Good memories
GREAT VIBES

LUV y'all
CRguy Journeying .. always
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: This could be LONG ... very long !

Postby Lee » Fri Jun 30, 2017 12:41 am

CRguy wrote:Just moved to new facility
not a hospital ward, but a private room in retirement/residential care facility with 24/7 nursing staff and physio support.
Cheers all
CR


I take that as good news. All the best to you, your mom and a most speedy recovery.

thinking of you both,

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 - 16 years and counting!

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: This could be LONG ... very long !

Postby CRguy » Fri Jun 30, 2017 12:53 am

Thanx Lee
YEAH that is a WIN !

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


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