Looking for help

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worriedson714
Posts: 49
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Looking for help

Postby worriedson714 » Mon Jul 26, 2021 12:58 pm

Hello ,
I am in desperate need for some help I and my step mom are caregivers for my dad however my step mom and dad have been having marriage troubles . Which has lead to her refusing to empty his colostomy bag and refusing to clean his kidney drain the way the doctors said and refusing many other things . I try my best to help but I struggle with OCD , depression and anxiety and am always worried I am not doing something right it's alot for me to do alot . With my dad starting chemotherapy in two days I am really worried that his care will suffer .
See he has neuropathy so bad he can't change his own colostomy bag and can't do many things cause his hands just struggle to work . He is very afraid of getting diarrhea so he takes alot of imodium cause he worries my step mom won't help with his bag and worries I am not doing it right due to my own issues . I want to help my dad so bad and be that main caregiver but with chemo coming I'm scared I'll fail . So my question is does anyone know a program that can help get a home nurse to come to the house a few times a week for extra support ? My dad is on medicare and we don't have alot of money so it would need to be pretty cheap or we couldn't afford it every place I can find wants like $60 a hour which is to much for us .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Looking for help

Postby Nor Cal » Mon Jul 26, 2021 1:04 pm

Have you checked with his cancer center? They're usually pretty up to date regarding available resources. Good luck.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Looking for help

Postby zephyr » Mon Jul 26, 2021 4:42 pm

As Nor Cal mentioned, ask at your father's cancer center. His oncologist should be able to tell you if the cancer center has a nurse navigator or social worker who helps to coordinate services when patients need assistance. Also ask if there is a palliative home care service. Sometimes it will be connected to a hospice organization but it's not hospice. Some non-profit organizations provide these service for free or on a sliding scale. Medicare covers some in-home services too but I don't know the specifics. It might be worthwhile to also talk to your father's primary care physician.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin


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