Caregiver with up's and down's

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ocstacy
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Joined: Mon Jun 19, 2017 11:29 pm
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Caregiver with up's and down's

Postby ocstacy » Mon Jun 26, 2017 1:55 am

Hi all, My mother recently got diagnosed with cancer. Being an allied health major, I pushed my mom to see a GI specialist as she mentioned pain, blood, hemorrhoids, and narrow bm. Prior to this, she had so many scans for osteoporosis.Dr. thought maybe bone cancer? She was put on Forteo and 2 years later, she was diagnosed with Colon cancer.She didn't have colonoscopy prior for almost 10 years! I am a little upset that her general dr. didn't make her get one. Sometimes dr. piss me off! I wish I was a doctor sometimes & I feel like I know more than them sometimes.

Anyhow, I used to work in the cancer center with radiation oncologists 15 years ago when the MRI films were big and the chemo was different. I go through my ups and downs with my mom. Some days, she feels good and I feel good, and other days she is in pain and then I get sad for her. She feels scared, sometime than I feel scared. She lives two houses down from me, lucky her! :D (like the movie "Greek wedding") I quit my job for my mom as I was only working part time. She will be living with me all summer so I can care for her, be her nurse, be her doctor, her chef, be her buddy. I will take care of her as much as I can as I have been to every single appt with her. I bent over backwards to switch her insurance to medi medi so she is covered for life. Found her the best colorectal surgeon that will perform 3D laparoscopy surgery and he mentioned he could save her rectum and will hand sew her one so she won't have perm colostomy (pray) I notice that she wants to lay down a lot in her bedroom watching movies more often, even in weather of 85 degrees.She has not started chemo/radiation yet. Next week, she will. I'm putting together a chemo bag for her. I will do anything for my mom, as stubborn as she can be. I even gave her an enema before her MRI and helped her prep with KY Jelly anal injection prior to CT SCAN.I even sat in on a few of her appt when the dr. gave her anal exam. I was there for support and I think she really appreciates me being there since my dad just had triple bi bass and cannot be there. Sorry for the TMI. We were laughing while doing it.. she said "you came out of there'.. really? no I didn't .. lol but we were crying laughing hysterical. omg. :shock: :lol: I am okay with stuff like that, it doesn't bother me.

I will admit, the word chemo freaks me out. I know there are so many different kinds but this oral chemo is new to me. I hear it's the same, I hear she will do great and that if she completes the 6 weeks, she will be okay. But I am scared and worried because she is in pain now and has nausea. I knew for a long time that something was wrong with my mom.She would curl in a ball on her bed, break sweat and then she was okay. Not sure why she let it go for so long. I don't know why she would never share this with her doctor. Then she became uninterested going to places. Fun places like Disneyland or shopping. She would always say "no thanks".

Any tips? I am all alone and so glad I have this group to talk to. I so happen to find this colon talk on my own by searching on google. I try to talk to my husband, but he always says the same things. I let my friends know and they just ask how my mom is doing, or offer childcare. I have a good friend who I thought was my good friend, but she never contacted me after I let her know about my mom. She ain't a true friend, she is a fake friend. I guess you really know who your real friends are when you get older. I notice some people do not say anything at all cause they don't know what to say or they just don't care. Now I think to myself being on the other end of what not to say to cancer patient. It's a very particular topic. Today, I am scared, nervous, and not strong. It's okay not to be strong so they say. She has an amazing oncology team/ surgeon. I would say the best of the best with great research! I just wish cancer never existed in this world. I hate cancer. I hate everything about it. Sorry I had to vent. Thinking about all of you, prayers, hugs, sending positive vibes. When you see the fireworks, think of me, it's my birthday on 4th of july. God bless thank you :(
Last edited by ocstacy on Tue Jun 27, 2017 12:44 am, edited 2 times in total.
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.

Scilla
Posts: 24
Joined: Tue Apr 11, 2017 4:09 am

Re: Caregiver with up's and down's

Postby Scilla » Mon Jun 26, 2017 4:20 am

dear ostacy, I'm a caregiver as well and I can certainly recognize the emotional stress you're describing. I'm glad you came here to vent, many of us understand what you're going through.

My mom had had symptoms for 2-3 yrs which she completely ignored and never told anyone about and it took a climactic week of intense diarrhea, vomiting and rectal bleeding to force her into the ER. She was unconscious then and we thought we were losing her.

She's still here luckily, but when she was finally diagnosed with mCRC stage IV, she was in such a poor condition that she could hardly tolerate any treatment.

Since her diagnosis, she's been spending most of her time in bed in front of the TV. I cook delicious, nutritious meals for her, comfort & nurse her and encourage her to be physically active, but she's not easy to work with. She simply prefers to lay in bed all day. The first couple of months I was very frustrated because I wanted her to do more (physical exercise, cannabis oil, tumeric root, you name it) but now I've come to terms with the fact that there's only so much I can do and in the end it's up to her how she chooses to handle her disease.

She's optimistic, though, and I'm impressed with that, because it doesn't look too good, butt I, too, am hoping that the new chemo cocktail will do the trick.

All the best to your mom!
Supporter of mom 68 yr
Dx RC CRC 03/17
Rectal tumor 5cm, colon tumor 9cm
Two small liver mets,
04-05/2017 CAPOX Started twice, stopped due to side effects.
05/2017 One week of radiation to rectal tumor.
06-08/2017 Irinotecan+Bevacizumab
08/2017 Treatment stopped due to frail health
Mom is in Gods hands

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

Re: Caregiver with up's and down's

Postby zephyr » Mon Jun 26, 2017 1:13 pm

I don't have any answers but wanted to say this to all the caregivers who might read this thread: Thank You!
Those of fighting cancer know your job is hard. Really, really hard. Thank You!
We hope to repay the the kindness, the caring, the support someday but meanwhile all we can offer is ... Thank You!
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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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Caregiver with up's and down's

Postby CRguy » Mon Jun 26, 2017 11:40 pm

ocstacy wrote: I would say the best of the best with great research! I just wish cancer never existed in this world. I hate cancer. I hate everything about it. Sorry I had to vent. Thinking about all of you.thank you :(

Sorry you have had to be here ... BUTT .....
YOU are exactly what this forum IS all about
perfect ? no
imperfect? no
no matter ... YES

just BE yourself, be REAL
suck it up and return to the fight
OR take a day off to regroup

and THEN return to the fight when you can

Whatever we can give YOU in support ... YOU will bring back to us
in your own time and in your own way

Sending best wishes to your Mom
( we have exchanged posts on a couple of topics now :shock: about "Moms" )

Cheers and Harmony my friend
we are ALL on some kind of Journey here
patient, caregiver ..... doesn't matter

it just matters that we ARE all here together

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


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