A nightmare X 2?

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Punky44
Posts: 119
Joined: Mon Oct 01, 2018 4:29 pm

A nightmare X 2?

Postby Punky44 » Fri Oct 26, 2018 2:13 pm

As many of you know, I have been a member here for nearly a month since my mom was diagnosed with RC.

I am so grateful for finding this wealth of information and support—I continue to advocate for the best care for my mom to get her to NED in large part to the advice on this forum.

As many of you said would happen, we do “feel better” now that a plan to fight this is formulated.

But I’m finding I personally have become just absolutely terrified of also having colorectal cancer myself (hence, a nightmare times 2.)

I have been diagnosed with severe anxiety disorder, so these feelings come as no surprise to my family but nonetheless I am just paralyzed by fear. I am definitely scheduling a colonoscopy (waiting for the GP scheduling office to call me back today in fact) but I fear it could be weeks before I am seen.

I am 34 and up until my mom’s diagnosis, I never once thought about this particular type of cancer (though I convinced myself of multiple other cancers I thought for sure I had.) But now that this one has become real for my mom, I fear it’s going to be real for me too. I have had small amounts of rectal bleeding dating back 15 years to my college days and I have always been told by docs that it is due to fissures and/or hemmroids. It’s actually the one thing I never freaked out over because it’s just been an on and off phenomenon for as long as I can remember and is almost always associated with straining. Then since my mom’s diagnosis, I have had loose stools that come out in pieces literally every day. And today I have a pain in my lower left side. I know stress/anxiety can cause a change in bowel movements and digestive issues, but it just fuels my fear even further.

I just pray I can get this colonoscopy and be proven wrong.

Did any other caregivers experience this fear? I feel bad that I’m taking any energy away from being a caregiver for my mom to freak out about myself but I just spiral so easily.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

User avatar
bitchslapped
Posts: 1523
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: A nightmare X 2?

Postby bitchslapped » Sat Oct 27, 2018 7:06 pm

Punky44 wrote:But I’m finding I personally have become just absolutely terrified of also having colorectal cancer myself (hence, a nightmare times 2.)

I have been diagnosed with severe anxiety disorder, so these feelings come as no surprise to my family but nonetheless I am just paralyzed by fear. I am definitely scheduling a colonoscopy (waiting for the GP scheduling office to call me back today in fact) but I fear it could be weeks before I am seen.
Punky44 wrote:Did any other caregivers experience this fear? I feel bad that I’m taking any energy away from being a caregiver for my mom to freak out about myself but I just spiral so easily.


Punky44,

It appears what you are really asking is do any other caregivers have severe anxiety disorder. I didn't & haven't noticed others on this forum that have shared anxiety to that level. All caregivers & patients are going to have some degree of anxiety, worry, despair. I mean: How can you NOT :?: :!:

There is one dx'd patient so far & that appears to be your mother = Nightmare #1, period. As far as your issues, a colonoscopy now or a few weeks or even a few months out w/n change a dx for you.

No doubt you are a big help to your mom in many ways, but she gets to be the patient here, not you...@ least for now. Fear adds nothing to the equation, counterproductive. But you can't tell someone that who suffers from anxiety just due to everyday living.

Obviously w/a dx of severe anxiety disorder you have sought medical help. Consider joining an online community of others w/like dx to yours.

The last person who should know about your severe anxiety over this is your mother. She has enough to carry right now & doesn't need the guilt.

Sounds like a healthy eating plan + daily exercise may be mandatory for you to relieve some of the stress. Caregiving is a gift of love & an enormous stress. It is taxing mentally, emotionally, physically & mostly carried out in silence b/c the patient has enough to carry & process. Hopefully you have friends, others to which you can confide.

Best Wishes
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 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

AppleTree
Posts: 247
Joined: Fri Mar 18, 2016 8:16 am

Re: A nightmare X 2?

Postby AppleTree » Sat Oct 27, 2018 11:37 pm

Take a deep breath. 1 step at a time. Schedule a colonoscopy so that worry is off your list. I find it very relaxing to journal or color in one of those complex coloring books at night. At first I thought it silly, but on a friend's recommendation, I continued. I have a daily type of journal. When I first started I always had to write the weather...just to get me started and so I was not looking at a blank page. I end each day with a sentence about something that I was thankful during the day. These 2 activities have really helped me end my day on a relaxing, peaceful and thankful note.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

Punky44
Posts: 119
Joined: Mon Oct 01, 2018 4:29 pm

Re: A nightmare X 2?

Postby Punky44 » Sun Oct 28, 2018 12:07 am

Thank you both so much. BS, you are so right—I will probably need to keep coming back to re-read your words when I start to spiral. AppleTree, thank you for the suggestions for relaxation techniques—I need alllll the advice I can get in that area. Today I had to listen to a mediation app while doing dishes bc I felt like I couldn’t breathe :/
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Punky44
Posts: 119
Joined: Mon Oct 01, 2018 4:29 pm

Re: A nightmare X 2?

Postby Punky44 » Tue Nov 13, 2018 6:36 pm

After a tear-filled consultation at the GI they were able to squeeze me in for a colonoscopy this Friday. I am praying everything will be ok.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Nohogirl
Posts: 87
Joined: Sun Oct 14, 2018 12:15 am

Re: A nightmare X 2?

Postby Nohogirl » Tue Nov 13, 2018 9:25 pm

Praying for you Punky. Come back with good news.
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox

Trying
Posts: 85
Joined: Sun May 13, 2018 10:11 pm

Re: A nightmare X 2?

Postby Trying » Tue Nov 13, 2018 10:59 pm

Im sure everything will ne ok but understand your anxieties.
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

dliu
Posts: 41
Joined: Sun Jun 03, 2018 7:16 am

Re: A nightmare X 2?

Postby dliu » Wed Nov 14, 2018 3:07 am

Hi Punky44,

I feel you. I don't have an anxiety disorder and yet suffered from severe panic attacks for about a month and a half when my mum was first diagnosed, and started being more aware of my own body, so any small ache became a big thing in my head. Worth getting checked, but not worth panicking over, as you have enough on your plate to panic over. It gets a bit better with time in a strange way, because you learn to adapt to the situation, I think. This forum was a great help. Stay strong, and most importantly take care of yourself.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Punky44
Posts: 119
Joined: Mon Oct 01, 2018 4:29 pm

Re: A nightmare X 2?

Postby Punky44 » Fri Nov 16, 2018 11:20 am

I am happy and relieved to report my colonoscopy was clear! I was so happy I started sobbing and the nurses were like um..why are you upset. Ha.

Due to my family history, they said I should do another in 5 years.

Thank you for helping me through this with your advice. Now I can focus 100% on my mom without this in the back of my mind.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Kelism
Posts: 6
Joined: Thu Oct 25, 2018 1:23 am

Re: A nightmare X 2?

Postby Kelism » Tue Nov 20, 2018 1:54 am

Hello. I’m 35 & caregiver to my mom as well. I too fear the nightmare x2. I too have anxiety about it and sometimes brief panic attacks. So many of my friends just agree that what we go through warrants it. Some have suggested cbd edibles to take the edge off the anxiety (now legal here in Canada). Hope your test comes back clear. You’re not alone with the way you’re feeling about your situation.
Caregiver for Mum (67)
07/17- ER CT finds bowel obstruction, ER sigmoid colostomy.
8&10/17 negative scope 01/18 - NegativeCT
03/18 - Ask for reversal. 05/18 - CT shows shadow
06/18 - MRI finds large invasive recto sigmoid tumor
07/18 - Meet with Oncology team
09/18 - Start Xeloda/25 rad treatment, 2 blood trans. PET scan
10/18 -PET: Large invasive tumor,14 mm liver met,lymph nodes,uterus & intestinal Invasion,blocked Ureters and swollen kidneys.Finished chemorad
11/18- palliative care


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