I’m Freaking Out

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crikklekay
Posts: 95
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

I’m Freaking Out

Postby crikklekay » Mon Jan 28, 2019 7:16 am

Hey guys, I know this is going to seem so minor but I’m sitting here in full panic meltdown and have no one else to talk to. I woke up to find my husband wasn’t in bed but lying down on the couch because he felt bloated and didn’t want to wake me. Apparently he felt bloated yesterday too but it faded so he didn’t mention it. My brain is wired to think bloated=intestinal blockage=cancer so as silly and minor as this seems it’s freaking me out. He’s going to call both his oncologist and surgeon to let them know so they can advise us but all I can hear is my brain screaming that he needs an emergency colonoscopy or scan or something.

All I can think right now is that this is cancer or reconnection issues from his ostomy take down. It doesn’t help that we recently had good news, he’s supposed to start a new job next month wth better hours and pay that could change our life for the better, so my anxiety is trying to convince me that of course it’s something horrible because we arent allowed to have that good of news without something bad happening to ruin things. (Yes I know I need to talk to someone, it was on my list of things to do when the new insurance kicks in)

I honestly can’t think of a normal reason for being bloated two evenings in a row, I tried googling it which was no help. There could be perfectly normal reasons for being bloated like this right?
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear

mpbser
Posts: 939
Joined: Wed Apr 19, 2017 11:52 am

Re: I’m Freaking Out

Postby mpbser » Mon Jan 28, 2019 7:24 am

I don't know anything about ostomies becuase my husband did not have one, but I wanted to say that I read your post and I'm sending positive vibes your way. Hope someone with helpful information chimes in.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Lee
Posts: 5980
Joined: Sun Apr 16, 2006 4:09 pm

Re: I’m Freaking Out

Postby Lee » Mon Jan 28, 2019 9:38 am

I am so sorry :cry: Living with cancer can be so challenging at times. Does he drank a lot of carbonated beverages? That can cause bloating. I got a soda stream for Christmas and I've noticed it I drink to much of it, I'm a bit bloated.

Try not to panic, but to talk to his Onc. Hoping it's nothing serious.

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 - 10 years and counting!

AmyG
Posts: 327
Joined: Tue Dec 25, 2018 8:08 pm

Re: I’m Freaking Out

Postby AmyG » Mon Jan 28, 2019 9:41 am

I think feeling freaked out is very reasonable. However, don't let it take over and send you in to full blown panic mode where you're picking out caskets.

Either it's something or it's nothing. You can't change it by being all spun up, but I realize that's easy for me to say. I don't have to deal with anxiety!

Take a deep breath, give your husband a hug and you guys will be okay.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...

crikklekay
Posts: 95
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: I’m Freaking Out

Postby crikklekay » Mon Jan 28, 2019 10:39 am

I was talking to a coworker this morning and while part of this is definitely cancer-anxiety the other part is that anxious feeling of waiting for the shoe to drop. If I listened to my rabbit-brain we'd be hunkered down and not doing any life-changing things just in case something happens. But after the support from this board and family we decided to push forward and move on, things have been going well and we are so excited for his new job opportunity. But my rabbit-brain has been whispering to me about what a bad idea this is, if something happens we won't be covered by FMLA and he could end up with no job or health insurance. I just haven't been listening to it because I didn't want irrational fear to keep us from living life. Insert two bouts of bloating and now cancer-anxiety brain and rabbit-brain are conspiring to keep me in a panic Mobius strip.

Thank you guys for the positive vibes, he has left a message for both doctors and we're just waiting on a response. He did have a bunch of soda and junk food this weekend as we had a large get together with friends. His CEA and liver function levels were going down in November so that has to give me hope too. I just need to find a way to ground myself in reality.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: I’m Freaking Out

Postby Maggie Nell » Mon Jan 28, 2019 11:56 am

He did have a bunch of soda and junk food this weekend as we had a large get together with friends. His CEA and liver
function levels were going down in November so that has to give me hope too. I just need to find a way to ground myself in reality.


That will do it! Has there been any issues with bloating after eating your cooking? Hope you find a way to boil that
bunny that's giving you a hard time. 8)

Congrats on the new employment.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

User avatar
mobrouser
Posts: 155
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: I’m Freaking Out

Postby mobrouser » Mon Jan 28, 2019 8:54 pm

crikklekay wrote:...... I just need to find a way to ground myself in reality.


Read the last 3 lines in your signature.

I know, it's a hard life we've been dealt and bad thoughts always seems to sneak in. But my eyes see more positive than negative in you and hubbie's situation.

Cheers,
mob 8)
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

del
Posts: 111
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: I’m Freaking Out

Postby del » Wed Jan 30, 2019 1:27 am

Bowel surgery can really mess up your digestive system. I think bloating is pretty common in CRC survivors. It's always worth getting checked out if it's concerning you, though. Has your husband had a reversal or does he have a bag?
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

Gravelyguy
Posts: 273
Joined: Thu Jul 05, 2018 6:03 pm

Re: I’m Freaking Out

Postby Gravelyguy » Wed Jan 30, 2019 9:56 am

I can’t add anything new other than I am praying for you guys and junk food and soda do not sit well with me post surgery.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

crikklekay
Posts: 95
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: I’m Freaking Out

Postby crikklekay » Wed Jan 30, 2019 10:21 am

John talked with his surgeon who told him to treat it as regular constipation, the Oncologist nurse just mentioned to call back if it persists. He's feeling a lot better this morning so hopefully it was just normal indigestion.

del wrote:Bowel surgery can really mess up your digestive system. I think bloating is pretty common in CRC survivors. It's always worth getting checked out if it's concerning you, though. Has your husband had a reversal or does he have a bag?


He had a colostomy bag but was reversed in October. When he had the bag bloating was a constant struggle because his stoma had shrunk down to 10 mm in diameter, but so far his gut hasn't given him any troubles since reversal. Maybe he found the limits of his newly repaired digestive system? I guess since he was handling food so well we thought his system was back to "normal" now. I hope that's it, he's eating smaller meals at the moment with no soda or junk food allowed to see if normal food will make him bloat again or not. Being blocked and bloated is how we found his cancer in the first place so I'll probably be a little wary of bloating for a while haha.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear

AmyG
Posts: 327
Joined: Tue Dec 25, 2018 8:08 pm

Re: I’m Freaking Out

Postby AmyG » Wed Jan 30, 2019 12:41 pm

Are you feeling any better about it now?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...

Nohogirl
Posts: 115
Joined: Sun Oct 14, 2018 12:15 am

Re: I’m Freaking Out

Postby Nohogirl » Wed Jan 30, 2019 9:41 pm

I so understand you and feel what you feel. Its enough for my hubby to make a sigh or if he goes to bathroom more than he normally does or he complains of bloating i become a total freak. All his doctors' offices know how i am already and the first thing they tell me when i call is please don't panic. I noticed that my husband gets bloated when we eat out( probably MSGs) and if he eats a little spicy even a small amount, he spends most of his day in the bathroom with not much results. Fiber like dry beans or broccoli makes him gassy and gives him painful discomfort in his intestines. He never had any of this food issues before his surgery not even when he still had the tumor inside him. So I guess surgery comes with a full package of digestive issues. Its a good think you are taking all the steps to make sure nothing serious is going on with your husband
Hopefully it is nothing serious and what will help you in the future, is to take notes of everything he eats during the day so you can identify what foods cause the bloating.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

crikklekay
Posts: 95
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: I’m Freaking Out

Postby crikklekay » Thu Jan 31, 2019 2:44 pm

AmyG wrote:Are you feeling any better about it now?


A little! It's nice to have others confirm that CRC survivors have bloating problems, and he's feeling a lot better now. He's still taking a colace once a day, so if over the weekend when he stops taking it if he still doesn't get bloated I'll feel a lot better. I'll still be holding my breath a little until his quarterly test results come back next month, but until then I'm doing pretty well.

Nohogirl we are definitely on the same page! I remember when John started having foot pain all of a sudden during treatment and it looked like the bone was protruding a little, I was terrified he had bone mets or something. But an x-ray revealed it was just a small bunion, and the pain was from wearing new shoes which were a little too small. I felt pretty silly, but I can't help it.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear

Nohogirl
Posts: 115
Joined: Sun Oct 14, 2018 12:15 am

Re: I’m Freaking Out

Postby Nohogirl » Fri Feb 01, 2019 5:23 pm

crikklekay wrote:
AmyG wrote:Are you feeling any better about it now?


A little! It's nice to have others confirm that CRC survivors have bloating problems, and he's feeling a lot better now. He's still taking a colace once a day, so if over the weekend when he stops taking it if he still doesn't get bloated I'll feel a lot better. I'll still be holding my breath a little until his quarterly test results come back next month, but until then I'm doing pretty well.

Nohogirl we are definitely on the same page! I remember when John started having foot pain all of a sudden during treatment and it looked like the bone was protruding a little, I was terrified he had bone mets or something. But an x-ray revealed it was just a small bunion, and the pain was from wearing new shoes which were a little too small. I felt pretty silly, but I can't help it.

I hear you dear. Same here. I made our surgeon sent us to a dermatologist right after my hubby was discharged from hospital from his LAR surgery just because one of his moles on his shoulder looked weird to me. I know the surgeon probably thought this lady went crazy (from the way he looked at me) but i couldn't care less. For me the most important thing was to get it checked and take immediate actions if needed or if it is nothing, have a piece of mind. People who have not dealt with cancer may think we are crazy but for us we know what beast can be hidden behind minor symptoms. Don't feel bad. My excuse is I better be safe than sorry.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: I’m Freaking Out

Postby Maggie Nell » Fri Feb 01, 2019 6:29 pm

[quote="Nohogirl]

I hear you dear. Same here. I made our surgeon sent us to a dermatologist right after my hubby was discharged from hospital from his LAR surgery just because one of his moles on his shoulder looked weird to me. I know the surgeon probably thought this lady went crazy (from the way he looked at me) but i couldn't care less.[/quote]


:lol: :lol: This reminds me of when I used to work behind the scenes preparing reports in histopathology labs, quite often with skin biopsies
the clinical notes would read, "funny looking mole".
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh


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