Hello please help.

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Hello please help.

Postby O Stoma Mia » Sat Jan 19, 2019 2:35 pm

LPL wrote:... Please take Miss Molly’s advice and join the ostomy group she mentioned in her reply to you. As I understand it there are much knowledge and tips there.
Miss Molly’s post http://coloncancersupport.colonclub.com ... 18#p485818

Yes, I agree!
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61403&p=485818#p485818

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Hello please help.

Postby del » Mon Jan 21, 2019 9:56 pm

Just wondering if you have been discharged yet?
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2021 - 5 years of clean scopes/scans/bloods

RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Re: Hello please help.

Postby RaiderGuy27 » Tue Jan 22, 2019 7:34 am

No hopefully this week im on day #18

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Hello please help.

Postby del » Wed Jan 23, 2019 3:06 am

Hope there are no further complications and you are discharged this week. Keep us posted.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2021 - 5 years of clean scopes/scans/bloods

RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Re: Hello please help.

Postby RaiderGuy27 » Wed Jan 23, 2019 10:29 pm

They let me go home last night. A lil nerv pain cant walk alot or sit down for a long time not into to much pain. Main concern is my testicles are still swollen im scared about my sexual health in the future im only 34. Also my stomach looks a little lopsided on the side opposite of my stoma. I hope the swelling goes down and my body looks normal. :(
I know people think im crazy and dumb but I do regret the surgery. I felt i was in better health with the cancer before the surgery than how i feel now...

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hello please help.

Postby ginabeewell » Thu Jan 24, 2019 8:01 am

I too have had to come to grips with the fact that it's the treatment making me feel awful versus the cancer itself.

But the fellow at MSK with whom I spoke made a good point: in young people, the body is strong enough to manage the effects of the cancer, masking symptoms that would lead to earlier diagnosis in older, less strong patients. The body's seeming good health allows cancer to progress for longer, undetected.

Personally I told myself that if my body was strong enough to do that, it's strong enough to work with my treatment to get me to a better place.

Having said all that, I recently spent an unexpected week in the hospital with a chemo related infectection. It seriously sucked and I was conscious for the first time that the cure could cause more issues than the cancer. When I got out, I had lost a ton of weight and my muscles had atrophied. I just tried to focus on eating and gaining my strength back. Had a seven week chemo break and by the time I went back, I was ready to fight again and this round of chemo has been ok for me.

You did the right thing having surgery, and you too will regain your strength and learn to navigate your new normal!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Hello please help.

Postby Pyro » Thu Jan 24, 2019 11:41 am

RaiderGuy27 wrote:They let me go home last night. A lil nerv pain cant walk alot or sit down for a long time not into to much pain. Main concern is my testicles are still swollen im scared about my sexual health in the future im only 34. Also my stomach looks a little lopsided on the side opposite of my stoma. I hope the swelling goes down and my body looks normal. :(
I know people think im crazy and dumb but I do regret the surgery. I felt i was in better health with the cancer before the surgery than how i feel now...


Everyone has their own concerns and issues after these surgeries, you’ve let us know sex is a big one for you throughout your posts so I’ll chime in. Everything (for me, everyone is different) stopped working after my colostomy, the little blue pill doesn’t even work. I’m sure there are other men who’s “equipment” still works, but it’s either that or 6 feet under, priorities man.

I too felt better before surgery, if it wasn’t for an extreme bleeding episode going #2 I would have never known. All of my pain is from treatment! The surgeries, the chemo, the pills all lower my quality of life compared to the day before I was diagnosed, it sucks and I don’t like doing it either. You weren’t in better health before, the disease hadn’t presented itself yet. You’re not an island, we are all going through it as well. Your clinic probably offers counseling, use it.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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