The Colon Club

Hello all! My wife been reading this forum and going crazy doing so for months and I finally gave in and looked! I am 37 years young 3 kids 14,13 and 2! Wife of almost 15 years at my side most days! Little history may 14th 2019 wake up from colonoscopy with cancer scans and 2 days later stage 4 with liver met. 6 cycles of folfox then 1 week radiation for 1 week and then surgery. September 19th Wake up with a stoma and thought cancer free. Pathology reports came back and positive margin and 4 of 9 lymph active. Now on 6 more cycles of folfox and then onto another surgery to remove all and be put on a permanent colostomy. Anyone in the same boat or can relate?

Not in the same boat. But I want to ask you to stay positive ! I know it's difficult at times, but you've got to do it and can. It sounds like you and your doctors have a great plan, so hang in there ! Andre

Different boat too... Welcome, hopefully you can find support here like many of us do!

Welcome,

A little bit different boat but pretty similar. I am older but still have my youngest at home who is almost 13. I had similar surgery but only 1 lymph node and they were able to get it all the first time.

Sorry about the permanent colostomy but in the end it might be easier than dealing with the after effects of LAR surgery. I went into the surgery thinking I would have a colostomy so was surprised when all I had was an ileostomy. There is a big learning curve once everything is reattached and many deal with a lot of issues.


Hang in there you can do this!

Dave

Thanks for the kind words! I should have really paid attention to all this talk from the drs and stuff I feel so nieve to everything. I have relied on my wife who is only 33 and a nurse to take in and know everything going on with me. Just got phone call from my primary surgeon and treatment plan head and my MRI I had last Monday shows they burned the liver completely and no signs of cancer, now to finish this cycle of FOLFOX which is only getting harder!

I notice that there's an organization in Virginia that may have something of interest to you.
https://www.mclnational.org/

It looks like they have a branch concerned with providing support for servicemen and caregivers. Maybe you and your wife could look into this to see if there are any relevant support options in your particular geographical area:

https://www.vets4warriors.com/

I can understand your leaning on your wife for medical stuff, after all, she's the professional! When I married my husband, a finance professional, I admit I kind of stepped back from all of that stuff and let him take the lead in that area. At the same time, as a cancer patient it really is good to know as much as you can so that you can be empowered and an active decision maker and partner in your treatment.

You could start by creating a signature here that describes your history. I guess, since you have had radiation, that it is safe to assume that you have rectal cancer? Do you know your TNM status, your genetic information? (KRAS, BRAF, MSS/MSI, etc) If you look at the sigs of some of the other rectal cancer folks here, you will see what might be included.

Best to you and yours!

Just wanted to wish you a warm welcome. And confirm, like others have, that it’s not so unusual for a caretaker to take the lead when it comes to treatment, etc. Especially given a wife who is a nurse!

My husband is an art director of all things - he works in advertising and we always joke that I handle logistics. But man, once I got diagnosed he was reading everything he could, and talking with doctors about the sigmoid colon and all sorts of other stuff that was totally new to us! To this day, he watches my labs like a hawk, and I feel very lucky to have a caretaker who is so invested.

How many more FOLFOX cycles do you have? I feel like after round 7 or 8 they started to get a bit easier for me. I hope that will be true for you, too!

Hey Paul, also a 37 yo male here so just wanted to say g’day. History’s in the signature; feel free to shoot any questions.

Cheers
Rob

Hello, sorry you find you here. Just wanted to say this forum has been my best discovery. I just turned 37, and I’m the only and primary caregiver to my husband.

I do all the reading, researching, cooking, caring, and keep track of medical records, organising hospital visits (he has been treated in 3 hospitals in 2 countries), etc. I told my husband to focus on recovery and going through chemo so that I can do all the other stuff to make it easier for him.

We’re expats and don’t have any family / little friends around us, I found this forum to be a great support group. If you / wife wish to DM me, I’m happy to chat

Take care and wishing you a good road to recovery.

Hang in there!
Siti

Hi Paul,

Welcome to the club. Wish none of us were in it.

It is great you have a medical professional in the house. Neither my wife nor I are, so it has been a lot of catching up for us.

There is also a lot of experience on this board from the patient’s/caregiver’s side, which is great to tap into.

Safe to say no one has the "same boat" here, but there is a ton of great inspiration, support, guidance and so much more positive things to find on here.

Best of luck on your journey!