Great video Polly and so lovely to see you again and your journey. Love Jo in Australia xxxx
@Alpha_Omega_1541
11 ай бұрын
First off thank you for sharing your story. I’m here because I have a CTNNA1 variant that might have a link to gastric cancer. I’m in the early stages of unpacking this variant and apparently, so is the scientific/medical community. 5:40: I have to say something about this. You hit the nail on the head. Not trying to compare our surgeries, rather the importance of getting your body ready for surgery. I’ve had two partial nephrectomy (kidney cancer), same doctor, same procedure, same hospital. First time I sat around and worried for 3 months prior to surgery. Then 5 years later I had a second surgery, but this time I trained like I was going into battle. I started about 8 weeks out from surgery. I worked out 45 to 60 minutes a day X 6 days a week. This included cardio, strength/core training, stretching, and mediation. The recovery was completely different. I think it’s awesome you are going to make a video on advocacy. People need to know it’s okay to be a squeaky wheel. Pts and their families need to know how to escalate an issue and to who to escalate it to especially for problems that occur after “normal business hours” Examples might include when to involve the charge nurse, house supervisor, and in some cases the administrator on call. One last thing, you look amazing! I would have guessed your age in be early 30s.
@stephbonanni4398
11 ай бұрын
I’m glad I found your channel. I found out in August that I have the CDH1 mutation during a genetic test due to Lobular Breast Cancer. I just had a double mastectomy and I’m anticipating a gastrectomy in my future. I had a gastric bypass about 22 years ago so surveillance isn’t an option for me. Your advice is invaluable. Thank you!
@giaica816
8 ай бұрын
You helped me a lot. Thank you
@Three3Nill
Жыл бұрын
its amazing youre still around.. my dad had SRCC.. didnt catch it til stage 3. quickly made it to terminal stage 4 by spreading to his bone marrow gal bladder.. etc... SRCC is incredibly aggressive.
@BeetinGenes
Жыл бұрын
🙏🏻🙏🏻🙏🏻 so sorry for your loss. We lost our day last June. Our hearts are still breaking. Prayers to you. I had my surgery as a preventative measure.
@chazlon5061
11 ай бұрын
Best wishes and looking forward to the next update
@tgastrula6552
Жыл бұрын
I ran across your channel. My mother was just diagnosed with SRCC in the antrum of her stomach - speaking with the surgeon tomorrow. I dont know what to think right now.
@robbar42
Жыл бұрын
I am not using my wedge pillow either, your book is awesome! The crispy peanut butter bars....yummy! So proud you you are carrying on Karen's project, she will live trhough us! CDH1 is a hard journey against a sneaky cancer I really hope there's something that can be done for future generations. Thanks for the update Polly. P.S. Have you had the result of your recent biopsy? Hugs!
@BeetinGenes
Жыл бұрын
Thank you Bob! Results were negative! 🙌👊❤️ It is a sneaky one! I’m very hopeful for future generations! Sending my love to you! Your seahorse sister! ❤️
@erkanozer7975
10 ай бұрын
What do you use for loose stool? I have tried enzymedica but it made things worse.
@BeetinGenes
10 ай бұрын
I have not had an issue with loose stool. I’m sorry I can’t help with that. 🙏🏻
Пікірлер: 12