Hi, I’m Derek and feeling fortunate to have joined this community today. Originally diagnosed with scc and had surgery in 2019 partial glossectomy and neck dissection. Reccurant scc diagnosed in June 2024 and I’m struggling mentally and physically from scc returning a 2nd time and the surgeries I had in Aug 2024. I was very much overwhelmed at the thought of having c again and due to the location and size of tumor the team was unsure what methodology would be used during surgery meaning would a partial glossectomy be adequate or would a flap be required. I definitely was not ready to awake from surgery with forearm flap reconstruction, a tracheotomy, wound vac on arm, skin graft on leg, ng tube. Perhaps I did not research or ask enough questions regardless it was overwhelming. Then 1 day after surgery I got Covid and then my situation was even more challenging. Unfortunately I couldn’t take anything by mouth and was scheduled for a g-tube surgery. After leaving the hospital recovery was very difficult as I live alone and was not equipped for the struggles that were to come. Very frustrating experience with medical team and referrals for post op care. Ultimately I found local PT and lymphoma clinic that were awesome! Did not go to SP or any other specialist. I now have a very real fear of going to hospital even for routine follow up. As much as I try to stay positive I struggle with the idea of when c is going to return and not if…
Kind regards-
D

Hi Derek,

Welcome to OCF forum and thank you for reaching out. I am so sorry to hear of your 2x cancer experience. About 5 years ago, I went through similar procedure to your recent one. And, even though my team prepared me for waking up with nasal feeding tube, neck dissection, flap surgery, arm and leg transplants, etc, it was still shocking. Amazing how long it took just to get out of bed and go for a short walk around the hallways. And, I had a family to help me once I got home. I recommend a book that may help you - Anticancer by David Servan-Schreiber.

I am curious, your first time through, did you get any follow up treatment such as radiation or chemo? How about this time?

Stay safe and keep the faith,
Nels

Hello Derek,

Sorry to hear you had a recurrence and woke up from surgery without knowing what was possibly or likely going to be the outcome.

I never would have imagined they would skip over those possibilities when they were discussing it with you before.

I mean mine was tiny, but I told the surgeon I understood things can change when they have you on the table, and I was of the mind to "get it done" whatever it takes, despite a planned very minor surgery in my case.

Now having read your story, Nel's and other's I am trying to catch any possible recurrence super early so the next surgery is equally minor and just another small chunk of tongue.

I would have no idea what to expect for something like what you guys went through, and if my medical team didn't pound it in my head and prep me mentally for what to expect, it would seem kind of like getting hit by a train, getting knocked out and waking back up with half your body not working.

I hope you are adjusting well, living alone and dealing with all of that, THAT I can't imagine. Glad you found some local support, and hopefully you keep expanding that circle of support.

Sorry you have had such a rough go with follow up and post operation care, but that lymphoma clinic and PT sounds like a Godsend, hopefully you can cling on to them and find others like that.

COVID and recovery with all the complications...ugh...I salute you sir! You put up the good fight and made it through.

I hope you readjust and find a good quality of life, Nels talks about how we was able to gradually reclaim a pretty active life and thrive, and can figure out how to remain vigilant, without letting the worry take away from living your best life each day.

Take care of yourself, and I wish you the best.

R/
CQ