Not sure where to start.
I was diagnosed with oral squamas cell cancer in 2020. Had surgery to remove and do free flap. 2023 it all came back. They performed surgery again with another free flap. Surgery had alot of problems with the free flap. once finished, they did 35 radiation treatments. Finished November 2024. During all this, there was a 1mm area exposing the hardware. That turned into 5.5mm after radiation. 8/5 another surgery to close the exposed area. i've got 1 more week of home IV antibiotics and hopefully this will all be behind me. The antibiotics make me nauseous and the radiation has caused fatigue and no more salivary gland. It is really hard to work. I have been really good about staying active throughout this mess but its getting harder to do. I'm 59, Im a tower crane techniician so lots of weather and climbing involved in my trade. I love what I do and don't want to quit. I guess I'm just wanting to hear some feedback from others to sort of guide me in my future of dealing with this.
I will do my best to provide any info needed on my procedures' also would be interested to know if this may land me on SSDI and wherre or when to begin that.
Thanks for having me!
Mike

Hi Mike

Welcome to OCF! I am so sorry to read of your cancer and your recovery problems. I have some similarities to your experience and will offer some insights. I was diagnosed stage 4 tongue SCC in March 2020. Surgery April 1, 2020 and finished radiation July 8, 2020. Found cancer in one lymph node but it was still inside the node so no chemo only radiation. All check-ups and scans clear since then.

Surgery consisted of removing the right half of my tongue and all nodes on the right side of my neck. Recovery was rough but I could see improvement every couple days or so. Radiation was much slower. It was slower to impact me and slower to recover. I learned to judge my recovery from that in weeks/months. I would journal daily to track my recovery, food, exercise, practice speech by calling family and friends every day, meditation, prayer, etc. Occasionally, I would go back and read from a couple weeks ago and realize I had come further than I thought.

I was eventually able to eat most foods again (avoid the spicier stuff) and speak without much of a lisp. Food took years. Some foods came back in a couple months such as the softer/wetter foods/less flavorful. I had to be very patient with saliva. This has never returned fully and I was told never will. But, I can now eat crackers and other relatively dry items with water or just patience. I probably have about half my normal saliva. Total guess, not sure how to even measure that!

My work is not as physical as yours so that was easier for me to do part time from home and eventually come back to the shop full time. I did get active again soon as possible. I was walking around the hospital halls and dancing in my hospital room alone after surgery. Soon as I got home, walks were 1-2x per day. Eventually, feeding tube removed, I was able to jog about a mile. We just kept adding a little more. Today, I am as physical as ever. Did a marathon a couple years ago with one of my sons!

Happy to offer insights to anything else and hope this helps.

Stay safe and keep the faith,
Nels