Floor of mouth cancer

Posted By: Mike young

Floor of mouth cancer - 11-19-2018 10:05 PM

First off thank you for haveing this website. It has helped me through a very terrifying time.
October 30 I had my surgery it was about 12 hours long. As soon as they finished and took me off ventalater i was awake and aware of my surroundings
My surgeon did an amazing job. Other than alot of swelling i looked just as i did before surgery. My family was amazed.
He removed most of my lower jaw and replaced it with tibia bone from lower leg. Its called a free flap
Also had to remove about 40% of the front of my tounge. I have pictures of me right after surgery and i really did look just the same. He also had to put in a treach tube. The incision was almost ear to ear but way under my chin. He took a skin graph from my upper leg to repare alot of my tongue and use as the flap i beleive. I had 4 drain bulbs on neck and upper skin graph area was vacuum sealed. Lower leg stapled back together.
Its amazing what they cam do with us
Fisrt week neck bulbs were removed. White cell count went up and was put on antibiotics. Unable to talk or drink. I spoke with pen and paper. Every hour nurses checked on me and the 2 flaps he created
In the second week the nerve on the right side failed so I will forever have limited feeling on that side. Left side took very good
Second week i was moved out of icu to another room
White cells came down and they were able to remove feeding tube in nose. Very incomfortable place for that. They installed a peg tube in my stomach for constant feeding. Speace therapist gave me passie muir speaking plug for treach tube and heard my voice for first time. Was very exciting for me. Started giving me ice chips also exciting. Nothing in mouth for week and a half. The wetness felt so good. Then on to frozen smoothie. I could tast for the first time
I cried like a baby. So good to taste and smell again
Wasnt sure i would be able to. Every day therapy for speech. Almost 3 weeks in hospital people understand my speech thin liquid diet on rehabilitation floor. Walking every day with and without walker. Swelling way down. Looking to be released either day before or aftet thanksgiving
Treach tube down to smallest size. Maybe out next few days. Still have boot to protect leg. Will be starting chemo and radiation in about two weeks
He remobed about 70 lymph nodes. Only 3 tested positive. Found microscopic trace of cancer in chin area he said should be gone with chemotherapy
He said it was one of the largest tumors he has removed. I have had so many happy days and a few sad days but i am alive and i have a second chance at life. I know this is a long post but anybody whos going through this trust your team your family and friends and you will get through this even when you feel lost they will pull you through this. Im not out of the woods yet but i do see the road ahead of me
Thanks everybody
Mike
Posted By: KristenS

Re: Floor of mouth cancer - 11-20-2018 04:07 AM

Way to go on your recovery! Sounds like you're making great progress! Happy Thanksgiving!
Posted By: DeniseG

Re: Floor of mouth cancer - 11-20-2018 05:01 AM

Way to go Mike! Best of luck with your continued treatment!
Posted By: Crystal J

Re: Floor of mouth cancer - 04-14-2019 12:47 AM

Dear Mike,

Please keep me ( and us) informed on your progress.
Our stories are similar... I am almost 2 years out now -- but I am 100% dependent on my G tube, and have 0 ability to swallow solid food.
And they are being generous allowing me liquid diet, because I do aspirate into my trachea and lungs.
Tonight, I have my 5th Pneumonia, since my cancer diagnosis.
Thursday I had double surgery in the Main OR, and my 2 Head & neck surgeons operated on 2 different sites. Awaiting 3 new biopsy reports.

That's the cool thing about the site here-- we can talk with others who have walked in our shoes. I vividly remember all the milestones you talk about, and the ones that just won't ever happen, too.
We just have to create our New Normal.

Take very good care,

Crystal
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