Hi Hikerdeb,

I had the same diagnosis you did on 4/20/17, SCC on the left side of my tongue (tumor underneath my tongue). I was shocked because I never smoked, rarely drink, and try to eat a relatively healthy diet. I had a partial glossectomy on 5/9/17, and my surgeons took a flap of skin and part of an artery to graft onto my dissected tongue. I tried to be brave before surgery, for my family, husband, and 2 boys (17 and 14 at the time), but of course doubts creep in. So when I woke up from surgery, my first thought was, "Thank goodness I'm alive!" I spent 4 days in the ICU because that is the only place where the nurses can check on your tongue flap every hour to make sure it's doing well. As someone else posted, they check it with the Doppler and in my case, also a flashlight to visually examine it. Thank good for anesthesia, painkillers, modern medicine, awesome surgeons and caring nurses!

No one really told me what to expect immediately post-surgery, but for me I think it's better to know beforehand so you aren't shocked when you do wake up, like I was. I had an IV in my right hand, a central line, a drainage tube in my right forearm (they took the flap and artery from my left wrist, since I'm right handed), soft cast on left wrist/forearm, a drainage tube in my left neck where they had taken out the lymph nodes just in case (all clear, yay!), a urinary catheter, plus feeding tube in my left nostril. When I woke up I couldn't speak due to tongue swelling, brain fog, and couldn't really write due to all the tubes. So, my best advice to you is if you are able to have someone with you immediately after surgery, work out a communication system BEFORE surgery. For instance, one blink means yes, 2 blinks means no, sad face means you're in pain, etc. I felt so frustrated at not being able to communicate. I also felt somewhat violated because no one had told me I'd be in such a helpless and hooked up state after surgery. I think they did try to get me to sit up and walk around within 24 hours of surgery, once the urinary catheter was removed, but my memory is a little foggy due to the drugs.

You may be like me and worry about being bored since you'll be in the hospital for 7-8 days. So I packed my crossword puzzle book, magazines, and a book to read. HA! I didn't even want to put my glasses on for at least 3 days, much less think beyond, "Ouch, I need to press my pain button!" or "Ouch!" when the nurse on duty took a blood sample from my fingers to check blood sugar every time after a tube feeding, which was like every 4 hours. I tried to remember which finger they poked last, and which side. At least they asked me which finger I wanted poked. The nurses will also constantly ask you, "What is your pain level?" If you are in pain and need meds, DO NOT say anything less than 4-5 or they won't give you anything. I only learned a few months ago (way too late!) that pain level 5 means you have pain severe enough to take an Advil/Tylenol/NSAID, so don't try to tough it out while you're in the hospital. I mean, someone has cut out part of your tongue and patched it up with wrist tissues, so a pain level of 8-9 is not unreasonable. I did find out only after about 2 weeks after surgery that a lot of my mouth pain was actually due to my mouth being dry, so you could try to sip some water if you're able to, and see if that helps while you're in the hospital.

I don't want to write a book here, so if you're interested in hearing more of my experiences please let me know.

Best of luck in your surgery! You'll be fine, the doctors and nurses will take good care of you. Don't hesitate to let them know if you need anything, because they'll try to keep you comfortable. As GI Joe used to say, "Knowing is half the battle!" Having faith, love, support and a great medical team is the other half.

Aloha,
Joanne

Hi Deb !!

You are undoubtedly one brave guy !

Late for the post! Wish I could have been of help to u !

Hope your surgery went well .. and you are doing fine.. as everyone has rightly said, i agree it would be a hard time, but u will come out of it stronger definitely!

I know this "why me" question pops up in our heads all the time, but it's time to face the challenges and believe me, this ordeal would all be over soon, it's just a phase in life..

My father was operated last year for oral cancer and things are slowly starting to fall in place now, though not completely. He also has a history of depression and it made him all the more emotionally devastated , coping up with the "why me" phase, pain, the drains, the nasogastric tube Feeds , the Iv site swellings and the facial appearance, to name a few. I am a pediatrician myself, and that's the time i actually realised what a disease as big as this means to a family and what the fear of losing your loved ones is.

I wish you a quick recovery, remember this, when things get tough, the tough gets going !!

And if you have time, you can go through this book called 'secret' by Rhonda Bryne ..I am sure it will be of help to you in the coming days .and you will shine through, as a stronger person ..

All the best!!

For what it's worth, plenty of us with HPV+ diagnoses for our cancer had no risk factors, either, and no reasonable explanation for how we possibly could have been exposed to it. There's a lot nobody really knows about that one.

I hope your surgeries went well and that your recovery is progressing! How are you doing? Any complications, or did all go smoothly?

A reminder that HPV can be spread by skin contact. Imagine someone not washing his hands after bathroom use. My Stanford doctors assume I got it through incidental, non-sexual contact. Not that it matters.