Dear Pam

I am so sorry that you are going through all this. I had similar surgery a few years ago - they took half my tongue, repaired with a flap and artery from my left forearm. They repaired the forearm with a flap from my upper left thigh. Had trache tube and nasal feeding tube. Right side neck dissection.

Other than the tubes, sensors, and drainage pumps connected to me, I was able to use my whole body as I came out of anesthesia. I was able to do short 5 min walks with a nurse that day. It takes a month or two for all the stitches and scabs to heal up. But, i was able to get out of ICU after less than a week and go home after less than two weeks. The docs told me two weeks is typical. I stayed an extra day as they said if i did, i could go home without the trache tube (just the hole in my neck). The nasal feeding was the most annoying thing. I kept catching it on door handles or my finger as i reached for something etc. I can still recall the taste of the small blueberry shake that was my first real food in weeks.

There are many things i can suggest. Bring a small simple electronic writing pad to make communication easier (boogie board is about $30 on amazon). I wish someone told me to shave all the sensor and surgery areas myself. I would have done a better job and had less issues with removal of sensors, etc. Doubt you will have that issue. I liked having a long power cord for my ipad and phone so i could easily stay powered up from a chair or bed in my room. Sleeping is hard because of all the wires and cables and you need to be careful to keep blood flow to the transplanted flesh/new tongue. When you get home, cut a V shape out of a few old t-shirts to make room for the trach area. It drains a lot and needs a lot of maintenance.

Get a Vitamix (discount thru OCF, i think) or similar for blending food and making it easier to consume once you get your feeding tube out. We rented a hospital bed for my return home and set it up on another room. it was nice to be able to incline and decline. Plus, I slept in short 2-3 hour periods, being in a different part of the house meant my coughing, bumping around, etc. was less annoying for others in the house.

The best advice i got was to keep a journal. One for medical data and questions and one for thoughts and fears and memories. It helped on my down days to read from a couple days or weeks ago and realize how far i had come. I think we tend to be too hard on ourselves and expect recovery too fast.

I was able to walk around the neighborhood once i got home and started a light jog after a month or so.

I recall recovery from surgery going faster than recovery from rads. Two years out from surgery and radiation and i have been full bore life (work, run, surf, travel, speech, food, etc) for probably 16-18 months now. So, i would say maybe 3-6 months on recovery. I was able to do many of my old activities such as surf fairly quick (couple months) but i was weak. It took many more months to get full shoulder, arm, core strength back.

Please ask any questions you want. I was lucky enough to jump on the phone with a guy who had gone through similar as this a few years before me. Just helped to talk live about my questions.

Keep the faith, you have been through a lot already, you can do this.

Best
Nels