Hi Will

I am so sorry for you and Lillian. What a shock. I went through a similar process a few years ago. Stage 4 Squamous Cell Carcinoma tongue right side and also eventually found in one lymph node on right side of my neck. Doctors removed right half of my tongue, all nodes on right side of neck, trach tube for breathing, feeding tube for fluids/food. The tongue flap and artery came from my left arm as i am right handed. They rebuilt my forearm with flesh from my upper thigh. First indication of a potential serious issue was late Feb 2020. Positive biopsy was Mar 12. Surgery was Apr 1 and 60 Gray Units of radiation completed Jul 8. I was also warned of all the potential challenges - speech, eating, drinking, hair loss, permanent swelling, major dental issues (from rads), loss of flavor (from surgery but more from rads), etc. BTW, social drinker and never a smoker.

Let me preface the rest by saying everyone is different and everyone responds differently/recovers differently. Having said that, here is my experience and thoughts for you both. One of my best tools was writing. I started writing in journals as soon as understood how serious this was. Sometimes i would wake up at 2 am and write for hours - everything from memories of my childhood to questions i had for my medical team. I kept a book for thoughts and fears and one for specific medical notes. I went in for surgery a few weeks after California shutdown for Covid. My wife had to leave me at the front door. Doctors said approximately 2 weeks in the hospital. One of the key items was monitoring blood flow in my neck to my new tongue. I was told if your new tongue looks good after a couple days, odds are strong, after 7 days, essentially 100%. I was able for form words soon after surgery and walk with a spotter around the ICU. So many tubes and sensors that it took 5-10 minutes just to get out of bed. I learned to use the passy muir device which helped my speech. I was able to go home without the trach tube after day 8. The first few days were the hardest. I am happy to fill in details here. For some, they want to know, for others, it's overwhelming. I recovered at home still on a feeding tube. That came out after about 3 weeks. The key there was learning to take fluids with the tube in place. That gave the doctors confidence I could swallow without aspirating.

Radiation treatment started in late May. That was fine for the first 3-4 weeks. The last two were rougher as it has a cumulative effect. Burns your mouth and neck. Can have sores and sensativity. Loss of almost all flavors. The list of things i could eat got really short.

The doctors asked me to put on weight before surgery. I was about 165lbs and 5'-11" so fairly lean. I added 5 lbs in a couple weeks. Lost 15 lbs post surgery. Got back up in the low 160's before rads then lost another 15 in rads. I had to focus on eating. When i was on a feeding tube, it was hard to get all the calories in me. When I switched to regular food, i just ate slow. It took up to an hour sometimes as i had to learn how to manipulate and swallow. A vitamix or similar is key. I would dump avacados into nearly everything I mixed for high calorie count.

A couple hospital tips. Bring a long charge cord for your phone so you can easily use it from the bed or chair. Preload your favorite movies or books on tape as wifi can be spotty everywhere. I brought a small family picture with me and kept it by my side the whole time. Great for motivation and nurses loved to ask me about it. Helped me practice my speech. I also brought a writing tablet (boogie board on amazon for $30). Super simple way to write notes back and forth to nurses and doctors. Ear pods that don't have to be charged were useful too.

My recovery from surgery could be judged much faster than that from radiation. After surgery, i could see some improvement every couple days. After rads, I almost had to look back every couple weeks. Reading my old journal notes helped when i got frustrated. I would read back and realize i had come farther than i thought.

I live in Huntington Beach and love to surf and jog (and many other things but those are my current passion). It took a couple months before i could surf again but i was walking quite a bit even in the hospital. I was able to jog about a mile (super slow and easy) after about a month. I got stronger slowly. It took many months to feel my surfing and jogging was back to pre-cancer levels. But, I got them back. My speech is nearly normal and I can eat most anything. Foods are still slowly coming back as spicier foods are still too strong for me. Alcohol tastes terrible. I basically just drink coffee and water now. No biggie, it wasn't a big part of my life before.

A couple readings - a short internet story - google "getting cancer is like finding a lion in the fridge". Makes me laugh and cry every time. A very detail booked is called "Anticancer." Took me many weeks to get through it as it is sooooo content rich.

I did receive a gift from cancer. My faith grew in ways that today still amaze me. I look back and wonder how i missed that piece of my life for 52 years. Obviously, i would never want someone to go through this. But, there can be beautiful things that grow from it. There will be brutal days but from that we can grow strength and bond with all our loved ones.

Sidenote - I have been to Cork and absolutely loved it. Such a unique spot in a beautiful country.

If you want more details (happy to get as detailed as you like), let me know. I have been an open book about all this with anyone who is curious. We can set up a private exchange through this forum so others don't have to read it.

You can do this. Keep us up to date. Stay safe and keep the faith.

Nels