Dear Deb,
I'm so sorry for your loss of your brother in law. You and your family have been through a lot. Your families reluctance to openly talk about your diagnosis is understandable and they may be waiting for you to take the lead. If you want/need to talk to them let them know how you feel! They are scared too and perhaps uneasy with how to approach you.

I was also terrified before surgery the unknown causes fear. If you read through posts on this site you will notice claims that everyone's experience is different. This is absolutely true! I've met with and/or spoke to 10 different patients with almost a mirror image of my diagnosis. And EVERY single one reports a different combination of symptoms and outcomes. Before you sigh and feel frustrated I will share with you my personal experience. Please understand it may not be the same with you but I hope it will help alleviate a little fear and anxiety you are feeling right now.

My surgery was on 5/9/17 - partial glossectomy, removed floor of mouth on same side, reconstruction of flap to fill floor of mouth, skin graft from leg placed over flap drain inserted, removed Tumor from neck and 20 lymph nodes drain inserted, urinary Cath placed, feeding tube placed in stomach and chemo port inserted upper part of chest. Following surgery as I became more alert and I jotted down my thoughts during this time.

My first thought following surgery was OMG I made it through a 12 hour surgery and then I thought Thank you God for giving me a second chance. I was in the recovery room and my family kept telling me I did great. I was apprehensive about the putting my hand to my neck as I thought I had a trach. I didn't have to have a trach but some patients do to ensure they have a good airway. There was a lot of swelling in my mouth. It felt as though I had 6 hot dogs shoved in my mouth sideways so it felt bulky due to the swelling. My tongue was actually twisted up and over facing my cheek. I couldn't close my mouth due to the swelling so that was a little wierd but I knew in time the swelling would go down. I brought a mini whiteboard to communicate and that really helps. I did read somewhere to start swallowing as soon as possible but please check with your surgeon as I am not a doctor and your surgery may be different. It was hard to swallow but I wasn't in pain as they gave me meds to keep me comfortable. However, I NEVER felt wow I can feel part of my tongue is missing. But I did feel a sense of peace that the cancer was out of my mouth and neck and they said I had clear margins.

Once I arrived to my room in ICU there was a lot of scrambling with lots of beeping monitors nurses coming in and out and I was trying to get comfortable as the mattress was stiff and hot. The doctor ordered the temperature in my
room to be at 80 degrees to promote blood flow to my flap. It was so stinking hot there was sweat was rolling down my face and my hair was drenched that was miserable. 80 degrees doesn't sound hot but it's stifling! 😥

My left arm had a Velcro cast and an ace bandage from my finger tips hand all the way to my elbow. On the inside of my elbow was a tube that led to a drain It felt a little sore and only hurt a lot if I bumped It. They propped it up on a foam donut the size of a plate and wrote down on my white board to add a pillow.! This really helped. I also added a pillow under my right arm to reduce the pull on my neck.

I'm not sure when but at some point they started the tube feedings so I never felt hungry or thirsty the entire 8 days I was in the hospital.

Every hour the nurse would come in with a hand held box called a Doppler. There was a wire connected to it and a tube the size of a pencil. They touched my flap with this and you could hear the swooshing of blood flow. That's a good thing!

The skin graft on my leg was tender to touch and my husband came in to check on me and he inadvertently started patting my leg where my skin graft was and Omg it hurt! The pain of the skin graft was like if you fell down and skinned your knee in a 3 by 4 inch area.

I was able to make enough noise to get someone's attention but I wasn't able to talk or say words yet. My ICU nurse was very attentive but I noticed when I needed something and his back was to me he didn't acknowledge my primative grunts. I was like what the heck is going on. 4 hours later he tells me he is deaf. At times it was aggravating because I felt I couldn't communicate my needs or get his attention. It is a struggle and frustrating because you want to talk but you just can't. Try speaking with 6 hotdogs in your mouth words do not sound the same. Please Use the whiteboard!

I could go on and on but I think I covered your questions from your post!