Hello,
My experience, unfortunately, was not as rosy as some of the previous posters.
I don't want to scare you, or others reading the post, but feel the need to be blunt or honest with my experience.

But on the positive side - I am still here. I am a 7+year oral cancer survivor.

First off, as you read posts on the OCF website you will see that this cancer can be a very deadly cancer - even in young, and otherwise healthy people.

In my opinion, you need to view this as a fight for your life.
You need to be aggressive with the treatment. You do NOT want a recurrence.

You need to do what you have to do. Don't be afraid or worried about the pain, or discomfort, or what you will lose (teeth, speech, good looks, etc)
If you lose your life, those things don't matter.

You will be surprised what you and your husband can endure. You are fighters and can do it. There will be rough moments.

I think caretakers have a very difficult roll because they have to sit by & watch. That is hard. It is frustrating.

I had a Stage 2or3 diagnosis (T2N0M0) - left lateral tongue in Sept 2003. I was in the hospital for 10 days after an 11 hr surgery for a hemiglossectimy, neck dissection, and reconstruction using a free flap from my pectoral muscle.

To address some of your questions - and as you may have found out by now since it sounds like surgery was earlier this week:

Pain? That wasn't really a concern. In the hospital they will give plenty of medication and you can and should let the medical staff know if it is not working.

Rather than pain, I would describe it as more of discomfort. I had pain medication, I was groggy and sleepy and out of it for days. The frustration of not being able to move or do things was hard. This continued once home - not the pain, but the other side effects were very difficult.

I was not allowed to drink water or take anything by mouth. I had a nasal tube through my nose that was used for feedings & IVs. Rather than pain from surgery I found the tubes and bandages, etc. to be in the way or irritating. I couldn't drink water and my lips were dry. I didn't feel pain, but I couldn't roll over or get comfortable. I had a tracheotomy for a week, and didn't get out of bed for the first several days. I was amazed at how weak I had become and how difficult it was to simply walk or get up or use the bathroom.

As for whether you need to monitor him for breathing that may depend on the nursing staff - that is what they are there for and should answer calls.

I could not speak for about a week. I used paper & pen to write.

As for phlegm & mucus in the throat - that was a major problem for me and very uncomfortable. The 2 solutions used after surgery - the nurses would suction out the fluids through the trach opening. It is similar to the suction hoses used by dentist offices. The other help for breathing was that oxygen was provided - I don't really know the set-up since I was on the otherside of it and couldn't see, but I think there was a constant flow of oxygen through a tube that was taped to my face under my nose.

I would have to press the call button often to call the nurses to suction my throat. Honestly, this was about the worst part - not being able to breath is very scary, and before it got to that level it was just very uncomfortable. I don't know if it is possible to get any decongestant or allergy medicine that might reduce his nasal issues.

Communicating was hard since I couldn't talk, but I also was heavily medicated and under a fog so even thoughts were more basic, I think I did mainly hand gestures or head shaking for the first few days. I could grunt a little and make speech-like sounds after 5 or 7 days once the trach was removed and they put on a different type of trach fitting that allowed me to talk. I didn't use it much - writing on paper was more efficient.

I didn't have it at the time but I could see now using a cell phone, ipad, or laptop to communicate. Besides being groggy, the entire mouth, surgical area is swollen so moving a mouth to speak didn't even seem possible.

As for the grafting & reconstruction procedure. In my case the skin and tissue was used more to repair the surgical damage than to "reconstruct" the tongue, it was used to repair or reseal the floor of the mouth. My tumor was also "deep" or invasive so I think they had to do more excavation on the floor of the mouth/base of tongue. With the pectoral muscle they also rebuilt the left side of my neck where many lymph nodes were removed (fortunately all clear!)

I did not eat food at all while in the hospital or even at first when home. As many others here have found cans of Ensure or other nutritional beverages will become a main food source.

I don't think I was prepared for how much the long-term, or permanent speech effects would be. Also eating has been a life-changing issue. But as I said - view it as a fight for life. As many here would echo - the changes can be tough, but its better than the alternative.

Little things that helped me a lot: 1. take it one day at a time, 2. It could be worse, 3. Appreciate the improvements you made since the day before or the week before, not comparing it to life before cancer.

Hang in there! It is tough but you can do it!
feel free to contact me if you have questions or would like to talk.
Michelle