Hi David. I know that this is very scary.
We were in your exact position in February this year. We were told that Kris would be dead within 12 months if he did not have this surgery His initial reaction was "NO way. I'm not having that done" However the alternative was not great either, much worse.
Kris had a total glossectomy , Laryngectomy and bilateral radical neck dissection in early March. They took a free flap from his abdomen to fashion a tongue which simply fills the space in his mouth. It does not move or taste.
I will be honest and tell you that this surgery was not easy and the following months have been difficult. Kris's quality of life has been hugely impacted. But, everything is slowly getting better. He has been taking all his nutrition by mouth since the 4th week post op, albeit only liquids. He can also taste, but not smell.
Communication has been very challenging. He has used an IPad with Speakit app as the main form of "talking". Last month he had a TEP speaking valve inserted and is now learning how to use this. Of course speech without a tongue and voice box is difficult, but it is amazing how he does manage to form words that are indeed intelligible. The SLP doesnt know how he does this, or how he manages to swallow.
I want you to know that there is life after this surgery and it is actually okay. He is back driving again after huge issues with his shoulders post neck dissection. He goes to the gym and is back mowing lawns etc.
The main issues are that we are social creatures and life does revolve around eating and talking. This is difficult and others do not know how to deal with Kris. Perseverence, love and understanding. Kris and I recently saw our first child married and although he himself did not deliver the father of the grooms speech, he did "talk" with quite a few strangers. Other guests did approach him and sit with him for a while and they did have a discussion.
Life does have meaning and is worthwhile.
Ditto what others have said about a CCC.
I wish you the best.
Tammy