Damien,
As the other half of someone who has been through the surgery you and Katie don't want, I have to reach out to you.
Kris had his total Glossectomy and Laryngectomy 20 months ago. We too were horrified at the prospect of this huge and life changing surgery. But it came down to this. Have the surgery and live. Or, don't do the surgery and die.
It was a very easy decision then for us to make. I wanted Kris to live and with lots of encouragement and love, Kris realised that he too wanted to live. So much to live for and 3 lovely children to be here for.
Well, 20 months later and life is good. Don't get me wrong, it is quite different and we have had a lot to adjust to. But, it has so been worth it. Kris is doing very well and his health is good. He looks after our 3 acre property doing all the physical work needed. Actually I don't remember him ever being as muscled as he is now. He swallows all his nutrition, although it is liquid. We go out for coffees. In short he participates fully in our lives. We also had a holiday in Australia in August.
He speaks with a TEP valve, though I admit it can be quite hard to understand. But I get about 90% of what he says and so do our kids and his good mates. Strangers don't get it, it's a bit like trying to understand a very heavy accent, you have to get your ear in.
Please don't turn this surgery down because of what you think life will be like after.
I am just thrilled Kris is here with me and our family. The alternative was never an option.
Thinking of you and Katie,
Tammy

Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!