Well, I too am sorry this isn't quite what you were expecting.
When we got Kris's treatment plan we never in our wildest dreams were expecting that. I even contemplated killing us both off by driving into a tree on the 3 hour drive home. Of course I quickly dismissed that. Children to live for . Future Grandbabies to live for.
So we just got on with it. Has it been challenging? Definitely. But you know, there is still good life to be had. Kris does have a good and worthwhile life. He keeps very busy. Yes social contact is a lot more restricted and going out for dinner takes on a whole new meaning. But he accompanies me and enjoys the social interaction . We are planning a holiday in Vietnam again this year. So yes, life will still be worth living. You just make adjustments.
If you have any specific questions I can help with, just ask.
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!