Hello,
I know how devastating it is to receive this news,let alone be able to comrehend the amount of surgery that is required to attempt a cure.
We were in this position late february. Kris initially refused the surgery. The surgical team then told him that without it he would die a horrible death within 12 months. I also pointed out to him that this surgery could well save his life - he could be here in 20 years to celebrate our golden wedding anniversary. He had a chance of life by doing this. Without the surgery there was no chance. There is much to live for.
We are now 2 and a half months post surgery. Life has changed completely. I am still quite p'd off about the hand we have been dealt. But Kris is alive and we are coping. Yes the permanent trache is a major. So is the fact that his tongue is completely gone and even when he gets a speaking valve in 6 months time his speech will be difficult - to say the least - to understand. He has a permanent PEG, but amazingly he can swallow and half his Fortisip he takes via the mouth.
Maybe he/we are lucky that I am a practicing RN and none of his cares phase me.
What I am trying to say is that life is still good. We all adapt to lifes circumstances. Yes quality of life is different but it is not insurmountable. Life is still enjoyable and there is much to look forward to - an upcoming sons wedding and potential grandchildren.
Yes Kris's naked body looks different from all the surgery, but I dont care. He does have ongoing major shoulder problems but we are working on them. Communication is a problem but it is amazing how as human beings we manage to communicate with facial expressions and gestures as well as via the Ipad.
Do we regret having had this surgery -hell no. As a caregiver I will do anything to keep my man alive and to improve his quality of life. He is alive and we are living life.
Surround yourself with those who love and support you. Discuss your fears with them. Know that there is life after this major surgery. Then make your decision.
We will be here to support you whatever.
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!