Hi Mjm62672, thanks for your reply, I hope your surgery went well!

I had my surgery Dec 7 and it was hard being alone. I was admitted for 8 days with no visitors allowed. I cried to the poor nurse one of the days as I was so frustrated with the trach and sad about my situation. I got through it though and felt great after surgery, I was lucky in that my pain was pretty minimal and I bounced back quickly in terms of my ability to eat and swallow. Unfortunately pathology showed the cancer spread to one lymph node with extracapsular extension so I now need chemo in addition to the radiation therapy.

I am on week 2/6 of radiation and starting to feel the effects - my mouth feels dry and tongue feels like I burnt it on hot coffee. Lots of foods are losing taste. Sensitive to tangy and acidic things so I am phasing out anything too spicy. So far not too much pain so I am hoping that persists!

The chemo was not terrible, I had 1 of 3 doses of IV cisplatin last week. They armed me with lots of good anti-nausea drugs and steroids so I didn't feel too rough, more like I had a bad hangover for a few days. However I am having some ringing in my ears so I am concerned about long term hearing loss. Meeting with the oncologist tomorrow so will find out more about that.

Having said all that, I hope you are doing OK! There are a lot of scary stories on here but take it one day at a time. Did you meet with a dentist to check your teeth? The radiation messes with your healing ability in your jaw so if you have any issues they will extract or do any necessary work before rad starts. I needed my wisdom teeth removed, but luckily everything else was good. You will also need to do fluoride treatments nightly forever, so make sure you get fitted for trays as well.

Sounds like we are on a similar journey but I am a few weeks ahead of you so if you have any questions don't hesitate to reach out! Good luck!