Hi all......
wishing everyone well!. We are almost 4 months out of treatments and PET scan is scheduled this Thursday, June 8th.
We took a bit of time these past few weeks as his recovery made such positive strides.... took a few short road trips, short weekend away and some time to get in the kayaks and ride a bike together. Two weekends ago.. we rode a few miles on a lovely woodland trail, and kayaked in the afternoon ........ spent the day outside in the sun. we were so delighted and had such a "good day"!!!

His trismus was improved some, swallowing was less painful, tastebuds were back and even figured out why he had neck and shoulder pain * rotator cuff partial tear .. PT will be sufficient.

BUT.... now. he seems to have lost mouth opening diameter ..almost overnight. he is having pain near his lower jaw on the left side (tumor side and earache/pain... all this mostly when he moves his mouth to eat,, sometimes talking. He had some more noticeable swelling on the left.. neck, chin etc........ he is doing lymph drainage exercise alllll the time.

but this is so discouraging for him. he is uncomfortable and no longer can eat some of the foods he was able to just a month ago.

I am calling the Med onc office to just to let them know in anticipation of our apt on Thursday in case they want to think about possible adding bloodwork or ??? on to the day.... PET scan and several appts with the provider team.


I don't know.... what to think .and am trying to NOT think it could be recurrence ............. not sure if this is now post RAD scarring/fibrotic tissue, is it lymph? all of the above.

keeping him comfortable and supporting his spirit is getting harder. he doesn't take a lot of meds and says the Tylenol, tramadol, aleve etc aren't helping as much and he is VERY reluctant to head back to narcotics ... he really disliked, coming off of them after his treatments.

and his spirit.. he is sooo discouraged ( understandably)..........


some days .. I hear... I just want to go to sleep and sleep all day... and I know that is his sadness and he even is aware this sounds of depression.

goodness.....he has so much to be grateful for and to... and we are so hopeful..... but also so nervous, worried and anxious.

thank you to OCF...and
anyone stopping by to reply