Considering sucked

... I thought about it.  But I got through and found my new life.  Found out how many people still needed me later that I didn't know would then.  Made peace with my new me.  It did get better.

Many Hugs and best wishes,

Crystal

Drivingdaisy said:

Angry

What really gets me I was doing well.  Treatment was horrible but made it through & had saliva the whole time.  Also kept my taste buds and was eating steak 3 months post treatment.  Did so well My Drs were shocked.  Than about 7 months into recovery woke up to No saliva.  My ENT explained it was delayed Radiation damage the scared My ducts.  My saliva had become so thick from Chemo that though I made it in the Glands it could not get through the ducts so dry, dry mouth.  Tried every products offered to me. So constantly thirsty & drinking to much can give you a form of water poisioning.  For Me it drops the ratio of water to sodium to balance my electrolytes.  Gets to low can send me to have a seizure, than a stroke coma, & possible death.  So to all you out there with extremely dry mouth how long can you go & just not drink cause that’s all I get as how to manage this....just don’t drink anything.  Also take salt tablets so dry you out more.   Need to be blood tested often especially if I feel low.  This is why this surgery with the specialist was so important.  Hellious wk, just getting there & settling in before the surgery.  Weather took a nose dive from 80 to 30 w/snow in Baton Rouge.  My sinuses are a mess, the dry air made my mouth so dry, than the flying back to fla was so uncomfortable.  So right now no saliva & mouth so, so dry.  I can’t live a normal life or travel to hard .  Go thru a large bottle of biotin a week just trying to rinse so I won’t drink. So of course things I was eating with saliva , out the window.  My surgeon is still optimistic, hot rags massage, lemon , You all know the routine.  Just want My life back,  losing patience.

I can relate. The after care is horrible from treatment. I have found ways to deal with most issues on my own as it seems drs wait until it is severe to do anything. I dont do opiates. I like my brain. I carry water with me everywhere. I cried when I couldnt taste cherries. I have sinuses issues forever and I told them the mask was causing it. Try different things. Throw a bunch of darts out and maybe one will stick. You arent alone. I hope you can feel the compassion and energy. Good luck.

So sorry you're going through all this crap.  I cannot relate but can only hope that time will improve matters. At the very least, invest in a decent humidifier.  We had to get one called a Vornado and it helps greatly.  Now they make one that'll cover 1000 sq ft. It's on my list of things to upgrade to.

Time did damage so we all hope that time will also heal your mouth.  Positive thoughts heading your way.  It breaks my heart to read your story.

So sorry that you are going thru such a hard time.  Maybe you could also rinse your mouth often to help relieve the dryness.  Hang in there and don't ever give up.  I too went thru a very depressed time.  It took me nearly a year to get any  energy back.  I was on a feeding tube for a year because my throat had closed nearly all the way up.  I have repeated egd's with dilation to keep it open. But eventually I did feel better. I hope you do too.  Sending prayers.

it is sad to hear your frustration and I can relate.  It’s been 13 months since I finished treatment and all seemed to be going well until I got blood clots in my leg, fibrosis in my neck that it feels Ike dry leather, dry mouth that doesn’t go away,(carry a water bottle everywhere I go) trouble swallowing and swelling in my cheecks that everyone says I look like a chipmunk. The list goes on and it made me angry and frustrated for awhile but life goes on.  

No I will never be the same and accept the fact it is what it is.  My energy is now focused on the important things in my life, family, friends and even work.  Rather than sitting at the dinner thinking about how eating no longer fun I find pleasure in watching my grandkids cramming more food on their face than in their mouth. 

I hope you will find different things to appreciate and enjoy because it really does beat the alternative.  And for me I also draw strength from the success stories we read on this blog so please make it a success for those of us who need it.

Best wishes for you.

Drivingdaisy said:

Angry

What really gets me I was doing well.  Treatment was horrible but made it through & had saliva the whole time.  Also kept my taste buds and was eating steak 3 months post treatment.  Did so well My Drs were shocked.  Than about 7 months into recovery woke up to No saliva.  My ENT explained it was delayed Radiation damage the scared My ducts.  My saliva had become so thick from Chemo that though I made it in the Glands it could not get through the ducts so dry, dry mouth.  Tried every products offered to me. So constantly thirsty & drinking to much can give you a form of water poisioning.  For Me it drops the ratio of water to sodium to balance my electrolytes.  Gets to low can send me to have a seizure, than a stroke coma, & possible death.  So to all you out there with extremely dry mouth how long can you go & just not drink cause that’s all I get as how to manage this....just don’t drink anything.  Also take salt tablets so dry you out more.   Need to be blood tested often especially if I feel low.  This is why this surgery with the specialist was so important.  Hellious wk, just getting there & settling in before the surgery.  Weather took a nose dive from 80 to 30 w/snow in Baton Rouge.  My sinuses are a mess, the dry air made my mouth so dry, than the flying back to fla was so uncomfortable.  So right now no saliva & mouth so, so dry.  I can’t live a normal life or travel to hard .  Go thru a large bottle of biotin a week just trying to rinse so I won’t drink. So of course things I was eating with saliva , out the window.  My surgeon is still optimistic, hot rags massage, lemon , You all know the routine.  Just want My life back,  losing patience.

I'm sorry to hear that your recovery has gone so far south.  I hope that in time you get stabilized again and back on an upward trajectory.  Back in my old'in days, I too suffered from desert mouth, and industrial grade viscosity mucus.  I was on a PEG tube, so there was no drinking water to alleviate the dryness.  I had small spray bottles of Mouthkote with me and in all of my vehicles, which worked well to keep my mouth moist.  If you are not already doing the misty routine, I recommend experimenting with the sprays to see how they may work for you.  Back in 2011, after I had my laryngectomy, my saliva glands miraculously, emerged from hybernation and came back to life, so I had the great pleasure of tossing all of my spray bottles.  I wish you a Happy New Year with improved recovery.  Hang in there, take one minute at a time when you have to.   You Can Do This!