Recovery

Hopeithelps

Hi everyone.  It has been so long since I visited that I had to re- register with a new name.

I have forgotten all the abbreviations and buzz words, but I had squamous cell stage 3 cancerous lymph on right side of neck, primary site unknown. Had right side neck dissection, feeding tube, Erbitux (sp?) chemo and full radiation between eyes and collar bones.  Doctors recommended removing all of my teeth, but I declined.  Lost some hearing, all taste, all saliva, over 100lbs, thyroid, and ended up highly depressed.  You all know the drill.  

That was 7 years ago.

I wanted you to know that despite what you might be told, and as bad as it might seem now, you can have a great recovery.

My general MD got the depression under control after several weeks and it was gone after several months.  Still had to take the meds for a full year to prevent recurrence.

Recovery took a lot of time.  9 months after treatment ended I still had one large sore on my tongue that wouldn't heal and it precluded me from even thinking about eating.  So I asked my oncologist to remove that part of my tongue.  That actually made a big improvement.  But, it still takes time.  

Taste returned to 99% after about a year.

After three years, my saliva came rushing back.  It happened over a few days.  It's not 100%, but close.  I struggle with peanut butter and still have a bit a dry mouth some mornings, but nothing like the cotton mouth for 3 years.  I consider it fully recovered.

After 4.5 years I awoke one morning and no longer choked on food, of any kind.  After all that time of choking at least once every meal, it suddenly stopped.  My layman's version is that by continuously forcing normal food down and struggling through, I worked it open enough to be able to eat normally. I never bought into the idea of just having to change my diet to all soft mushy foods.

Also around this time I realized the numbness in my face and neck from the dissection was gone.

So, I still have poor hearing when my wife speaks, minor tinnitus that I rarely notice, very little shaving and the applicable scars.  I have to use Biotene toothpaste because the other stuff still burns a little.  I had a lot of cavities before my saliva returned, but my teeth are now doing fine.  I have to say that my new normal is pretty normal.  I hope yours will be too.

I can fully remember the pain and the darkness, and unfortunately you have to take that head on, hopefully with a great support group.  It will get better, and you will be a better version of yourself.

Fight and inspire.

stevenpepe

This is very inspring, thank

This is very inspring, thank you. I am currently in radiotherapy and experiencing the typical side effects. It's nice to know this won't all be permanent.

cardoza33

Thank you

I am 5 months out of treament.  This is nice to read.

SusanUES

Thank you!!!

Great to read this and it really puts a positive spin on recovery.  Everytime I read about any " improvement...eating an orange, the return of saliva, improved taste...it just makes me feel a ton better.  Many thanks for taking the time to post this very uplifting thread.

LiseA

I am on my third day of my

I am on my third day of my third week of radiation, and you have no idea how helpful your post was for me. I'll keep coming back to it whenever I feel despair on the horizon.  Thank you from the bottom of my heart!  

RottiesMom

I am just beginning my fight!

Thank you for taking the time to share you success!  If is inspiring!

Joanne

Barbaraek

Just what I needed to read

"After three years, my saliva came rushing back.  It happened over a few days.  It's not 100%, but close.  I struggle with peanut butter and still have a bit a dry mouth some mornings, but nothing like the cotton mouth for 3 years.  I consider it fully recovered."

Thank you for your uplifting post. we are 10 months out and my husband is so discouraged by the dry mouth and lack of saliva. It's good for us to remember not to give up and to be thankful for each and every day. When I look back, I can see how far we've come on the journey to a new normal.

Barbara

kduda64284

eating

I am 4.5 months out of treatment and can only eat yogurt and mash potatoes.  Most other softer foods get stuck and I get more full of water then food.   I am very very frustrated by this.  Does anyone have any suggestions for me?   I need to know this does get better.  From most of what I have read it takes a very long time for swallowing and saliva to come back.  The dry mouth is also very annoying.

bebo12249

Kduda, It will come. I'm 8

Kduda, It will come. I'm 8 months out, and saliva and taste are better but not normal. But things are very improving. Hopithelps, thanks for sharing your story.  

wmc

Thank you as it gives many the hope they need.

To hear a positive story is always good as it can give hope to those fighting, and the ones waiting for it to get better.

Bill

squiggyrn

hi my taste still has not

hi my taste still has not come back to per cancer status I still have trouble with spicy foods, use to love them now they are like putting acid on my tounge.