Hi everyone! First off tks for all the posts I have read over the last few months on multiple subjects. Invaluable and uplifting! Now I am a member I would like to pick the brain of those who have had a very similar journey to mine. Hopefully my signature appears below and fills in those details.

Specifically I wonder about the stiffness and flexibility of my recently chopped up and cooked neck and tongue. Sure I am only a few wks out of treatment just curious how others have fared and what worked for them (I am starting weekly PT soon). And then there's the spit,...the endless fizzy, toxic spit. I know it will ease, just not soon enough. Timeline and tricks to employ there plse. Finally the precious PEG: I have just begun limited soft food swallowing and wonder what others have experienced re removal. I know everyone heals at different rates, just looking for some true accounts.

Tks again everyone, great site!

Welcome to the neighborhood..."The Club Nobody Wants to Join". Membership may seem costly but it is good for life.

Keep pushing forward with PT it will help the neck. Find the regimen of neck exercises and do them every day forever and you will benefit. Likewise with all your tongue exercises. You can progress as fast as you and your docs agree with. Push but not too hard to get back to where you were or were you are comfortable. We had a weight lifter years back that was back in the gym within a few short weeks and we had a salesman that traveled extensively back on the road in 2 weeks. I was commuting 400 miles and was driving it in 2 weeks because of all the equipment I had to haul like a nebulizer, TPN pump for feeding, IV pole and pump for fluids, humidifier, etc.

My spit is still foamy after almost 10 years but that doesn't mean yours will be.

Congrats on completing treatment and wishing you clean scans and happy trailsL

Ed

Welcome to OCF! Glad you have found the forum to help you with your recovery questions.

Here is a list of easy to eat foods which are great for patients who are relearning to eat after rads. Its all about texture when you have a very sensitive mouth. If you arent already using it ask your doc for a prescription for magic mouthwash to help numb your mouth so you can eat without so much discomfort.

Easy to Eat Foods List

Rinsing with 16 oz warm water, 2 tsp baking soda and 2 tsp salt can be helpful. Try rinsing at least 4 times daily. A water pic (on the lowest setting) with peridex can also help your mouth feel better. Some members have rinsed with seltzer water. I couldnt handle the carbonation. I still cant drink soda.

Hang in there, you will get there it just seems to take way too long.

Welcome Keith (I got your first name from your yahoo e mail address - let me know if I have it wrong!)

Your treatment is exactly the same as mine for my first cancer which was 9 years ago. Ed is exactly right with keeping up with all the physical therapy and tongue exercises. It is definitely a "use it or lose it" situation.

Do you still have a peg? Are you eating/drinking by mouth? Has the pneumonia been because you have aspirated something into your lungs? Let us know what the answer to these questions and we can be of more help.

For me, I never had a peg but when I started eating after surgery it was an extremely SLOW process. Eating a bowl of soup took an hour. Gradually, that improved. I was told that in addition to doing your daily word exercises for your tongue - the other excellent exercises are talking and eating. Both are natural exercises for this method.

Let us know, and welcome. You have not had an easy road so far and recovery takes time. Be easy on yourself.

Donna

Hi my sig is very similar to yours welcome there is light at the end of the tunnel you'll see it soon..

Thanks to all for the replies so far...just having good folks take a mo to show interest helps the (much needed) feel good factor in what can be a terribly lonely experience...tks again!

Duly noted on the exercises, i need to make it more of a priority and get them done, daily! Yes to the PEG tube, 99% of my calories still go down the darn thing. The pneumonia may have been via aspiration...the Drs never really pinpointed the cause but it was in my lung and blood (the common kind). This makes me a little reluctant to throw too much down the hatch as it does feel rather tight. Double-edged sword, eh? It wont loosen unless I use it so steady as she goes I reckon with the soups etc

Did anyone suffer bad ear pain after surgery? Fortunately i am off all pain meds now but i do still take Lyrica and it seems to help.

I still shake my head at how much time self-care from this condition takes: the feedings, the exercises, the dental hygiene, the massage and lotion, the meds....rinse and repeat! It is good to read it is all worth it in the end, cheers!