Your tips for recovery after 35 radiation treatments for tonsil cancer

@albion223

I am 5 months out now but taste is a daily frustration. It has gotten better slowly but still not 100 percent. I am pleased the PET scan was clear my oncologist and ENT both thrilled with my progress. My energy levels are better can complete 2 mile walk in 33 minutes. However, dry mouth and left still of mouth still feel strange. I am hoping from my research concerning taste says things should improve from 6 months which will be next month. I look forward to full flavor from anything.

@dragonfire
Hello. I had the same HPV cancer and treatment that you have. Mine was a Mayo Clinic in Rochester Minnesota. I am seven years out. All I can say is that the tough times are where you’re at. It will get better. The things that got me through is focusing on the bright side of everything around me. And, not focusing on beating myself up for making a decision. This decision that I made has given me life. Yes, there are challenges along the way and there were times when we broke down and cried our eyes out. But the end result is that I’m healthy. I’m well. I still have dysphasia and swallowing issues, but I am dealing with them. The gem in my life was my partner Jeanne as my caretaker. She was excellent at providing me with mental and physical and emotional support. And, I think that’s very important. Yes, I went through that phase of fried eggs, soft foods in the early stages of the period after my treatment. I got to the point right to eat almost anything. I had to be careful of pieces and parts floating around in my mouth, but you will adapt to what works for you.I was on a G-tube feed for several months because I could not get enough nutrition into myself because of my swallowing problems and also because radiation and chemo does so much cellular damage that takes a lot of energy to heal. I never gained the weight back. Which is OK because I think I’m in a good stable point. I’ve been plus or minus 5 pounds from the 165 that I currently am. So focus on the bright side and do your exercise exercises. You’re swallowing and exercises your neck exercises. Because, the fibrosis caused by the radiation can cause tightening of the muscle muscles not just immediately but for years. So start the exercises and continue them on a daily basis. I failed to do that and now I’m seeing the consequences of my not continuing those exercises on a routine basis. Hang in there my friend, life is good. Make it the best for yourself you can get through this.

I’m recovering well. I’m almost five months out of surgery, chemotherapy and radiation that tormented me physically, emotionally but I’m grateful for the recovery I’m seeing. The dry mouth is persistent but bearable. I’m nervous about the next CT scan next week. Pray for my results to be clear 😥😥😥😥

@roblem

I finally received a message from Tactile that my request was denied. I clearly misunderstood something during the home visit. I was quoted a dollar amount for the system that had insurance applied. Sounds like the appeal process is a waste of time. Is there anyone out there that has success with ordering this?

@linda90

I hope the best for your results. This is a health journey I wish none of us had to go through. I never expected something like this in my life especially being a non-smoker. I too have dry mouth issues but the medication I was given all I did was sweat it never helped my mouth issues. I sleep with a cool mist humidifier at night that helps some. I just hope my taste improves soon it is very frustrating.

@robpara Did Tactile say they'd work with you on insurance appeals? That's what they told me. My Mayo surgeon did all the approval work with my insurance.

@linda90 Being nervous about future test results is so very common. We can do nothing about the worry except perhaps to accept what ever way our path in life takes us. The six month check, the one year, the annual check to the five year point, these are all anxiety ridden. And then there are the common illnesses that our brains think the worst is about to return. That is our lot in life now.
Try to put your journey behind you and get on with life. Likely all will be fine. Good healing.

@lummy I agree with you doing all exercises, also I do my tongue due to nerve damage from radiation. Could you please let me know what kind of exercises you do for your neck? My neck is so tight my ENT doc. says it's frozen. I've been moving left to right, up and down...still no improvement. 🙁 Have a great day

Hi,
Yes, I’ll give you an idea about the swallow and neck exercises.
First, just to share about my tongue: My tumor was right on the motor nerve for the left side of the tongue. The nerve could not be saved. I have full feeling but the right side does all the work. I am highly sensitive to spicy foods due to the radiation. It is not as bad as one might think. It took a while with tongue biting multiple times a day to finally adapt.
I’m lucky.
Here is a description of the exercises.
They have helped me, but I have not been as consistent as I should have.
Have the best life.
Phil
Swallow exercises 3 x Day:
• 10 x hard swallows like swallowing peanut butter
• 10 x hard swallows like swallowing peanut butter but holding the tip of your tongue between your front teeth
• 10 x pull your tongue to the back of your throat and hold for 3 sec
• 10 x half swallows: start to swallow and hold when Adams apple goes as far up as it can - hold for 3 sec
• 10 x Using a soft ball the size of a softball or grapefruit - hold between chin and chest & compress the ball slowly with your chin then relax
• 10 x Using a soft ball the size of a softball or grapefruit - hold between chin and chest & starting from a compressed position slowly release the compression

Neck exercises 3 x Day:
Do each of the following and hold for 30 sec then repeat. Do each exercise by moving your head/neck in the direction noted just to resistance. Go easy if pain is felt
Directions:
• Chin up
• Chin down
• Turn left
• Turn right
• Tilt head to left while looking forward
• Tilt head to right while looking forward

@cskippy Exercises and stretching help. But my Mayo surgeon prescribed massage by an OT. That was wonderful. She did myofascial massage to loosen up the fibrosis as well as scar massage. It worked very well to restore a lot of flexibility.