Need support and hope: Dealing with mucositis and severe mouth ulcers

I am so sorry. I too had a large tumor removed, and a total thyroidectomy with RAI. That was 12 years ago. Fortunately, I didn't get the mouth ulcers, but I had very painful salivary glands for months. I lost all sense of taste, which did finally get better, and I still am having problematic adjustments made to my Synthroid regularly. I always sang in choir, but to this day, still can't sing anymore. There must have been damage to the vocal chords. Finally, and worst of all, is a chronic cough. I have tried everything, the latest being CBD oil, as a last resort. It is likely neurogenic, with possible vagus nerve damage.
This may not sound very hopeful, but I am still glad to be here 12 years later. I hope it does help you to realize that you do have company, and we are still hanging in there.
What really burns my butt is that they told me I had the good cancer. Really?? There is no such thing.

@binw

Thank you for hearing me. I am so discouraged by all of what has happened to me and constantly wonder why. I guess I am just trying to figure out what is next for me. And, yes, there is no such thing as "good" cancer. I am so sad to hear about the loss of your ability to sing in the choir. Another casualty.

Ugh, I can relate. I'm 2 years out from my total thyroidectomy and neck dissection, and still have numbness and swelling, plus have some damage to my right salivary gland and a severed vocal chord.
Here are some things that may help with your symptoms:
Biotene Dry Mouth Rinse, lozenges and mouth sprays (or knock off versions which are cheaper) help immensely! Use throughout the day and especially before bed.
Make sure you're massaging moisturizer into your scar daily! I use a silicone scar gel. Massage your scar throughout the day tho keep it from tightening up. You can search online for scar massage techniques.
Also, learn some lymph drainage dry brushing techniques for your face and neck. I got a little facial brush just for this purpose and use it daily. It really helps with the neck swelling!
And if you can, stay active, drink more water, and add some anti inflammatory foods to your diet. If the mouth sores continue to be bothersome, see your dentist for a prescription oral pain reliever.
I know this all sucks, but you will eventually adapt to your new normal. It's challenges like this that earn us the "badass" title 😎

Thank you to lalu64 for the practical suggestions you gave to kathleen. I have found that the old cliche that time heals all wounds is mostly true. As human beings, we learn to adapt, and life goes on. I do remind myself often of how fortunate I really am, and how much worse it could be. It may sound trite when you are so early on in the process of recovery, but you will heal. Best wishes always to all of us who are survivors!!

@kathleenmkastrup, you might find this older discussion where @loribmt and @auntieoakley offer tips about mucositis related to cancer treatment:
- Does anyone have experience with mucositis https://connect.mayoclinic.org/discussion/mucositis/

It's been a couple of weeks since you wrote the original message. Have things improved? How are you doing?

@colleenyoung

thank you so much for asking! Yes, the muscositis has mostly resolved, and I am beginning to feel like a human again. It it so hard to explain how painful and disgusting it was. RAI? Never again