My treatment journey with tongue cancer: And yours?

Welcome to the club no one wants to join. Tongue cancer....notice how everyone's face changes when you say those words?

It gets better and so will you. Lots of great folks here who have been down this path. I had my cancer surgery/reconstruction and neck dissection in Oct. 23 and radiation/ chemo Dec/Jan 24.
So you're ready to manage your lymphedema. Learning that and practicing the self massage every day really helped me with healing and reducing my pain. Even now 2 years out I still have to keep on top of it. A few times it got the better of me and my surgeon prescribed massage therapy by an OT. So my recommendation is, if you need help ask for it.
I also wear a face compression wrap to reduce inflammation. It really feels good to keep the swelling down. Now I only wear it at night but it keeps my mouth closed so it helps with dry mouth.
Take care and be good to yourself.

@sandy8043 Thank you--Sandy. Now I know what to expect over the next 2 or 3 years. Still wondering if beyond neck--- Lymphedema can spead to upper chest area (but not shoulders) where I have disconfort and tightness. I was thinking that dry-mouth would correct itself over the next year or two, but that is to be seen. I was not aware of face compression wrap, will look into it

@jabby1
My Onco said I had to wait a year (post tx) to see a MLD Specialist HNC.
SLP recommended Cancer RehabPT online exercises, which I still do today.
Water drinking & exercises especially swimming does wonders for lymphedema.
Lymphedema is alot better since 3 yrs out NED.

@zenren14 Good feedback: swimming. I will need to go back to the "Y' and restart my swimming that I stopped several months ago.

You've come to the right place. I've toughed it out for the past 20 years, ignorant on many of the issues I've faced. I eventually found this Mayo group, which is filled with better informed people. Sadly, there will be many who have walked in your shoes, but they will have some good ideas on how to address the problems you face. Good luck!

@zenren14 You waited a year to start seeing a MLD specialist in HNC. Interesting. Did not know there is a MLD therapist dedicated to HNC. Tomorrow is will meet my therapist and see if she is MLD or mainly motion. And find out her experiences treating HNC. I am reading in some articles that therapy, MLD, should be done initially 3 to 5 times a week. I thought by talking to a few centers that it is 1x a week since that is what they do. Anyone going multiple times a week. ???Thank you everyone for responses

@jaybb1 Showing my ignorance here but what is MLD?

@shane1954 No problem. I had to complete a sheet-sheet at one time to keep track of all these initial medical terms. MLD=Manual Lymphedema Drainage ie finger massage; CDT= Complete Decongestive Therapy; HNC= Head and Neck Cancer; HBOT= Hyperbarc Oxygen Therapy (for dental)

@zenren14 I love The CancerrehabPT. Her videos are great on YouTube.

@jaybb1 here is the website for the face wrap. I use it with a "chip bag" from my OT. Its a bag of foam rubber chips. Sounds weird but works great. I got my first one from my Mayo OT and it worked well. Since then I buy them directly from the company. The one they sell on Amazon is too hard to get on right.