Lymphedema remains my biggest challenge, too. When it flares my mouth is drier and tongue is swollen. I did the massage but it only worked to a point. My Mayo surgeon prescribed a lymphedema pump machine made by Tactile Medical. It uses a mask and vest that uses light air pressure to massage your face, neck, and torso. I use it once a day, sometimes twice if I need to with each treatment taking about 30 minutes. It works great and has made all the difference for me. I still do some self massage as well. I also wear the band and foam chip bag at night. My mouth does not dry out at night if I wear the band. Hope this helps.

I am 20 weeks post treatment. The pain in my mouth peaked at 8 weeks after, which was 6 weeks longer than I was told would happen. I could eat only very slippery, bland food for about 12 weeks, and that was using “magic mouthwash” to temporarily ease the pain. Drinking water felt like razor blades going down my throat. Gradually in the last 8 weeks I have been able to tolerate more foods, although nothing that’s rough or spicy. I’ve also regained my energy which was very low. I still have very little saliva and taste, although I can taste a bit better. The constant dry mouth is annoying. I can’t go longer than a few minutes without some water, otherwise my mouth quickly becomes dry and painful. I developed lymphedema on my neck about six weeks ago. My neck quickly became swollen. Looked like I was a turkey with a gobbler neck. I do some head and shoulder exercises which has reduced the swelling to about 1/3 of what it was. I have an appointment this week to assess my lymphedema and develop a treatment plan. Seems everyone’s timeline to recover is different. The key is to keep pushing the boundaries, especially with what you can tolerate eating and drinking. It will get better with time - don’t get frustrated if it takes longer than projected.

It will get SOOOO much better. My husband’s lack of taste and severe dry mouth has improved by about 95%! He’s now 14 months out from end of treatments. His taste has come back with a vengeance 😂! Our som says he’s a super-taster now.
We were doubtful that he would recover, but he did. You will too! Hang in there, the trip is almost over💕👏🏻