Looking for hope! Managing after treatment for tongue cancer

bonnie2172, the inflammation from the radiation can take 2 to 6 weeks to calm down. If you can get hyperbaric oxygen treatments you can quicken the healing. Your taste buds will probably return. It takes a little longer if you had chemotherapy. The fatigue from radiation should be lightening up a little. Just rest though because your body needs it. It is a good time to stream movies, though most of them these days will put you to sleep. Radiation is hard on bone marrow where our red blood cells are made. It takes a while to reproduce them. Recovery is so gradual that you sort of don't notice. You've been though torture. This will be the easy part.
Just rest.

Thanks for the encouragement! I want to believe I will be myself again. I just keep hanging on to positive thoughts.

@bonnie2172, I moved your discussion about looking for hope after treatment for tongue and throat cancer to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/ You can use the search bar to find topics relevant to you.

First, I want you to know, you're not alone. I'm tagging fellow survivors like @hrhwilliam @sepdvm @alpaca @srm @clevyjam and many others who know the realities of treatment after effects and how they cope and find hope.

Bonnie, it looks like radiation ended only 2 weeks ago for you. Do I have that right?

@colleenyoung
Finished radiation almost 3 weeks ago now. Thanks for moving my discussion to the correct place.

@bonnie2172 Hello. I am sad you lost part of your tongue on top of everything else. Almost everyone
lost their taste for several weeks to several months after radiation treatment. For me, salt was the first to return.
This all takes a few months rather than days or weeks. Think of your progress in either a week by week or perhaps a month by month basis. Am I better this month than last month? And even with that, you will have back steps on occasion.
We are so used to healing from injuries or surgeries rather quickly. Healing from cancer, primarily the radiation and Chemotherapy if included, is a very slow process.
I wish you courage and better weeks ahead.

Thank you for responding to my comment. I'm trying my best to be patient & I know recovery is a very slow process. The amount of phelm and mucus I am spitting up is unreal. I can only sleep upright in my recliner and I am awakened every hour at the least, due to phelm running out of my mouth. This is truly disgusting and at times causes me to vomit. Any ideas to deal with this issue? Also, still have ulcers on my tongue, and I'm gargling with salt &baking soda rinse. No taste buds have returned yet. I am able to swallow a small amount of water but that is it. I currently
Have a feeding tube due to weight loss. Every thing else I try to swallow or eat just irritates my tongue & makes the ulcers worse. I have tried broth, jello, ice cream and cream of wheat. Any idea what I could slowly introduce to my mouth which won't irritate my tongue so much. I am about 3 weeks out of radiation & I'm wondering when I will feel somewhat better... Trying to have faith and stay positive!

@bonnie2172 in addition to what you’ve tried, maybe try instant mashed potatoes, tapioca or other types of puddings. Chia pudding made with coconut milk is also easy to swallow.

@bonnie2172
I know this is hard to do but you need to keep your mind busy, so your focus isn't on your pains.
UTube has puzzles called Quizzle and maybe the game show network. Maybe try an audio book. Music helps entertain me.
Do you have any family with you because more than anything you need a big hug. You're not alone! Bless you.

Hello @bonnie2172. This is such a tough time, as you expect improvement but it seems like the misery is still all there. It is such a slow healing after radiation. Your throat's response to the burns is to produce all that thick mucous but it will slowly decrease. The tongue ulcers plus surgery there must be so difficult. I used a lidocaine gel just prior to eating or drinking for a temporary numbness. It was a prescription item so ask your medical team for an RX. My cancer wasn't throat, but ear, so one side of my face, inner cheek and tongue had slow healing ulcers for many weeks after radiation. I love @hrhwilliam 's advice about watching for improvement weekly or monthly, not daily. My family member just had proton radiation for throat cancer and is about 3 months out and feeling better, swallowing some, having decreased mucous but still relying on the feeding tube for nutrition. He found, like others, that sparkling water cut the mucous better than even baking soda rinses. But that might irritate your tongue, so that's where the lidocaine gel is helpful prior to drinking. It seems like a lot and is tiring and discouraging, but you, like many others, will get through this.
I survived on smoothies....no feeding tube....made with cottage cheese or yogurt plus milk or ice cream and whatever fruit seemed to have a taste. Peaches worked best and it was summer so in season. Frozen fruit works too. A room temperature vs very cold was better, and I had the lidocaine to numb the ulcers before drinking/eating. It is really exciting when taste starts to return. I am a chocolaholic but dark chocolate was spicy and burned my tongue during treatment. It was one of the last tastes to return to normal. What I wish I had known about then is Manuka Honey to stimulate healing. I use it daily now to help control allergy symptoms to avoid antihistamine dry mouth. If I were to use it for healing I would dilute it with a bit of warm water and hold it in my mouth then swallow slowly. I buy a good brand via Amazon called Bees & Trees made in New Zealand. If you can tolerate using it, I think it would speed healing. It certainly does with skin wounds also. Do you have a good support system helping you get through this? Remember to find something every day to be grateful for, no matter how small. It helps to keep a positive attitude when the struggle is overwhelming.