Hi Garvin, welcome! I'm sorry to hear you are going through this but I'm glad you have found us.

I recently completed a course of radiation to my tongue/mouth and neck - last dose was Mar 22. So I am in the thick of it right there with you!

At the very end of my treatment and in the week that followed I was in a lot of pain, to the point that I had a pump to administer a constant infusion of hydromorphone subcutaneously. That was very short term - and now my mucositis is MUCH improved in terms of how it feels on a day-to-day basis, I would describe how it feels as a mild discomfort now, sort of like having a perpetually 'burned on hot coffee" sensation. I no longer need the hydromorphone. I do take pregabalin and duloxetine for nerve pain. I am comfortable speaking but do notice if I talk a lot my tongue starts to feel sore. Visually my tongue looks a lot better - the inflamed redness and ulcers are gone.

Having said all that, I am still surviving solely on Ensure shakes, much to my chagrin. I am SO sick of them, as its been about 6 weeks now . My sense of taste is still very much diminished and attempts at eating cause irritation and burning/stinging pain to my tongue so I have been avoiding most solid s only lately have I attempted some bland/soft foods (Ice cream - no, mashed soft veggies with butter -yes, cream of wheat - yes but tastes bad...etc) just trying things out to see what goes down easily enough.

I lamented to my doctor just yesterday that I was feeling frustrated with my perceived "lack of progress" but she reminded me that the radiation continues to take effect for a couple months! It is really a long haul...I feel well otherwise (energy good, more or less back to a normal routine) so it really is a mental game at this point. I really miss eating but I guess I will have to keep trying things.

Good luck!