How can I cope with radiation side effects for head and neck cancer?

I just finished 25 sessions of daily radiation to my nasal region and an interior fossa that sits close to the brain stem. I had aggressive chemo at the same time. Rough therapy. No idea what the future will hold for my teeth, my hearing, my eyesight, or my pituitary. They were all within or near the radiation field. Sympathies for having a rare diagnosis. Mine is very rare as well-extranodal NK/T cell lymphoma, nasal type. It’s challenging to hear “We just don’t know at this point” as they keep pouring the chemo in and placing you under the radiation machine. You try to learn about your type of cancer and find contradiction and hypothesis in the journals. Some days the hardest fight of all was to believe that I was fighting the best fight I could. I felt as if no one held any answers to my questions, like I was the wallflower at the cancer dance. The girl with the strange little tumor in her nose that no one found pretty enough to dance with.

Radiation side effects for head and neck cancer can be particularly challenging, and connecting with others who understand this experience can provide valuable emotional support and practical coping strategies. Many community members have found that sharing their experiences and learning from others helps them feel less alone during treatment - feel free to share more about what you're experiencing so others can offer their insights and encouragement.

I'm now a year out of head and neck radiation treatments and chemotherapy. Immunotherapy infusions ended three months ago. The new normal is that I have radiation fibrosis in the neck muscles which is incurable and progressive. I work at attempting to keep head and neck movements as good as possible. I am lucky I can swallow, taste and eat food now. I'm definitely the wallflower at the dance as well. There is very little research on salivary ductal carcinoma due to it's rarity. Pet scans may not show if has progressed and there is no blood test that will show anything. Basically it's wait and see and doctors don't know anything much about treatment except from a few cases in the past. Stage 4 patients like me are usually dead in three years, but I plan on to fight so long as possible.

PS I'm worried about bone death in my jaw from the radiation as well as my teeth. I lost most if my hearing in the left ear due to the radiation.