Your tips for recovery after 35 radiation treatments for tonsil cancer

@lizzyj58 I can only speculate that the reduction is an adjustment due to size or location. I would think it’s a good sign. One of the things that encouraged me occurred during my first meeting with the radiation team. What impacted me was their focus, not on survival but rather on minimizing the impact so that life after treatment could be closer to normal. They definitely want to avoid 35 sessions. I had one doctor tell me that 5 weeks was likely sufficient. They also wanted me to avoid a feeding tube if at all possible.

As you likely have figured out, not only is everyone’s situation different, so is the response to treatment.

My throat pain was like strep throat at the peak of treatment. Sore but tolerable. I only used ibuprofen and Tylenol at the last few weeks. The opioids really did nothing for me so I opted out and saved myself the constipation issues.

I slept well and would just swish some of the lidocaine solution if I woke during the night. I also applied Miaderm-L and Cetaphil cream many times per day but I didn’t realize the radiation pattern ran all the way down to the clavicle on each side. So I had some blistering there but it didn’t hurt enough to keep me awake at night. I would “dab” lidocaine solution on those spots using small cotton makeup pads. But be ready to cut out the neck area of t-shirts to avoid contact.

@robpara Thank you for your perspective, it helps. Also, it good to hear your treatments weren't too awful, hopefully my husband will be the same!

@lizzyj58 if they haven’t told you already, you will hear that attitude plays a big role. I heard that patients with a positive outlook did much better. So I was determined to show up each week, ready for more.

I was told each week that it was going to get tougher. Ok, my eyes were wide open from all I read. I didn’t really need to hear this but I think the teams are concerned that a patient will give up. The focus is completing the plan.

My positive attitude was built on my faith, my wife’s and daughter’s support, the fact that I wanted to live and actually felt lucky that there was a treatment that beats this and probably a little “I’ll show them”.

@robpara So glad it's all behind you now! Thank you for sharing your experience, it helps to know what to expect.

@lizzyj58

This is a VERY slow journey to recovery. I am 6 weeks from last treatment and still primarily on eating soup. I have been able to manage some crockpot meals but again the progress is SLOW. This is difficult for someone without patience such as myself. The right side of throat where the radiation was focused on still sore and get red bumps in back of throat after eating hot or cold which they last about an hour. I know for a fact no matter what I will NEVER put myself through this hell. I miss food especially spicy and that for sure is a ways in the future. I plan on discussing all this with my oncologist in another 2 weeks. My team says I am making progress that things will get better but the slow progress is frustrating.

@dragonfire I`m sure it is very frustrating for you, but think back to how you felt 2 weeks ago, you probably felt worse then , so you are getting better and now you are cancer free! I`m dreading the side effects that my husband will have! Again, thank you so much for sharing . I read somewhere that Manuka honey (Amazon ) helps with sore throat. A teaspoon in warm water and sip, may help.

Me too

@lizzyj58

Well, going to try and get through Thanksgiving dinner. I will have lots of gravy eating improved a little but still a challenge along with limited taste. At least I am on the right side of the grass. I meet with my oncologist Monday I have lots to discuss for sure. This has been and still is a difficult journey which I have NOT enjoyed.

@dragonfire Maybe try to focus on the fact that your treatments are over and each week, I know it's easy for me to say all this ,but you will feel a little better than last week. Lots of gravy! Can you eat pie maybe with ice cream?

I was not a fan of gravy before c-journey.
Mama would make it from scratch.
I inherited her gravy boat.
I am going to buy out gravy.
I can't live without it.