Surviving parotid radiation treatments

Shortly after I finished radiation, I typed up a list of tips and tricks to help anyone else going through the same thing.  I've shared it with quite a few groups, and I just realized that I never posted it here. It may also serve to give you a glimpse of what radiation was like for me.  If it helps you, please leave a comment below! Thanks!

for skin - eucerin aquaphore or eucerin calming cream are wonderful!

for dry mouth/thick saliva - carry a bottle of water, drink a ton, even when you don't want to.  some people like biotene mouthwash - I didn't.  Sugar-free mint gum helped a lot for the first half of treatment.

for teeth - if you haven't already visit a dentist and tell them what is going on - they'll probably give you fluoride trays. Brush and floss often (after every meal) - but you'll probably want to switch out to an alcohol free mouthwash and extra soft toothbrush. About half-way through, I switched to the biotene low-foam toothpaste - good stuff, for when spitting is WAAY more work then it should be.

for sore mouth/throat - rinse with salt water or baking soda in water 4-5 x day. I also found rinsing (and swallowing the oil) with olive oil (spring some $$ on the good stuff) 4 or 5  times a day really helped for a while, until the olive oil started making my stomach upset.  The mint gum helped with this too. Once you're mouth gets sore, your doc may give you "magic mouthwash" that will numb it so you can eat more normally - just be careful not to bite your tongue ;)

For eating - Eat anything you want pre-rad!!! Don't worry about a couple extra lbs. (Nutrition is important too, though!) Lots of protein and a nutritious diet in the first couple of weeks of radiation can help with energy, and minimizing side-effects.   At first, just the taste issues made me eat less - I found melons, eggs, vanilla ice cream, fried foods, and bread to be not offensive, but you'll have to try stuff and figure out what tastes good to you. Once my mouth started getting really sore and swollen, I found I wanted to eat less and less. I eventually switched over to mostly vanilla ensure and scrambled eggs. Taking really small bites of food helped me eat more comfortably.   My doctor (though others have other opinions) told me not take vitamins, and to avoid acidic foods (pop, some juice, tomatoes, citrus, etc). (Vitamins can lessen the side-effects of radiation, but some think they might also lessen the radiations effectiveness.  Apparently, the acidic foods slightly damage the lining of your mouth when you eat them. Normally, not  a big deal, but with radiation, it can't heal.) Also, you should probably avoid alcohol during head & neck radiation. 

For the tiredness - Not much will help that I know of. Get as much sleep as you can. Some people say light exercise helps. I found I had more energy on mondays and tuesdays through the rad cycle, so figure out what days you have more energy and plan stuff for those days.  And I had more energy on the days when I got up and did something, rather then just laying around, but some days I needed to just lay around. Get help around the house- maybe a friend can go grocery shopping once a week, or someone can come do laundry, or fix a meal.   I hope you like daytime tv ;) Netflix is a good option, too!

Muscle stiffness - stretch you neck and jaw (gently!!!!) often - whenever you think of it. do a fake yawn until you get to a real yawn 5 or 6 or more times a day. Keep this up until weeks or months after radiation ends. (I still have stiffness - this helps)

For the actual treatments - Take relaxing music to listen to. I pictured myself on a beach, or laying in my favorite outdoor spot, rather than in the radiation room. Some people found counting the clicks helped pass the time, and reminded them how much time was left (same number of clicks each time).  They'll give you a foam ring to hold, but at least one person I know took in one of his kids stuffed animals to hold onto (instead of the ring), so that he (and his kids) felt like they were part of the process. He said it also reminded him why he was doing this. 

In general - talk to your doctor about side effects, what you've got and what you're worried about.  In most cases, they'll be able to recommend something to help.  My doc had me visit a swallowing specialist prior to starting treatment - they gave me exercises that helped keep me swallowing normally, i think. 

For the future - ask your doc(s) about long term side-effects, and things to keep an eye, out for including trismus, avoiding certain osteoperosis drugs and certain dental procedures, and the VERY slim possibility of necrosis. 

I worked at least part time through most of the treatment, but I also slept about 12-14 hours a night, and spent several more hours on the couch resting through most of it. Radiation SUCKS and I won't try to tell you otherwise, but I found it do-able.  Remember why you are doing it, and that the worst of the side-effects are temporary. 

I really hope this list helps someone!  It's not an exhaustive list, but I've tried to put down every thing I can remember.  If you have questions or comments, I'd be happy to listen.