I'm only beginning the second week of treatment and I'm showing signs of the dreaded symptoms already...bummer. Oh, well. After all, they did say that they are treating me aggressively and throwing the kitchen sick at me; also doing both sides of my neck, so that makes me happy (in only a way only we folks could understand)!

I saw my MO today for my weekly checkup and she could see some mucositis starting on the surgical side of my tongue already. I asked her if there was anything else that I could so to slow it down and she said no. I'm already doing the salt/baking soda rinses, oral care, water, hard candy, etc. My mouth is pretty dry already, but I'm missing my left submandibular gland from my first surgery. She gave me to okay to use the manuka honey, but I'm not sure if I should use it now or later...Cheryl, I know in a previous post your told the me strength. Was it 16 or something. Please forgive me that I could not find your instructions. Oh, I also have to start using the cool mist humidifier.

Well, gotta get to bed. Another rad treatment in the a.m. I have to say that I am making friends with the mask and the machine. I even gave the linac (linear accelerator, I've just learned) a wink today, and said (in my head) "How you doin'?". Er, um that could have been partly due to the ativan, but not totally. I've gotta come up with a name for the mask and the machine before this is all over. It should give me some thing to focus on during the treatment! Gotta giggle when you can.

Kerri, focus on your nutrition and hydration. It is going to make a big difference in how you feel. Every single day take in a minimum of 2500 calories and 48 oz of water. Rinse with the warm water/baking soda/salt at least 5 times per day. Ask your doc for a magic mouthwash prescription (with refills) to numb your mouth so you can do your dental care and eat easier.

i believe the manuka honey Cheryl used was 16 and found in health food stores.

You know it will get harder before it gets better but thats what it takes to kill the beast. Every day you are one step closer to being well again. Hang in there!!!

Yay for Ativan!!!
I had some not so nice names for Kevin's mask. I just saw it yesterday on a top shelf and it made me jump and creeped me out. I don't know if we should throw it out. God forbid, but if there is recurrence, do they make a new mask?
Hang in there Kerri. So sorry you have to do this. So glad you are sharing with us.
Kathy

Kathy

Yes, they make a new mask each time. I have two at home and they have made a third one already , as that is part of the planning the radiation field process. I'm actually excited about using this third one, because that would mean they have figured out a safe radiation plan for my third time around.
charm

Ask your nurses if they can spray your mouth. This really helped initially - and then became a little less helpful- but still not bad.
I found the VHC shakes great- I liked them at room temp by the third week when I really needed them.
Aquaphor!! Slather it on!'. I looked SO shiny & gloppy- and am so happy I did!! I bought a bunch of cheap tees & put them under my clothes & then tossed them at the end of treatment as they had bad stains. Well worth it though as my skin came through really well!!
I carried around a cup to spit in... Gross, but made for less chasing of lips when spitting into a towel or tissue when in public.

I didn't have chemo, so not sure whether or not these tips will be as helpful- but we are all pulling for you.
You are a tough cookie- this disease has nothing on you!!

Love the machine nicknames!

I have had three masks. First one I stuffed with cloth and used for target practice with my son using my Colt 45. Blew that thing to hell and back.

Second one was partial body head and neck. Stuffed that with hey and use it for bow practice. Not much left of that one. My son has gotten very good at hitting me in the head.

Third one I just told them to trash it. All I have left is the shotgun and that would be a one shot deal.

That's kind of a cool idea Kelly. I could stuff the first one and let Kenneth, our oldest son, shoot arrows at it.
Charm...what do you mean about what you said about the third one? What's different this time?
Kathy

Thanks for all of your replies. Kelly, I love the idea of shooting up your masks! That must have felt great! I told my husband about that and he got a good laugh. He has a sword collection...that might be one way to make it more personal .

Christine,
I know that you are a fan of Carnation VHC and I think you once told me that you got yours on Amazon. I don't need it YET, but I imagine I will very soon. I did an Amazon search and it seems that it's not made by Carnation anymore, but by Boost? Is this the same stuff, just bought out be another company? Has anyone ever had any luck with insurance paying for it? Also, I have to idea how much to buy at at time. Any input would be appreciated.

Thanks,
Kerri

HI kerri... 16 + umf! use it from the get go if you can... it will help stave off some of the symptoms for a bit. good luck and mucho hugs!

It's listed as Nestle now- that's the one I used at least. I also thought the Boost juices were good... They are 250 cals and I could handle them pretty well...

I don't know about insurance paying for them. Worth looking into though.

Good luck.