I went to the first visit at the Cancer Center today. On Wednesday I got for the fitting of the mask and the scan. The next Wednesday they go through the "trial run" and I start my 30 radiation treatments a week from Thursday. I want it done NOW...but then again I am really in NO hurry! If I am going to do it I want it done and over - should be done before Christmas...maybe not feeling great yet, but DONE!

Got my mouth guard and mask today. That wasn't too bad except they had me waiting on a nurse to get the IV started for the CT scan dye...and she poked me 4 times, working on a 5th when I notified them that I wanted UP! I came up out of the mask crying and freaking out...been there almost an hour. I left, drank a bunch of water/tea and went back this afternoon (WITH Ativan) and she got the IV first try, mask and mouthpiece went on fine and CT scan is done. :o)

I think I can do it without the meds next time - at least until it gets painful or I have sticky mucus.

The mouthpiece really bothered me, but once I got the mask on during the fitting I forgot all about the mouth piece! Go figure. :o) Anyway, next Wednesday is the trial run and the next day my 30 treatments start. Might be the longest 30 days of my life...or shortest...depends on how I feel. LOL

Michele in IL

Geez, usually the CT crew is very good st placing IVs. It's the operating room staff that I have trouble with. If they miss more than once, ask for some else. You don't need newbies practicing on you.

Take care,
Eileen

I had surgery as well as radiation and Cisplatin (once a week for 5 weeks).I did not want and did not have to have a PEG. I drank Carnation Instant Breakfast, Ensure,Boost, Special K Protein, and lots of shakes and water to help stay hydrated and keep my weight up. The most I lost was 10 pounds. I also was able to eat some soft food. It took me awhile to eat each time, but I stayed with it and took my time and was able to get food down. If they give you swallowing exercises to do - do them. I started before radiation started and continued during treatment. I think it helped keep my muscles working. I used baking soda/salt rinses several times per day as instructed. Whatever they told me to do, I did and I think it really helped my mouth. Hang in there and you will come out on the other side.

I am going to do my level best to keep drinking/eating while doing radiation. I figure if I ate through the pain before surgery I may have a chance of eating through the radiation caused pain. :o) Dr. gave me some exercises for loosening my neck scar and told me about opening my mouth as wide as I can several times a day. I hope the radiation won't tighten the scar too much, too fast. It is TIGHT. Other than turning and bending my head, is there any other way to stretch the scars slightly?

Thanks,
Michele in IL

Michelle,
You might want to get some physical therapy to help with the side effects from the neck dissection and the tighting of the scar. It will also help with the lymph drainage problem. Get a script and referral from your RO or surgeon.

Take care,
Eileen

I didn't have chemo. Just radiation. 35 treatments. I was 250 lbs when dx and 210 at the end. Surg. teeth pulled and radiation. You will make it! I didn't have any tubes during radiation. There is mouth wash to help with the nausea and mouth pain. Take the pain meds! worry about addiction later. food and water are you medications they are just as important as your treatments. Also protein powder is you friend! You'll do great!

Thank you both...I think I am going to need physical therapy for the neck - now that the trachea hole has closed it is even stiffer and tighter! Luckily it goes back better than forward so I will be able to lay on the table with my head tipped back for radiation. :O)

What is the nausea from? Pain meds or radiation or? Yes, I have protein powder and will use it with whole milk instead of skim for dieting. I don't even mind the taste of Ensure...but it may not taste all that good during radiation.

I will use pain meds as I need to but I am easily knocked out and don't want to spend the entire 6-8 weeks dead in bed. But...I will do what I need to I guess.

Thanks for the good tips! It just keeps getting closer and closer.

Michele in IL

Hey Michele and everyone!

Off to Radiology this morning for simulation and mask and all that good stuff. Just relaxing and watching saved by the bell right now, I will post my experience via video this afternoon. Thank you all again for your support, wish me luck! Also will talk to them about my recent headaches and earache, just trying to stay positive.

Your Friend,
Nathan

Good Luck Nate! My boyfriend had 2 of them made, they kinda messed up the first one.? ya so he brought that one home to show me what he had to wear. And when he was done he brought the one they used home with him. He tried to be silly and make a Halloween Mask out of it by putting nails in the top of it(like Hellboy I guess)maybe it was just theraputic for him to do it, cuz when I asked him where it was he said he threw it away. We still do have the first one though. I'm keeping it.