Denise

I have two radiation masks and we had some posts here on how afterwards they can be turned into "art". Here is a link to some images of the masks, before and after that may put it into better perspective. It's just a warm plastic mask that is fitted to your face so you don't move. It never bothered me at all especially because I asked them to make the mouth hole a little larger.. radiation mask art
As far as the feeding tube, doctors are split. Some advocate or even require it, others like my doctors feel that it can hinder the ability to recover swallowing since without the PEG, you constantly adjust your muscles to keep swallowing.
There is no doubt that a PEG is easier, and unless you have a psychological benefit/need to get thru without one (as I did), it will be hard. For me, it was an important signal that the cancer was not in charge, and the benefits of not having it easily outweighed the hassles. For many patients, it's just not a big deal and has no significance. Most "opinions' reflect what their doctors told them. It's a personal decision, with no "right" or "wrong".
Charm

Hi Denise

I am seven months out of chemo/rad treatment, and the bad memories faded fast. The mask was not as bad as I expected. It did feel tight to start with, but as others have said it helps to keep you still. I would have been more anxious about having to keep myself still without it I think.

As for the PEG, I had a RIG (similar to a PEG but put in from outside and kept inplace with a water filled balloon) for 5 mths. I was dependant on it for 2 months, after that it was an aid to get enough nutrition and as a result I stabalised my weight loss very quickly and even began to weight back on. I didn't like it because it irritated me as I moved, but it was a God's send as far as maintaining my weight. I had a very sore mouth first from having 10 back teeth out, then from chemo and then rads. I found eating very difficult and felt very bad that I wasn't managing it so the tube took away the pressure. I did keep swallowing warm water and natural yoghurt through the worst times.

Everyone does seem to have very different experiences of the whole treatment, so here's hoping it goes well for you.

Best wishes
Sally

Thank you for the info, I think. Seeing the mask does help so I know what to expect but I'm pretty I won't be making it into "art" afterwards. Surgery is Wednesday and getting pretty anxious right about now. I do appreciate all of the information everyone has given on this site. Without I would have be completely unprepared for what I really am up against. It's hard to not get emotional but I guess that's just part of the process. Getting a little worried as there are new "spots" on my tongue just since in the last few days. Staying strong and keeping the faith. Good luck to all that are posting on this sight. I'll be back on after the surgery...here's hoping all goes well!

Best wishes for your surgery on Wednesday - being in good physical shape will help you bounce back quickly.
Maria

Denise are you being seen at a ccc? I'm not sure which one is in Nevada but its your best chance at beating this - Hopefully whatever is on your tongue is irritation but show it to your surgical oncologist prior to surgery he may want to remove it too. Base of tongue cancer - BOT - usually responds well to just chemo and rads - but oral tongue cancer usually needs surgical removal of as much as possible first. I'm not sure why but oral tongue cancer seems to be more aggressive and stubborn in some people. Best of luck on your surgery, hope it goes well. You'll be stiff and numb but it's not terribly painful. Take care.

I bet you came thru fine but are glad it's over. Good thinking on your part is a big plus.

Hi, Denise:

Welcome to the forum. Unlike you, I joined the forum just a couple of months ago, long after I finished treatments 4/28/11. However, I still find good information here, and it's also good to interact with people who understand exactly what we're going through/have gone through. Other than the gender differences, our stories sound very similar. I had a partial glossectomy and neck dissection (17 lymph nodes) 6/16/10, recurrence in Jan. 2011, began chemo 1/17/11, second neck dissection (18 lymph nodes) 2/24/11, and 28 rounds of radiation that ended 4/28/11. Eating was difficult during treatments - the week of chemo was not so great, the second week was worse (mouth sores), and the third week was the best for eating (before they hit me again the next week). Radiation really wore me out. Luckily I was able to work from home a lot during treatments because it would have been too hard to put in eight hours straight. I did not have the PEG....I was determined not to have one because I didn't think that was "eating". Sixteen months out, I'm eating everything; although I have stayed on Protonics since heartburn seemed to occur more without it. My neck healed really well after the first surgery. The second surgery was a little tougher since I had an egg-sized tumor and neck muscle removed, so I still deal with neck mobility issues, twinges, some pain, numbness, etc. Hope I didn't say too much to freak you out, we all have different side effects and reactions to treatments/surgery. Best of luck to you, and I'll be looking for updates!

Hi all, Well had the neck dissection surgery last Wednesday and it went pretty well. Waiting on the path results but she feels like it is stage III since it moved from the tongue to nodes. The tumor was the size of an egg and was attached to a main muscle so that had to go too. Spent 2 nights in the hospital and now home resting and recovering. Everyone says the incision looks really good but I think it looks like I was in a night fight. Cut from ear to throat on the left side but she thinks she got it all, so trying to stay positive. I'll see the RO next week to set rad/chemo schedule. So round two begins...Hope that everyone has a great Labor Day and hope we are all here to see it again next year!

Hoping the same for you! Faith! prep for treatment best you can - read up on what happens and how to off set it prior to things getting really bad - forewarned is forearmed. Hugs!

Denise, I admire your courage. You've been through a lot and you're bearing it with grace and humor. The last is very important!

There are plenty of people here who can give you great advice on preparing for rads and chemo. Many, including me, will tell you to eat as much as you're able to to before the treatment starts. Also to get a thyroid baseline now so you'll have something to compare it to later, as radiation can mess with that. Plus of course to see a dentist for an evaluation of the health of your teeth, as rads will affect salivary function - to a degree specific to each of us.

Keep asking questions. Sounds to me you're in good hands.

My thoughts are with you.