I hope your sister's first day of treatment went well yesterday.
I was like Kelly and did not have terrible side effects like some people do. I did not have a PEG - I was determined not to. So I drank alot of Ensure, Boost, Special K Protein, Carnation Instant Breakfast throughout the day and my husband made lots of shakes for me to help keep my weight up. They also gave me swallowing exercises and facial exercises to do. I started them before treatment and continued throughout treatment and I think they really helped with my swallowing and tightness of my neck and mouth. I used AquaPhor (over the counter) on my neck to soothe the burning and help with healing. Also soda/salt mouth rinses several times per day to help with mouth sores. Whatever the doctors told me to do, I did. I did lose my taste which was not fun but started regaining it about 8 weeks after the end of my treatment. I can taste most foods now but not as intensly as before. My mouth is always dry and I keep water with me always. I use fluoride trays every night and I have regular appointments with my dentist to keep my teeth in the best shape possible.
I know at first I was hit with everything that possibly could go wrong but it doesn't necessarily happen that way. It's not a fun process to go through and life is different but she will come through treatment and things will eventually get better. Hang in there with her. It really helped me to have my husband with me and guiding me and telling me what I needed to do next because at some point I was just tired and didn't want to think about anything. Keep us posted.

Howdy from Texas! I am meeting tommorrow woth my radiation oncologist regarding my starting IMRT. I had muco epidermoid carcinoma surgically removed 6.18.2010 and had a maxillectomy (all of hard & soft palate), R side lymph removed, and 5 teeth removed. Nasal septum & turbines removed. After 8 weeks post-op I feel 85%. I have trimus, and can stretch to 3.5 with Therabite. I know my situation is nothing compared to some diagnosis here, but I am not looking forward to 30x rads to mouth. I WILL get thru it, but know it will be rough. I have a great wife and kids for support, but know this may be most challenging thing so far in treatment. Any thoughts to mindset and dealing with declining energy and desire for day to day activities. I am a career firefighter, and am off till after radiation. Have a great bunch of firefighter I work with, very supportive. Any help in keeping mind upbeat while body wants to do nothing is greatly appreciated.
Thanks in advance!

Devin,
Attitude is the most important thing and you have a great one. In my experience, the fatigue was not a problem for the first half of my 33 rads. Take advantage of each day and do as much as you can. I played golf, kayaked on the lake, walked, and went to work every day for the first 3 weeks before I had to slow down. Set short term goals of activity, such as the next 5 days at a time rather than the 6 weeks of treatment. Also, mentally prepare for dealing with the pain and effects of the rads to your mouth and throat so that you will be able to change eating habits. Example, I progressed from eating soft foods to fruit smoothies and finally ensure shakes. You will need plenty of protein for your body to recover from the radiation damages and healing. Having said all of that, everyone is different and we all recover on our own body's schedule. Also, most important, I had an army of prayer warriors who held me up - I pray that you do too!

You might want to work for the first few weeks of rad and save that time off for the weeks following radiation. That's where you will feel the effects more. I was weak as a kitten for probably 4 months post Tx. Unless you are a very special person you will be desk bound post Tx for a lengthy period.

Although I have recovered very quickly post radiation I actually started missing work the first week of radiation. By the 2nd week I was out of work and by the third I was in the hospital on a morphine drip. That is NOT a normal experience, I just tend to be sensitive to medicines and I guess radiation. Most people never end up in the hospital due to radiation. Once I was released the finished up the radiation and added some for time missed I had very little problem with the final treatments.
I returned to work Parttime 1 month after radiation and full time after that. Of course I sit all day but I am an insurance agent so I talk all day which of course was difficult at first but improved daily.
I suppose my point is that it depends on how your body handles it there are NO rules and everyone has a different experience.
As to what to do spend time with those kids as much as possible.

I lived on milkshakes. Also, be sure and ask for Mary's Magic Potion, it is a thick numbing solution to take a swig of as needed. It numbs your mouth for a short period but would give me some relief, then I would use the "good" pain meds at night. Do you have your mask made already? That was fun.

Hey EllEll. Thanks so much for the post. I passed all your suggestions on to my sister and she is starting to do some. She did her 2nd treatment today. Woohoo!! She is already counting down on the calendar. She has become upset though that she sees all this people that are so positive during treatment and she isn't there yet. I think she is positive but is scared.
She's very cute now though how she walks around with a water bottle to get those 48oz in. I think she will make it through ok. I keep praying she does. Again thanks so much for your post I saw her confidence go up which is priceless!!

I think if ever there is a time to try to practice One Day at a Time mentality, this treatment is it!!!

I think my husband's attitude went up and down depending on how he was feeling, what his expectations were(he hated feeling weak), how bad the symptoms were,etc.
I think it helped when he started to adjust his expectations to the reality. If he was weak, he needed to rest, if he was grouchy, he was entitled. My husband also got a case of what we were calling chemo brain(from reading about it). He couldn't concentrate, he had a hard time caring about stuff he usually cared about,etc.
As a caretaker, that was difficult to watch. My husband just wasn't my husband for awhile.

But he is back...and I think during the rough times it helps to remember that there is the light at the end of the tunnel. Everyone here kept saying that and it was hard to believe when he looked and felt so crappy.

He just went through his three month mark of ending treatment and ordered lumber to do some stuff around the house. Never thought I'd be so happy to see the guy work on a household project.
It's not all roses...but it does get better and holding on to that thought might really help.

I remember my first week of radiation in 2000. I developed Thrush which was real painful. A dental hygenist and Diflucan saved my miserable butt. I started using Tom's Fennel flavored toothpaste at this time. It is mild and does not burn like the other paste. I still use it today. Good luck to your sister Susan and to you Devon. We are he for you.

Just an update after my meeting with my Radiation Oncologist...She feels the mouth side effects should not be full strength, since they are shooting higher than first thought. Basically, they are shooting from my mustache up to my sinuses. Hopefully, the saliva production and taste loss should be minimal. She is of the opinion I should really do well.....
I hope she is right. I wish I could work until I feel worse, but I'm off till cleared to fight fires again. I start 30x rads Wednesday the 25th, and should end Oct 6th, just in time for Halloween and my new IMRT mask costume! Watch out kids!
Can not say enough about the firefighters I work with....I have had my Lieutenant, other LT's, other firefighters, and even my Captain work on their off days to slow my burn of sick leave down. A humbling experience to benefit of kindness and love from so many. I promise to fight the good fight!