My son will post until I feel up to it. I will have a netbook at the hospital and hopefully I will feel like it soon. I have a weird way of when I can't sleep I mess in front of the computer. Maybe doing nothing than re-reading stuff but I should feel like saying Hi eventually! I did last time with the tongue...but this is much more involved.

That is why I am up now...took medicine and hurt too badly to sleep but can't hardly stay awake. The infected lymph node is very swollen and has made by neck, chin, back of head and ear swell. Feels like I slept on the whole side of my head wrong and I can't even sleep on that side!

I will just trade one pain for another...and hopefully the newer pain will get better instead of worse, like this pain is. :o(

Wish is was today as originally planned. I am ready!

Michele in IL

Michele - Just wanted you to know I'm sending hugs and thinking about you! Sure hope pain eases up soon so you can be more comfortable. Re the sleepless time -I do the same thing -get in front of the computer and check on how others are doing! Glad to see you have some special people keeping up with you and sending great info and suggestions. Gonna check FB, too for updates from you or your son.

Michelle - best of luck - my thoughts are with you - hope your hospital time is short - sorry you are in pain - hopefully the surgery will take care of it re the sleep difficulties : I was the same way post op - I wasn't in any real pain but the morphine they were giving me made me a twilight zombie- it was one of those situations where I was exhausted but couldn't sleep though not because of pain but because of the trache and my fear of it getting clogged - since no one there was watching me or coming when I called. Hope you fly through the surgery and go home without the trache and NG tube ! Good luck!

Michelle,
A few practical pointers. HAve some one pick up a soft pillow filled with the stuff they use in Beanie babies. I have gotten Cushie pillows at Walgreen's. Do you have Crocs?? I found that they help equalize the differece in height when you have a boot on after surgery. Be sure to have youer doctor order pt for home. The therapist came out a few times and the exexcises helped. You will slowly be able to graduate from liquids to soft to normal foods. A varied menu will certainly help.
THe surgery and immediate post surgical recovery will be rough but the results are worth it. Please pm me if you have any quedtions

Thanks for the tips. Yes, I have my purple crocs packed! I don't go anywhere without crocs...and didn't think about them evening out the height!

I do know where I can get a small pillow with the beanie stuff in it...for the leg to lay on? How big should it be? We saw some little ones and some neck size/shape...$1 I believe!

I will check with PT coming to the home. Didn't need it before but probably will this time.

I have quite a choice of stuff I can eat going from liquid to soft to regular. LOL I am drinking Ensure totally for now, don't think I had it until I was on radiation AFTER the first surgery so that is a big help. :o) I can do yogurt, pudding, baked fish, all sorts of stuff that I had to go to after the tongue surgery the first time out. Nice to know I will graduate to soft and normal!

Since I have had radiation in the area of stitches the Dr. said he would keep me 10-14 days and I am HOPING he would keep me until the feeding tube (nose) is gone as well as the trach tube. If I have to keep them a long time I will be ok learning to care for them but don't really want to get all the equipment and learn it all to have them for 2 days at home. He agreed...but just depends on how I do. I was eating before the severe swelling from the jaw and lymph node so I think I will be able to go back to drinking/soft foods fairly quickly. I am hoping the same with the trach, once they are sure they don't need to go back in for more surgery they will close it up so I can talk and get it removed before I go home.

I hope to not remember much of the first few days! I really hated the neck dissection the first time - felt like my head was going to fall off when I moved - as the stitches pulled. I am hoping this won't be much worse than that around the neck. I am prepared for the leg to hurt more than anything else...as previous posters had noted. The leg should be straight forward... stay off it until safe, then work into it. I HOPE!

Thanks for the ideas...any others are very appreciated. I will have a netbook computer, books, Nintendo DS and lots of things to keep my busy while I am stuck in bed. They wanted me up more last time but I am hoping I can stay awake better this time, since it is a longer stay. I was home at 5 days last time.

Michele in IL

Michele,

You are my hero, we went through our battle at almost exactly the same time and I feel very close to you. You are strong and I know you can kick this shits ass! I will be thinking of you all week til we hear back. I hope this does the trick and you can move on with your life. I must say though on my side, its almost a bit scary coming out of the tunnel. I dont know what to do now...

Your Friend,
Nathan

You sound like you might still be depressed...I am looking forward to going back to doing the things I love to do. I made some really good sales on ebay in the last week or two, want to finish those things up, get back to eating again and living life. I know this has all thrown my son into a tailspin and he is hopefully getting new/different meds because what he had wasn't working. I will be kicking as much as an old lady with one good leg can kick! :o)

Michele in IL

Michele - It's so good to hear how well you are taking care of you, and keeping so busy with everything you do - what a great attitude you have! I'm sure it is so encouraging to others here, too. I check on you and Nate very closely and hope for the very best for both of you.
Nate - You are right, it certainly is scary coming out of that dark tunnel - any change in one's routine brings stress with it even if it's a good change. Both my son and I had that "what now" feeling, for a short time. But you will see, little by little, as you get on with new activities, and interests, it gets better and better! You have come so far already and are even helping others, too! Way to go, Nate!!

Michele, Im thinking of you today. Hopefully you are not too anxious about tomorrows surgery. Soon it will be over and you will be cancer free. Then look out ebay!!!

No, not anxious about it, just ready to have it done. I was ready to have it done last Friday and then it was put off a few days. Bags have been packed and ready to go. :o) Can't come quick enough...so I can be recovering instead of suffering. Just realized they and/or I hadn't called insurance about inpatient...so did that this morning. Whew!

Michele in IL