Hello All ...
YOur words and thoughts are a great comfort to me tonight. Yes, you are all right. I am learning quickly to wait for her to ask me what she wants. Today it was simple things that I did, without her knowing, like keeping bottles of water in the fridge for her and having them ready and waiting when we left for treatment and errands she had to run. Also, I prepared her protien drink. Also when we were sitting at the hospital after radiation and waiting to speak to the radiologist, I just rubbed the back of her neck and upper shoulders, she moaned with relief. She said "thank you so much honey." But, when I tried to help her tie her shoes, or help her with her dressing she quickly reminded me "I am not an invalid," so I moved on and let her be. I understand her needing to feel normality. We talked today about 5 years ago when I myself had unexpected lung surgery and I honestly could not move or do anything for myself for many many weeks, yet what she has gone so seems so much worse and she is UP and AT EM !! We were able to figure out that I could barely breath, therefore it held me back. But when I look at what she has been though, just the initial 15 hours of surgery, I am still in awe that she is doing anything at all !! We had good and bad today with the treatment. She is getting very hoarse, and almost cannot speak, which was her saving grace that she could speak, even though it is impeeded by the new tongue. She insists she is just talking too much, and the radiologist made her see that the effects of the radiation are starting. She did let me take her phone calls tonight and tell everyone what she wanted to say and her and I are starting to whisper only to each other and I am talking for her. She let me. Didn't complain. Also, she is eating so well on her own. Took someones advice on the forum and told her to use the chop stix and move the food back and forth. She is just doing it with her finger, and I am going to look for a good pair of chop stix for her. Tonight she had to have KFC, and mashed potatoes and cole slaw. She did wonderful. She is drinking so well also. Has lost about 22 lbs., but she is about 70 lbs. overweight, and the doctors are keeping a close eye on her nutrition. Tomorrow is chemo also with the radiation so it will be a full day at the hospital. Today, she pulled her hair up in a bun and I really got a good look at the neck scaring. Yes, it is a hard scar to look at, and her arm really bothers me, not so much because of the appearance, but because it looks painful. She assures me, she is ok. We went shopping after treatment, her request, and tonight she just wanted to take me riding around the beautiful countryside of Woodstock. She turned her music up loud and just directed me to drive. Then we sat and fed the trout in her pond out in front of her property. It was a good day for her, for us as sisters. Thank you all so much for your words of kindness and support. I also have all of you in my prayers ...

Lots of tender hugs.
Betty

Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.