Well, I have finally arrived in Vermont to care for my sister Barbara. This week is her 3rd week of radiation and her 2nd cysplatin chemo. My fear of seeing her after her tongue reconstruction and neck resection (?) has passed. I was overwhelmed when I first saw her swollen and crooked face and neck. Her face looked bloated and we cried when we saw each other. Her scar on her arm where they took the tissue to reconstruct the tongue is the worst. Horrific. And she keeps it open, uncovered. We can't seem to get her to take it easy. She wants to care for everyone. Worries about all of us coming in from out of town and our needs. She is tired from the radiation, and has been sick a few times from the chemo. We are waiting for manuka honey to arrive from my friend in New Zealand to help with her thrush she now has on her reconstructed tongue. They say she will have to have more surgery on the tongue as some was damaged by the brachy radiation in the hospital. It seems overwhelming and I can't believe she is holding up ... tomorrow I start the routine of driving her from Woodstock, VT to Dartmouth, NH for her daily treatment ... I hope I can help her ... I just want her to rest and be cared for.

You have to be very careful with thrush. It can have very serious consequences if it gets into the esophagus or worse, goes systemic. See:
http://www.oralcancerfoundation.org/dental/candida.htm


They had me on massive doses of Diflucan for months.

Hi Gary,
Thanks so much for the info. I have forwarded it to my sister to read in full. She stopped taking the medicine for two days (nystatin) because the pharmacy didn't have it in ... I insisted she pick it up from another pharmacy. I want her to read the article you sent me in full so she understands the seriousness. Myself today, did not feel the doctor expressed how serious this condition can become if the patient is not aware of it's seriousness. She also went out and bought a water pik today as recommended by the radiologist to keep the oral cavity, tongue and teeth cleaner. We picked one with a special tongue attachment and several settings for the strenth of the spray. She said it felt very good.

Thanks again Gary.
I will keep you in my prayers.
Many thanks.
Betty

Hi Betty, first I want to say that I think you are a remarkable person. God Bless you!!! My sis helped me during the last weeks of radiation, (my husband had to leave the country for two weeks)she moved in with me and I will NEVER forget how wonderful she was to me, it brought us together even closer. I am two years out but the scars still bother me, however, I realize how very much I have to be grateful for and the scars don't seem so bad. SMILE!!!Anyway....after all that, thanks for the info on the water pik, I did not realize they had one with an attachment for the tongue. You are in my prayers Betty and so is your sister. Love, Carol