#50802 07-06-2004 04:16 PM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | 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.
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.
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#50803 07-06-2004 08:06 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#50804 07-07-2004 04:38 PM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | 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
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.
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#50805 07-08-2004 03:24 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | 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
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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