well, that was a complete waste of time...i called RO office and spoke with an asst that i trusted so much 3 yrs ago-today she was someone i don't know. i told her what has been going on, asked her to relay my concerns, to ro, she said she didn't know what i wanted him to do? i said, i would like him to call me back and advise what our next step should be considering that all the spec we are seeing don't know how to handle post rt. she said she would have dr or his resident call me back...i honestly don't think he will be give msg directly. do they give msg to dr or pass it along to res and not share? the ro gave me his cell # yrs ago and said if i ever had any concerns i could always call him. so tempted to use it if i don't get a true response. i know, her being out of his care for over six months maybe i shouldn't...but they all keep blaming rt and no one knows what to do...i certainly have no clue, i want to verbally blast everyone, but that is wrong and would set us back even further. I know if i could speak to him directly, he would help an d take the time to explain, and just maybe i could get mom moving on the right track. to top off the upset with mom crying earlier, my nana, her mom, called to see how mom was doing and she broke down in tears...i am in tears of fear, sadness and frustration. it truly feels like they don't care. its a business...whatever happened to first do no harm???


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.