Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Amy, I'm happy it's going well so far. You will feel better when John is alert and communicating with you. Be sure to have paper and pen ready. My family didn't use a dry erase board because they didn't want me to have to write some things over again (for example, if I had pain I could reference where I already wrote that) and they also wanted the notes to go back on and to show to the docs if needed. My oldest daughter still carries one of the notes in her purse as does my mom. I laugh at the one where I wrote "Please don't leave me alone, the nurses might kill me"! I did not get the greatest of nursing care the first few days, lol. Take care and be sure to listen carefully to anything John tries to tell you when he first wakes up. I desperately tried to relay to everyone how much my leg hurt but it took a few days for them to realize it wasn't the normal pain I was feeling, that there really was a problem. If he consistently tells you that one certain area hurts, make sure the docs check it out thoroughly. Love, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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