Laurie - As a newby to this journey, can add only one piece of advice, and I would reiterate what Leslie said - be the squeaky wheel.
Advise: Ask the ENT/surgeon's office - if he has a good nurse, use her. As you meet with the different doctors, find that "good nurse". A good nurse is worth her weight in gold - full of information, helpful, knows the system, knows who to ask if she doesn't know the answer (and will admit when she doesn't know), and is willing to put extra effort in finding the answers.

Siteman is located adjacent to the hospital my husband was in after his ND. Our ENT referred us to the RO, who was either doing rounds at the hospital or stopped in to see him for a few minutes after the surgery. She was there only a few minutes, during which her nurse gave me phone numbers to call (the nurses) if we had any questions and told me to contact them the following Monday to set up an appointment. When I called, the other nurse scheduled Mike for a simulation/mask fitting for Feb 5th. After I read this board some more, I called her back and insisted on an appointment to discuss my husband's treatment. She tried to schedule us a little extra time on the 5th and I told her that would not work, because we only knew that he was having radiation but had too many questions to wait that long. (I wasn't rude or snotty - although I am quite capable of that if needed - I think the slight edge of hysteria in my voice convinced her.) She "squeezed" us in last week. (This same nurse told me Mike would not get a PEG because they don't like to place them until needed, but the RO said she wanted one in "just in case". At this point, this nurse does not fall into the "good" nurse column in my opinion, but I'll hold judgment for a while before I place her in the "bad" nurse column.) When we saw the RO, she gave us basic info, had her nurse get us an appointment for the MO, schedule the PEG, and moved the simulation up to the 25th.

So basically if I hadn't followed the squeaky wheel advise here, we'd be waiting until the 5th.

Looks like we are on a similar path - I hope everything goes well with your husband's treatment. I am thinking and praying for you and am here if you need me.

This board is a blessing - THANK YOU to everyone who has welcomed me and for all you have posted in the past. You all give me hope.

Shelly


Caregiver/wife to Mike, age 48 used chewing tobacco - quit
SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+
L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck
Siteman Cancer Center
Port in Jan 27, Peg in Mar 3
IC 28 Jan & 18 Feb - TPF
CRT Cisplatin x3 start March 10th