Oh my gosh. I am so sorry you are having to deal with all that. I agree that you need to get people involved over their heads. And the next time you see your doctor/surgeon you need to tell them everything that has happened. Believe me they have a pretty big say in stuff. And KEEP sticking up for yourself. I know it's hard with the trach. You might keep a sign like NO!!!! or GET THE DOCTOR NOW!!! on one page sheets to hold up when you aren't getting the point across. It's nicer than hitting them ;-)

I will pray that you are able to get some help and that they are able to get the doctor to figure out what is wrong.


31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10