Hello all...

Finally I found a place where I can settle my fears and ask others in the same situation for advice. I have a wonderful support system here at home but no one can quite understand what I am going through and it frustrates us all.

I am told by all doctors I have consulted with that my cancer is extremely rare. In july 07 had enlarged lymph node removed from right side of neck found to be a low grade mucoepidermoid carcimona. PET SCAN in Oct 07 revealed no cancer anywhere in body. My thorough surgeon eventually found the primary source coming from base of tongue. Dec 11, 07 had surgery to remove mass from base of tongue, also modified neck dissection to remove lymph nodes from area where original cancer found. 1 lymph node found to contain tiny amt of cancer. Unfortunately they needed to split my jaw to get to the tongue area, and they also placed a trache in. Before I was released from hospital they placed a g-peg in stomach and removed trache. Fianlly passed swallow test on jan 10 so now I am eating small amts of soft foods. Can't chew anything because of the jaw break which has a long way to go to heal.

I am very frustrated these days because to me the healing period seems to be taking so long. Tomorrow i am 6 wks past surgery and my neck is still swollen and hard. This week I actually developed an infection in the neck and had to go on antibiotics which actually have eased some of the swelling. Which I was greatful for. I have been able to stop all pain meds but do have trouble sleeping at nite. Even Tylenol PM hasn't helped me get too much sleep. I am just so uncomfortable and being a side sleeper doesn't help.

I am meeting a radiation oncologist this week to prepare for treatments. I am very concerned that if I start radiation with my neck still swollen and hard that it will always stay that even after the treatments are done. Also I have very sensitive skin and am fearful that the side effect of the RT will be difficult to get thru and will be very painful.

If anyone has been or is in the same situation as me I would greatly appreciate any advice. I am not a patient person but I am slowly learning that patience plays a large role in beating this disease.