Jan 26, 2012 - 1:26 pm
Feeling very confused since Tuesday. Let me start from Friday, the results from our first follow up MRI since surgery in August.
We walk into the cancer clinic and sit to wait for our appointment. I notice people stare at us when we walk in. It is mostly people over the age of 50 every time we are in there. It’s almost as though they want to ask, but they just stare instead. I’d almost rather them ask. Anyways….
Tuesday we go into see the neurosurgeon for a follow up visit. He pulls up the MRI scan and reads a report. He shows Jordan on the screen how spinal fluid has filled the hole where the tumor was and explains how that is good and he is healing very well. He does a check up and asks health questions and like before he is great and everything is fine. No one is saying anything so I pipe up and ask “that’s great that he is healing well where the tumor was removed, but what about the remaining tumor” he says exactly this “WHAT?” … he looks again and says no, what is left is called a margin. There could be something underneath there we can’t see, but it could just be scar tissue… then he repeats margin a few more times. Still not understanding and seeing the frustration in the doctors eyes (lack of English and bedside manor) Jordan just shrugs and takes it as good news and we leave.
As we are walking to the car I ask him “did he really just tell us you do not have a remaining tumor? Or am I hearing things, why did you not ask more questions” he says to me “I can never understand anything. . . I’ll make an appointment at the cancer clinic and find out who is making the mistake”
Has anyone had this “margin” discussion? I am feeling very frustrated and lost. He never seems to care to much about what they say or what is going on. Makes it to real I guess?