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High grade Glioma - What questions should I ask?

Brain Tumor | Last Active: May 2 7:18pm | Replies (58)

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@eileen61

Thank you for your reply. I basically disconnected from the internet this weekend, as searching for info was making me quite panicky. My next scheduled appointment is Aug 27 with the surgeon. The neuro oncologist is wanting to see me sooner, so I'm waiting to coordinate the necessary appointments needed. I live 7 hours by car away from Phoenix, so it's not like I can just drop by at a moment's notice. Plus my husband needs to coordinate time off of work. It's very much a challenge to know what happens next. We both work in healthcare, so my knowledge base is probably more than the typical patient, but that's not always a good thing. I personally know no one who has dealt with brain cancer. Everyone knows someone with breast cancer, and my husband is a two time cancer survivor ( Hodgkin's and renal ca). I'm hoping to hear from my care team today with dates. In the meantime, I'm dealing with trouble from my employer (yes, a doctor's office) who is making noises that they need to replace me, as I'm the only one who does what I do and brings in a great portion of the revenue. I don't want to get fired, mainly because I can't lose my health insurance... It's enough stress dealing with the diagnosis, yet alone this external stuff.

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Replies to "Thank you for your reply. I basically disconnected from the internet this weekend, as searching for..."

@marcyprof, what a marvellous response to Eileen.

@eileen61, you were are to disconnect from the Internet when the information is no longer helpful and sends you into an overwhelming spin. However, I'm relieved that you've returned to tell us how you are doing. I know what you mean that working in healthcare can give a base knowledge that can be both comforting and troubling.

Dismaying that you are having to deal with such a reaction from your employer when they should know better to give you time to digest the diagnosis before thinking about practice logistics. I suppose this is their fear coming through, that they will have to manage during your medical absences. They will manage. I'd like to bring in @becsbuddy and @kristennursepatient who have had to navigate these employment waters. They may have some thoughts.

A journal is a great idea. It sounds like staying organized helps you. That's what I need to do to in times of stress.