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Hi mates,
I'm back. Don't know what's going on with my computer. It's like it has a mind of it's own, just like our disease. I don't have my printer working, but at lease I can get email. (I hope).
I heard there were some posts sent to my son's email address. Being it's Friday nite, my son isn't home and now that I feel ready to read the posts, I don't know his password!
I have spoken to some of you and wanted to thank you for all your support. I still cannot or do not fully understand what's happened or how it happened. Right now, I just feel stunned, frozen and tremendously let down by the medical doctors who have neglected to give me the coutesy of a personal response to my overwhelming concerns and those of my family.
I'm afraid that most of us on this list have become victims to the "it's Thursday or
Friday afternoon and I haven't heard from my doctor all week" syndrome. Especially after a nerve wracking MRI. Maybe new legislation should make these calls mandatory to patients awaiting results or calls from their doctors who don't give their them the coutesy of a call regarding surgery or results within a reasonable amount of time.
As it turns out, noone from my doctor's office in Boston bothered to call me about films sent regarding proton beam treatment for my recent recurrence. It apparently didn't matter that we had driven to Boston for a personal consult. Initially we had been told that I was a candidate for the proton beam. I was thus keeping a close eye on the tumor. I had also been told in Mass. that the tumor was too small yet and not "defined enough" for surgery. So we waited a few months and I had another MRI. My husband was eventually informed after some calls to the doctor's office, that my best bet would be surgery as per the doctor. I thought it was a mistake, or maybe that he had forgotten our conversation. We have, to this day, not received a personal call from neither the doctor in Boston, nor the from the Dr. in NY despite my husband's repeated efforts to speak to them just to try and make sense of all this.
I hope you can understand this, because I'm still confused.
This should NOT have happened.
Under normal circumstances, I am propelled to action. But I have been motionless and too upset to question or fight back since yesterday afternoon.
Forgive me if I don't post for a while. I have to get many answers myself.
Love ya all,
Delia
malignant meningiomas
surgeries X6
radiation therapy
gamma knife
other treatments and therapies
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