I don't think so Doc!
We've been sticking up for ourselves since we were little, getting pushed around on the play ground. Why do things change as we get older? I am sitting here blogging looking at an outpatient survey that I got in the mail from the hospital. I have filled them out before, honestly and returned them.
Today is a little different.
Today I made the phone call to gather my troops. I did what all patients MUST do when they feel that things are just not right. I don't feel good! My body is telling me that something is wrong. Yes, I may be NED. That's fantastic....but, I don't feel right. It may be that I have been pumped with more drugs to balance me out. My poor body and my brain is so tired.
What's even better, the hospital gave me the wrong medication dosage to take daily! You have to love the local ER!
Was the last head-pain-trauma-ache from lack of steroids or brain swelling? I want an answer. I want an MRI. I am not waiting until November 14th to see the Dr. I will get this done sooner. This is my life, I am NED and will stay NED!
Why the heck did my Neurologist put me on anti-headache migraine meds (when I clearly stated NO). Why did I let him?? Because, now when I said I don't want to be on them.... I have to wait. I may get a seizure. What? I have never had a seizure! Why the heck would I get one now! What is going on! I am a Fu**in guinea pig to some of these doctors!
Today an email went out to my Neurosurgeon, My Head and Neck Surgeon, Radiologist...maybe even my Dentist. I want everyone to figure me out! Get me a scan. Find the problem. I will not sit around and wait for another in the middle of the night attack.
I am already seeing my vision getting blurry...off...I know what happens next.
Be your own Advocate! Speak your mind to your doctors. Don't be scared. Tell them how you feel and if one can't help you....find one that will.
Now my anger has turned to sobbing tears. I am letting this take over my life again. I thought getting passed this summer would be great. I started to dance again. I got my eyebrows re-tattooed. Yes, I lost one during radiation a few years ago. It was so traumatic for me. 28 years old and one eyebrow. Sounds silly, but you really don't understand that our face says it all. For a head and Neck Patient, Survivor, we struggle with our appearance. Scars are more visible than those on a breast or belly. I have them running down both sides of my ears, neck. My port scar, the 10 inch beauty on my stomach. Beautiful reminders....battle wounds! Red burn looking marks on my forehead and eye (bloodshot) from treatment. Bumps, pins and screws sticking out from surgery.
I'm crying because yet again I am at a standstill. I am cancer free and still weighed down by this horrible disease. It just lingers in the air.
I don't want to be tired anymore.