Sometimes I have to take a step back and think about all I’ve been through just to realize how strong I really am. I read my surgery reports. Yes this makes me cry but it lets me remember everything that I’ve been through. When a doctor notes “anxiety level 10” I feel like saying wouldn’t you be stressed in my shoes? Some Doctors become disconnected because they see so many patients pass away. It’s a norm for them. Well it’s not for us patients. We are scared.
I talk about my Major Stroke often lately. It happened the night after my second brain surgery (in the hospital). I was in ICU after the operation. My family came in to see me. I kept repeating “I alive” over and over. My boyfriend said this put my mom into tears and they were told I’d be monitored overnight in ICU/PACU. My family was told to go home and rest. The stroke happened late that evening. I wasn’t told. My family wasn’t notified. I wasn’t alert the next day when my family came to visit. I was still being held in PACU (Neuro/Cardiac Unit) but nobody thought to question this because my I had Awake Brain Surgery so they just assumed this was normal protocol.
The next day I was transferred into a regular room. I was semi alert. I couldn’t walk but I do remember trying to eat. I couldn’t hold my fork. I realized I couldn’t do anything! I could only mumble words. We were informed before the surgery of the huge possibility of paralysis so we thought maybe that happened? Again nobody explained anything and when my family asked it was implied that my surgery went “as expected”. As expected? What does that mean?!!
After I was Released I was sent home with a walker and a portable toilet. Lots of medications for brain swelling, etc… I was set up with at home rehab to help me relearn everything. I did relearn almost everything in about 3 months. Certain things I can longer do and certain things I do differently.
About 4 months after my surgery I was still going through Cancer Treatment but I wasn’t feeling sick. I didn’t get the common fatigue, flu like symptoms, etc… This all started 7 months after I completed treatment. This is known as “Delayed Permanent Side Effects”. I became extremely sick. And since then I’ve been diagnosed with many things caused from treatment. I’ve been going through test for 2 years now and still being diagnosed with new and rare diseases. Most recently my Coagulation Test came back as flagged. It shows that my blood is dangerously thick. This causes blood clots. I do have mini strokes aka TIAs but having thick blood is a definite that there will be another big one. I’m extremely scared. This will most likely kill me or I’ll become a vegetable for however long I have. Reminding you of my diagnosis of Radiation Necrosis aka My Brain Tissue is Dying.
My mom had requested all my medical records from day 1. In late 2018 we decided to read my surgery report. We were shocked to see I had a stroke. We brought this to my Neurologist (He wasn’t working at my hospital when I had the surgery) attention and he was shocked as well. Papers were lost. Not in the system but were on my Medical Records.
• I developed Radiation Necrosis because I was given treatment too soon after the stroke which increased the White Matter Disease on my brain.
• The machine broke for 2 days during my treatment (yes this happens often in ALL hospitals) and I was overdosed.
• My Brain had minor swelling and the machine missed the targets.
These are all theories of why. Yes this happens often with Radiation on the Brain. This ruined my life. My families lives. LITERALLY! I’m picking out a Urn when I should be worried about normal things but instead I have to worry about my final days.
So I ask you, would trust a doctor if this happened to you? They have to earn my trust. Two Doctors miscommunicationed and the lack of paperwork is why this is happening to me. I had to tell them I had a Stroke with Ischemic Disease and blood products on my brain for over a year and half after my surgery!
So yes, my anxiety is a 10. I feel like saying “When you go home to your family, do you think of what you did to mine?”