Soon after my surgery, things started to go really bad for me. The craziness extended out a couple weeks due to delayed communication from my doc. My pain level began increasing greatly, but when I reported it it, I didn’t get an appointment — just advice to take Tylenol. The pain continued. As the pain got worse and other symptoms cropped up, we tried to get help and seen by the doc, but they just kept telling us to go to the ER. I feel like I wouldn’t have ended up in the ER if my doc had taken me seriously and seen me earlier.
During this time Haven Hospice nurses were being proactive and coming out to our place to help manage the pain as well as keeping an eye on me. I began using wrong words (expected for problems in the area of my brain that had the surgery), as well as not remembering memories. Apparently I even forgot about what a bathroom was and tried to pee in the closet.
My pain and other symptoms got so bad that I ended up in the ER and was admitted to the hospital. I was barely there mentally during the first part of my hospital visit. An MRI showed that I had really bad brain swelling at the surgical site, and I was really lucky and had pneumonia, too. Due to the swelling I was having symptoms kind of like I’ll get when the cancer grows back in that part of my brain. It was initially terrifying to me because I was being asked basic questions like “What year was it?” and “Where are you right now?” and I couldn’t answer. Even though I was having cognitive issues, I was aware that I couldn’t answer and saw the looks on the nurses’ faces. I felt like my disorientation would mean I’d have no say over how I’d be treated. I felt like an object. The people who gave me initial care in the hospital seemed to ignore me like I wasn’t aware. I felt like they didn’t take into consideration my pain when they’d move me around and stuff. It’s a big leap to conclude that just because I couldn’t answer certain questions meant I was unaware of what was happening and what people were saying.
Eventually when I was able to communicate better and had some great nurses, the hospital experience became less scary. One of my favorite docs made his way to visit and really pushed the release schedule forward, which I appreciated greatly. He also came up with a plan for helping keep me out of the ER in similar situations in the future. I was eventually moved out of ICU to a level where dogs are allowed to visit. I was super happy about this. Our dog Wicket got brave enough to visit me and I was much happier. Within an hour or two of his arrival I was let out of the hospital.
After arriving home I was feeling pretty scared of the hospital, and of how the swelling messed with me. It took me a few days to get over being afraid. I’m hoping for a loooooonnnnngggg break from the ER and hospital ^_^.