When a surgeon removes part of your brain, statistics reveal what will likely be affected (e.g., speech, movement) because different areas relate to different tasks. My brain tumour was in my occipital lobe, which is your vision centre, so going into surgery I knew that there was a 95% chance I would lose my right peripheral vision. With any brain surgery, however, other parts of the brain may be affected. Wires can cross and get mixed up. For example, what used to feel hot, could now feel cold. What felt good, could now feel bad.
I focused on these aspects after surgery to notice any changes. Everything seemed in order. I didn’t wake up with memory loss, failing to recognize my gorgeous millionaire husband, like in the movies. I remembered my real husband who was still gorgeous but not suddenly rich. The hospital food was still terrible. Removing the staple in my head still hurt like hell.
What I didn’t anticipate were the mental health issues that would arise, almost immediately after surgery, fueled by a lack of sleep and a high dose of steroids. As someone with loved ones who grapple with their own mental health, I know how difficult it can be but I’ve never personally had to face issues.
Let me first disclose that I have quite a few degrees, including a PhD, and at no point did I question if any of my mind trips made sense. They became my reality.
It started after surgery, when I went in for my first CT scan. I was suddenly a ninja and could record information with my eyes by secretly looking around the room, when the nurse looked away, and was tasked with recording as much information without getting caught.
My second mission was to remember a code, which I had nothing to record it with (my eyes no longer recorded), but the code change from numerical to one unlocked by a sequence of movements. Afraid that I would forget the code, I repeated it, even to the point of refusing to leave the bathroom, fearing that the code would be lost forever.
Then my whole experience of time shifted. It worked like a zipper. Whatever actions happened needed to unhappen, but when the action was reversed, it played out more slowly, so a small moment was unwound at great length. It was almost like having a heightened sense of awareness, where every tiny detail was noticed.
By this point, things were probably getting scary for my husband. I struggled with distinguishing between what was real or not. My husband had to frequently remind me, “This is reality” when I would question the things that were happening around me.
In my last episode, there was a test I needed to pass, and to my dismay, after multiple attempts, I didn’t pass it. This set me into a fit (as a true scholar at heart), which included utter dismay, followed by a strange meditative trance where my head and torso swayed in repetitive circular movement while I sat cross-legged on the bed. The nurses moved me to another room to be watched but I hid under the blankets the whole time so that I didn’t have to undo what I saw. Zipper time was still in effect.
When I was moved back to my room, I remember crying with my husband because I thought that after everything he witnessed, I was going straight to a mental institution, where no one would visit me and I would be stuck in these mind trips forever. I cried that I would never again find reality. I felt desperate. I felt abandoned. Sedative drugs finally knocked me out and gave me the sleep my body so desperately needed.
When I woke up, most fortunately I was back to the same old me, in real time, no longer a ninja or meditative guru. The experience showed me just how fragile our mental health is, and with the right combination of factors, the line between perception and reality is easily blurred.
What I also discovered was that I developed a heart arrhythmia, atrial fibrillation, which happens when your heart chambers stop working in synch. It causes my heart to race and if my heartbeat gets too high (e.g., 180), it leads to what feels like fireworks going off in my body, likely a neurological response. I experienced these fireworks many times in the hospital, not knowing what they were, which likely also compounded the mental health struggles I faced. It was only months later when the same thing happened after taking a high dose of dexamethasone, this time for chemo, did my heart race and the fireworks ignite, which led to a diagnosis of an arrhythmia.
I also saw a true test of marriage. My husband and I don’t always see eye to eye. Our marriage has certainly been tested when parenthood and a cancer diagnosis happened at once. You don’t pay heed to the “in sickness and health” part of the vows until a true test like this comes along. But in the moment that I cried to him that no one would visit me, suddenly unloveable, that I would be locked away for ever, he reassured me that it would never happen. He felt my sorrow. He cried as I cried.
Our supporters carry us through the tough times, reminding us that we are loved and showing us compassion. Some people find strength from loved ones, other people from their faith, and sometimes it’s a health care provider or even a stranger who leaves us with kind words that fills up our cup. Supporters though may not know what to say, how to act, or how to process everything.
From my own personal experience, loved ones need support too. Boundaries are necessary to protect the mental health of supporters, often something that is much overlooked. We all need outlets, whether it’s therapy, exercise, writing, social time with friends, a glass of wine or whatever helps process these emotions.
My experience in the hospital is one that keeps coming back to me in the quiet moments, so I felt called to write about it, if anything, to show that, like cancer, mental health issues affect all of us and can happen at any point in our lives. We are not immune. But we are also not alone.
#mentalhealth #awareness #cancer #cancermommies #brainsurgery #getloud #camh #MentalHealthIsHealth