Looking around I have noticed a lot of Paraneoplastic sites that are heavily medical with scientific terms that are overwhelming and scary. There are very few sites that deal with the emotional aspect of the illness.
I got ill suddenly. I had 2 viruses back to back, then within 3 months I’d lost my balance completely. I didn’t know or understand why it had happened to me so I read up about autoimmune diseases and I thought I had M.S., which was scary but manageable for the most part. I struggled with not being able to work, with not having the energy to do what I needed to do. I had responsibilities and a life. I had so many questions.
A few months later I was finally diagnosed with PCD (Paraneoplastic Cerebellar Degeneration) and to be honest I was almost relieved to get a diagnosis because I was so ill. To have a scientific reason why my body was letting me down. But then I read about Paraneoplastic online and was extremely terrified and overwhelmed with the distressing information. There’s a reason why doctors warn you about googling your symptoms or your disease. That shit’s scary and it’s nearly impossible to absorb it rationally.
I tried a few different treatments and while my symptoms didn’t improve, they didn’t get any worse either. I was stuck, while my life was on hold. I became despondent with periods of anger. I withdrew from friends, family and online support groups because I couldn’t handle my emotions let alone anyone else’s.
I was diagnosed with cancer and I was indifferent to the news, at that point cancer was almost a welcome distraction from my neurological symptoms. It felt like cancer was inevitable. I was so sick from chemotherapy side effects, I could barely move so I became bedbound and de-conditioned from inactivity. In turn the inactivity effected my mood. I was frustrated, scared, angry, sad, inconsolable. I’ve never cried like that before. I felt hopeless. Then I had a double mastectomy, and radiation. It’s strange to have time go so slowly but not remember much. It was a blur of hospital appointments and stays. I was no longer an active participant in life. I no longer cared.
There’s nothing worse than fear of the unknown. Fear of the future. Fear of yourself. I was so angry that my life got ripped away from me, embarrassed that I had to rely on other people for everything, frustrated that I wasn’t in control anymore. I was depressed and inconsolable and even thought why bother living when life is so difficult.
After my neurologist said there was no more clinical treatments left, I was prepared for the news. It was the start of a turning point. To anyone else the news would be life-ending but to me it was as a definitive answer as I could get. No more unknown, I had my answer. I’d began to come to terms with having a disability for life, I began a program at a rehabilitation facility. Occupational therapy, physical therapy, speech therapy, psychology and psychiatry. The schedule gave me routine which I desperately needed. I was prescribed Zoloft as a mood stabilizer, and combined with therapy my moods definitely feel more stable now. I’ve gained a bit a strength back and I feel like I’m at the point I was before chemotherapy.
So I feel like I’ve hit rock bottom and I’m working at clawing back what my illness has stolen from me. I’ve learned to celebrate the small things.