Almost every night my parents would wake me up because they heard me scream in my sleep. I can’t remember when the nightmares started. Sometimes I could remember them, but mostly I didn’t.
I was finally out of the hospital, my new “home” was a lovely apartment, the home of a generous couple whom my parents knew from our time in Salatiga. It was a really nice place and I was truly grateful but I was miserable nevertheless.
A new routine was established. I woke up in the morning, breakfast, practise walking with my dad around the apartment, lunch, sleep, dinner and more sleep. I wanted to just sleep all day. I thought sleeping would quicken the day. Every two weeks or so I had to go to the hospital to receive chemo at the hospital’s Day Care. This is where patients receive their chemo for a day without having to be admitted into the hospital.
The place was not big with maybe 15 or so beds. Each bed had one of those IV machine, ready for chemo. The nurses were all new, I didn’t know a single of them. The patients were from all kinds of ages, old and young. Being there for the first time, opened my eyes. I was not alone.
Some of the patients happily chatted with each other, one or two looked weak but mostly they weren’t as miserable as me.
“Why are they so happy?”
“At least they can walk..”
“I bet they live around here..”
I made excuses in my mind for being sad and miserable. It went on for a while.
When I wasn’t at the hospital, my parents asked for a physiotherapist to come to the apartment three times a week to work with me. I was not pleased. I just wanted to sleep, not exercise.
My physiotherapist was tough on me. She knew I had the strength but I just didn’t want to use it. She pushed me so hard that often I hated her for being so mean.
“Doesn’t she know it hurts?”
She often told me to walk to the gym, which meant I had to get out of the apartment, take the lift down, walk a few metres and then walk down these stairs to finally arrive at the gym, only to be “tortured” more with practises. I wore my bandana and face mask, people looked at me curiously though most didn’t really care but still I hated it.
But I did it anyway and I am glad she pushed me to do that otherwise I would probably still be in a wheelchair right now.
I complained a lot, everything was wrong. I wondered over and over again when I could go home and when I would be healthy again. I wanted to be me again, not this girl in the mirror whose skin was yellow with thin legs, chubby cheeks from steroids and bald head. I was so embarrassed looking at myself in the mirror that I avoided looking at it and took my glasses off whenever possible.
The effects of this set of chemo was more torturous than before. I was having nausea, my skin darkened and to top it all of I was still having pain all over my body. Often I couldn’t tell whether my pain was from the chemo or from the steroid withdrawal. It was just one big confusion of pain and misery.
I was helpless. I was lonely. I was mad at myself. I knew where those nightmares were from, though each time I woke up, I thought to myself that this life I was living, was the real nightmare.