Cancer Talk #13: Frustration, Confusion and More Pain

March 2015

(I decided to add month and year so you know when all this happened)

My first chemo went like a breeze. Maybe it was because the doctor gave me a smaller dose than the normal one as he was afraid to make me more jaundice. Maybe it was also because the pain from steroid withdrawal was much more intense.

I didn’t have the nausea or the hair fall or the other scary side effects people were talking about. However I did feel more tremor on my hands (I had tremor before chemo from too much steroids) and also constant pins and needles at the top of my fingers. I could handle that.

What I couldn’t handle was the pain from the steroid withdrawal that was getting worse and worse. It was the knee pain for several days, then it went away. It was soon replaced by back cramps. Every time I moved my back, it almost always ended up in a cramp.

I started loosing the ability to walk normally and had to seek for assistance whenever I needed to go to the toilet or elsewhere…not that I had anywhere to go anyway.

I would sleep with my body laying flat on the bed and try not to move the whole night because sudden movement would mean severe back cramps. You know how when you sleep sometimes your body would move slightly down and you have to pull yourself up to the correct position? Yeah, well it was impossible for me to pull myself up. I just couldn’t do it.

I tried putting on heat patches and muscle relief gel on my back that was recommended by my doctor, though it helped a little, I still had cramps. Every night I hoped that I didn’t need to pee at night because getting up would a nightmare.

In the morning I would wake up around 6, early because it would take me around 2-3 hours getting up. I wish I was joking but I’m not. Every movement had to be done very carefully, usually I would get cramps 4-5 times, 2-3 times if I was lucky.

From a flat position I would turn to the left. Slowly, slowly, cramp, then I would stop at that certain position if I had a cramp and wait until the cramping stopped. Then when I was fully turned on to my side, my mum would slowly rise the bed to a certain angle. Thank goodness for hospital beds! She too had to be careful as I could go into a cramp any time my muscle moved too sudden. She would stop at a certain angle then I would take a deep breath and try to pull my body up with my mum gently helping me. This last movement would almost always give me a cramp where I would then sit up and wait until the pain subside.

For the whole day I would sit on a chair because I didn’t dare getting back on the bed as the whole process of getting up would be hell.

When my doctor was informed of this, he assigned a physiotherapist for me. They taught me some exercises to make my muscles flexible. It was helping a little bit, but physiotherapy is not an instant thing.

I was confused.

Why is my body betraying me? Why can’t I move properly?

I was frustrated.

Why does everything feel so heavy?! Move! Move!

But most of all I was in pain.

Why won’t the pain go away? How is it possible for a living human to experience all this pain? So much pain.

I think for some time I even forgot that I had cancer because I was too focused on my muscle pain. I felt completely useless, I commanded my body to move to how it used to be but it wouldn’t listen to me. For three weeks I was in the hospital and it was just hell.

Finally, at the end of March my doctor decided that I could go home for a while to recover from my first chemo, the chemo I forgot I took.

I was exhausted from my muscle pain, it was still there and didn’t seem to want to go away anytime soon. I saw how exhausted my parents were too and they looked relieved that we could go home for a while. Me, I was anxious of going home, because I still had cramps, and I wondered how I could get myself home without too much pain.

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