MARCH 12 — Life is funny sometimes.
I passed by a car workshop the other day and saw my neighbour’s car — the same car that just missed running me over.
While muttering to myself that I hoped he had learned to drive the damn thing, it also made me think about the randomness of life and the illusion of control so many will cling onto, for the sake of sanity.
My last physiotherapy session’s effects lasted only about an hour before my legs stiffened up again, much to my dismay.
A session of restorative yoga fixed my knee for a few days before the stiffness came again and the pain going down stairs was like having my knee punched through by a stake in the floor.
I found out later I had developed moderate hyperkalaemia or excess potassium in my blood.
It was the cause of my muscle weakness and the occasional moments when my bladder felt like it was on fire.
Those blood draws I hated? If it wasn’t for the tests I wouldn’t have known and gone unchecked I could have suffered paralysis or cardiac arrhythmia.
I am going to complain less about those blood tests.
My doctor immediately scheduled me on a drip the next day and I was also prescribed medication.
Within just a day I could walk normally again though I did end up spending a lot of time expelling all that extra potassium from my bladder.
I am now avoiding high-potassium foods as I really don’t want to re-experience the stiffness of the last few weeks and I am also a little concerned for my poor kidneys, that must have been so burdened they couldn’t filter the extra potassium the way they usually do.
Hair is nothing, surviving is everything
Oncology departments feel a lot like impromptu support groups.
I am younger than many of the patients there, which draws some curiosity especially as I have decided to give up on hats and wigs, instead leaving my bald head in view.
With all the things I need to juggle for my hospital visits — water bottle, snacks, appointment books and forms — leaving my wig, hat and all electronic devices besides my phone, power bank and maybe a portable game console just made more sense (we do not want a repeat of the swimming pool in my bag incident.
An older woman called me “adik” (younger sister) and asked what I was there for and it became a casual impromptu discussion with other women in the row which of course saw mention of my bald head.
Another elderly woman said she had lost her hair twice, implying she had had cancer more than once but she seemed serene and, I noticed, had a full head of hair.
Hours later I was in a hospital bed getting my first immunotherapy treatment and next to me was also a nice chatty older lady who helped flag down a nurse when blood from my veins had started shooting up my IV line.
Yes, the conversation started about my hair again, when I started losing it, why I chose to shave and she too shared why she’d been happy enough to just wear a scarf to cover her scalp.
“Botak tak penting, hidup lagi penting! (Going bald doesn’t matter, living does!)” she told me.
It gave me no small measure of comfort to see all these women, 20 to 30 years older than me, remaining cheerful and taking the whole process as a matter of fact.
Thinking about those women has made a hard week bearable as the side-effects of my first TCHP treatment have been the worst so far.
My friend asked me, “So where does it hurt? Or should I ask you where it doesn’t?”
She was right.
Except for my head and neck, my muscles, bones and joints took turns to keep me up — one night the pain was so bad I couldn’t sleep so I just ran my foot massager over and over to distract myself from the ever-present pain.
Working from home at least meant I could roll over and lie down every hour or so but the pain constantly chipped at my consciousness, with no recourse, the painkillers given to me inadequate, the hot bandages just distracting and not soothing.
I also found out you can have both constipation and diarrhea on the same day (though of course not at the same time).
It makes me empathise a lot more with those who have painkiller addictions and I wish we had better ways of coping with pain instead of telling people to just endure what feels, at times, unendurable.
Stoicism is overrated; pain shouldn’t be an inescapable feature of illness, chronic or not.
On the bright side, my TCHP seems to be having some effect as my tumor has continued to shrink and surgery looks to be on the horizon in June.
After the surgery I will find out if the cancer cells have been killed off and I have achieved what doctors call pathological complete response (PCR) or no cancer detected in my cells.
The chance of that happening is, however, less than 50 per cent.
Still, hope remains eternal and I’m crossing my fingers that I can take a break from chemo permanently and only have radiation as well as herceptin shots to endure.
Feel free to get me a coffee on my Ko-fi and I hope to share better news on the horizon.
Thanks again, readers, for making me feel a lot less lonely on this long journey to recovery.
* This is the personal opinion of the columnist.
