JANUARY 21 — Every so often someone reaches out to ask me questions about public healthcare, questions that I do my best to answer.
A woman said her relative was facing charges of RM22,000 per immunotherapy session and would need 36 sessions for their lung cancer.
I thought my RM10,500 for two cycles (where I opted to take only four cycles) was frightening enough.
Another friend with cancer has been prescribed medication that would cost RM7,000 per month as maintenance post-cancer treatment and was told her risk profile was higher due to multiple factors.
I am lucky in a sense that my medication is not as prohibitively expensive as it would have been just a decade ago.
Yet newer, more effective treatments come with large price tags and there are many cancer patients out there who would have a better prognosis if they had access.
It isn’t right that money should determine your chances of surviving cancer.
If I hear someone say something like “Oh, Malaysia can’t afford it” I can point at the ridiculous wastage and questionable expenditure well-documented in the annual auditor-general report.
Recent corruption exposés have also shown more rot than even I anticipated; MACC will be very busy.
As I reach the final stretch of my cancer treatment, with just two more infusions left, I keep thinking about how the public healthcare system and its workings are still too opaque.
WIth the noise around using gen-AI for everything including replying emails I would rather see us fixing the far more essential — digitalising records and giving patients information on their options where funding is concerned.
Why can’t I look up easily what cancer medications or treatments are available in the public healthcare system?
Why is there no single point of reference for me to look up for cancer patients wanting to know their options?
I have tried in my free time to compile the data but the information is scattered and I have found my assumptions or what I thought to be reliable narratives debunked by patients I have met.
My own physical challenges still dog me; attempting to assemble a kitchen table on Monday left me sore and aching all over, with the added indignity of my efforts all being for naught as some parts were damaged in transit making the whole structure unviable.
Goodbye RM200 and hours I will not get back.
My tabby cat, ever the critic of my decorating attempts, has also declared the cupboard unfit by, of course, peeing on it.
As always my left shoulder is still stiff and unco-operative but I find it easier to lift heavy objects, my knee issues go away quickly after a good mobility session and I can walk but move like an old car, needing to start slowly and only being able to walk fluidly once I am sufficiently warmed up.
Getting up from a sitting or lying position is still a bit of a production.
It involves gritting my teeth, a sharp inhale, followed by loud exclamations, mostly cursing.
(In funny news, my sister visiting from the US apparently did not know the meaning of a certain Hokkien swear word as she had learned it from... Malay speakers)
Yet I still live in hope; once my immunotherapy ends, I hope my body will respond better to my attempts at getting it more limber.
My younger “cancer friend” has been snowboarding in Japan to celebrate the end of her own active cancer treatment and looking forward to my own planned celebration (which will mostly involve browsing strange bookstores and squinting at street market signs) keeps me motivated.
I have been lucky enough to have, quite literally, bought myself more time with the help and support of both friends and strangers.
There are people out there who need championing, government departments that need prodding and fried chicken that still needs eating (a shop that specialises in my favourite kind has opened less than two kilometres away from me).
So I will wake up and marvel each day at how my still-shaky legs get steadier, little by little and as the Year of the Fire Horse approaches I ready myself to meet it, to dream of the day when my own weak, slow gait will quicken into a canter and then a gallop.
Onward to hope, forward with purpose, ever willing to seize each incomparable gift of a day.
