JAN 22 — It finally happened; my hair started falling like autumn leaves, strands dropping wherever I went, leaving a trail of black and grey.
As poetic as I make it sound, the reality was far cruder — waking up with hair in my mouth and feeling deeply embarrassed to see fallen strands all over my toilet seat.
Walking past a hair salon recently, I decided to step inside and request a full shave.
The shave itself wasn’t the hardest part.
My hairdresser was deft and exact, my scalp perfectly intact with no cuts or nicks.
The hair wash and scalp treatment were less pleasant, where I could only clench my teeth as my attendant scrubbed my scalp because I couldn’t find it in me to ask him to go easy.
Chemotherapy has left my scalp sore and I was told shaving my head would help, rather than let my hair fall out on its own.
Instead I have had to grapple with the strange sensation of friction—my scalp is fine when exposed but putting a hat or scarf on is a discomforting experience.
It is not painful, but feels unpleasant to the point it makes me want to rip my hat off.
Funnily enough my scalp is far more tolerant of a wig cap and wig so it seems like I will be wearing my Temu wig a lot more often, when I had only purchased it for the sake of social media pics.
My sister has also gotten me a long, blonde wig for when I feel like letting out my inner Beyoncé.
Chemo day
My morning trip to my second chemotherapy session saw me weeping in my Grab after saying goodbye to my father who was flying back to Kota Kinabalu after a few days in Kuala Lumpur.
Being able to speak to him over breakfast, for three mornings in a row after not seeing him for so long, was for me, this month, my biggest joy and cause for my deepest sorrow.
I had been fretting lately that I hadn’t been able to spend enough time with either of my parents but as luck would have it they ended up flying to me.
Each time I felt again like that little girl sadly watching her father fly off to a business trip or crying in bed waiting for my mother to come with a washcloth to soothe one of my many childhood illnesses.
Now they are both back in Sabah and I am alone in the cold waiting areas of HKL, standing for an hour waiting for a blood draw, and waiting another three hours to speak to my oncologist before I have my second round of TC chemotherapy.
I have one more round of TC to go before I start on four rounds of Perjeta and Herceptin, which blessedly are paid for with the kindness of crowdfunding.
Each round will cost RM10,600 and what flummoxed me a little was that I was told to walk over to a private pharmacy and order the drug, pay for it and then have them ship it over to HKL.
Being the emotional mess that I was, I’d forgotten to bring a cooler bag for my white blood cell booster shots and my brother came to the rescue.
He kept me company when I had to get an appointment to see the HKL surgeon as it is no longer financially feasible for me to have my surgery at UMMC and I am unsure if I will have the stamina to juggle two different hospitals.
With the long wait and crowded daycare units, I think my upcoming chemotherapy sessions will be more taxing and even my HKL oncologist agreed I’d be better off cost-wise to stay at one hospital.
It makes me wonder if the long wait for chemotherapy has always been a thing or if more people are now doing what I did, which was to switch to public healthcare due to the steep increases in insurance premiums and private healthcare prices.
Current issues of the day aside, what is it really like to experience chemotherapy at HKL?
A normal chemotherapy session at HKL goes like this:
• Line up to get your blood drawn on the first floor, brandishing the form that shows you have an appointment needing one post-haste
• Head up to the oncology daycare unit on the sixth floor, drop your appointment card and wait to be called to be weighed and have your blood pressure taken
• Wait an interminable amount of time for your number to be called to pay for your session, see your oncologist and finally head for chemo
• Find an empty daycare chair and wait to have an IV port installed, then get your anti-nausea medicine delivered through your IV
• Go to the daycare reception table to have the chemo nurse infuse large syringes into your IV
• Return to your daycare chair as you finish getting your IV port flushed with saline, usually two bags’ worth
• Get your blood pressure taken again, sign off on your release form and skip out of the daycare room, hopefully without the desire to throw up your lunch
Again I feel blessed that the doctors and nurses have been nothing but kind and polite throughout so I hope that the Health Ministry addresses the massive exodus of health professionals before I need to get my therapy infusions from a vending machine.
Once done, I returned home and devoured tandoori and naan, immediately put my chemo outfit into the washing machine so it wouldn’t soak up too much chemicals from chemo, put on fresh sheets on the bed, WhatsApped my parents to let them know I survived the procedure (again!) and lay down to finish this column.
Once this is done, I will get a nice foot massage courtesy of a machine gifted by a friend and hopefully sleep a solid eight hours — which I know will not happen because I will probably wake up every few hours to pee out all the chemo in my system.
My best advice for people who will experience chemo is this — you won’t know what it’s like until you personally experience it as it will differ from person to person but the best thing you can do for yourself is sleep well the day before (or at least take many naps), have a light breakfast, avoid wearing scents or deodorant, bring hard candy to suck on when your IV port gets flushed and prepare for a long wait.
Bring a power bank too and a warm jacket, as well as something to do while waiting for your chemo to start or to be released.
Most of all, keep your spirits high because your mental state and emotions matter a lot during this trying time.
Next week, I’ll talk a little bit more about navigating the public health system and some common perceptions that need debunking.
Thank you, once again to the people who are helping to keep me alive as my most expensive pressing targeted therapy, Perjeta, is now fully-funded.
The road is far from over as I have surgery that is likely to happen in June and another 14 rounds of Herceptin, radiation and five to ten years of medication, not to mention physical therapy and rehab.
So feel free to buy me a Ko-fi (LINK: https://ko-fi.com/ernamh2202) because coffee is currently my only allowable vice.
Croissants don’t count because as far as my healthcare providers are concerned, my gaining or maintaining weight while being treated is news worth sharing with the entire ward.
Nurse, announcing it loudly in the treatment room: “69.7! Two kg more than the last session!”
Me, internally: “Thank you for letting me, and probably the entire oncology ward know.”
I hope I continue to find the humour and levity in this experience even in the face of a rather daunting diagnosis and that at the end of this all, I can still smile and joke about all the times I made my doctors laugh.
Month: January 2025
JANUARY 8 — Because my life will never not be an entertaining sitcom for the angels, my first chemotherapy session was both eventful and uneventful.
Eventful as in I caused a biohazard incident (more on that later) and uneventful in my experiencing no medical side-effects
How it went
My anxiety was worse than the actual procedure.
I had been noodling around on the bed, checking social media, messing with my iPad and then the nurses came carting in a medical cart.
“We’re going to start, so lie down.”
Then as I was lying there, my chest felt tight and my arms felt heavy.
I asked her if it was normal, if the anti-allergy and anti-nausea pills had anything to do with it.
The nurse said, oh no, we haven’t even started yet.
She took out two large syringes, one with red liquid (I would later find out it was doxorubicin or Adriamycin otherwise known as the Red Devil) and the other liquid I was unsure what it was but I am guessing it was cyclophosphamide.
As the medication was injected, I just focused on the feeling of my heart beating as the drugs were injected into my IV and within a few minutes I could feel my scalp heating up.
It felt as though someone had dropped liquid Tiger Balm on my head; it was an uncomfortable feeling but otherwise I felt nothing else anywhere.
An hour later I was bouncing around the ward asking the nurses when they would let me go.
Meanwhile my friend was there too, driving from PJ with a cooler bag for my three vials of Neupogen — one would need to be injected for days 5,6,7 of my cycle in hopes of keeping my white blood count up.
It’s to prepare me for the nadir, approximately 7-12 days after my chemotherapy dose, when my white blood cell count is expected to crash.
While the shots will help during the nadir, I will still likely be more prone to infection, my immune system as fragile as glass.
Dealing with the unexpected
I was a little too excited about getting discharged that when they removed my IV port, I didn’t press down on the bandage long enough (five minutes is usually advised) and it ripped off while I changed out of my hospital PJs.
There was blood everywhere.
Blood on my pyjamas, my clothes, my tote, the floor, the sheet, the hospital table and it looked like the set of Cancer Freakout 3: The Stabbening.
The funny thing is no one was fazed in the ward at all.
Not the nurses. Not the patient in the neighbouring bed.
While I was glad I wasn’t bothering anyone, it did disturb me a little.
It meant they’d seen far worse and just spurting blood everywhere was apparently not a big deal at all.
Perhaps, though, in the cancer ward, everything outside that big monumental event in your life just seems less horrific in comparison.
How to be normal when life is abnormal
I’m still on leave for a bit, giving me time to sort out a great many things— medical appointments, family visitations, setting up schedules, getting my house cleaned, and working on lawn upkeep.
It bothers me that I have to be so mercenary about fundraising but at the same time, it keeps me accountable to friends and supporters, who are now literally invested in me as donors.
So far, I think I have enough of a cushion for most of my targeted therapy treatments, barring price hikes, currency changes or government health spending rationalisations.
I update my Ko-fi page on Fridays with Ko-Fi exclusive posts, while on Facebook I write lighter, chattier notes hashtagged #ErnaCancerTelenovella.
My sister would rather me rest more and put all my energy into healing, letting her sort out “how do we pay for all the cancer s**t”.
That would be nice in theory but if there was ever a time for me to just put everything out there that would be now.
While I was doing my own research, I kept stumbling on things and thought, “Why don’t I know this? Everyone should know this!”
The more I learn, the less I feel I know anything.
I daydream about burrowing into my mattress and never coming out, cancer be damned.
If only there was some blog or website out there, where I could follow someone’s cancer journey and get some insights into what to expect or at least understand my own diagnosis.
Then I realise that the only way for it to exist is if I make it myself.
That’s the plan, then, to keep talking about cancer, to keep telling stories and sharing new discoveries the way a child would excitedly show off a seashell on the beach.
Right now, I’m wondering if there will be aid available for all the patients at Universiti Malaya Medical Centre (UMMC) who will not be able to afford the new price hikes.
I hope the assistance schemes will be enough and that no one gets told that, well, they will just have to find the money somehow.
Will that chatty older woman I overheard talking about how she switched to UMMC because she couldn’t afford private healthcare be fine?
Will there be someone to hold her hand and tell her they’ll figure something out?
I shouldn’t be the only one wondering about her welfare and for the welfare of all the patients in our hospitals, made so vulnerable to the constant rise in living costs.
Someone needs to be working on that right now, worrying about it right now, and whoever it is, it shouldn’t be the ones most affected. because healing is already going to take most of their energy.
Take it from someone who knows that too well.
JANUARY 1 — I am writing this column one-handed due to an IV port, from a hospital bed as I begin my first chemotherapy treatment.
It’s been a whirlwind of diagnoses, tests, reports and hospital-hopping but for now it seems I will be staying put at a government hospital.
As has been my experience at previous hospitals, the doctors and staff have all been kind and considerate.
“I hope they won’t be mean,” has been my mantra each time I visited a new hospital or seen a new doctor, and while that seems like such a low bar, my previous run-ins with pompous doctors and nasty nurses have made me rather hospital-phobic.
The biggest difference between public and private hospitals is just how busy the medical staff is in comparison.
Make no mistake, these days even private hospitals are getting crowded with long wait times.
However, in public hospitals there are so many more people to see, making it a daily challenge for doctors, especially as staffing concerns grow.
Impressions from the oncology ward
The oncology ward I am in is airy, no air conditioning here, just open windows and busy ceiling fans, which is probably better air circulation-wise.
The standard issue patient garb is fairly comfortable — a loose set of blue and white striped cotton shirt and pants, with ‘For Hospital Use only’ stamped on them in black lettering.
An older woman is in the bed next to mine, occasionally playing loud Cantonese videos in phone speaker mode.
I can’t really fault her as it’s not like we have a TV.
My medication will only be administered around 2-3pm so I am spending my morning lounging and of course writing this column.
A fairly young doctor dropped by to explain my new schedule: there will be chemo every three weeks and on the seventh day of each cycle I will need to get myself injected with a booster to keep my white blood cell count up.
This is my life now, and at least I’ve had time to make my peace with being a cancer patient.
Speaking of peace, it would be nice if things just weren’t so fraught where religion is concerned in this country.
Turning to God, gods or the question of faith is an almost humdrum rite of passage for a lot of people.
As I get older I have come to the understanding that another person’s faith shouldn’t be my problem and that people can find comfort in both believing in a higher power or not believing.
While to some, the notion of there not being something beyond this life seems bleak and dissatisfying, to others it is a liberating “truth”.
I put truth in quotes because I do not want to be pilloried for blasphemy, when I am just acknowledging that when it comes to faith, many people use “belief” and “truth” interchangeably.
What I do believe to be true is that faith can be a beautiful thing, so long as we do not use it as an excuse to be unkind nor justify it as a reason to find issue with how another person believes.
Give to God what belongs to God, and to humans, deliver the goodness that we are capable of when we can see past our differences, whether it is in how we believe or whether we think Village Park Nasi Lemak is all that.
Personally I prefer Botak Nasi Lemak but we can all have our nasi lemak and eat it too, in the spirit of shared humanity, even if not shared tastes.
Happy New Year, Malaysians. Jom makan.