Earnestly Erna

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.

DECEMBER 18 — In the week since my last column, I have made a switch to the public healthcare system and found myself hopping from not one but two hospitals.

I had initially planned to go to Kuala Lumpur General Hospital (HKL) but a reader sent an impassioned email to me that made me change my mind.

Dear Lina, if you’re reading this, yes I did go to the Universiti Malaya Medical Centre (UMMC) as you suggested.

Alas, I ended up having to be referred to HKL after all but that’s a story for later.

Lost in a maze

I was rather unprepared for my visit to UMMC.

All I knew was there was a “breast clinic” on Wednesdays.

“Breast clinic? Did they tell you what floor?”

To their credit the random staffers I asked for directions did their best to help me find my way.

After 15 minutes of walking in circles and my achy knee threatening to give way, I was very much tempted to just run home.

My inner drama queen wanted to just lie down in the hallway in protest but I had other things to do, damn it all, so eventually I found the promised land.

For other seekers of breast ailment succour, here’s a quick guide:

The Breast Surgery division, part of UMMC’s General Surgery division, has outpatient clinic consultation sessions every Wednesday from 8am to 5pm.

While there are limited walk-in slots you will have a better chance of seeing a doctor if you bring a referral letter.

Surprisingly many people I know do not know this one caveat — it makes a big difference in what you’re charged, depending on where you get your letter from.

You will pay more if you are referred via a private GP or hospital so if money is tight, find the time to visit your nearest Klinik Kesihatan.

My friend did think I was slightly mad to rush right after a dilation and curettage (D&C), aching and bleeding, without painkillers mind you, just to get a letter.

I would suffer that again just not to pay a lot more after blowing through nearly RM10,000 in the last month just to get a diagnosis as well as remove suspicious uterine polyps.

Seeing all my appointments, procedures and expenditure detailed in a spreadsheet was sobering but I also think I now deserve a “Congratulations! You did not have a nervous breakdown!” plaque.

What’s next?

“Contact me any time!” she said, as she handed me her BCWA business card.

Unfortunately, my whirlwind series of procedures were still not over.

The very next morning I had to purchase a very large needle for RM462 and hand it to radiology so they could use it on me.

The needle had a fancy name: UltraClip Dual Trigger Breast Tissue Marker that you can have a look at if you’re as morbidly curious as I am.

After all that, how did I end up needing a referral to HKL?

The answer, dear readers, is money.

The Breast Surgery division, part of UMMC’s General Surgery division, has outpatient clinic consultation sessions every Wednesday from 8am to 5pm. — AFP pic

Cancer is expensive

My cancer type is triple positive — meaning that my tumour cells have oestrogen receptors, progesterone receptors, and higher than normal levels of human epidermal growth factor receptor 2 (HER2) receptors.

It constitutes 10-20 per cent of all breast cancers and while it is a fairly aggressive cancer, it is also very treatable because it responds well to existing treatments.

The suggested treatment for my current stage (Stage 2b) is neoadjuvant chemotherapy (chemotherapy done prior to other treatments) along with an infusion of a drug called Herceptin to target the HER2 protein.

I was also asked if I wanted to add another drug to the mix, Pertuzumab, but alas it costs RM10,000 a dose and is not subsidised anywhere, and I would need at least one dose a month, which would add up to a lot more than I earn a year.

UMMC being a semi-government hospital would not be able to subsidise Herceptin for me so the only thing they could do was refer me to HKL in the hopes the latter could do what they couldn’t.

When positivity is essential

I won’t lie and say that this has all been easy, or that I’ve been unbothered through it all.

It is easy to dwell on dark thoughts when faced with the enormity of a cancer diagnosis.

Living is so expensive.

Death would be quicker and cheaper.

Why bother, why bother.

I like giving myself timed pity parties — let myself cry for an hour or give myself an afternoon to “rot in bed” as Gen Z calls it.

Then I get up and get on with whatever I need to do because the earth still spins, the sun still rises, and right now I am still breathing.

My mother was given just months to live decades ago and she angrily declared that it wasn’t up to doctors to tell her when she would die.

Why too, would I give up, when my diagnosis is what some other cancer patients wish they had instead?

Maybe I can’t get that new expensive drug but I can still get chemo and radiation.

I can still get surgery, still easily get to the hospitals I need to go to, and I don’t have to pray I get into a study because my cancer is so rare that existing treatments don’t work.

Having breast cancer, one of the most common and heavily researched cancers there is, means that I have an excellent prognosis and all I really need to do is show up.

“Asalkan usaha, Na, boleh saja tu,” (As long as you try, Na, it can happen), my mother would say and I will remember that on this long, storied journey, wherever it leads in the end.

DECEMBER 11 — I would like to start off this week’s column like an Oscar’s speech by thanking all the people, you, my readers included, who have sent me well-wishes and support through my latest healthcare tribulation.

My life feels like a terrible telenovela, but people have been so kind that my anguish is at least tempered.

Almost every day, some new development or plot twist happens that feels as though it was written by an underpaid, overcaffeinated screenwriter.

First, my cancer is confirmed — not good.

Then I find out my cancer hasn’t spread, it’s in its early stages and a good prognosis so far — Stage 2 triple positive.

Insurance, the new modern headache

On Sunday, I got the crushing revelation that my insurance policy terms have changed, no longer offering cash-free admission but forcing me to pay first and insurance will reimburse my claims.

Why, sure, insurer A, I will just dig up a potentially five-figure sum for my treatment from the gaps in my sofa cushion, no problem at all.

Then to top it all off my PET scan found suspicious masses in my uterus, leading to my gynaecologist finding polyps that needed to be removed and sent off to the lab for testing.

Reader, I am tired.

At time of writing, I have undergone a dilation and curettage (D&C) procedure, which involved putting me under general anaesthesia to scrape out my uterine polyps.

I woke up with no side effects from being put under, apart from being a bit too energetic as instead of resting under observation for two hours after, I spent about an hour sitting up and staring at the nurse’s station out of boredom.

At least there was Milo.

More painful was taking out my calculator to figure out how much money I’ve spent on tests and procedures; so far in less than a month; all-in-all, I’ve spent nearly RM9,000.

No guarantee for peace of mind

My friends have also been sharing their own struggles with insurance, with premiums rising so much they are unaffordable, to the point they have dropped their policies.

“I guess if I get sick when I’m old, I’ll just die,” is a sentiment I keep hearing and that shouldn’t be where we are.

I often tell people that insurance is a rigged game, where you win by not getting sick, but the house wins more than you do.

If you lose the bet and get sick, the house can fix the game and keep your money, and as someone who used to work in the industry, I can say that insurers will do their utmost best not to pay up.

They tell you to do the responsible thing and get insurance, but no one tells you that peace of mind you supposedly purchased isn’t even guaranteed.

I recently read about that one Malaysian woman who had to sue her insurance company to get her cancer claims approved after they had denied her for “not disclosing” that… she had an anxiety attack some years ago.

Non-disclosure is a favourite excuse insurers love to use to wiggle out of giving you money.

Moving forward, I’ve gotten a referral letter from the nearest Klinik Kesihatan to attempt treatment in the public healthcare system, but if an operation is needed anytime soon, I might return to the private hospital where I have been getting all my tests done.

So far however, whether it was private or public health personnel, I have encountered nothing but kindness and compassion and truly, I wish that experience on anyone needing medical care.

To my fellow cancer patients, I hope that you too are finding comfort and aid in this shared struggle.

As hackneyed as it might sound, you are not alone.

Here’s to better and more affordable cancer treatments and less incentive for people to think insurance CEO assassinations are a good thing, actually.

DEC 4 — I have cancer.

At least, that’s what my biopsy revealed.

Now I have yet more tests to do, including a PET scan, to figure out just how far my cancer has progressed and how I should proceed treatment-wise.

Am I terrified? Of course I am.

Fear has never really stopped me from doing things (except maybe from visiting possibly haunted malls) because the more afraid I am of doing something, the more I push myself to move forward.

Otherwise, I’d probably still be afraid of sleeping in the dark.

The nice thing about getting cancer in my 40s is I’m past caring about things like losing a breast.

A mastectomy is unfortunately unavoidable in my case and my doctor asked if I wanted a reconstruction.

No thank you, I said.

I’m thinking long-term; I don’t want it to be difficult to detect the cancer if it returns, and after 45 years of having a decent rack, I will just say thank you and goodbye, I will not miss having F cups.

While I was calm in the waiting room and getting the news from my doctor, having to text people about the news made me cry.

I so desperately wanted to give them good news.

Still, I also felt better sharing the weight of it all because carrying it all myself is something I know I cannot bear.

It’s something no one should bear alone.

If life is a story, cancer is but a scary chapter of mine, and I’m just going to keep turning the pages and be grateful that friends and family have been wonderfully supportive throughout.

Here’s to pressing on and hoping that I can give this tale a good ending.