Earnestly Erna

FEBRUARY 19 — Something’s got to give, sometimes.

In my case it was my pretending that I could keep being resilient without cracking — evidenced by the loud guttural howl-scream when my water bottle tipped into my bag and submerged all its contents, including my laptop and hospital documents.

My hospital appointment book, my echocardiogram request form, my power bank and everything else inside were soaked and I knew, irretrievably altered.

Kind of like what cancer does to your life, if you think about it.

A last minute rescheduling of a gynaecologist appointment meant my trying to fit it into a day when I already had work as well as a visit to the clinic for an immunity jab.

It didn’t cross my mind to move it, to put it on a less full day, I didn’t think about whether I could handle it because that’s just how I handle most things, assuming I will get done what needs to get done because I must.

I forgot that I had a choice.

What I also forgot is that I could no longer just cavalierly juggle everything and I realised, right then, that my housemate and longtime friend was so right to worry about me the first month of my diagnosis.

She knew all too well that I tend to take the brute force method, charging through things and life just to get things over with… and perhaps it’s time I stop doing that.

Adjusting expectations

Video games these days let you adjust your difficulty level.

Can’t beat that boss? Dial it down a level.

In my case, I sleep a lot earlier now and try to schedule fewer things in a day.

Sometimes, though, I’ll have a crowded week full of medical appointments and errands that I think can’t be managed but forgetting I do have options.

My gynaecologist appointment could have been put off or rescheduled, or I could just change doctors.

I didn’t have to try to squeeze everything in if it’s not absolutely important.

Perhaps I also needed a reminder of my own hubris.

I thought that I was perfectly organised, that my bottle was spillproof, that placing all my hospital docs in my huge leather purse would ensure I would never forget them, that I was prepared for every eventuality.

Well, I wasn’t.

I was most upset about my hospital documentation being compromised knowing full well I needed them for my appointments.

Fortunately my dehumidifier salvaged my documents, minimising the damage and preventing them from disintegrating, though I am sure the hospital reception desk will side-eye me a little.

We keep being told to exercise, to eat right, to live a healthy lifestyle to prevent chronic illness but what they never tell you is that you can do everything right and still get sick.

These days I lose balance without warning, keeling over to the side during showers or just reaching for something.

No matter how much physical therapy I do I will have to accept that I could fall and that I need to better prepare for what I need to do if that happens.

As I go to my medical appointments alone most of the time I will probably have to look into an ID bracelet should I fall unconscious for any reason.

I wish I could have company but the long waits and KL General Hospital having neither Wi-Fi, seats nor usable public power outlets make me not want to impose on anyone.

My only alternative is to chat with people online or via WhatsApp, while also informing them of my own personal “emergency protocol” — who to inform, which hospital I’d rather go to via ambulance if I’m not in a hospital already and what might need taking care of (my cat, mostly).

At the same time I’m going to have to make peace with my realisation that no matter how I prepare, how many hacks I try or tools I collect, sometimes the only way you find out something isn’t working is when it fails.

You live, you learn, you fall and you clamber right back up even if you need to pause for a bit to scream at the universe.

Thanks to the people who funded my sorry-for-myself-cake via my Ko-fi here. Don’t let salty tears get between you and good cake, I say.

I leave you with the two songs getting me through my too many appointments of a month, until I get to enjoy more cake on my birthday this Saturday.

Enjoy Chung Ha’s Stress and Jisoo’s Your Love.

FEBRUARY 12 — By the time you read this, I will probably be waiting for or will likely have finished my last “ordinary” chemotherapy session.

The past few days I have been briefly entertaining the notion of just not going.

I know it isn’t an option unless I want to die a prolonged and painful death but it’s hard not to feel daunted by the many treatments that await me.

It’s also really hard to isolate myself from the state of current affairs — the mad leader of the free world, the neverending unrest in the Middle East, the worrying state of public healthcare in Malaysia among other things.

With the weak ringgit and the headwinds in the global economy, I have to face the possibility of my medications costing more.

Worrying, however, won’t change things.

All I can do right now is just show up for all my many medical appointments as much as I don’t want to go.

I have been doing my best to be a trooper about things but the treatments are tiring and take up so much of my time, while I also keep getting reminded that I need to watch my diet and exercise just to survive said treatments.

Last week I had to block an old acquaintance on Facebook for spamming my comments with antivax conspiracy theories, vegetarianism promotions and accusations of me being unable to “accept the truth”.

Absolute strangers keep yelling at me online that our immune systems have been decimated by the Covid vaccine/Big Pharma/seed oils/the Jews/sugar and that I should start believing ivermectin will cure me of my cancer.

I love the internet but seriously, it has done too good a job at spreading misinformation and harming the critical thinking processes of too many people to count.

Embracing the ephemeral

Being chronically ill really puts your mental health to the test and I wish we put as much effort into mental health resources as we do fat shaming Malaysians.

Now it’s Penang being the target, being told they have the fattest people in the country.

Penang doesn’t even have commuter trains and driving in the state is enough to raise anyone’s blood pressure, so can you really blame them for finding solace in their very good food?

Truth be told, if I had access to authentic Penang char kuey teow within walking distance, I would eat it every day and hope heart disease kills me before cancer does.

People think it’s a measure of character, to not be plagued by anxiety or some other mental health disorder, when it’s really a combination of luck and getting the right treatment and support.

How am I not lying on the floor right now paralysed by the state of things?

It helps that I got diagnosed with clinical depression with a side of PTSD in my 20s and that I had a few decades to figure a lot of things out.

Kids these days don’t have that luxury.

Hospitals are full, therapy is expensive and the income divide hasn’t actually gotten any smaller.

We take for granted all the little near-misses in life and easily forget that even the slightest deviation from the norm could mean the difference between getting home or getting hit by a lorry.

Like that time I stopped to remove a pebble from my sandal and narrowly missed getting run over by a neighbour who lost control of his car, jumping the curb onto the sidewalk — where I would have been if a little stone hadn’t annoyed me so.

Yes, things are bad now for way too many people but if I can’t lie down and decide to die then neither should you.

As imperfect as life is and as daunting as current events are, I still believe in living.

Yes, in a month or so, nasi lemak and other spicy things will be off-limits because my immunotherapy will kill my tastebuds.

My bones and joints will hurt, some days like now I won’t want to eat but will have to shovel down food anyway, I will have to explain for the umpteenth time to the revolving staff at my nearby clinic that I have cancer and need them to stop asking me questions and give me my immunity boosting shot already.

This month, however, is my birthday month so I will have cake, I will play games on my PlayStation, I will laugh at the TikToks and memes my friends send me and perhaps I will go hunt down some tiramisu (again) if I feel sad.

Funny story: I was very sad last week and decided I needed tiramisu and fortunately Common Feed at Uptown has a Friday special, where you pay RM25 and you can scoop as much of the stuff as your greedy little heart desires.

As always I’m not being paid for this shoutout. I just desperately need the restaurant to stay open so I can keep having my sad girl tiramisu Fridays.

I end this with another grateful shoutout to my sponsors aka those who donated to my Ko-fi (which you can still do here).

The past week I fantasised about closing down my page and cancelling donor subscriptions but the hike in drug prices means I will still have my tip jar open for a while longer or at least until the government decides that maybe letting the free market dictate life saving drug prices isn’t the best idea.

Find out next week if my mental state survived the chemotherapy I did not want to do. Until then, please enjoy some tiramisu on my behalf.

FEBRUARY 5 — I tell people I feel blessed to not be diagnosed with cancer in the US.

Right now pauses on federal funding, including grants, in the US has affected student aid, Medicare and of course, cancer research.

Meanwhile in Malaysia I have to deal with my mother sending me WhatsApp messages about cancer-curing cassava.

I think I have finally reached that point where I need to tell my mother to stop sending me supplements and forwarding me various hokey cures because misinformation is a dangerous thing, especially to public health.

Here’s what I think everyone should know about cancer and what they need to explain to well-meaning loved ones asking them if they need more soursop leaves.

1. Cancer isn’t a single disease and thus does not have one single, magic cure

The various misinformation peddlers keep screaming about how Big Pharma is refusing to share the cure for cancer and that it wants us sick.

In truth cancer is an entire umbrella of diseases, with differing causes resulting in the need for different cures.

It was mind blowing for me to find out there isn’t even one single type of breast cancer, and that you could have cancer in both breasts, of different types.

You cannot cure pancreatic cancer with the same drugs you use for lung cancer.

Treatment plans will also differ widely, depending not just on the kind of cancer but its stage as well as the patient.

As I’m considered “young” (my doctors keep saying that, probably due to the majority of their patients being senior citizens) I am being prescribed as much radiation treatment as possible just because I can endure it.

I do not look forward to being baked like a potato daily for more than a month but I am hoping my doctors know best.

2. So-called natural supplements might harm instead of heal you

One thing that has been sold to us as healthy really isn’t.

That thing is juice.

Fruit juice is concentrated sugar and drinking a lot of it might increase your diabetes risk more than anything.

Eat an orange. Peel an apple. Drink juice when you feel like it but don’t delude yourself into thinking it’s healthier than a can of soda.

Supposedly natural supplements, whether mushrooms, root or leaf extracts and the like could be dangerous especially if you do not know what went into the preparation of said pills.

There are too many random pills being sold on the market, with no safety guarantees and dig around enough and you’ll find reports of dangerous amounts of cyanide and arsenic in traditional medicines.

Green tea extract is also found in many weight loss products but studies have shown that it can cause severe harm to the liver.

Stick to drinking green tea when you feel like it, just don’t believe that concentrated amounts of it is safe.

3. Your doctors want you to live

It’s sad to see on Reddit and social media people asking if they could somehow skip chemo or other treatments they are prescribed by their doctors.

With so many unqualified pseudo health experts promoting so-called magic cures such as ivermectin (no, it will not cure your cancer) on podcasts, people are desperate for supposedly less toxic panaceas for cancer.

What I want you to remember is this — your doctors want you to live.

They do not benefit from hurting you and they do not get paid extra by Big Pharma to pump you full of “poison” as the woo-woo peddlers call lifesaving treatments such as chemotherapy and hormone blockers.

Cancer cells are also human cells.

They are not parasites or foreign bodies but cells that have gone haywire, thus requiring their removal or eradication via other means.

To target cancer cells, your other cells will also get in the line of fire, which is unfortunate but that is why you are given other medicines and protections to keep your body strong.

Decades of cancer research have produced better outcomes and cancer diagnoses are no longer the death sentences they used to be.

Many children now survive getting cancer as children, as do many adults, young and old.

Breast cancer is one of the most researched in the world and thanks to that has become more survivable than ever, which is a good thing because one in four women will get cancer in their lifetimes.

Update on my own cancer: I saw a surgeon on Tuesday and it was an over four-hour wait but fortunately I had snacks to distract me.

The good news is that I will likely avoid major surgery and instead have just a lumpectomy and lymph node removal, which is a relief as in the beginning I thought a mastectomy was my only option.

It helps that my cancer is not overly complex with just one lump and a few involved lymph nodes.

Here’s a quick summary of how the appointment went down:

• 7.30am: Arrive at the specialist building, head to the second floor via lift (there is a long line already in the lift lobby)
• 7.40am: Drop my appointment form in the box for 9am appointments
• 7.50am: My name is called and I am given my number for the day
• 7.51am-11.20am: Sit in the waiting area snacking, staring out into space because I had a stomach upset the night before and barely slept
• 11.20am: Get called into the doctor’s office where I get a breast exam and then told my surgical treatment plan
• 11.40am: Wait for a Grab to go home

It sounds very tiring to take half a day for a consultation that takes barely 10 minutes with another few minutes being dedicated to waiting for my medical leave chit.

That’s the reality of the public hospital experience so don’t forget to ask for your medical leave slip if you don’t want to use up your annual leave days.

I felt a lot better at the end of it all because my bill for the day was exactly RM0.

Yes, the first consultation with a surgeon will cost you nothing unlike in private hospitals where it can range from RM150-500 for the first consultation or RM80 at University Malaya Medical Centre.

The public hospital experience isn’t ideal but at the very least you won’t hurt your wallet much in the process so my advice to anyone getting surgery is to find ways to kill time or ease the discomfort.

I saw people working on laptops, with another woman next to me playing multiple rounds of Solitaire on her phone but my heart goes out to the woman with two small children who were clearly upset about being there.

Yes, small children, I too did not want to be there.

At the moment I tire more easily and my heart rate keeps spiking, likely due to my red blood cells plummeting and causing my heart to work a lot harder to keep me alive.

I try not to think too hard about the fact that one in four people on my upcoming Herceptin regimen develop heart issues.

Feel free to send me a Ko-fi as I still have surgery to pay for in the coming months once my Perjeta is done and another 13 rounds of Herceptin to endure and pay for.

It is still the beginning for me on this cancer journey and so many more Cancer Diaries to write.

I think it is fitting at this juncture to mull JRR Tolkien’s The Road Goes Ever On from the first book of the Lord of the Rings trilogy for the road is long and at the very least, it won’t be boring.

The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can,

Pursuing it with eager feet,

Until it joins some larger way

Where many paths and errands meet.

And whither then? I cannot say.

JANUARY 29 — Something that people expressed to me about switching to public healthcare, that I experienced myself, was fear.

What were people afraid of?

They were afraid of being judged, of being told that they “had money”, that they would be turned away.

I will tell you that the worst experience of making the change will probably be your first time at the hospital registration desk.

Get past that and everything else is less terrible in comparison.

No, it’s not actually that bad.

Public hospital waiting rooms get crowded very quickly; sometimes by 8.30am there is nowhere left to sit and with how full and busy it gets, it can get very overwhelming for everyone, staff and patients alike.

People get antsy, the staff are trying to juggle multiple numbers, and the system is outdated and confusing.

There isn’t a clear step-by-step diagram anywhere.

You will have to eyeball the signs, ask the staff and hope you’re doing the right thing.

Chaotic, disorganised, tiresome, tiring but it’s just part and parcel of how things are and a hurdle for you to “get into the system”.

I kept hearing the phrase repeated to me, by doctors, patients, wannabe patients and what it means is just that — to be on file as a patient being treated at your public hospital of choice.

Let me explain to you the most ideal way to get into the system for the long-run.

Do not take the so-called easier path

In the age of AI we keep being told to take the easier path, to let something else do the heavy lifting, to do things quicker for supposed efficiency.

The efficient way to enter the public healthcare system from private is to get a referral from your private healthcare doctor but I will tell you that while it is simpler and quicker, it will in the long run come with extra costs you will not like.

Just like AI.

Being referred from a private institution is like a red flag that tells the system to charge this person differently.

You are already being set on the path of “possibly can pay more” when the reason you asked to switch is because you can’t.

The harder, longer, messier path is to take a day off and get to your nearest Klinik Kesihatan which is not open on weekends or public holidays.

Many take breaks for lunch so no, you can’t just pop by one on your own lunch break.

Consider it a quest of sorts, make it your goal or game-winner to get that precious document — a referral letter from your KK doctor to the public hospital of your choice.

At every step, when they ask why you’re here, just say you need a referral letter.

Bring your medical results, explain that you wish to switch.

I wish I could take your hands in mine and comfort you, to assure you this: no one will turn you away.

No one would willingly spend hours in a busy, cramped public healthcare clinic for a precious letter if they did not need to do it.

Do not fear judgement or accusations, instead, think of it as your fight, your advocating for yourself.

No comfort to be found

While I expected it to be crowded and uncomfortable, I was still woefully unprepared for how tiring the experience would be at Kuala Lumpur General Hospital.

Having to stand for an hour waiting for a blood draw drains you more than the actual taking of blood.

I’m old enough to be a veteran of many blood draws and unfortunately I experienced for the first time the process being discomfitingly painful.

There’s little time for reassurances or more gentle pricks — efficient stabbings are the order of the day instead.

What would it be like for far older patients with thinner, more fragile skin?

Have they just gotten so used to it, or is pain just part and parcel of the routine of being old and sick?

For my next visit I am bringing my one cane chair so I will always have somewhere to sit and enough snacks as well as a power bank.

In a public hospital you don’t have a lot of options for food or places to charge your phone.

What I miss most about my time in private healthcare was easy access to seats and charging outlets.

I don’t even want to ask friends or family to keep me company because there aren’t enough places to sit and no spaces for them to work remotely, unless of course I happen to get warded.

The only real comfort about public healthcare is at least for most things you won’t be paying a lot and you get a real understanding about why taxes matter.

A lot of things aren’t covered in public healthcare as I found out from needing to order RM21,600 worth of my targeted therapy drug.

My doctor seemed almost desperate in his trying to make sure if I had the means to cover it because the government couldn’t.

I know it seems like small comfort but my white blood cell booster jabs cost more than RM2,000 but are subsidised.

Those jabs make sure my chemotherapy sessions go on as scheduled, without my needing to take a break to build up my white blood cell count.

Our healthcare system needs to evolve with the times but I just hope that in efforts to streamline and make things more efficient, that we don’t forget that healthcare should most of all centre people — including the ones who keep it running.

Let’s hope the Year of the Snake will be one where we shed old skins and embrace new possibilities and technologies without forgetting who they were made to serve — us, not the machines.

As my Hakka ancestors would say, 新年快乐 or Happy New Year!

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.