Earnestly Erna

JULY 9 — I could never say that cancer is a gift.

No, it’s a disease that’s painful, the treatment is also painful as well as expensive and — 10/10 zero stars would not recommend it.

Even s**t has its uses so I decided, well, I might as well see what good I can squeeze out of it.

Mind you, whatever blessings I might have managed to wring out of this chronic illness will not be the same ones for other people.

Every day I am reminded how many people have it worse.

Like this man I saw on Facebook with his head bald, a noticeable surgery seam across his head.

Multiple surgeries for a cancer that metastasised from a childhood brain tumour; doctors had written him off and told him well we’ll just see how long we can keep you alive then.

I was a tired, weepy husk after six rounds of chemotherapy and here is this man enduring treatments for so long his bones are brittle, yet he’s like hey look at me I’m still here isn’t it great?

Next week I’m back in the hospital for another round of immunotherapy but the woman I mentioned last week is still collecting funds for immunotherapy (and has had to pawn her last bit of jewellery) so you can help her out here.

Lest you accuse me of pushing toxic positivity, I’m not advocating that we lie to ourselves when we’re suffering.

It’s important to be able to look at the myriad horrors existing in this world, see them for what they are, while not letting them block the view of what is still good, or can be made good.

Just saying “I’m a cancer patient, I don’t need this bulls**t” has achieved the previously impossible — getting my credit card’s bank to stop calling me multiple times a week.

My credit’s in good standing, don’t worry folks, they just keep trying to convince me I need a credit card loan (no I do not).

Doesn’t matter who I argue with, whether it’s a Shopee seller, bank or unit trust salesperson, the almost immediate backing down when I play the cancer card is both amusing and a great relief.

Don’t be lying to people that you have cancer if you don’t, though.

It’s not like I’m asking for free stuff, being first in line at events or VIP treatment.

Cancer is hard.

If telling people (or annoying cold callers) I have cancer means I get a pass from stuff like the EPF asking if I truly need to be reimbursed for a PET scan (yes I bloody do), I will shout it from the top of the Petronas skybridge.

How am I now?

I still wake up with stiff achy shoulders.

I can’t go downstairs without holding the railings as dramatically as an actor in a Titanic recreation.

Walking means sucking in my core hard to try and stay upright because my back keeps threatening to collapse forward on me.

I can’t go more than 15-20 minutes walking in a mall without having to sit down because my feet hurt too much, which is why I don’t leave the house for anything less than “damn, my surge protector power extension got fried again.”

Bouncing on a mini trampoline daily seems to have helped with my leg stiffness but my right ankle continues to be stiff and swollen, probably from compensating for my bum left knee (which is almost functional now) for literally months.

It has also had a surprising bonus effect on my digestion.

Who knew bouncing on a trampoline could help with constipation? I didn’t.

The fall I had months ago? My knees still have bruises.

I understand why people keep their health struggles and cancer diagnosis private; it can be a lot to deal with as sometimes you can feel as though you’re managing everyone else’s feelings about your illness.

In my case the truth set me free.

I didn’t have to pretend to be strong or that I wasn’t in near-constant pain; I can let people help me without letting it swallow me up in guilt.

Joy shared is multiplied. Pain shared is often lessened.

Though I also watched an interesting TikTok by a physiotherapist who said some people tended to try too hard to intellectualise their pain.

You have to feel it, go through it and not try to think of the whys, he said, because otherwise you’ll only end up taking longer to heal.

Wow. Who let him spy on my webcam?

I plead guilty to spending too much time online trying to find the next exercise or routine to “fix” my stiff body.

What I can conclude is that maybe what I need right now is to be present in my feelings, not just in my mind.

I cannot intellectualise my pain away or use logic to heal faster — I have to be OK with just being where I am right now.

At this moment I’m resting after making myself some vegetable noodle soup and thinking about what to make for breakfast tomorrow.

My belly is full, my mind is calm and after the multiple horrors of previous months, I am enjoying a little peace and a break from the hospital.

Until August comes and I spend nearly every weekday at the hospital for follow-ups, tests and radiotherapy, I will be glad for this lull.

(First published July 2, 2025)

JULY 2 — There are things that irk me about Malaysia sometimes but I’m grateful our public healthcare exists.

If it hadn’t, faced with charges like RM4,000 for a biopsy and nearly RM3,000 for a PET scan, the alternate choice of flying somewhere with snow and dying from exposure on a wintery mountainside would seem far more appealing.

Remembering the anguish I felt seeing just how much scans and cancer drugs cost when I started my cancer journey, I do not wish it on anyone else.

Public healthcare and the generosity of friends and supporters is literally saving my life so why wouldn’t I want that same healthcare available for everyone?

Instead some guy in a suit is telling me no, we need to make everyone buy insurance and go to private hospitals instead.

I support the notion of a national health insurance scheme but only if it’s used for public healthcare.

Let’s call a cangkul a cangkul: the idea of extracting funds from people’s EPF accounts to pay for private insurance benefits not the average Malaysian but private insurers and hospitals.

Just look at their financial reporting for the last few years.

They make enough money already; we don’t need to give them the keys to our retirement funds.

My recent dealings with the EPF was a preview of how things will be if this proposal goes through — making health withdrawals will be likely near-impossible because the funds will be frozen to pay your insurance.

There are so many things that aren’t taken into account with this new idea.

It would only work if insurance premiums stayed low and only rose to keep pace with inflation, when in reality the older you get the more costly your premiums become.

Insurance companies also usually have an age cutoff not to mention exclusions for pre-existing conditions.

Will the rules for medical withdrawals instead follow insurance guidelines — with only specific procedures allowed, generic medications permitted and EPF getting to decide patients’ treatment plans?

We could learn instead from countries with national health insurance schemes such as China, Japan and South Korea or from Singapore’s dedication to preventative healthcare.

Singapore starts early by taking a more serious approach to physical education in schools while also encouraging as well as facilitating healthy lifestyle choices among its populace.

Meanwhile in Malaysia, we keep hearing of school canteen operators selling slop at expensive prices to our children who are now shorter than ever thanks to an increase in stunting.

Why must we constantly shame Malaysians for “personal choices” when we never make the healthier choice the easier one?

I would love for diamonds to be taxed but apparently precious gems and metals will not be included in the SST expansion but dried mushrooms, a very common ingredient in Chinese cookIng, is.

Make it make sense.

I could live with a tweak of tax brackets if it meant that I won’t see my oncology nurse be close to tears because there are too many patients and not enough staff to handle them all.

Money should never be what decides who lives or who dies.

I want more doctors, more nurses, more health interventions for lower income earners and more health resources spread around the country so cancer patients in Pahang and the East Coast don’t have to travel all the way to the Klang Valley to be seen.

Do not tell me that is not possible or practical when more has been spent on far less important endeavours such as our version of National Service.

Perhaps bean counters see the cost of public healthcare as just an expense and not an investment.

What do I see?

I see women far older than me, frail-looking and tiny, resolutely showing up to their appointments.

I watched a bow-legged man walk hand-in-hand with his wife as she hobbled along with a cane along a hospital corridor.

On Threads I read the stories of a woman with Stage 4 cancer resolutely trying to live for her children despite the money running out for her drugs, who comes in for treatment on the same days that I do. (You can donate to her here)

At the hospital I see people who want to live or at the very least, are doing their best not to die.

They deserve better than a system that considers withholding treatment for lack of payment a cost-savings.

(First published June 25, 2025)

JUNE 25 — I am back at work after a month of recovery leave.

My mental faculties are surprisingly a lot better than they have been since I first started cancer treatment.

It feels like I no longer have cotton wool for brains though I still have the odd moment where I go downstairs for something and then forget what it is.

I wish I could say the same of my body.

It’s recovering but very slowly, besides the wound that has nicely healed up.

Every day is just stretches upon stretches for aching, stubborn muscles.

Each morning I wake up with a now-familiar ache in my shoulders as though I had spent the night in some Sisyphean ritual of pushing a boulder up the nearest hill.

You know, like our civil society groups trying to push for more transparency.

Going downstairs is a special kind of hell where the demons of gravity smack my knees with a gigantic hammer as soon as my foot touches a step.

Am I in constant pain? Not to sound dramatic, but yes, but it’s not the kind of pain that drills at you like that neighbour who thinks 6.30am in the morning on a Sunday is the best time to install wooden shelves.

It’s more like: I bend my knee. Ow. Lift up my phone. Ow. Attempt to open a jar — may the saints have mercy on my fingers, I try, give up, consider calling out for my brother and then remember I have a jar opener made for the now-disabled person I am.

(While I have the Wiltshire jar opener I got in Spotlight’s closing down sale, Ikea has the UPPFYLLD jar opener for less than 10 ringgit and no I’m not getting paid for this.)

My fingers feel as though the bones have been hollowed out; I wake up with frozen hands that need massaging throughout the day to ease the nagging soreness.

I wish these jokey descriptions were exaggerations of the actual experience I’m having but they’re unfortunately rather accurate, just with a lot more specific vocabulary used than simply stating “It hurts everywhere all the time.”

As a chronically ill person, I ask that you be nice to sick people because one, they’re having a hard time and two, one day it could possibly be you being that sick so maybe don’t be an ass?

Positive note: my hair regrowth has progressed from Buddhist monk to GI Jane/someone with new hair plugs from Turkiye.

On Monday I met with the nice people down at the radiotherapy department for what they call a “simulation”.

As always I had to endure the indignity of a pregnancy test but I suppose the alternative would be sharing CCTV footage proving the non-existence of my sex life.

Then it was CT scan time: I had to lay on the scanner flatbed, the upper part of my body exposed while the radiotherapy tech took measurements and positioned my body in as straight an alignment as they could manage, while my arms had to be raised, resting on two stands positioned behind my head.

It was easier to just keep my eyes closed to avoid awkward eye contact and instead I thought about the salmon sushi I would be having after.

Then the tech told me I was, gasp, getting tattoos.

They aren’t anything fancy, basically tiny pinpricks to help guide the radiation beams for when my radiotherapy starts — I will only know the dates in another four to five weeks.

While you read this I will also be facing my tri-weekly challenge: being stuck with an IV needle for my sixth cycle of Herceptin, with another 11 to go.

Every day that I go to the hospital that I manage to successfully stop myself from running away screaming is a victory.

In truth I bribed myself with the aforementioned salmon sushi (before it becomes a lot more expensive in July with the SST Tax or How We Found Out How Many People Don’t Know That All the Cheap Fruit and Veg Are Imported Seriously Have They Seen How Much Rambutan and Manggis Cost These Days?)

Everything is going to be more expensive for everyone in the coming days as war looms, supply chains tighten and travel becomes fraught with uncertainties and new dangers.

It feels unjust that so many need to suffer just because there is no profit in peace when war makes more money.

No one could have prepared me for a 2025 where the US has cut off spending for cancer research but is burning trillions in the Middle East to kill people instead.

As I recline in a seat while attached to an IV of a very expensive drug, I will probably daydream about a world without war… and maybe the Nintendo Switch 2 (how does it cost more than my PlayStation) and wait patiently for the day when going downstairs doesn’t feel like I’m being kneecapped by tiny invisible assassins.

If people would also not stare at me when I hobble around awkwardly like a little old lady trying not to fall over, that would be nice too.

(First published June 18, 2025)

JUNE 18 — Being a cancer patient feels like a full-time job sometimes, what with even my leisure time being used for “beating cancer activities”.

This week I met the surgeon who excised my tumour and he confirmed the results of my pathology report: no cancer found in my tumour nor was any detected in my lymph nodes.

While some people would like the security of being absolutely sure there was no cancer left by taking scans, my doctors don’t think further tests would be helpful.

My oncologist isn’t recommending a CT scan anytime soon and my surgeon thinks I don’t need a mammogram until at least the end of the year.

Besides my body being stiffer than Rick Astley’s dancing, I feel OK enough to just go with their recommendations and focus instead on finishing my 11 remaining immunotherapy cycles and my 23 days of radiotherapy.

Trying to assemble a small IKEA cabinet over the weekend showed me I was still far from being fully recovered.

It took me most of the morning to put the LIXHULT cabinet together, when it’s little more than a simple metal box.

Instead I found myself staring at the diagrams for a long time, as though they were written in some undiscovered language.

By the time I was done, I had had to take multiple breaks and going back up the stairs required me to haul my uncooperative, aching form by clinging onto the banisters.

Everything hurt — from my hands to my shoulders to my back and legs and I did let myself indulge in a brief moment of despair.

Just two months ago I hauled flatpack furniture weighing at least 20kg up the stairs and put together a small table with attached shelves.

That seems like forever ago.

Now I’m a feeble middle-aged woman taking sharp breaths when I have to get in and get out of a rideshare.

Perhaps this is my own hubris coming back to bite me.

Whenever I saw really old people walking slowly, their backs hunched over, I told myself I would exercise to avoid that.

Now I have to resist the pull to let my torso hunch forward as I painfully shuffle along at the speed of Malaysian reforms.

At the hospital I saw this old man yell at a taxi that rudely sped past instead of pausing to let him cross to the hospital entrance.

A security guard awkwardly took his hand and tried to calm him down but the old man, who was walking slowly with a cane, kept grumbling that the car should have given him the right of way.

The taxi driver was young and brash, probably not thinking about how some day in the future it would be him hobbling along, hoping for patient drivers to let him cross the road.

Even after everything, I still find being at the hospital a blessing.

You see people at their most vulnerable at the hospital.

While some people say going to medical appointments alone feels lonely, I think if you let yourself, you can find solidarity with the other souls in pain.

No one wants to be sick or suffering, but being in a public hospital you become acutely aware of the people around you who, like you, are still trying to stay alive.

I want a Star Trek future where you can lie in a comfortable chair and have your illnesses be diagnosed with fancy scanners that won’t raise your cancer risk.

Where doctors get enough sleep without being overworked, where you don’t need to be stabbed multiple times for a blood sample or worry about your local pharmacy running out of your medication.

Here and now though, we’re fragile humans who get sick because that’s just how our bodies are, and far too vulnerable to things beyond our control such as the economy and global unrest.

I think of the woman who went without treatment for a year because the cost of immunotherapy scared her.

She is in treatment now but her cancer is now at stage 4 and is no longer responding to Herceptin, the drug that helped me.

How different are our circumstances and I wish someone had comforted her, advocated for her and helped her get her treatment sooner.

To quote from Ecclesiastes 9:11 “Again I saw that under the sun the race is not to the swift, nor the battle to the strong, nor bread to the wise, nor riches to the intelligent, nor favour to the men of skill; but time and chance happen to them all.”

That passage is often quoted but what sits with me now is the one after it: “For man does not know his time. Like fish which are taken in an evil net, and like birds which are caught in a snare, so the sons of men are snared at an evil time, when it suddenly falls upon them.”

Thinking of the recent Air India tragedy, I was reminded again that we are not promised even a half-second more of life.

So I will continue my rehab exercises, even if my body is taking its time to heal.

Everything in its own time, every person finding their own place in this world.

I will sit and write, and stretch, and sing and shuffle along tending my gardenias and yelling at the stupid people who keep blocking my gate with their cars.

Now I understand why they say life is beautiful, but it is also awful and strange, and so very unpredictable.

Here and now I am alive, and so are you, so let us take a moment to marvel at it then step away from this screen to go drink some water already.

Stay hydrated, stay well (or as well as you can be).

(First published: June 11, 2025)

JUNE 11 — I never thought I would have something in common with Jamal Yunos but here it is — our cancer treatments worked.

Unlike Jamal, I don’t have to deal with pending court judgements but also have quite a bit more treatment to go.

The pathology report from my surgery, from testing the lesion and lymph nodes removed, show no residual cancer.

I knew the odds of this happening was only 50/50 because hormone-positive tumours don’t always respond well to chemotherapy but mine did.

It also meant all the effort put into crowdfunding for the (very expensive) drug Perjeta was not for naught and neither were the frequent hospital trips, the constant stabbing of needles, losing my hair and discovering just how far my pain tolerance stretched.

I’m not out of the woods yet as I have another 13 cycles of Herceptin to endure, which will be administered every three weeks.

Going nuclear (literally)

There will be another appointment soon to prepare me for radiotherapy and that will start in a month or so.

I found it very humorous that my oncologist as well as the nice staffers in radiology asked me if I could raise my arms — this is the gauge for how well I can endure the treatment.

My physiotherapist was also surprised I had near-full range of motion in my arms because my legs are a whole other story.

He said my calves and hips were very stiff, and I needed to put work into strengthening my glute muscles as well as do more exercises involving my shoulder blades.

As of now getting up or out of a seat requires a quick prayer, a sharp inhale and resigning myself to painful, awkward hobbling.

Still, at least I won’t be having periods as I am now on the estrogen suppressant drug Tamoxifen, which means I am in a chemically induced menopause.

This would perhaps be devastating for a much younger woman or one hoping to conceive, but I am at the age where I will only want to hold a baby if I can give it back.

I have also been irritable and prone to sensory overload since I was a small child so I often joke that I would be little different come menopause.

Chemotherapy has also made me rather heat intolerant to the point I won’t be able to tell if I’m having a hot flash or if it’s just Malaysian weather.

While I come across as being rather blasé, there is a real need for women to be given better advice on how to deal with perimenopause and what comes after.

Reddit has informed me that it’s not just our hormones changing — menopausal women face changes to their genitalia including, sometimes, the complete disappearance of the labia minora.

I’m not going to explain what that is, look it up.

To have cancer and also be dealing with induced menopause would be hard on any woman so if you know someone going through it, please be kind.

I’m still on hospitalisation leave and while my surgery incision is healing well, I’m still not very mobile.

There are many questions I would love to ask my body.

Why is the arm on the side that doesn’t have cancer less mobile than the cancer-affected side?

I wake up every morning with my arms sore as though I spent the entire day before working on my butterfly stroke.

Why is my ankle swollen?

Why are my eyelashes and nose hair still not growing back though the top of my head now feels like a kiwi fruit, coated with downy short hairs?

At the same time I wistfully daydream about flying somewhere, anywhere just to clear my head but with a new Covid variant (again) and my legs made of lead, I think next year is a safer bet.

My knees are currently vetoing even the thought of visiting my favourite cafe in Melaka as I find even my purse too heavy to carry around.

Next week I’ll be seeing my surgeon for the usual hospital adventure where I wait two hours to see a doctor for 10 minutes.

For now, though, life is as good as it gets, my cat has forgiven me and is back to yelling at me for treats, and I feel as ever, very lucky, very blessed and very grateful.

Thank you for coming along on the journey and your support, whatever form it took.

(First published June 4, 2025)

JUNE 4 — Last week I talked about the unexpected challenges of getting my EPF medical withdrawal application approved.

The good news is that it’s sorted and for the moment, I can set any money concerns aside and just focus on building up my strength.

I’m grateful that it has all been resolved and thankful to the EPF staffers who, throughout all this, have always been polite and as helpful as they could be, all things considered.

Since my last column I’ve made visits to my physiotherapist and the dentist.

Alas, I’ve been too tired and weak to keep up my rigorous dental routine so I needed to extract a wisdom tooth as well as patch up a few cavities.

What’s more pressing is that my body is so stiff that I have to pause, steady my core muscles and pray each time I need to get up.

I asked my physiotherapist if my body was supposed to be like this — muscles hard and stiff, legs especially so.

He said no, it was rather unusual but he joked that my legs had had to carry me throughout such a challenging journey.

I’ve tried various stretches and exercises, muscle relaxants and finally multiple sessions with my handheld TENS/EMS machine but relief has been difficult to find.

The EMS machine has helped me loosen up my left quad but I overdid it on my right leg so I’m hobbling around with multiple heat plasters slapped on wherever I feel pain — they need to make a whole body heat plaster as at this point there’s very little surface area that doesn’t hurt.

From my reading, it’s likely what’s going on is from the cumulative effects of all my cancer treatments, inflammation from recovering from surgery, and general muscle weakness.

There’s nothing that can be done besides just doing my best with at-home rehab, finding time to take walks around the neighbourhood, while bringing my cane to ward off my creepy neighbourhood stalker uncle.

I miss my dog most right now because a cane is no substitute for a protective canine companion but I don’t have the stamina nor the headspace for a new pet.

My one remaining cat is currently mad at me and has gone off in a huff to hang out with neighbours, as she does not appreciate her daily routine being disturbed with how often I sleep in or need to stay elsewhere for medical reasons.

When she does make her appearance she will perch on top of a chair to nag me, perhaps a reproach for not adhering to her feeding schedule.

My days are spent napping, exercising, laughing at TikTok videos. and mostly ignoring whatever is going on in the local political scene because whatever I have read makes my eyes hurt from all the rolling they’ve been doing.

The silliness in Malaysian politics is never ending and while I do like the occasional dose of unseriousness, there are more pressing issues to be faced.

We are still bleeding workers in the public healthcare system, we still keep getting conned by “build another highway” rhetoric in addressing traffic congestion, and the loud rumblings about the cost of living are becoming ominous enough for the people who should be listening to them.

I resume immunotherapy this week and am not looking forward to another round of “find the vein”.

Still, thinking back on how much has happened since my diagnosis last year, I have a lot more to be grateful for than to grieve.

On Reddit, a man posted asking for recommendations for what games to play on the Steamdeck he was gifted “before I die”.

His cancer has not been responsive to treatment, his prognosis bleak so he is just finding comfort in his greatest joy — video games, because his body is too weak for him to do much else.

I think of him often as well as a man in Gaza, Mohammed, who on Monday said goodbye to his cat, Leo.

It was a sad day on social media too as there were many, myself included, who’d followed Mohammed’s journey with his feline companion, surviving so many attacks on their homeland.

Mohammed’s devotion to seeking out vet care and food for his cat, even while living in the middle of a genocide, is a stark contrast to those careless Malaysians who dump their cats at wet markets.

Leo died from starvation in the end as food for humans, what more for pets, is scarce now in Gaza, with a bag of flour now costing US$500 (RM2,126) due to scarcity.

Mohammed is now seeking funds to help feed his family including his sister’s very young children so if you can spare some ringgit, you can send some over to him at his campaign here.

Will there still be Gazans left by the time I finish my cancer treatment?

It would be easy to turn inward and think only of surviving my cancer but the world still goes on; my cancer will not get better by turning away from the sadness out there.

In a better world, Leo would be lazing on a cushion being doted on by Mohammed’s young family members, and there would be laughter and peace in Palestine.

Believing that a better world is possible is necessary and almost an act of defiance in this present time.

I will stay believing and advocating because hoping for something better is a shared dream of all humanity, even if some of us don’t realise that yet.

May Gaza in my lifetime be a safe place for its people, their children and even, yes, their pets.

MAY 28 — Since I’m still in the dark about how much my next 13 Herceptin infusions will cost in total, I decided to withdraw some of my EPF money “just in case”.

It has reached a point I am too paiseh to solicit more donations when there are others earning less and suffering more than me, so why not try and use my own money, right?

No one told me it would be this challenging.

The good part: the Petaling Jaya EPF office is easy to get to, right across from the Taman Jaya LRT and it’s run very efficiently at first glance.

At the reception counter, you get asked why you’re there and then handed a number.

None of my multiple visits to sort out my withdrawal attempt took more than 15 minutes but here’s the bad part: I had to keep coming back.

Weirdly, EPF is behaving a lot like an insurance firm in how it keeps trying to get me to justify my large medical expenses and hinting that I should try and ask Socso instead for money.

Just so people don’t think I’m using my crowdfunding money to buy crypto, let me explain why I’m harassing EPF.

I have just enough after crowdfunding (after paying for four rounds of Perjeta, that cost RM21,200 in total) to cover 13 rounds of Herceptin but only if the price hasn’t gone up and, unfortunately, that is all my remaining donations will cover.

I have a month of radiation to do once I’ve healed from surgery and I’m waiting for tests to confirm that I have no more residual cancer.

If the surgery didn’t successfully excise all the cancer cells I might have to do more chemotherapy or perhaps endure more surgery.

Not to mention the cost of travelling to the hospital, occasional private GP visits in-between, and takeout (because cooking is difficult sometimes) so of course I get a bit anxious about money because my monthly budgeting prior to this did not factor in cancer treatment and recovery.

Yes, friends, being chronically ill is tiresome and tiresomely expensive.

I’m not destitute, just being pragmatic because as this cancer experience has proven, life can throw you one heck of a curveball at times.

Not so simple processes

My first visit to EPF, I didn’t bring a letter from my employer so I had to bring one the next time around but was then told my letter did not state explicitly that my employer was not covering my costs.

What I ended up doing was Googling “kwsp contoh surat pengesahan majikan tidak menanggung kos perubatan” and behold, someone else’s letter showed up, so I used it as a template.

Basically your letter has to state very plainly “we the employer of (so-and-so) are not covering the (specific medical procedure/expenses) of so-and-so.”

I felt I needed to be a bit more detailed so I added in the letter that I did not claim medical reimbursements from my employer nor from work insurance, and that I had stated upfront I was going to attempt to somehow find the money myself.

You’d think that would be the end of it.

Over many visits I had to keep explaining why I had switched from private to semi-government to public hospitals and why I kept hopping between so many institutions.

“Miss, could you get HKL to give you a medical report? Could you ask the Klinik Kesihatan to write a memo on your entire treatment progression?”

When I was asked that over the phone by the well-meaning EPF staffer, I was tired, my joints stiff and aching, my wound site itchy and a strange phantom pain in my under arm and my very annoying drain bag at my side.

I had to explain to the staffer that HKL could take up to three months (or more in some cases) to provide a report unlike private hospitals who usually take a few weeks, but warn you that it could take up to a month.

It was all very tiresome but imagining what it was like for other people, far sicker than me, with no one to help them with all the various forms or who needed to travel further to the nearest EPF branch, it must be so hard.

If you hop between various private and public hospitals, EPF will find it confusing and will attempt to get you to apply for a medical report from each institution again without considering that medical reports take so much time and cost.

If I had tried to apply for withdrawals or funding before starting cancer treatment, dear reader, I don’t know if I would be in treatment right now.

My cancer being aggressive meant that I had to start treatment soonest to not give the tumour time to grow larger or for my cancer to spread elsewhere.

Imagine — if I had tried to withdraw EPF money before starting treatment I might have Stage 3 or 4 cancer right now instead of currently recuperating from surgery.

Does EPF not know that late stage cancer is even more expensive and tedious to treat?

It would be darkly humorous if I wrote on my tombstone: “Here lies Erna Mahyuni who might not be here if EPF had processed my claims instead of letting my cancer spread to my bones.”

Reading about people who’d had their EPF medical withdrawals rejected for various reasons or who couldn’t get reimbursed by insurance because they’d been waiting over three months for their medical reports just makes me sad.

Speaking of sadness, I saw some pictures of me at a friend’s wedding dinner and seeing how much weight I’ve gained in the last six months got me a little depressed.

People often picture cancer patients as gaunt or skeletal.

As many breast cancer patients will tell you, the combo of steroids and being chronically ill means you pack on the pounds pretty quickly.

My whole body is now so stiff and achy that it feels as though I’m slowly turning into stone.

I made a brief visit to 1 Utama after yet another taxing visit to the EPF office to try and get them to let me withdraw my money and nearly passed out after walking for 10 minutes.

It’s all very depressing as the literature says I need to move as much as possible but right now what is possible isn’t very much.

Horor or medical comedy?

On Monday I finally had my drain tube taken out but, as always with me, it didn’t go quite as planned.

Seeing my nurse’s brow furrow as she began the process of taking my tube out I thought Uh-oh.

“It’s rather tight,” she said.

“I’m sorry but it’s going to hurt.”

All the times I was in terrible pain during this long cancer journey flashed in front of my eyes.

Since running away screaming was as usual not an option, I just told the nurse: “It’s OK.”

“When I tell you to take a breath, take a breath, OK?” The nurse said.

She would tell me to take a breath, then exhale and this went on for a bit as she began tugging on the rubber tube that was my drain.

Fortunately it wasn’t quite as painful as I had anticipated.

“Is it out?”

My nurse again was frowning.

“Yes, but… there’s a lot coming out.”

She hurriedly called over another nurse and they both exclaimed about how much extra fluid was apparently coming out of my body from the drain tube opening.

The other nurse asked if it hurt and I shook my head, more dazed than anything.

Thanks to this new exciting event I have to go back to the hospital in a few days just to make sure I’m not going to continue to be a geyser of bodily fluid.

I’m not thrilled about my cancer journey feeling like the medical version of The Office; hardly anything about it is mundane or routine, instead I feel like an unwilling actor in a TV show written by a sadist.

Whenever some new fork in the road appears I just think to myself: “At least I’ll have something to write about.”

Tune in next week to find out if EPF will let me have my money or I finally have a long overdue mental breakdown just because I can.

(First published May 21, 2025)

MAY 21 — Good or bad news depending on how you feel about me: I survived my surgery!

Facetiousness aside, as per usual my hospital escapade was a horror-comedy.

Let me list down the funny (or not funny) bits:

1. Being asked if I had my mammogram and ultrasound documents with me… at 10 minutes to four, the day before surgery, when they could have just asked me to bring them last week, maybe?

Was not told by radiology to bring said documents but I guess, dear reader, just bring all your documents to every visit where they might be useful lest you be me and have to call up my hapless housemate to rush over to HKL in the middle of rush hour.

2. The general surgery unit was unaware I had a CT mammogram as well as an ultrasound last Friday by radiology.

Apparently the departments do not talk to each other, which means It’s my job to update them.

I did not sign up for this.

3. Being unable to sleep in the daycare ward because it is uncomfortably warm, your pyjamas are rather thick (though decent quality), another ward occupant is playing loud videos on her mobile phone while another occupant is busy throwing up.

I also did not sign up for this.

4. The ward bathroom is stuff of (my) nightmares — no soap dispenser, the one soap bar placed on the sink on top of its wrapper ended up being stolen, one toilet was broken, some stalls are too small and the floor is full of puddles, some ankle-deep.

If you end up being warded, have someone bring you soap because you’ll want it.

5. Due to a sudden influx of patients, I got a free ward upgrade on my second night to the first class ward where I had a nice time chatting with two occupants and another occupant just happened to be the mother of an old friend.

I also got to sleep peacefully for a blissful, uninterrupted four hours until I got woken up multiple times to be fed pain medication, then have my drain bag emptied, then be told to prepare for my surgeon to see whether I was fit for discharge.

6. My surgeon looked at my wound for 15 seconds before declaring: “OK boleh discharge.” (OK she can be discharged.)

After my worries over the weekend that my lesion was too large (my radiologist declared it was rather long and had ‘legs’) I guess it didn’t prove to be worrisome to the surgical team?

So I was rather surprised to wake up with more of my boob than I expected but perhaps it will shrink once the swelling goes down.

7. I take back what I said about men being worse at blood draws.

Three women junior doctors attempted to stick me with a needle for IVs but failed to the point I was screaming in the middle of the night — and by most people’s standards I have ridiculously high pain tolerance.

Hours before my surgery, another junior doctor tried… I have never had my veins slapped as violently, as though their refusal to give into the needle was a personal affront.

Alas, it was also unsuccessful until a male junior looked over my veins and somehow inserted the needle around the site where a previous doctor had failed without blowing my vein.

“You owe me one!” He told one of the other doctors.

I probably owe him too, as by the fourth needle stick attempt I was telling the doctors that if they failed again I was walking out of the hospital, surgery be damned.

How am I now? Well I caught a throat infection and the right side of my jaw refused to unhinge, even with muscle relaxants.

My wound is healing nicely (according to the private GP I visited on the third day due to paranoia and being unable to open my mouth properly) though no one told me that it’s perfectly normal to have fluid seep from my wound randomly.

You can imagine my horror on waking up and discovering wet spots on my night clothes, thinking my drain tube had dislodged while I slept.

The hospital’s dedicated breast cancer nurse changed my dressing on Monday to waterproof ones — I can shower like a normal person now, huzzah — and said no, miss, you can’t have your drains out yet, come back next week.

Next week is also when a big Asean event is happening so pray for me as I attempt to get to HKL, on a Monday morning, with multiple road closures and diversions.

Stay tuned for next week’s update.

(First published May 14, 2025)

MAY 14 — As you’re reading this I will be at the hospital for my lumpectomy and probably being discharged the same day.

The last week had been stressful as I was trying to get the house clean, make checklists, run errands and get everything in order for my three weeks off for recuperation.

One of my sisters scoffed at me: “Just leave your house as-is. Have you seen my house?”

In that spirit I have decided that apart from my stash of soups and cup noodles, I will just give up on trying to cook the first week.

My body still feels as though it is slowly turning into stone but mentally, I can’t seem to persuade myself to go out for walks.

After various encounters with stalkers and other weird men, and no longer feeling safe without my now-departed dog, going out in my neighbourhood feels like a fraught exercise — not to mention my legs being so unsteady.

Instead, I’ve just been doing dance workouts in my bedroom (thanks YouTube) though I can only manage up to five minutes before I’m too exhausted to manage more than a cooldown routine after.

Post-surgery, I already have a printed list of rehab exercises to do, but I will still have to find time for actual walks.

Maybe I will motivate myself by walking to Dou Dou Bake as a croissant seems like a good distraction from my likely agoraphobia.

There’s no point in worrying about the surgery because, like everything else, all that’s required of me is to just show up and avoid dodgy supplements.

All I can hope for is for the surgery to proceed smoothly, that I do not have any lingering active cancer (that would mean more chemotherapy), my wounds close up quickly and that the three weeks is enough rest.

I’m hoping that I get discharged the same day as it will mean my surgery was relatively minor without complications.

My lumpectomy (also known as a partial lumpectomy or breast conserving surgery) is a fairly routine procedure where they will remove what is left of my tumour.

I expect a few lymph nodes to also be removed in the process and I’m hoping to avoid drains but that won’t be up to me.

Thank you for coming on this journey with me and I will see you on the flip side.

(First published May 7, 2025)

MAY 7 — While you are reading this I will be in the hospital spending another day doing immunotherapy.

My latest tests show my heart is holding up despite all the cancer drugs it has had to endure, so that’s good news at least.

However my latest mammogram and ultrasound have findings that could affect my surgery — whether it happens or if I end up getting a mastectomy instead of a lumpectomy.

Speaking of Wednesdays, as a Wednesday baby I find it an amusing coincidence that my column and my chemotherapy sessions also happen to be on those days.

The universe has a sense of humour, I suppose.
I don’t think I need to tell you what day my surgery’s scheduled now, do I?

Now it seems my schedule could be up in the air and I’m despondent, but well, we’ll see what happens next week.

In other news, singer Michael Bolton, I found out, had brain cancer and the most aggressive sort — glioblastoma.

He told People: “Succumbing to the challenge is not an option. You’re really quickly drawn into a duel. I guess that’s the way you find out what you’re made of.”

Besides a successful surgery to remove the cancer, he’s gone through chemotherapy and radiation as well as a second surgery due to an infection.

He’s chosen not to find out his prognosis, instead taking regular scans (glioblastoma has an over 90 per cent recurrence rate), exercising, taking voice lessons and doing voice therapy online.

I do think it’s important to point out that Bolton is perhaps privileged in the fact that he is financially comfortable enough to not have to worry about the costs of his treatment.

Still, he does make a point when he made the following observation about how post-cancer treatment he finds comfort in general more easily, having a “heightened sense of appreciation.”

“It’s unthinkable for it to be okay not to make the most of your life,” he said.

“I think we develop capabilities and problem management, and we learn how to make the best out of a bad situation. You have to be a cheerleader for yourself.”

Reading stories from other cancer patients like Bolton’s gives me both comfort and perspective.

Comfort in being reminded that I’m not the only one dealing with this and perspective in that by many metrics I’m luckier than most.

At the same time, I don’t want to sugarcoat the cancer experience in this column.

Chemotherapy can be hard and painful, the frequent visits and long waiting times are wearying on body and soul and side effects are going to vary for everyone.

Reading about Bolton’s treatment, I’m thinking good for him, for getting through chemotherapy and radiation because it can’t be easy at his age.

The truth of the matter is also that cancer treatments don’t always help prolong a person’s life so it’s important to consult with your doctor about whether the cancer treatments are worth the toll they will put on your body.

In my case it was straightforward.

I am “young” (by public hospital standards since the average person you see in one is geriatric), have no drug allergies, have no other comorbidities besides borderline high blood pressure and my cancer isn’t very complex — early stage, only one major tumour detected.

Whatever happens next week I have no choice for now but to wait and see.

Worrying won’t change anything and I’ll just have to keep doing what I’ve been doing — crossing every bridge as it comes instead of worrying that it will collapse.

I’m still here, still living as best as I can and part of that is thanks to the support of many people in my life.

Uncertainty can be terrifying but for now, I’ll leave tomorrow’s worries for tomorrow, and have a cookie today.