Month: July 2025 (Page 2 of 2)

(First published April 30, 2025)

APRIL 30 — When my grandfather was dying, he climbed a ladder and fell off it.

He passed on not long after.

It wasn’t from the fall however, it was mostly from complications of late-diagnosed brain cancer.

I wonder what he would have thought if he could see me last week, also up a ladder.

My ceiling light needed replacing and it was a task I often did myself.

As I perched, seated on top of my faithful, paint-splashed aluminium ladder, reaching my arm out, I realised this time it was beyond me.

My arm could not stay steady enough to properly fit the new light into the brackets.

I kept taking deep breaths, raising my arm again, and again, until I accepted it was a lost cause.

It feels as though cancer’s job is to keep knocking me down multiple pegs until I accept that I am but a limp noodle wrapped in skin, fragile and weakened.

Last week was rough as not only was my roof leaking, my air conditioner suddenly decided to release a stream of liquid on my bedroom floor, my legs were stiff and prone to giving way and everything tasted like s**t.

I gave into my inner child’s desire to run away and made camp at a nearby hotel — thank goodness for last-minute booking discount rates.

A good night’s sleep helped me see there were some bright sides to my situation.

Fixing my roof and air conditioning now would mean they wouldn’t be vexing me during my convalescence period post-surgery.

As of writing, my roof has been re-waterproofed, my air conditioner serviced, but now it seems the plumber must visit to check on my gutters (no this is not the setup for a porn episode).

I am counting down the days to my surgery mid-May and it feels like the days are coming faster and faster while the weeds in my garden threaten to engulf the house.

It is vexing coming to terms with my current fragility while knowing that I will be even more made of glass post-surgery.

Perhaps climbing a ladder was a way for me to feel less like a very crabby piece of crystal.

At least, for now, my bones have stopped hurting though one of my toenails is turning black and odd smells, like a certain fast food chain’s mango egg tart (a culinary abomination) make my stomach turn.

I am restless, and perhaps more than a little reckless, but if you were me, perhaps you too would be fiddling with the lights out of boredom and needing a change of scenery.

Alas, I can’t (by choice) travel beyond the Klang Valley as I can’t risk coming down with something so close to my long-awaited lumpectomy.

I hope that it will be just the one surgery, that my surgeon gets clean margins, because otherwise I will need to again be wheeled into the operating theatre until a satisfactory amount of cancer cells have been excised.

There is no point in mulling the what-ifs for now as I have an echocardiogram next week and another immunotherapy session, where I will have one final round of the very expensive Perjeta drug.

Then I will just be bleeding money paying for Herceptin (which is nearly RM2,000 per infusion) every three weeks for as long as my doctors think I need it.

Meanwhile I hear there is a shortage of the cancer drug letrozole at Universiti Malaya Medical Centre, which must be vexing.

I wonder if I will have to worry about my medication supply once I finish my immunotherapy and radiotherapy sessions, and start on five years or so of medications such as tamoxifen.

Still, I will just have to do what I’ve been doing — crossing each bridge, and river, as they come while trying to remain sane.

It does no good for me to worry about hypothetical situations such as my cancer fund running out or my cancer cells being more stubborn than expected.

For now I am alive despite my strange affectation for climbing up ladders despite my fear of heights so I will still enjoy being able to breathe, move, eat and tell you all about what daft thing I did this week, every week.

I will give thanks for ladders that stay strong, even when my legs don’t, and my guardian angel who is probably overworked and contemplating retirement.

Until next week, dear reader, when we find out if my heart has survived all the drugs I’ve made it endure so far.

(First published April 23, 2025)

APRIL 23 — If someone had told me I would go to war with a church over Easter weekend, I would have laughed.

It all started Friday morning when I went to the hospital again and had a rather good morning.

For once the traffic was super smooth.

Before an hour was up I had already paid my consultation fee (it usually takes two to three hours of waiting sometimes) and within two hours I got to see a surgeon who told me my most recent X-rays were fine.

All I needed to do was get an all-clear from anaesthesiology and my surgery would be booked for May.

I passed that hurdle, got a nice, pleasant session with a cheery physiotherapy doctor who also wished me the best of luck with my surgery.

It seemed like an honest-to-God miracle to be home from the hospital before noon and so I decided to order takeout.

You see, I had woken up at 6am to get to the hospital and had no time to have a proper meal with all that waiting.

Not an hour later I walked out my door to see not one, but two cars blocking my gate.

My hapless delivery rider was unable to go around either car and was forced to camp outside a neighbour’s house and I had to open my gate and also navigate around the cars who had decided my porch was a free parking spot.

I knew who was parked there — parishioners at the nearby church because, unfortunately for me, it was Good Friday.

Reader, I was livid.

It was hard to get past both of those cars; there was just a tiny opening right next to the drain.

Being physically compromised with my weakened legs from chemo as well as not having eaten, I could have fallen and hurt myself.

Then I would have to lie there in the dirt waiting for an ambulance that would also be blocked by the same two damn cars.

After thanking my rider, I set my food down on a table and marched right outside.

I’m not proud of what I did.

I don’t know where I found the energy.

Somehow, I was angry enough to drag a 1.3-metre-tall heavy wooden planter, a dustbin and three flowerpots and two of my ‘No Parking’ cones that I had to prevent people blocking my gate (though obviously they didn’t work) to the front where I decided to arrange them in various calculated-to-inconvenience positions.

Maybe, I reasoned, they could read the traffic cones better if I planted both of them on their car hoods.

My piecé de resistance was the sign I printed on my gate on A4 paper that stated: ““What would Jesus do? Not block a cancer patient’s gate! If an ambulance comes you can fly here to move your car, ah?”

Then because I was very tired, I lay down, ate my food but was still somehow very angry.

It was probably a combination of my prescription steroids and sheer rage.

I know, I know, I was petty and dramatic.

That wasn’t even the end — I emailed the church and to their credit they said they would “speak with the parish priest to find a solution” while also trying to explain that the church parking lot was under renovation so no one could park there.

Politely I replied that, well, parishioners shouldn’t make it my problem.

I know people would say I should have handled it with more grace or as Malaysians say “kasi can (give them a chance)”.

No matter how Karen-like I sound, I still don’t understand the selfishness that goes into parking in front of someone’s home entrance without even leaving a business card or phone number behind.

I dreaded the coming Easter Sunday because it meant, yes, the likelihood of someone again blocking my gate.

Fortunately only one car parked outside my house, right outside the makeshift boundary I had constructed, planter, sign, parking cone and all and most importantly not obstructing the gate.

Speaking of Easter, it was also when the long-ailing Pope Francis finally made his return to the Lord the day after.

Like many people, of all faiths (or non-professing), I mourned his passing, the loss of a servant of God with an enduring, unshakeable compassion.

Even on his last day on Earth he still found the energy to call for a ceasefire and peace in Palestine.

Even during his last week he found time to visit inmates of a prison on Holy Thursday.

Meanwhile here I am almost crying while struggling to put on my new compression bra for my post-surgery recovery, because my fingers are weak and feeble, the zip keeps coming apart and my fragile mind was struggling trying to figure out how it worked.

Life really likes to keep humbling me, I think, to almost be defeated by, of all things, a bra.

Maybe if I live as long as the Pope I’ll learn to save my anger and conviction for worthier things than inconsiderate churchgoers and find it in this much smaller heart to have a bit more compassion.

Right now, though, as cancer and Pope Francis both remind me — none of us are guaranteed even one more breath of life.

So this Easter season I will remember that life is a blessing, even when it is laced with pain and uncertainty and the only way, thorny or not, is forward.

Even if people are really bad at parking.

(First published April 16, 2025)

APRIL 16 — You don’t look like a cancer patient, my friend said.

I don’t blame him — the people he’s known to have cancer were noticeably gaunt, shedding weight quickly to the point they seemed to be wasting away.

Meanwhile, I just found out I gained 2 kilogrammes since my last weigh-in three weeks ago.

It annoys me greatly.

If it wasn’t for my bald head (and my telling everyone), I think people wouldn’t even realise I had cancer.

There are more things that people don’t see.

I am a bit tired of being told I am strong, a warrior, so positive when the simple reason that I seem almost unruffled by all this is because trauma and pain are no strangers to me.

When you’ve faced many trials or had what Chinese soothsayers would call 命硬 (rough life) every tribulation just feels like one more thing to get over and I am, albeit unwillingly, forged in fire.

Of course I have negative feelings and thoughts about this whole cancer thing, and I am not special in any way.

I’m just pragmatic.

After getting my tears, rage and nervous breakdown over with, I have no choice but to focus on getting every cancer treatment hurdle over with and I am happy to announce that while you’re reading this I will be undergoing my final (hopefully) chemo treatment.

Even more good news — physical examination found no palpable proof of a tumour so now comes surgery, scheduled next month.

This was made possible thanks to being able to pay for my Perjeta infusions in the first place.

The surgery will remove what is left of my tumour as well as any cancerous lymph nodes and between now and then, I have even more appointments.

I got done with an X-ray but will need to see an anesthesiologist, have another echocardiogram, one more round of immunotherapy (Perjeta and Herceptin) and then a pre-surgery medical appointment.

Yes, I am very tired of going to the hospital multiple times a month but that’s just the cancer life for you.

After getting the good news about my cancer tumour status and surgery date, I was texting multiple people and also making different posts on my social media.

It might seem like tedium but isn’t that a good “problem” to have? To have more than one person happy to hear from you about your cancer updates and having people to share in your joy is, I found out, not always a reality for many people.

In the time since my diagnosis I’ve heard news of cancer deaths, not people I knew personally but dear friends of friends or in the case of another friend, a parent.

While I’m happy to reach one cancer milestone I will always be reminded that some cancer journeys are sadder or rockier, while some end far too soon or begin too late.

I know that right now I am where I am because of my circumstances and the support from friends and strangers.

What I’ve also learned is that we need more doctors, better facilities, a means of funding care and better preventative healthcare besides telling Malaysians they eat too much and they’re too fat.

Again I remind you, if you’re reading this, to not delay addressing any doubts of fears about the state of your health.

If you’re scared of the cost, look around and ask — if not public healthcare, Socso’s Behati exists and many NGOs advocating for specific diseases often have drives to promote testing.

For now, dear reader, I wish you the best of luck and the best of health.

(First published April 9, 2025)
APRIL 9 — I am going to put this out there because I am very tired of people who have never had cancer giving me this same piece of advice.

If you guessed “avoid sugar”, correct.

The next person who tells me to do that I will personally buy a box of doughnuts just to pelt you with, so you had better show up to my house so I can get some arm exercise.

If you do not feel like having your face being used as a doughnut dart board, perhaps read the MD Anderson explainer on why cancer patients do not need to abstain from sugar to get well.

My tiredness has increased as well as my aversion towards food.
Everything tastes as though someone has dropped an entire bottle of liquid paracetamol into my food so I rarely am able to finish my meals because halfway through eating I will feel nauseous.

My food bills are currently ridiculous because too often I am just too tired to stand long enough in the kitchen to cook or my arms are jello so I don’t trust myself not to drop bowls and cups.

Takeout ends up being the go-to option on too many days or sometimes just my favourite curry cup noodles, though it seems someone else also likes the same brand/flavour as I often find just one or two cups left in the grocery aisle.

The first week right after chemotherapy is also when every bite of food gets me hiccuping or simply drinking a glass of water feels like I’ve swallowed a knife.

I have to avoid most acidic foods (coffee for instance) and foods that are too high in potassium (potatoes) so between those two things, it is quite the miracle my weight hasn’t budged at all since I started treatment.

Honestly I am a bit annoyed by my body’s stubborn refusal to lose even a kilo or two.

Even though I have tried to tell people that I don’t want nutritional or cancer advice unless they are in medicine or my actual oncologist I still get messages and emails to avoid sugar, drink lemon water, try this supplement or that herb and I am beyond annoyed by it all.

Let cancer patients eat what they want because if they manage to keep anything down it’s something to be celebrated.

My friend, mother of a cancer patient, told me his doctor told her that water was for bathing, and to feed her son high calorie liquids instead as he was very much underweight.

I must write that down for my friend’s mother who thinks warm water is the best cure-all for all my chemo-induced stomach ailments.

Auntie-ah, when my stomach is screaming in the middle of the night from gastric distress, water isn’t going to help.

Speaking of help, thanks to everyone who has contributed to my crowdfunding efforts — I have collected just about enough to cover my remaining immunotherapy sessions, with any extra (like surgery) I will probably cover by applying for a medical withdrawal from EPF.

I am too paiseh already to keep linking my Ko-fi in my columns moving on so from here on out it will just be me chronicling the ever-annoying journey thus far.

The lump in my breast has softened and shrunk somewhat but it is still there and hopefully it will shrink to nothingness along with the cancer in my lymph nodes so I won’t have to continue chemotherapy after my surgery.

Next week I will spend three days in a row at the hospital for various appointments (and more chemo).

Somehow I will quell the urge to run away to the Andaman Islands though the temptation is strong to do that instead of becoming a human pin cushion.

As I write this, I can barely keep my eyes open though it is 6pm in the evening, but I must resist else I will be wide awake at 3am in the morning.

My heart is a little heavy, though, after reading about a local musician’s wife dying of breast cancer just as she was about to start chemotherapy.

It reminds me that I am lucky enough to not just be diagnosed early but also to be treated quickly and, even if it doesn’t feel like it, being able to endure my treatment.

There are people who have had to stop their chemotherapy or immunotherapy sessions because they would end up in the ER.

Right now there is a vague pain in my hip, a strange shooting pain in my right kneecap and a bitter lingering metallic taste on my tongue.

In the long run, they will be just little things, annoying little pebbles on this road to finally be free of this annoying (but common) ailment.

So if you’re reading this and putting off your checkup… maybe don’t. An early diagnosis can make all the difference and I hope you too, like me, are blessed with one.

Meanwhile, I will order doughnuts. Life is too short to listen to some stranger tell you that you can’t have a jam doughnut.

(First published April 2, 2025)

APRIL 2 — Of course, the one time I go to a mall without my cane, I fall so spectacularly I can only remember rolling around and somehow cutting up both my knees.

My mask was loose and instead of stopping to adjust it I kept walking and alas, I keep forgetting that lesson I should know by now — cancer makes you a terrible multitasker.

I remember screaming in the parking lot and suddenly a whole bunch of people coming to help.

Now I wish I could say I was more gracious but in reality the only thing I could do was lie on my side, groaning, not wanting to get up because it bloody hurt.

Fortunately I wasn’t alone and my companion got my bloodied knees disinfected and bandaged though I think, despite the bruises and blood, my pride was what hurt the most.

Perhaps the Fates are trying to hammer it into my skull that my mental resilience does not make up for my needing to take extra care and accept my new normal with grace.

I try to but sometimes I am just overwhelmed with everything else I need to juggle and having to deal with a mountain of new stuff.

My hands are stiff and numb from nerve damage so I now use a TENS device, which is basically zapping them with a current to lessen the pain and slow atrophy.

My bathroom now has a shower chair because I have almost keeled right over from losing my balance, and my spare room now has dumbbells because despite my desire to stay in bed and be a forever noodle, alas, I have to spend time doing strength training to not lose more muscle mass than I already have.

If I could I would not move from my bed, just cocoon myself in my blankets, stop struggling to do all the things I am supposed to do to stay healthy, to fight off this disease caused by my cells simply going mad.

Then I remember that life is a gift.

So is pain.

Pain tells me my body is working, that it is fighting and trying to hold it together, it reminds me that “Here and now, you are alive” — my favourite Terry Pratchett quote from his book Small Gods.

My immunotherapy pain is so strange and alien to me, moving from one part of my body to the other, never settling in just one place.

At one point it’s my hip then suddenly my knee, then my calf, my back, my bladder, my ankle, my foot, my hands.

They never hurt all at once, seemingly taking turns to vex me, the pain singing in the back of my mind as I try to work or eat or sleep.

It might seem overly stoic or masochistic of me but I don’t take my painkillers until I truly need them, so I just put up with the throbbing pulses of discomfort making their way around my body.

Yes, it hurts but I think about the people who probably hurt more and yet they endure it — the people I see in the hospital each time, old and young, calm or agitated and I think if they can, I can.

All of us in the hospital are just trying to live despite the inconvenience and discomfort of it all and sometimes, I wish I could take that quiet solidarity, the empathy for each other’s pain and put it in a pill for all Malaysians.

Beyond history, beyond creeds, beyond the colour of our skin, the tongues we speak, underneath that all we all bleed and hurt, and we should want the best for each other instead of continually believing the worst.

While I am grateful for the support and kindness shown from people I know as well as absolute strangers, I also understand that I’m lucky.

Lucky to not have to be arguing on the phone with an insurer, to be making appointments with the welfare department or other aid avenues, to not have to hope my circumstances go viral on social media and still the guilt eats at me because no one deserves additional suffering on top of the horrible business of chronic illness.

I read about a young girl whose leukaemia isn’t responding to her cancer treatment, and of a friend’s friend who will need chemotherapy for the rest of her life because her cancer can only be controlled and not (as yet) eradicated.

It is too easy to spiral over the what-ifs, the what-thens and the how-nows but cancer isn’t that simple though right now science says there are only two foods that absolutely, definitely raise your cancer risk, namely alcohol and processed meat.

Yet the only way to truly stave off death is to live.

Thus I dutifully chronicle this long torment, hopeful that this helps someone somewhere or at the very least, makes someone stop putting off that check-up.

In the meantime feel free to buy me a Ko-fi (https://ko-fi.com/ernamh2202) while I do my best to see silver linings despite all the very annoying clouds.