Month: December 2024

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.