DECEMBER 25 — The thing about wakeup calls about your mortality is that they’re very humbling.
I have resorted to crowdfunding for my cancer treatment and while I am grateful and surprised people have been so generous, I also feel a lot of shame that I need to be so open about not being able to afford treatment on my own.
My friend said to me: “(I) told you people will want to help. Even though they can’t give that much, they do care about you and your plight and want to help in some small way.”
I have enough of a cushion now to pay for my initial few months of treatment should my attempt to obtain subsidised care fall through, and the peace of mind that buys me is worth more than the entire sum combined.
My gratitude is tinged with anguish but to all those who’ve reached out with help and support, in emails, texts and social media messages, I hope you know that I am more grateful than I can express.
I save your words in my memories (and my email folder) because they comfort me, especially on days where I can’t help but cry.
Explaining my diagnosis
In the interest of transparency, let me explain in more detail why it costs so much to treat my cancer when chemotherapy and radiation isn’t supposed to be so expensive these days.
There are a few types of breast cancer but I can only speak about the specific type I have — invasive ductal carcinoma, triple positive, Stage 2b.
What does that mean in layman’s terms?
Invasive ductal carcinoma just means that the cancer is in my breast ducts and has spread beyond them, with the likelihood of it traveling elsewhere unless it’s stopped by treatment.
For now it has reached a few of my lymph nodes and I will need chemotherapy to shrink the cancer and stop it in its tracks before it grows and spreads.
My treatment plan will consist of chemotherapy to shrink my tumour, followed by surgery to remove the growth (that hopefully has shrunk from chemo), then a course of radiation and medication that I will need to take for the next five to 10 years.
What complicates things is my triple positive status.
Triple positive means that my tumour is “sensitive” or reactive to estrogen, progesterone and human epidermal growth factor receptor 2 (HER2) so my treatment needs to block or prevent those three elements from boosting the cancer or causing its recurrence.
Chemo, surgery and radiation alone will not give me the best prognosis.
What I need is Herceptin — a drug that attaches itself to HER2 receptors in my cancer cells, to stop their growth and division, while also signaling to my immune system to destroy the ‘bad’ cells.
Herceptin is not cheap, though it is cheaper than it used to be, and there are now biosimilar or more generic versions of the drug.
It will still cost a couple of thousands of ringgit, and I will need to pay monthly to be treated for at least 17 cycles.
Without it, I’m looking at a bleaker five to 10 years’ prognosis compared to the 84 per cent survival rate with Herceptin treatment, delivered via infusion alongside my chemo drugs.
It shouldn’t be this way
I know well-meaning people will ask the usual questions — why don’t I have emergency savings, or insurance or a family who can help?
On insurance, I have pre-existing conditions that make getting insured both difficult and expensive though I would rather not elaborate on the specifics.
As for money, it is hard trying to build a nest egg when I have never earned that much more than what I need to get by and admittedly, had a lot of bad luck and poor financial decisions along the way.
The pandemic also put a dent in my mental health and finances in ways that hurt a bit too much to explain here; let’s just say that many of my plans ended up torpedoed when Covid-19 came around.
Like most people I live paycheque to paycheque, and being the eldest daughter of seven children of a lower-middle class family meant my twenties and early thirties saw whatever savings I had sent back home for emergencies.
It doesn’t make me special, it just makes me one more ordinary Malaysian with very ordinary troubles.
Somewhere, someone too is going through the same thing — dealing with a scary medical diagnosis while not having a large reserve of funds.
I feel pain, fear, shame and a fair bit of humiliation but there is no choice but to swallow that all down to admit I’m struggling.
To anyone going through the same thing, I know just how you feel and how hard it is.
Let that fear and sorrow move you to find a way through because there can be one.
If posting on social media scares you, ask family members or close friends to spread the word to people who could help, whether it’s your village head or a welfare association, zakat, religious associations or maybe even someone like me.
Write to your MP or state rep.
You’ll be surprised to find doors you never knew existed could open, and people who you never thought would care would be there in ways you never expected.
I hope you’ll still feel life is worth living even if it feels as though death would be the easier route.
I hope you’ll try.
Wish me luck as I start over at Kuala Lumpur Hospital and that next week, I can get back to being as silly as I usually am in this column.
Again, thank you for being kind and as always, to my readers, thank you for reading and all the emails you’ve sent me over the years.
You are a blessing I do not feel I deserve, but for which I am sincerely, eternally, grateful.
