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My mum had 2 choices: Die soon or take medicines leading to painful death 11 years later

Soft truths to keep Singapore from stalling.

Jeanette Tan | May 12, 11:31 am

For the past 17 years since my mother died, I had been living with one story of how that happened.

She had cancer — more specifically, the term I recall being used was lymphoma.

My mother passed away when I was 13

From what I remember, it grew in her abdominal walls, and she almost died from it in 1990 (when I was two years old), but the doctors apparently lacked the technology back then to diagnose it accurately — they simply didn’t know what it was.

So somehow, she survived that period, the cancer went into remission for about a decade, until it relapsed in stage 4 in 2001.

I was turning 13 when she checked herself into hospital for a terrifying month and a half of chemotherapy that left her a shell of who she was, before I think the doctors and my family, and perhaps she, too, decided she was not going to be able to win this ferocious war against herself.

I was determined that she would bounce back from this, even through her very last days awake in isolation, gripping my wrist and saying to me urgently that she was going to die but she wasn’t ready to go yet, amid a 40-plus-degree fever we couldn’t bring down despite our best efforts, and her eyes rolling back into her head.

Even in the Intensive Care Unit, when she had stopped responding to us, I thought our Divine Mercy prayers for her recovery would find fruit.

Little did I realise, though, the adults in the room were more likely interceding for her to find peace in her passing.

Despite being terribly unprepared, I tried to hold my family together

What made me particularly upset about my mother’s death was, apart from anger at the doctors back in 1990 for not knowing it was cancer and tackling it sooner while it was in its early stages, the fact that I simply wasn’t prepared for it in any way.

My mother’s death affected my father and two older siblings all in different ways — it regrettably followed that we all drifted in different directions, and over the years, I found myself trying to adopt a peacemaker role to vaguely hold everyone together.

I say “vaguely” because I don’t think I did a particularly good job.

We drifted, my father ended up moving overseas and starting a new life and family there, and both my siblings got married and also started families in the years that followed that.

I was the only sibling at both my siblings’ weddings (thankfully, my father attended all three of our nuptial celebrations), and I was also the only one who involved all three of them in particular roles at my own wedding last year.

Circumstances over the years (financial hardship, selling our family home and buying a new one twice, and more) led to my sister and I eventually becoming close — we are, after all, exactly a year apart in age — but I do still regret my lack of filial piety toward my two grandmothers, who are of course getting on in age, and my failure to see my brother, sister-in-law and my nephew more often.

Never mind the fact that I still don’t know how to feel about the idea of being close to my step-family, because my eight-year-old stepsister is adorable and a sweetheart, and it isn’t her fault she exists.

What would it be like if my mother was around to guide me through life?

I do have a point here — it would have been great if my mother was around to help me navigate these thorny situations.

I wish I knew her well enough, or was close enough to her to intuitively understand how she would have dealt with these tricky relationships.

How should I juggle my work in a manner that satisfactorily keeps a handle over my responsibilities and nurtures the writers under my charge? How should I juggle work and the rest of my life, so I can be a good wife, sister, aunt, godmother, granddaughter, friend?

But then again, it’s possible none of our lives would have panned out the way they did had she not died, when and how she did.

My mother was the centre of our family, and, as I would later discover, a glue that held us together, eating at home together, praying together, going to church together and just not letting our lives spin out of control (and the house spiralling into disarray) in general.

So would there be a scenario in which my mother would plausibly have been around to give me the advice I needed? I can’t say yes with all that much confidence.

Another kind of loss: The pain of losing memories

Time is a painful thing when grieving a lost loved one though, I must say.

It’s easy to say time heals all wounds, you’ll learn to move on with time — but anyone who has lost someone they love will tell you one does not ever quite “move on” from a loved one’s loss.

With the progression of time comes the loss of memories. In my case, I found myself starting to forget things about my mother.

At one point, a few years ago, I wrote down in a diary entry that I could no longer remember what her voice sounded like.

Two years ago, I realised (only because my sister told me) that we had lived longer without our mother than we did with her — for me, two years later.

And the pain of forgetting, personally, is to me worse than the pain of missing milestones in my life as I grew up — my mother missed my O- and A-Levels, my secondary and JC prom nights, my first and second boyfriends, my university graduation, even my first period, and all the jobs I ever had.

Learning about Weber Christian disease

Some of these memories gradually faded away, but with more time also comes more information.

And this is where I tell you the second story I learned, just this year, of why my mother died at the age of 40 — the actual one, as told by my aunt (her younger sister).

What my mother was diagnosed with back in 1990 wasn’t a misdiagnosis that was actually cancer, as I had thought for the better part of 20 years now — it was Weber Christian disease, something I was hearing of for the first time in my life.

I still don’t know enough about it to tell you accurately what it is, so I’m not going to.

But it is rare — and it was really rare when my mother was diagnosed with it; my aunt told me she was the third known case of it in Singapore (I can’t prove this, though — my Googling skills failed me in my endeavour to attempt to obsessively find out more about the disease that would present my mother with a Morton’s Fork, which I’ll tell you about later).

What scares me about Weber Christian disease is, even now as I do read up about it, that there is no known cause; there is also no cure, uniform treatment, or even consistent outcomes for people who are diagnosed with it.

The authoritative medical scholarship on this seems to be quite limited, and I must qualify here that I’m working off a combination of what my aunt told me as well as whatever I could find from websites that were as reliable as I could determine them to be on it.

Between a rock and a hard place

In essence, there was no certainty at all how severely it was going to affect my mother, or how much time she would have to live.

It must’ve hit her really hard, though, considering doctors in 1990 feared the worst — that she could very possibly die at age 29 (incidentally, a year younger than I am now), leaving her sole breadwinner husband with a five-year-old, a three-year-old and a two-year-old.

So here were her two options:

  1. Live with the worst of the Weber Christian disease, and probably die not long later; and
  2. Take a cocktail of anti-inflammatory and immunosuppressive drugs — one, in particular, cyclosporine, which would lead to cancer, in turn also leading to an equally, if not even more, painful death… just later on.

In other words: death by Weber Christian disease, or death by cancer.

And my mother took a gamble on her Morton’s fork, wagering that the suppression of the inflammation of the fatty tissues in her legs would buy her another few years to live — for us.

And it did — about 11 years, to be slightly more exact.

11 years of my mother suffering from her thigh nodules, almost-daily migraines, and the knowledge of death approaching, in the form of a cancer that developed over the years, almost without her realising until it was too late.

11 years of raising my siblings and I.

Turns out, my mother was prepared for death all along

Her incredible (to me then) calm in accepting the news of her Stage 4 lymphoma, and in explaining it to us when she sat us down to tell us about it in June, roughly five months before she checked herself into hospital for chemo, finally makes sense to me.

She knew it was coming all along. This was an eventuality for her, not an unexpected assault. This was the path she had chosen.

Make no mistake, my aunt said to me as we stood side by side, me feeling like a bullet train had run me over, washing dishes at the sink after dinner and yusheng in my grandmother’s kitchen over the Chinese New Year period.

Your mother did not get cancer. She had Weber Christian disease, and the cancer she eventually died from was brought on by the drugs she took to keep that at bay.

… The things she did made sense now

Indeed, it was a choice she made. A choice that would cost her her life either way — sooner or later and more painfully. A true Morton’s fork if ever I’d seen one, to extend what would still be a heart-wrenchingly short life.

Can I blame her, therefore, for pushing my father and spending a bit too much on taking all those holidays as a family that we technically couldn’t afford?

Can I blame her for being a bit selfish with giving my siblings and I more time with our grandparents, godparents and friends now — knowing what she knew, that every second, every day, every weekend she had with us was precious, limited and counted?

These questions circle my head as I type and reflect on this, on the cusp of my first wedding anniversary, which happens to this year fall precisely on Mother’s Day.

Mother’s Day, without a mother, for 17 years

My mother — alongside indeed, all the mothers in my life — was also on my mind the day I got married — my husband agreed to us getting married in the church where my mother’s ashes are interred, and I had the privilege of a few moments in my morning prior to our wedding mass to spend time with my sister and her downstairs at the columbarium.

We also paid tribute to the mothers in both our lives on our wedding day and dinner, both of which also coincided with the weekend of Mother’s Day.

So why am I writing this? I’ve been biological-motherless for more than 17 years now.

But the painful passage of time brought with it, apart from the continued pain of loss, a new appreciation of the heroism and self-sacrifice my mother showed, at such a young age, and as a young mother, in the example of her own life.

And so in writing this, I hope to share my biggest lesson this Mother’s Day — that in my mother’s imperfections, the underlying reason for her actions and decisions, her almost-unreasonable strictness with us in raising us, stems from that choice she made between the toughest of rocks and the hardest of places.

And she made that decision for her family. For us.

And that choice she made is one I only wish I had the chance to know and fully appreciate when I was younger.

Top photo by Sebastian Wong, PixelMusica Weddings. Courtesy of Jeanette Tan.

About Jeanette Tan

Jeanette takes pride in her ability to sing the complete lyrics to "Hakuna Matata" and a host of other Disney songs. She is also enslaved to Katherine and George, her two cats.

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