After staying silent for a year after being diagnosed with Endometrial cancer, the reality of needing to undergo a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH-BSO) was the catalyst that spurred me to publicly document my treatment journey. More importantly, it was the acute lack of outreach channels, and people that resonate. Being diagnosed at 31 years old meant that I was an outlier of the typical age profile, and was desperately looking for someone to talk to, to learn from their experiences in order to be prepared for mine. Some whom I could have identified easily with, really. As a digital native, I googled hard. But there was no one in Singapore that turned up in my searches. With the stigma of speaking out and taboo of talking about being ill, it was definitely no surprise. The cherry on top of the head, I meant cake, was the discovery of an unrelated Meningioma, a brain tumour that was thankfully benign, on my right parietal lobe.
Throughout the years, I've tried to give an insight to a patient's psyche, the rollercoaster of emotions we go through, the reality of what I've endearingly termed, "medical adventure" and advocating disease awareness. The outcome was unexpected. Friends started to refer friends who were newly diagnosed, strangers would drop me a DM to talk about our situations and I see it as a privilege to be able to provide a better understanding of a part of life that is usually shrouded in mystery.
Phase 1: Endometrial Cancer
Treatment for early-stage Endometrial Cancer usually is a hysterectomy and being diagnosed 6 days before my wedding meant that I was faced with the possibility of never being able to bear a child. To be honest, it was not about not having children of our own but the simple fact that a biological function was about to be lost, forever. I wanted to explore options before going for such a definitive surgery but the fact it will likely be my life-saving cure as a Stage 1 patient meant that I had to strike a deal with my husband. Let me try the fertility-sparing treatment protocol once and if it fails, I'll go for surgery, no questions asked. It was a 9-month long protocol and while there were no signs of cancer for awhile, a sizeable tumour showed up on 1 of my ovaries. When a pelvic exam lasts longer than usual, you'll know that something is up. I suppose at that stage, I've pretty much developed a pragmatic view on my condition and I have every intention of keeping my promise so discussion on surgery dates, should be it a TAH-BSO or keep an ovary for the estrogen and progesterone. I'd personally prefer to remove the ovary because ovarian cancer is such a silent killer plus I'd no longer have any menstruation (or the lack of it) to give me warnings. Left the surgeon to decide but he ultimately took it all out.
After the histology reports, I was upgraded from Stage 1 to Stage 3. Being a digital native, I naturally went online for information and undoubtedly scared myself shitless because statistics tell me that I've only got a 50% chance of surviving beyond 5 years. Oh. My. Goodness? So off I went to consult an oncologist and my anxiety levels definitely decreased after the first consultation. Key learning points:
Despite being a Stage 3, my histology report was as good as it could have been. The spread was contained and surgery removed everything, and the wash of the abdomen revealed no free-floating cancer cells which technically meant that I'm cancer-free! Chemotherapy in my case was more of a pre-emptive measure. They were 6 sessions, each 3 weeks apart and it sounded really doable but I sorely underestimated how lethargic it'd make me feel. By the 4th session, walking from the bedroom to the kitchen utterly exhausted me. Admittedly, there were a lot of frustrations at my physical limitations and the emotional strain of having to deal with well-meaning (a choice was made to believe in the good of people) but badly worded messages from those around. It was a period of realisation that a regular person has almost no knowledge on how to talk to a patient.
And as strange as it might sound, losing hair was never a problem for me. Being able to go to bed immediately after a shower was a joy, and the discomfort of others looking at my baldness? I'd simply smile. My physical state sort of fueled a mission that I was out on too - to show that a cancer patient doesn't call for your pity. Please, just treat us like you would to any normal person. We are not any lesser.
Phase 2: Meningioma (brain tumour)
Everything happens for a reason and I'm thankful that my cancer led us to an incidental discovery of a brain tumour during the pre-chemo scans. It was decided to keep my brain situation under observation while we addressed my cancer situation as the tumour looked benign and I've presented no symptoms. I've lived life very normally thus far; travelling, diving, working, and had recently started on my MBA. Fast-forward to 2021 when those of us in the 30s are up for Covid-19 vaccinations, a brain MRI showed that it has grown 1cm in the past 3 years. Off to the neurosurgeon I went and he basically gave me 2 options. Keep the tumour but face exponential stroke risk after I'm 40, or go for surgery that puts me at a 5% chance of full left-half body paralysis. It was a no-brainer and I immediately opted for surgery. Why risk getting a stroke when I've survived cancer and there's a 95% chance that I'll be alright?
The first thing I checked after waking up from the craniotomy was to wiggle my toes. Alright, they are moving so mobility is secured. My optimism unfortunately took a beating to the face in the next moment when I realised that I couldn't raise my left arm at all and there was facial numbness.
I remember having a split second of panic before settling into my ICU bed even more comfortably. "It is what it is, and we'll solve those problems 1 at a time.", I thought to myself. A 1 week stay turned into a month-long hospitalisation in the heart of a pandemic. Physiotherapy sessions ran twice daily and I had built a routine by the time I was transferred to the general ward. Wake up, breakfast with apples to exercise my jaw and facial muscles, meds (and Keppra made me really sleepy, no idea why), nap, rehab, lunch and facial exercises, meds, rehab, dinner and facial exercises, and a video call with the family who couldn't visit me. Things were intense because I was resolute and had a game plan - I need to be independent enough to go home before my birthday. And so I did. Left the hospital with pretty much only 1 thing to work on - my left hand.
The months that followed were a constant stream of outpatient advanced robotics therapy, disappointment with my progress and a true emotional rollercoaster. My dexterity was taken for granted my entire life and I am now handicapped by my lack of fine motor skills. Words can barely describe how inferior, demoralised and miserable I was. And because people want to be encouraging but failed to consider the perspective of the patient, this particular sentence really triggered, and continues to trigger -> It's okay, you're not left-handed anyway.
It took so much of my inner peace to not explode and be angry at the world.
I started to talk about Empathy even more. Wrote lengthy posts about how we can be better supports to others. Much like how I decided to open up about the topic of illness 5 years ago and break the taboo, I'm now so ready to play my small role in creating better support for our communities.
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