In June 2014, Choo Mei Sze, then 27, was at a great point in her life.
She was in the midst of hosting The Influencer, an online reality show, which she had conceptualised and helped develop; she was finalising her doctorate thesis in developmental psychology at the University of Hawaii at Manoa, United States; she earned enough to indulge in her love of food and travel; and she had great friends, a supportive family and a loving boyfriend.
The only blip in this happy existence was her ongoing bouts of diarrhoea.
For the past year, she had been suffering from monthly episodes of diarrhoea, which she attributed to her readjustment to Malaysian food after having spent six years studying in the US.
But when her last run of loose stools lasted for three weeks, her father insisted that she go see a gastroenterologist.
At the consultation in a private hospital, the doctor was going to let her go with some antibiotics, but her father insisted that she get an endoscopy.
That insistence might have saved her life.
“There were four other people with me for the scope, but I was the only one they asked to stay back,” recalls Choo.
She ended up waiting three more hours after her endoscopy, and was rather impatient to avoid the usual evening city traffic jam by the end of it.
But then, the doctor came in with a frown on his face and told her, “I’m so sorry, we found a tumour in your rectum.”
The news was so unexpected that much of what he said to her after that went over her head, although she remembers biopsies and colostomies being mentioned.
“I cried for four days straight after that,” she remembers.
And when the biopsy results came back four days later, they confirmed that she had rectal cancer.
Making it work
Choo’s case is a rare one as most colorectal cancer patients in Malaysia are aged 40 and above, nor does she have a family history of colorectal cancer, which is one of the risk factors for the disease.
Fortunately for her, unlike many cancer patients in Malaysia, her cancer was diagnosed at an early stage – stage 2.
Says Choo: “Thank goodness it didn’t look like it had spread past the organ walls.”
Getting the biopsy results was the stimulus for her to stop crying and start fighting her cancer.
Time was of the essence as the cancer cells could spread beyond the rectum at any moment, making her condition more difficult to treat.
“I met the surgeon and he said the only way was to remove the tumour because it looked like it hadn’t spread.”
After getting a second opinion, which confirmed her diagnosis and treatment plan, Choo scheduled the operation that would remove her entire rectum and a small part of her large intestine, or colon.
“Within 10 days of the scope, I went for the first surgery,” she says.
Unfortunately, the procedure could not be fully completed as her blood pressure had dropped too much after four-and-a-half hours in the operating theatre.
Instead of connecting her remaining colon directly to her anus, the surgeon had to perform a colostomy, where one end of her colon was connected to an opening in her abdomen in order to let her faeces exit her body into a colostomy bag.
Having to wear the colostomy bag for six weeks before her second surgery was another huge hurdle for her.
“I had sensitive skin around the wound, and the bag sometimes wouldn’t stick and the faeces went everywhere on the bed or my clothes,” she shares.
There was one night during the first fortnight of wearing the colostomy bag when she and her boyfriend tried and failed to put her colostomy bag on three times. “I broke down and cried then,” she says.
But that was another turning point for Choo. “I told myself that I’m going to be stronger than I was yesterday; that was another round of acceptance.”
She adds: “One of the reasons I had to stop crying is because I had to be strong for my dad and boyfriend.
“My mum was the one who was very strong for me; she was my centre.”
But it wasn’t just the physical and emotional aspects of the cancer experience Choo had to deal with; there was also the issue of finance.
“The truth is, we were not prepared for this. When the surgeon told us how much the surgery cost, we were shocked,” she says.
While she had a five-figure monthly income and some savings put aside, it was insufficient to pay her bills.
Fortunately, she had bought a medical insurance policy from a friend a couple of years ago.
But instead of lessening her worries, Choo had another shock in store.
“We discovered my policy had lapsed because my agent had not remitted my payments,” she shares.
With her insurance agent not answering her calls, she and her boyfriend had to track down his supervisor and seek assistance from Bank Negara in order to sort out her policy and fight for her claim.
But before that, Choo still had to put down a deposit of RM24,000 for her first surgery, with the final cost coming up to RM42,000.
She shares that her mother used her credit card to help with these payments as her own card had too low a limit.
In the end, with the second surgery, her total bill came to about RM70,000.
“My relatives were very generous, they helped to pay for my scans, which cost about RM4,000, and scopes, which are around RM3,500 each,” she says.
Fortunately, although she had no expectations of getting the insurance money, it came through in the end, covering her medical expenses up to her second surgery.
However, because she is at risk for a recurrence of the cancer, she needs to go for follow-up consultations and a colonoscope once every six months, which are at her own expense.
This is why she feels so strongly about insurance now.
“I can’t imagine if you get cancer and have no money; you have to go to a government hospital.
“The doctors in government hospitals are good, but you might have to wait longer for the operation and if the cancer spreads … good luck to you!” Choo says.
“So, between spending money on clothes or alcohol or cigarettes, just take that money, pay for insurance and get yourself protected.”
Choo Mei Sze wants to help people share their stories
Like most cancer patients, Choo Mei Sze, 29, initially did not want to tell people she had rectal cancer.
“I was a typical Asian, I didn’t want anyone to know, I didn’t want them to judge me or to pity me.
“I also felt that they would see me as weak,” she shares, adding that her relatives had also advised her parents against letting anyone know she had cancer.
Only a small circle of family and close friends knew that she had been diagnosed with the big C.
But at the same time, she really wanted to talk to a fellow young cancer patient or survivor who had gone through what she was now experiencing, especially wearing a colostomy bag.
“I wanted to find someone my age to talk to, but there was no one,” she shares.
The vast majority of those diagnosed with colorectal cancer tend to be middle-aged and older, and in a “different place in life”, she says.
This factor played a part in Choo’s decision to finally blog about her cancer journey around three months after her second and final surgery.
“So many of my friends told me, ‘You have a story, you have to share it,’” she says.
“I think they saw a lot of strength in me, and wanted me to share my story and give other people hope.”
After hearing the same comments several times, Choo finally decided to share her experience.
With no expectations, she put up a blogpost in January 2015. And it went viral.
“The amount of email messages was tremendous. Because of that, I felt people found inspiration and motivation (through my story) – not just patients and survivors, but people in general,” she says.
Due to this overwhelming response, Choo started her #ShareStrength project last August, where she hopes to help people suffering from any kind of disease share their stories in order to inspire their fellow patients.
Based on her own experience, she says that sharing stories can really help patients who feel alone and just want to talk to someone else who has gone through what they are now going through.
She says the idea is: “I just want to know how you got through it, and how I can get through it.”
This project has led to a five-episode web series called A New Norm, done in partnership with talent management company Suppagood Talents, which was launched on Jan 28.
She is also working with insurance company AXA Affin Life to help raise funds for the National Cancer Society of Malaysia (see footnote in main story).
While she now wears many hats as the owner of a social media strategy company, emcee, magazine columnist and PhD student, Choo’s ambition has always been to help people, and her cancer “nightmare” may now be actually helping her fulfil her dream.
This article is courtesy of AXA Affin Life. Join AXA Affin Life and Choo Mei Sze in empowering all Malaysians to stand up to cancer with confidence. Visit 110cancercare.com, share the message and RM1 will be donated to the National Cancer Society of Malaysia for their Cancer Information System (CIS), which will provide emotional and mental support for cancer patients. #AXAstandsuptocancer