In loving memory of the Late Patricia Shanwa Chai Khoon Heong.
#MyMotherTheSurvivor
Last year, on the 18th of February, my mom and I would come to find out her biopsy results: stage four lung cancer.
It is as scary as it sounds. Yet, I want this article to share hope, not fear.
During this journey, mom held greatly onto hope and focused on surviving cancer. This article is an extension of that legacy of hope from her, by talking about her story. The way she maintained her hopeful outlook against a sea of unknown, fear and pain is her statement that there is dignity and empowerment in this fight.
The interesting thing about dark times is that hope always seems to manifest as a collateral. I want to remember my mother as a survivor. I want to remember her strength, vulnerability, dignity and love in this critical part of life. Whether twenty-two days or five years, she survived for as long as she fought. Her last week in the intensive care unit surprised the oncologist - she survived longer than they predicted. She fought until the end, and held on hope no matter what. That is a survivor.
Lung cancer is one of the more elusive cancers to tackle in the sense that it is usually asymptomatic until the late stages. According to Cancer Research UK, almost 5 out of 100 people diagnosed with stage four lung cancer survive their cancer for five years or more after they’re diagnosed. According to the Malaysia National Cancer Registry Report, in Malaysia, almost 95% of lung cancer cases were detected at late stages (stages III and IV).
My mom had her first prognosis in UMSC Hospital Malaysia and was later fated to cross paths with Beacon Hospital, one of the top hospitals with accessible, high quality cancer care. This encounter was a result of a conversation between her and my auntie who came across the story of a stage four cancer survivor from the hospital. The knowledge and the community of survivors she was surrounded with were to become the fire that continuously lit that beacon of hope. She eventually received her concluding diagnosis in Beacon and began her treatment journey.
I wanted to take a moment to shine a light on the work that Beacon Hospital does, and how they stay true to their name “Beacon”- a name chosen by their founder, Mary Chen, to be the light guiding patients and their family through the darkness. Together with my mother’s story at Beacon and the hospital’s founding ethos, this brings us to positing awareness of this year’s World Cancer Day campaign theme: #CloseTheCareGap.
“While patients come to terms with the bad news, they are immediately faced with other burdens to carry such as the mounting cost of treatment and the long-term commitment that comes with it.
The reality is that cancer treatment burns holes in people’s pockets and digs financial graves for those already living in poverty.
Beacon Hospital has been operating with a mission to turn things around. With the aim of providing treatment to its patients – regardless of ailment, with an amount they can afford. Despite having high-end medical technology, Mary realised its insignificance if the poor couldn’t afford such treatments.” - Wikiimpact.com on Mary Chen.
Mama actually did meet Mary during her stay at Beacon. She told me about how this happened at the hospital’s chapel when she went to pray. Such poetic serendipity in this chaos that is life.
The impact of a medical diagnosis such as cancer extends beyond the hospital and also reaches into the homes and households of the patient and their families. When it comes to closing the care gap and care inequality, it also refers to the surrounding environment and medical, emotional and physical care structures available to support the patient.
“Challenges of cancer patients depend on where they are diagnosed.” - EU Health (@Eu_Health)
The accessibility, availability and knowledge of cancer care of mama’s health and in and around what would be a new life of hospital trips, at-home care, and social changes that existed were crucial to sowing the seeds of hope and strength in both mine and my mother’s hearts.
“There is always a way.” Mom said.
One of the most comforting moments I remember during the process of being in the hospital was when the lead consultant of the palliative care department spoke to me and wanted to remind me that I would have access to emotional and mental help and guidance where needed. I also remember seeing the banners on palliative care services being available (with a cost, indeed, but a cost that was manageable should insurance not have covered it) that would help mom and I at home in the medium-long term as she’d go through her chemotherapy, radiotherapy and immunotherapy treatments. The hospital’s care spoke volumes, and mom had always praised the availability of care; their kindness and her peacefulness that existed in Beacon.
Throughout the whole journey, mama portrayed to me that she was confident and optimistic in her treatment. Most of it was a mother’s strength towards her daughter, but I know a crucial part of it was also because of her experience of care. I remember her telling me that she feels encouraged to be surrounded by hospital care. This was during one of our conversations when I expressed my worry and sadness that she would feel alone in the hospital. Whether it was a mother’s strength or not, she soothed me with her words, and instilled in me confidence and courage for her.
At the root of it all, mom said this: whatever it was, she wanted to maintain her quality of life - she wanted to have her mobility; her independence; and her consciousness. She had always maintained a dignified life and this would always be the case.
“One size doesn’t fit all, and every challenge demands a different solution. Equity is about giving everyone what they need to bring them up to the same level.” - World Cancer Day Action Toolkit
Perhaps, you may be wondering, what role could we conduct ourselves in amongst all this?
There are so many ways in which we can contribute to this larger fight against cancer and its prevention, from donations and fundraising to advocacy.
Something as brief as a conversation between my mom and my auntie, led my mom on a path to wholehearted care and treatment from Beacon. Perhaps, as the global campaign continues against the inequities of cancer care, there are actionable steps that the community can take to support the global campaign: sharing stories and platforming the voices of survivors; raising awareness and platforming precise and correct knowledge; and even small acts of care and acknowledgement for people in your immediate vicinity affected would go a long way. By engaging and equipping with the knowledge, we then are able to recognise what inequities exist in cancer care and the distribution of resources.
“Where you live. Who you are. Where you come from. What you do. Who you love. These are called the social determinants of health, and they represent the many factors that may lead to inequities. They can unfairly stand between you and cancer prevention, diagnosis and treatment.” - World Cancer Day Action Toolkit
The way mom maintained her hopeful outlook against a sea of unknown, fear and pain is her statement that there is dignity and empowerment in this fight — and this hope, dignity and empowerment should be extended to all corners of the globe.
Although mama is not here today to tell her story, I wanted to sign-off this post with my mother’s own words. She posted this Facebook post, detailing out her journey at the time. This was about 16 days after she was admitted into hospital, and 22 days before she passed away:
Hi my facebook friends! Some of you might have been wandering what have i been doing , missing in action
for such a long time… 3 months?? Or maybe you didn’t even notice
Today, I’m in a good mood and my body is in good condition too! To be able to type and write!
Since Dec 20th 2021 onwards
while I was still in London, my health was sliding downhill at a quick speed!!!! With intence and excruciating pain on my sacrum. I decided to come back to KL on 20 Jan, home quarantine for 7 days and went to see a brain and spine specialist. Doctor immediate ordered for a MRI on my sacrum and suspected scaitica nerve. 4 days when MRI report was ready, Doctor said it is not a sactica nerve??? What? Suspected something much more serious called “multiple myelona”!! Urgently arrange for a PET scan (that was on the 03/02). When PET scan results were ready on 07/02, Doctor said “Oh, I don’t have to operate on your spine I asked the spine specialist 3 times, “are you sure, confirmed it it not myelona?? ”Immediatly, I pray to God, thanking him that It was not myeloma!! Can’t wait to get out of the clinic to tell my daughter!
But, it is not all good news. Doctor said that the lesions from the lungs has metastasised to other parts of my body. My case was then immediately forwarded to an oncologist as a biospy is required.
Since I was admitted to the hospital on the 14/02, I got back some “human” daily life back. Able to have doctor to manange my pain and my oncologist to do test and reserach on my cancerous cells. I now have God, Oncologist and a Pain Soecialist looking after me, I fill relieved and blessed. I was diagnosed with stage 4 Lung Cancer. Am
still in hospital doing treatments but can eat, smile and be positive. Looking forward for my daughter to come home in a few more days.
Pray to God for some few more
good and painless years as I wish to build many many more beautiful memories with her (my guardian angel) my family and friends! I am sure God will grant me this wish!
Don’t be sad but “Acknowledge, Accept and Act” and be positive for me!
Pray for me and send me as many blessings as possible!
If you may want to speak
with me, please whataapp/wechat me and i’ll try my best to keep you posted of my condition. PLEASE DO NOT CALL ME ON THE PHONE AS I AM IN AND OUT OF THERAPIES/SCANNING MAYBE.
Why I write this message is because I wish to make my friends aware that things can happened so fast without you realising and all of the sudden you health has gone downhill so quickly that you can’t pull a brake on it.
Mine started of as a mere scatica
nerve pain which i did even notice the the pain.
Listen and speak closely with your body as often as possible if the signal is fast, fhe cure is there!
Will sure to keep my friends posted when i am in the right condition in the coming future.
God Bless