To build a greater community of support for brain tumour patients and caregivers in the region, we have launched our BTSS Facebook Community Group. This group encourages frequent interaction and sharing as a community. Members get a space to ask questions, get feedback, offer support, celebrate successes and connect through social sharing threads.
For the safety and assurance of everyone within this closed Facebook group. we would require you to complete a simple questionnaire before admitting you into the group. The group rules are also a guide to help maintain a positive and enriching environment for our community.
This morning, I missed you and went to our what’s app chat where your motto “Live Life to the Fullest” greeted me. I was greatly comforted to remember how full you had lived your life although you left us too soon.
Many feel sad that your fight against cancer had come to naught. However, when I think about it, the battle for our lives, whether you are a cancer patient or healthy person, is a fight that everyone will eventually lose. It is therefore a fallacy to hold on to the motto of “Live Life to the Longest” when we cannot control when our time would be up. Perhaps, because of our fear of death, most cancer patients and caregivers tend to focus on delaying the eventual with the goal of “Living Life to the Longest”.
However, as one who works and lives in a community of brain tumour patients, I see the real fight as not overcoming cancer to “Live Life to the Longest”, but overcoming the fear of cancer and death to “Live Life to the Fullest”. Shawn, I am so proud that while you responsibly sought treatments, you never abandoned your life motto. I could tell as every time I interacted with you, you were Full of Gratitude, Hope and Affection.
You were always ready to thank those who helped you. What’s more, you never failed to follow up with an affirmation of the person…. Your voice “wow, I really have to learn from you.” Still rings in my ear and that of others whom you had appreciated.
My mind still holds images of you at our last 2 Brainy Car Rallies. You were undergoing chemotherapy then yet you were determined to champion the projects to bring smiles to our children with brain tumours. You never once complained or asked for a stepped down role. Instead, you were grateful to be able to do something to bring cheer to the children whom you felt so much compassion for.
You were wise not to hold on to the hope of overcoming cancer as your only anchor but you created hope to look forward to every day. Like enjoying meals with your loved ones and friends, planning a trip out alone on your wheelchair, buying presents and celebrating the birthdays of your dear ones. I fondly recall how you expressed hope to attend my daughter’s wedding even though it would still be a long way off.
As a hopeful patient, you made it a more joyful and meaningful for your family and friends to be with you. The opposite of hope is despair and patients who are full of despair often make the journeys tough and sad for their caregivers and themselves. This was never you although you had sometimes expressed worry and fear about not being able to recover.
You had always been generous with your affection, which you especially expressed in your last months. I recall how affectionately you always spoke of Marilyn, and your siblings as we went shopping to help you buy gifts that they would appreciate.
I felt your affection when you insisted on delivering the BTSS Birthday Blessing to me although you were in a wheelchair. I knew that you wanted to express how much you value me. In fact, from my interactions with you, I could see that you were a loyal friend to many and had never hesitated to extend help to those who needed your support.
Shawn, we are full of gratitude to you for touching so many hearts and lives through our four Brain Car Rallies. Thanks to you, BTSS managed to raise the funds we really needed in our early years.
We are grateful that you showed us how to be full of hope. It is not easy for cancer patients to put aside their fears to wake up every morning with a smile and confidence to face the world and embrace life. Shawn, you set the example for us by refusing to step back or be beaten. You fought hard and won the battle to live your best life every day until your very last breath. We are forever indebted to you for your contributions and shining example.
Because we are full of affection for you, it is now painful for us to say goodbye. We miss you dearly and grieve your passing. But we will see you in Heaven one day and until then, when we remember you, we will remember to “Live Life to the Fullest”.
Your friend & President, BTSS
PS: I have adopted “Live Life to the Fullest” as my What’s App status to honour the memory of Shawn Low. I urge every person who has been touched by Shawn Low to do likewise till his first month anniversary on 22 April 2021.
About this time last year, we abruptly cancelled our Chinese New Year support group meeting and customary “Lohei”. In addition, our 6th Founder’s Day celebration scheduled in March 2020 and Brainy Car Rally in Nov 2020 were scrapped.
In response, BTSS very quickly instituted our ZOOM support group meetings under the leadership of committee member, Peter Koh. With the assistance of volunteers Katherine Chin and William Seah, our Support Group Team has been able to reach out to many new members and refer them to receive practical assistance through BTSS counselling and welfare programmes.
BTSS worked closely with NCSS to distribute COVID-19 care packages and masks donated by thoughtful members of our community. We also moved our Medical Talks online, covering topics like ‘Brain Tumours and COVID-19’ and ‘Side Effects of BT Treatments’. To maintain engagement with our community, we started BTSS Birthday Blessings under the leadership of committee member, Nam, who is assisted by volunteer William Seah.
With our Fund Raising severely affected by the pandemic, BTSS launched a digital campaign based on the inspiring life story of our committee member, Shawn Low, on Facebook and YouTube. The funds raised are still modest and we appreciate your kind support to share our campaign and donate generously towards our establishment and programmes.
Several community events were facilitated through ZOOM. Towards the end of 2020, we were able to resume small group events such as the local tours while our youths also organised 2 small group outings. We are planning to organise some interesting small group events in March 2021 in celebration of our 7th Founder’s Day. Watch out for more details!
The greatest impact of COVID-19 restrictions has been on those who are newly diagnosed, those undergoing active treatments and facing relapses. Thanks to BTSS WhatsApp groups, these members have been able to receive peer support in their toughest times. To encourage and facilitate even more discussion and interaction, BTSS will activate a BTSS Facebook Community Group in April 2021.
Behind the scenes in 2020, BTSS Senior Manager, Jackie Lee, had been busy working with the EXCO to set-up our financial and governance systems. Jackie has requested to step down as an employee of BTSS on 28 Feb 2021 to focus her attention on her family. Thankfully, Jackie will remain with BTSS as an EXCO member. The EXCO has decided to split her portfolio between 2 new executives. Ms Crystal Tan is currently on a WSG Career Trial with us and will join as a Finance and Governance Executive on a part-time work arrangement in March. Our new Programme Executive, Ms Janie Joseph, will join BTSS full-time on 15 March 2021. In a nutshell, Crystal will process all members’ grant applications and claims while Janie will be point of liaison for members, volunteers and partners for BTSS online and in-person events and programmes.
The mission of BTSS has always been ‘Connecting to Befriend, Enable and Empower’ so that we can walk with every brain tumour patient and family at every stage of their brain tumour journey. With increased manpower capacity, BTSS is looking forward to adding more value to our members and supporters through better outreach and governance.
In closing, although it was a challenging disease that has brought us together, we have built a meaningful supportive community that has been conferred the Inspirational Patient Group Award by Singapore Health in 2020. Indeed, having a brain tumour does not limit our capacities to live life well, as many in our community have shown from their inspiring examples. I encourage our amazing BTSS community to grow in our core values of Benevolence, Thoughtfulness, Spiritedness and Service to be more and do more for ourselves, our families, our community and country.