Stephen Says: A dying man’s will to leave his mark through video messages

Photo: National University Cancer Institute, Singapore

In the last weeks of his life, entrepreneur Stephen Giam put his final thoughts in a series of 19 short YouTube videos entitled Stephen Says.

Speaking from his hospital bed, Giam addressed topics such as coping with cancer and how to support sick patients, in hopes that his experiences would be of help to terminally ill patients, their families and healthcare workers.

The videos are by turns poignant (“You can tell I feel like s***. What I’d like you to do is hold my hand, tell me I’m here with you”), funny (“You tell people you are dying, you got cancer, suddenly all the taxi drivers become first class doctors”) and almost pleading (“Tolerate me because I cannot be logical anymore”).

Giam, a father of four teenage children, passed away on 26 September shortly before his 52nd birthday, after battling stage four bile duct cancer for almost a year. Giam’s family declined to be interviewed for this story.

But it isn’t just in the virtual world that Giam had an impact on people. His palliative care physicians Doctor Jamie Zhou and Doctor Noreen Chan, of the National University Cancer Institute, Singapore (NCIS) were also moved by Giam’s final journey.

Palliative care involves care for the terminally ill and their families.

Zhou told Yahoo Singapore that she began treating Giam in April, all the way till his passing. “When he first met me, he was trying to be brave. He’s a very extroverted person, and copes (by using) humour. He’s very real, he doesn’t hold back and he will just say it as it is.”

She added, “But as we knew each other a bit better, he started to show a more vulnerable side. He started to be very honest with his fear, and to share a bit more about his life and his feelings.”

Giam, who ran his own marketing consultancy firm, confessed to this in one of the videos, “Show people I’m okay. Sometimes bulls*** lah. Inside scared, but outside garang (fearless) lah. Like hero.”

In an article for a medical journal, Zhou and Chan wrote of how Giam’s need to control his situation led to several “fractious encounters” with hospital staff. Asked to elaborate, Chan said, “Let’s just say he had his opinions about how things should be.”

The palliative care journey

Doctor Noreen Chan (left), head and senior consultant of the Division of Palliative Care in NCIS, and associate consultant Doctor Jamie Zhou. Photo: Nicholas Yong

Zhou is an associate consultant at the Division of Palliative Care in NCIS, while Chan is its head. The team of doctors and nurses at the Division collectively care for about 30-40 patients across National University Hospital at any one time, often working alongside their primary physicians.

There are no typical cases, said Zhou and Chan, and each patient and his or her family have different psychological, emotional and spiritual concerns.

Zhou explained, “We focus more on trying to improve their quality of life. This includes understanding the complexities of the medical condition, the potential complications that it can involve.”

Chan said, “Having to face terminal illness is like being in a country with no map – you don’t speak the language, you don’t know the culture, you just have to grope your way around and hopefully find your way through. You can think of us as guides. We’re like the bespoke tour guides: we go where you are.

“We deal with a phase of life that is very unique, even though it is universal for all of us, so it’s really meeting people where they are, and trying to create the conditions for patients to live the best and most meaningful life that they can.”

Leaving a legacy

It was on 30 May that Stephen first broached the idea of writing a book called “I am dying, so are you”. He had planned it all out in a notebook and his first chapter, recalled Zhou with a smile, consisted entirely of the F-word.

Told in August that his condition had taken a turn for the worse and that his time was running short, Giam told Zhou in typical fashion, “Oh great, now my book will have to become just a booklet.”

But he did not give up, filming the videos that he hoped would be his lasting legacy.

Asked what she had learned from Giam, Zhou responded, “That fear is very normal. He’s a very garang kind of guy, but even a garang guy, he had panic attacks whenever there was a mention of dates or timings, when he felt he was losing time. Even hearing his watch tick, he started to get panic attacks.”

As his time drew closer, Giam was more accepting of the inevitable.

Chan said, “In the beginning, he never would have admitted that he felt fear. One reason that the videos are so impactful is that he’s very honest, he said that he also felt scared, but it’s okay. And it’s difficult if you are a person who’s normally very strong and self sufficient to admit that to yourself, or anyone else.”

The day of Stephen’s passing

Stephen Giam led an active lifestyle before he took ill. Photo: National University Cancer Institute, Singapore

Zhou was present as Giam took his final breath, and also attended his wake, where Giam’s expressed desires for a white coffin, red carnations and beer to be served to guests were all met.

Zhou describes the privilege of being present at a patient’s death as a “very sacred moment”. She said, “It’s like a story book where you come to an end, and you savour it. You think to yourself: what did this story teach me?”

Asked if it was difficult to maintain a professional front in the face of a patient’s suffering, Zhou recalled being emotionally affected by a very young patient while she was still a trainee.

“Dr Chan told me that (it’s about) learning how to put one foot in the waves, and one foot on dry land, and not to be swept away by the current. If we put two feet on dry land, we are no good to them either, and if we put both feet (in the waves), we get swept away.”