Fast & brainy way to raise funds

He never thought he would ever ride in a sports car since it was "not compatible with his age".

But Mr William Loh found himself enjoying his first ride in a Lamborghini together with 39 caregivers and brain tumour patients taking part in the Brainy Car Rally yesterday.

"It was super fast and there were many passers-by taking pictures. It was a very unique experience," the 58-year-old former caregiver said.

He lost his daughter to brain tumour in June.

Organised by Brain Tumour Society (Singapore) (BTSS), the event saw a turnout of about 300 people, with many family members of brain tumour sufferers signing up to be part of the organisation.

Brain tumour patients and caregivers got to ride in cars sponsored by the Lamborghini Club as part of the fund-raising event to commemorate Brain Tumour Awareness Day.

It is only this year that caregivers and patients have an avenue to get together to share their experiences and have a support group. And it is all thanks to BTSS founder Melissa Lim, who is a brain tumour patient.

Ms Lim, who is in her 40s, was first diagnosed with acoustic neuroma in 2003. It is usually a slow-growing tumour that develops on the nerve that connects the ear to the brain.

After losing her mother to glioblastoma multiforme, a common and lethal form of brain cancer in adults, her own diagnosis was hard to swallow. The BTSS president recalled the day she bolted out of the clinic after hearing the news.

"I just told the doctor 'I'm going' even before he could finish. I had lost my mum and it had been a horrifying journey. I didn't know how to handle the news," said Ms Lim, a freelance corporate trainer.

With six months to operate on a 3.3cm-wide tumour, she began looking for an experienced neurosurgeon. But with little knowledge about the condition, it was a "very perplexing search".

She eventually decided on her surgeon, Dr Chumpon Chantharakulpongsa, who was referred by her distant cousin and mother-in-law.

Ms Lim was not prepared for the after effects of the 16-hour operation - she woke up with double vision, excruciating pain in her body and a "drooping face".

As the tumour was stuck firmly to her facial nerve, removing it damaged the latter slightly, and the right side of her face was consequently paralysed. She had to work thereafter with a speech therapist to regain her speech and eating abilities.

"I wasn't planning for this. If I had known this was going to happen after the surgery, I wouldn't have gone for it so willingly," she said.

Her recovery hit a roadblock when she developed complications soon after the operation.

She recounted: "A nurse knew I was troubled. She told me she had seen many cases of people with the same complications heal. She stayed by my bedside and kept assuring me, so I consented to the treatment."

Another nurse told Ms Lim of brain tumour patients who have gone on to live meaningful lives and it made her more hopeful about her recovery.

"I needed to hear the positive outcomes and that people have gone through the same thing as I did," Ms Lim added.

A month later, she returned to work. But it took six months for her face to look normal again.

She later became part of an informal brain tumour support group - the first time she met many other brain tumour patients.

"There was so much fun. We talked about the screws in our heads and the missing pieces of our skulls. It was a nice experience," said Ms Lim, a mother of two. She has since fully recovered from her condition.

Attending the First World Summit of Brain Tumour Advocates last year eventually led her to apply to register the Brain Tumour Society (Singapore) as an official group in January.

"I was astounded by the lack of support in Singapore. I felt that there was so much more we could do in Singapore for brain tumour patients and caregivers," she said.

Today, the group has 35 members and a medical advisory panel with two neurosurgeons and a neuro-oncologist. They meet every second Saturday of the month at Singapore General Hospital's Ward 52B.

"It is only in 49 years of Singapore history that we finally have a group for the brain tumour community, so there is a lot of catching up to do," Ms Lim said.

Mr Loh is one former caregiver who is thankful to Ms Lim for setting up the group.

"With a group of brain tumour survivors and caregivers who have lost their loved ones, we do not feel alone. We meet all these people who share (their experiences) and we learn how to cope. They understand what we are going through," he says.

fjieying@sph.com.sg

This article was first published on November 2, 2014.
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