In 2005, he was diagnosed with stage 3 nasopharyngeal carcinoma (NPC) involving his nose.

While he had the support of his family and friends, there were times when Jim Kow wished he could speak to a fellow cancer patient – someone who could intimately understand the journey he was undergoing.

At that time, there was no support group for NPC patients and survivors.

Says Kow: “I learnt the hard way; my battle was like walking alone through a dark tunnel, not knowing what was in it or how long the tunnel was.

“I was hoping for some light or someone who could hold a torch to guide me on what was ahead, but I ended up only talking to God.”

Having undergone this tough journey, Kow, who is now in remission, wanted to help new cancer patients so that they need not feel so alone in their battle against the disease.

“I have gone down the path they are going through now, I know their fears and what’s in their mind. I know how to comfort them and help them to build confidence to battle cancer,” he says.

As a Lions Club of Kuala Lumpur Sentul member, Kow, along with his wife Annie Chai and other cancer survivor friends, set up the Cancer Survivor Support Group (CSSG) under the auspices of the non-governmental organisation.

Since the group was formed in 2011, they have had about 80 survivors and caregivers join them. Some had fought the good battle and lost, leaving them with about 40 survivors and caregivers at the moment.

While the group welcomes all cancer patients and survivors, more than half of their members have or had NPC, making it one of the largest active NPC support groups in Malaysia.

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National badminton player Datuk Lee Chong Wei’s diagnosis of NPC, which is the fourth most common cancer in Malaysia. brought it back into the spotlight. — ART CHEN/The Star

For survivors and caregivers

The members usually meet at Kow’s home in USJ, Selangor, once a month as it provides a more comfortable, relaxed and friendly environment in which to share.

The group’s objectives are to share experience, knowledge, fears and thoughts between the cancer survivors and patients, and assist the patients in their treatment journey or choices.

Occasionally, healthcare professionals are invited to come and give informal talks, as well as to answer some of their questions and concerns.

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Chai (left) and Kow at their home where the group meets once a month.

The sharing of post-treatment concerns like recovery period, types of suitable food or supplements; traditional or complementary medicine; the need for scans; types of exercise; and lifestyle changes; are very common.

The importance of palliative care and cancer research is also discussed.

The group also welcomes caregivers, irrespective of whether they are spouses of survivors or just someone who would like to share their experiences.

As Chai not only took care of Kow, but also both her parents, father-in-law, cousin and many of the female members of the group, she has plenty of experience in cancer caregiving and is most willing to provide any advice or assistance needed to cancer caregivers and patients.

Tina Woon, who was the caregiver for her husband and was referred from the National Cancer Society of Malaysia to the group, says: “Jim and Annie appeared in our time of need and gave us mental and spiritual support during my husband’s treatment.

“We found the strength to continue the treatment journey from the real experiences shared by them. They are our friends in need as a cancer patient and our friends indeed as a caregiver.”

Living your best life

NPC is usually treated with concurrent radiotherapy and chemotherapy.

This treatment can be tough to many as it involves radiation to the head and neck area, which affects the mouth, salivary glands, neck and jaw.

Some of the common side effects include ulcers in the mouth or tongue, limited saliva that results in poor appetite, severe pain in the throat with difficulty in swallowing, and post-treatment neck and jaw stiffness.

These are painful changes to the body, but with proper guidance from peers, they can be managed.

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The group also helps to raise funds for various cancer-related causes, including cancer research, as seen here by their donation to Cancer Research Malaysia.

NPC survivor Henry Wong found the CSSG very important in helping him to manage his initial fears after his cancer treatment.

I got very useful feedback for all my questions and concerns from the other members in the group, he says, encouraging all NPC patients to join a support group.

NPC has a good survival rate, especially if the cancer is diagnosed at the early stages of the disease (stage 1 or 2). Even later stage cases can have good outcomes.

Kow says: “I am living proof, having survived stage 3 NPC for 13 years now, and am looking forward to celebrate my 15 years survival in 2020.”

Aside from him, the group also has two other NPC survivors who have lived more than 12 years since their cancer diagnosis, including Michael Gan, a stage 4 survivor.

Gan’s motto is “I’m the chosen one; I chose how to live my life and my choice is to be happy always”.

Kow agrees that this is the type of lifestyle change survivors need to have and all survivors must remember that the journey of survivorship (life after cancer) is only as great as the survivor themselves want it to be.

For example, former bodybuilder Jeffery Lim was diagnosed with stage 3 NPC at the age of 32.

Not only does he want to prove that cancer can be curable, he also wants to prove that anything is possible with the proper focus.

Having survived 14 years now, Lim has shown that he can be stronger than before, running marathons and twice completing Ironman triathlons.

Despite being a small and little known support group, Lions Club of KL Sentul president Low Seong Lim is glad that this signature community service project of the club has quietly helped so many cancer patients, congratulating Kow and his team for their dedication over the past seven years.

The group will celebrate their seventh anniversary next month.

Those who wish to learn more about the CSSG can email Jim Kow at jim_kow@yahoo.com or message 012-2529392, or view their activities on their Facebook page.