Living a triumphant life despite cancer

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Social activist takes pain, hardship as fuel to strengthen willpower to fight on not only for herself, but also for others

1. Dayang Mariani receiving her ‘Penggiat Sosial Wanita (Women’s Social Worker) Award 2018’ from Chief Minister Datuk Patinggi Abang Johari Tun Openg.

LIKE a wounded soldier, Datin Dayang Mariani Abang Zain has emerged from the pain and anguish of yesterday, and battles on to live a life that is fulfilling and meaningful for her and the community.

The woman has survived cancer and two falls. The first fall broke her left thigh bone and the second, her right. The afflictions that came almost in a row caused much pain, both physically and emotionally, but they also had strengthened her willpower to fight on.

It was the same tenacity that drove her to nurse and care for her long-time gardener, who was unmarried, in his final days while she was still robust and healthy.

He was a multitasking gardener, a dedicated and hardworking one, unlike many others. Compassion, after all, knows no bounds. Seeing that he had no one to take care of him, Dayang Mariani took him in and nursed him every day, including taking care of his personal hygiene whilst caring for her own mother, who was also sickly then.

Moved by her kindness and veritable concern, the ailing gardener wanted to offer his house grant to her, but she declined the gift.

Instead, she helped him reconcile together with his estranged niece, whom he had adopted as his daughter and whom Dayang Mariani had asked him to offer the grant to.

Consequently, Dayang Mariani arranged for him to be transferred to his niece’s house as she felt that he needed to be with his own relatives as illness took a toll on his frail body. She did it with a heavy heart, but she knew it was the right thing to do. The gardener breathed his last five days after he was moved to his niece’s house, surrounded by his close relatives.

Highs and lows of caregiving

Indeed, those were a manifestation of her thoughtful consideration for those around.

Later, when her mother was bedridden, she took good care of her. It was then that she and her business partner sold their business school, CADAS to Sunway College.

Being the youngest child, she was very close with her mother. The latter had always stayed with her and would not have it any other way. She took the highs and lows of caregiving for her mother in stride and considered it a privilege.

Not long after her mother’s passing, Dayang Mariani had to fight her own battle against cancer. In caring for her ailing gardener and her mother, she got to grips with life’s fragility. And now as a cancer survivor, she has to embrace her own fragility, prompting her to put things in perspective and all the more value every single day of her life.

Her story speaks volumes of her tenacity and fighting spirit of never saying yes to giving up.

She went through one of her worst fragile moments when she was brusquely told that she had cancer by a doctor, who seemed to have poor bedside manners.

The news hit her like a bolt of lightning. It was September 2010, the eve of Hari Raya Aidilfitri.

“I had yet to be seated when the doctor told me the devastating result of my biopsy, without a word of caution at all. I’ve never felt so hopeless in my life. I had to pluck courage and take it calmly,” she recalled.

Grappling with cancer

Dayang Mariani was diagnosed with Stage 2A breast cancer.

“Both my husband and I were quiet as we walked out of the doctor’s room. We remained quiet all the way home as we grappled with the feeling of anxiety and depression.

“I could not help the overwhelming sense of fragility and fear in me,” she said.

She had a lump removed from her breast, but the treatment process that followed did not go smoothly. While she was still nursing her wound, her chemo-pot got dislodged and she had to have it removed.

And then, she had a blood clot that caused her vein to bulge up her neck. She had to fly to the federal capital for treatment at a specialist centre there.

After undergoing a procedure, she spent three days in an unconscious state in the intensive care unit (ICU). At that time, she saw a very bright light.

“Then I heard my name called. That was when I woke up and saw my husband. It could be that it was a near-death experience. I read some articles on how people saw a bright light at the end of a tunnel when they were near death.”

Dayang Mariani seemed to have encountered what appeared to be a near-death experience. Although the recuperating period was rather painful, she was just thankful to be alive. Even to move her head up and down was painful.

“I had to take care not to do what I used to do as far as physical movement was concerned. I had to perform my daily prayers on a chair because I had difficulty in bending,” she said.

Dayang Mariani was on a blood thinning medication for a while. After she stopped the medication, another problem arose. She had just completed her six cycles of chemotherapy when she had to undergo a surgery to remove a hardened blood clot tissue in her breast, which left an open cavity that would take a year to close. She had to go to the clinic alternate days to do the dressing.

The cavity at the lower part of her breast did not deter her from getting back to her normal active life.

“We don’t have to wait till we’re 100-per cent well to do things. You can’t find the perfect time to do something. There’s no perfect time. As long as we are able, just do it,” she stressed, without mincing her words.

Even when she was still on chemotherapy treatment, she was already visiting other cancer patients just to give them words of encouragement and engaging in talks on cancer awareness.

She went to Italy for the International Scout and Guide Fellowship (ISGF) gathering and followed her husband on his working trips to Adelaide, Melbourne, Geneva, South Africa, Barbados and Niagara Falls.

“My difficult days were eased when I travelled. It kept my mind occupied,” she added.

Positive attitude

Dayang Mariani chose to live in the positive. Whilst nursing her cavity, she continued to travel whether it was for leisure or for work. She went to as far as Sydney, Australia together with members of Trefoil Guild Girl Guides (TGGG) Sarawak Branch for an ISGF conference there, with the open wound.

Whilst in Sydney, she cleaned and dressed the cavity herself as she could not find a clinic.

“My friends couldn’t help me much on this one as they got panicky the moment they saw the opening.”

Dayang Mariani has been the president of TGGG Sarawak for a number of times since its formation in 2003. She initiated the setting-up of the non-governmental organisation (NGO) when she was vice-president of the Girl Guides Association Sarawak Branch.

Affiliated to ISGF, which she is involved in, the NGO is also a member of Fellowship Scouts and Guides Malaysia where she holds the position of a vice-secretary. Since its inception, TGGG has been active in charity work.

“Not long after my surgery in 2010, I stepped back from holding positions in TGGG Sarawak because I didn’t want to hinder the progress of the organisation with my illness. I also believed that it was time to let the younger ones lead as I wanted to see the organisation progress. Subsequently, they appointed me as advisor, which I was happy to accept,” she said.

Two years later, Dayang Mariani was about to bounce back. She took the challenge to be the president of the Special Olympics Kuching Chapter as appointed by the Ministry of Welfare, Community Wellbeing, Women, Family and Childhood Development.
She was a bit reluctant at first.

“It wasn’t an easy decision as I had just completed my chemo-cycles and radiotherapy, and wasn’t ready for such a big responsibility. My husband was the one who encouraged me to accept it because it was a good cause.

So I thought, why not, since I had been given a second chance to live.”

Involvement in Special Olympics

The Special Olympics is the world’s largest sports organisation for children and adults with disabilities. It opens opportunities for them to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families and the community.

Dayang Mariani (on wheelchair) leading Sarawak Special Olympics contingent to Banjarmasin for the 2019 Borneo Cup. Also in the picture is her supportive husband Prof Datuk Dr Khairuddin Ab Hamid (second left).

“When it’s for a good cause, there are always generous people and corporate companies who are willing to help, especially financially.

I’m thankful to God that we managed to get funding from the government for a few years now for overseas and state games,” she said.

Following her involvement in Special Olympics Kuching, Dayang Mariani had been a deputy head of delegation for the Malaysian contingent for the 2015 Summer Olympics in Los Angeles, USA; the main organiser of the 2018 Sarawak Games for people with disabilities, which was centred in Kuching; and the Sarawak contingent leader to Banjarmasin (Kalimantan), Japan and Adelaide (Australia) for their respective international games.

She broke her left thigh bone just after the closing of the 2018 Borneo Cup, hosted by Special Olympics Kuching. The fracture was due to osteoporosis, which probably was the effect of chemotherapy.

She tripped and fell at a supermarket after bidding farewell to the last group of participants.

The recovery was slow and painful, but she managed to lead the Sarawak contingent the following year to Banjarmasin for the 2019 Borneo Cup, where she came in a wheelchair.

“As long as our heart is there and our spirit is high, we can do it. God will help us through.

“Being on wheelchair, I could feel the frustration of not being able to move from one place to another. I was able to grasp, albeit not fully, how it felt like to be physically handicapped,” she said.

On wheelchair

Dayang Mariani: ‘Being on wheelchair, I’m able to grasp albeit not fully, how it felt like to be physically-handicapped’.

Dayang Mariani is unstoppable once she puts her hand to the plough.
She had been using wheelchair for meetings, speaking engagements and in other events for quite some time, but as she got stronger, she resorted to using a medical walking cane as a way for her to get her life back.

By the time she was able to walk properly, she had another fall – this time, in her own kitchen on the eve of Hari Raya Aidilfitri. It broke her right thigh bone. As with her other thigh, she had a titanium implant to support her bones.

“We know our life is fragile, so just do what you want to do and do it now or we will never do anything.”

Her outlook on life is made plain as she tries to grasp and hold what she is passionate about.

An aficionado of Sarawak’s traditional textiles and cultural heritage, she is also active in Society Atelier Sarawak, an advocate for Sarawak’s arts and crafts, where she is the advisor.

An aficionado of Sarawak’s traditional textiles and cultural heritage, Dayang Mariani posing with her own collection of Sarawak traditional shawl, ‘keringkam’ and ‘selayah’.

It is no coincidence that she appeals to a wide range of people, including athletes with disabilities, not to mention her personal care and concern for others, including former teachers and principals from her alma maters, whom she occasionally contacts.

The list also includes frontliners, who were recipients of food packs from her every Friday for a period of three months during the early part of the Covid-19 pandemic.

Cancer advocacy and awareness

Her battle with cancer did not stop with her being declared a survivor.
She took the serious disease with a dash of humour, as she always did.

That, along with her will to succeed, drew the attention of the Society for Cancer Advocacy and Awareness (SCAN), which had just been founded at the time.

She was offered to be their advisor as a result, which she gratefully accepted.

“As an advocate for cancer patients, we have recently presented a paper to the Ministry of Welfare, Community Wellbeing, Women, Family and Childhood Development asking for free treatment for cancer patients from the 40 per cent low-income group (B40) in all government hospitals,” she stated.

Her years of struggle and endurance to brave the pain and distress that darkened many moments in her life have not been futile. In fact, she has gained strength and embraced a more positive outlook to life. Arising from all this is her determination to live a more purposeful life and serve the community well.

For her contributions, Dayang Mariani was given the ‘Penggiat Sosial Wanita (Women’s Social Worker) Award’ by the Ministry of Welfare, Community Welfare, Women, Family and Child Development in 2018.

Hers is a story of a triumphant fighter who fought and won many silent battles on several grounds.

It is a triumph that drives her further afield to touch base with the less-fortunate folk and lend a helping hand of hope and care.

Dayang Mariani’s involvement in organisations and activities for cancer patients and people with disabilities and in the cultural heritage of Sarawak testify to a triumph that seeks to bring joy and glory to the community of hopefuls.