Limited Edition Speak Up!
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Mahalinggam A/L Karpayah, 76 – Progressive Supranuclear Palsy (PSP) & Chronic Myeloid Leukaemia
“My husband was first diagnosed with Parkinson’s, but when his condition worsened, we were referred to Hospis Malaysia (HM).”
After retiring in January 2023, Jeyanthi enjoyed a holiday in Bali with her husband. Soon after, he contracted brain meningitis and everything changed. He became bedridden, unable to walk or speak, requiring full-time care. By April 2024, they finally received the correct diagnosis: progressive supranuclear palsy (PSP), an irreversible condition.
“I went through denial, anger, and desperation. I spent so much trying to cure him, not realising I needed to focus on comfort instead.”
HM became her pillar of strength. In one pivotal conversation, Dr. Punitha helped Jeyanthi accept the reality of PSP and shift her focus from cure to quality of life. The team — including nurse Bazilah and rehabilitation therapists — taught her how to care for her husband gently and confidently, from safe exercises to communication through simple hand pressure and blinking. They also provided essential equipment to improve his comfort at home.
A year into HM’s care, her husband regained some mobility and could walk short distances with support.
“Palliative care isn’t just for patients — it’s for caregivers too. HM helped me care for my husband with dignity, but they also helped me care for myself.”
Today, Jeyanthi focuses on ensuring her husband’s days are filled with comfort, connection and love. “Without HM, I would have been lost. They gave us strength, knowledge and peace during the hardest time of our lives.”
Gilbert, 3 – Atypical Teratoid/Rhabdoid Tumour (ATRT)
Gilbert was diagnosed with Atypical Teratoid/Rhabdoid Tumour (ATRT), a rare and aggressive brain cancer, in April 2024 at nine months old. Having previously experienced Hospis Malaysia’s (HM) support during a family member’s end-of-life journey, his parents knew they needed the right guidance for the road ahead.
Gilbert underwent multiple surgeries, including the insertion of a ventriculoperitoneal (VP) shunt. While his hospital treatment was intensive, HM became the crucial link between hospital care and home recovery.
“HM became our gap filler,” the family said. “When hospital appointments were hard to secure, they were there to guide us.”
HM worked alongside hospital specialists and an external physiotherapist to support Gilbert’s rehabilitation. Their physiotherapist guided the family through structured daily exercises and recorded them to ensure therapy could continue consistently at home. Led by Dr. Wai Fong, the HM team also provided caregiver training, timely medical advice and recommendations for home modifications.
Today, Gilbert is cancer-free. The focus has shifted to rebuilding his strength and supporting his developmental milestones — learning to crawl, stand and walk independently.
“Looking back, there have been so many special moments with HM — seeing Gilbert kneel again, stand for a few extra seconds, and regain his strength. HM’s care goes far beyond medical support — they empower families, boost confidence, and make every milestone possible. Early palliative care can transform a recovery journey and for us, HM made all the difference.”
Gilbert’s story is a reminder that palliative care is not only about end-of-life — it can also be a vital source of support in recovery, rehabilitation and helping families move forward with confidence and hope.
Lung cancer
Liew Yen was diagnosed with lung cancer at the age of 82 and was referred to Hospis Malaysia (HM) by her doctors.
“At first, I felt nervous. But over time, it felt like friends coming to visit.”
Through regular visits, the HM team — including Su Jiun and Sang Sang — guided her with gentle, personalised physiotherapy. They taught her how to sit properly, stand safely, transfer to her wheelchair, and walk with a frame.
“With their exercises and encouragement, I slowly regained my independence. I can now go to the washroom and join family gatherings again.”
HM tailored every session to her abilities, never pushing beyond her limits. Beyond physical care, they also trained her husband and children on how to care for her safely at home, giving the whole family confidence and reassurance.
“Their care is professional, compassionate, and truly dedicated. We are deeply grateful.”
For Liew Yen, HM’s support has restored not only mobility, but also dignity, comfort and peace of mind for her family.
Heart failure
Michael was diagnosed in June 2021, shortly after undergoing bypass surgery. Just three weeks after being discharged, he suffered two heart attacks during the height of the pandemic.
“When I reached the hospital, I told my son, ‘I don’t think I’m going to make it.’”
His son replied, “I’m going to give you strength — your daughter-in-law is pregnant.”
That hope carried him through. His grandson was born the following year.
After discharge, Michael was referred to Hospis Malaysia (HM). “When I first heard ‘hospice,’ I thought it meant the end,” he admits. “But they gave me a different perspective. They helped me live.”
HM supported him beyond symptom control — reviewing his medications, adjusting pain management, and guiding him through the safe use of morphine. “When pain is controlled, frustration goes away. Sometimes it’s not anger — it’s the pain talking.”
The team also became a bridge between Michael and his family. “When I can’t explain things to my wife or children, HM helps them understand. They listen. They respond. I feel heard.”
Once an active man who loved gardening and working, Michael now has to pace himself carefully. With HM’s guidance, he has learned to manage his limits while maintaining dignity and independence.
“After hospital discharge, those first few months are critical. Without proper follow-up, patients can deteriorate quickly. With HM, I never felt abandoned. Their presence itself is therapeutic.”
Today, Michael finds strength in family, especially his young grandson. “They didn’t just manage my illness,” he says. “They gave me hope.”
Kanser Ovari Tahap 4
Norlina pertama kali didiagnosis dengan kanser ovari tahap 2C pada tahun 2009 ketika berusia 35 tahun. Sejak itu, beliau telah melalui beberapa pembedahan besar termasuk histerektomi pada tahun 2019.
Semasa dirawat di hospital, seorang pesakit lain memperkenalkan beliau kepada Hospis Malaysia (HM). Tidak lama selepas discaj, jururawat HM mula datang melawat ke rumah — dan sehingga kini masih setia bersamanya.
“Pada awalnya saya tak faham apa itu penjagaan paliatif. Tapi bila jururawat HM terangkan satu persatu, saya rasa sangat lega dan lebih tenang.”
Ketika pulang ke rumah, Norlina masih lemah dan bergantung kepada peralatan perubatan. Beliau juga takut untuk mengambil morfin. Namun dengan penerangan yang jelas dan jujur daripada jururawat HM, beliau akhirnya berani mencuba.
“Saya takut morfin. Tapi bila difahamkan tentang kebaikan dan risikonya, saya yakin untuk teruskan rawatan.”
Selain sokongan perubatan, HM turut menjadi kekuatan emosi buat Norlina, terutamanya ketika menjalani kemoterapi pada tahun 2023 yang menyebabkan beliau hilang rambut, hilang selera makan dan berasa sangat tertekan.
Dahulu aktif dalam sukan dan aktiviti luar, kini Norlina menggunakan kerusi roda akibat masalah tulang belakang. Walaupun pergerakannya terhad, beliau belajar untuk menerima bantuan dan menyesuaikan diri dengan keadaan baharu.
“Ramai terkejut bila tahu jururawat datang ke rumah secara percuma. Mereka tak tahu penjagaan paliatif komuniti wujud dan sangat membantu pesakit yang sudah tak larat ke hospital.”
Sejak menerima sokongan berterusan daripada HM, Norlina tidak lagi perlu ke unit kecemasan hampir dua tahun.
“Saya sangat bersyukur dengan kehadiran Hospis Malaysia dalam hidup saya. Mereka beri saya ketenangan, rasa selamat dan kekuatan untuk teruskan hidup.”
Colorectal Cancer
Madam Soo was diagnosed with colorectal cancer in 2019, just before the COVID-19 pandemic. After surgery and months of adjusting to life with a stoma bag, she chose not to pursue chemotherapy despite a guarded prognosis. When the cancer relapsed in 2023 and spread to her lung, she went through multiple rounds of treatment, but the side effects were overwhelming.
That was when her daughter reached out to Hospis Malaysia (HM).
“At first, the word ‘hospice’ frightened me,” Madam Soo shares. “It felt like the end.” But meeting Nurse Mastura and Dr. Hashima changed everything. “They weren’t there to give up on me. They were there to help me live well.”
Through home visits, symptom management, emotional support and honest conversations, the team helped Madam Soo and her daughter prepare for what lay ahead — with clarity, comfort and dignity. From managing pain with morphine to being just one phone call away during emergencies, Hospis Malaysia became their pillar of strength.
Today, Madam Soo finds joy in simple things — ice cream, time with her grandchildren, conversations without fear. A proud Baba Nyonya who loves sewing and cooking, she treasures the photobook created with her family and the closeness they’ve gained through this journey.
“With HM, we found quality of life in this limited time,” she says. “More humane, more personal, more peaceful.”
Her advice: Don’t wait. Love deeply. Do what matters.
