When patients are told that they need palliative care, most fear that death is imminent.
However, for Tham Syarul Ab Wahab, Tengku Nur Hanim Tengku Bahadur and Jegadeva Kularatnam, who have been diagnosed with life-limiting illnesses, they continue to live their lives full of rigour and joy.
Tengku Nur Hanim, who was diagnosed with breast cancer in 2014, was once almost bedridden and had to be aided by others to do simple tasks.
“I was in pain. Nobody could really help me because even if they touched me, it was too painful. I was not eating and drinking, and I was throwing up. I was at my weakest and in spite of all that, I had to go through chemotherapy which worsened my condition,” she says.
Recalling that period, Tengku Nur Hanim – who used to work in advertising – recalls that even her family thought she was going to die. She says her condition worried her family, to the extent that even her sister would return thrice a year from the United States just to see her.
Since being referred to Hospis Malaysia in 2018, Tengku Nur Hanim says her pain, which would usually be very intense, is now well managed. She says that a palliative care nurse would come to her house to check on the dosage of her pain medication, thus giving her much relief.
Hospis Malaysia, set up in 1991, is a charitable organisation that provides community palliative care services to patients with life-limiting illnesses.
About 2,000 patients suffering from cancer, organ failure or progressive neurological conditions, are referred to the organisation every year. The services provided by the organisation are free of charge.
Tengku Nur Hanim says Hospis Malaysia’s fortnightly visits give her family the reassurance that a medical professional is only a phone call away.
“I really feel that more people should be aware of Hospis Malaysia and palliative care because not many people know. They think that we need palliative care only when we are too far gone. This is not the truth actually,” she says.
Tham Syarul who is diagnosed with was advanced nasal pharyngeal carcinomareferred to palliative care in December last year. A month after his referral, he suffered from acute spinal cord compression.
Hospis Malaysia healthcare givers helped him manage his spinal cord compression, enabling him to walk again, albeit with support. However in April this year, he became paralysed from his waist down after suffering from a second bout of spinal compression, he says.
Despite his condition, the 41-year-old former Syarikat Bekalan Air Selangor (Syabas) IT employee says he was still determined to move around.
“The nurse came and gave me medication, and I felt that my pain was reduced significantly. She then offered to loan me a special recliner wheelchair from Hospis Malaysia as the one I had was not good and really hurt my back. This helped me to move around again,” he says.
According to Nisha Gunasakaran, the nurse who cares for Tham Syarul, he wanted to increase his mobility so that he could still go out with his wife and son.
Retiree Jegadeva Kularatnam, who was diagnosed with salivary gland cancer in 2011,is unafraid of death, calling it an “inevitable” moment. Jegadeva went through surgery to remove the cancerous growth but opted not to proceed with chemotherapy after seeing how it affected his siblings who also had cancer.
“I began to accept the fact that death is inevitable but (it is about) how you approach it, how you face it when it finally comes. Dying is a process that we all have to go through but dying a horrible death? I did not want that. If I was going to die, then let me die in a more dignified way. Slow or fast, it does not matter to me,” he says.
Jegadeva says he went without any treatment for two to three years but received anti-bone cancer injections as the cancer had spread from his salivary glands to his shoulders as well as his lungs.
In December 2017, doctors referred him to palliative care due to the shortness of breath and constant hiccups he was suffering. He says portable oxygen tanks provided by Hospis Malaysia have enabled him to travel to Penang, Johor and even Singapore.
Jegadeva also encourages those who have been diagnosed with a life-limiting illness to get help from a palliative care centre such as Hospis Malaysia, as the care he has got has helped him tremendously.
He says he now only wants to travel to Australia to celebrate his granddaughter’s 21st birthday, but faces another hurdle because airlines would not allow him to carry his oxygen tank onboard.
“The airlines do not encourage you to bring your own oxygen tank. It does not synchronise with what they have. They have so many conditions and it puts you off, but I am still hoping to go to Melbourne this year. Our granddaughter is there, and she will be 21 years old,” he says.