Zuraini Kamal was 43 years old when she was diagnosed with endometrial cancer at stage 1B in 2012.
With no support groups and non-governmental organisations (NGO) for cancer patients, Zuraini fell into the trap of purchasing health products with big promises and was misled into pursuing alternative medicine for her cancer treatment.
I spent thousands of ringgits purchasing alternative medicines, anything that was advertised to help with cancer I bought them. But all of them were rubbish without the appropriate cancer treatment. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Ultimately what saved Zuraini was hysterectomy and radiotherapy in her journey to be cancer-free.
The reality in Kedah and perhaps many more individuals in Malaysia is that the perception of a cancer diagnosis is akin to a death sentence. Cancer claimed 82,601 lives between 2012 and 2016, and it is a number that is continuously on the incline. But many more have survived and are living with a renewed sense of hope.
At that time we did not understand what cancer was. Many of us were afraid of the treatments. When we talk about cancer, the outcome is often death to the general public. We don’t even know [how] many cancer patients survived, who are still alive, after undergoing treatment. – Zuraini Kamal, founder of Cancer Survivors Malaysia
One of the reasons is the limited health literacy and awareness of the disease and the treatment involved. Zuraini was declared clear from cancer and recognised that there is a gaping hole in the northern parts of Malaysia when it comes to cancer awareness in Kedah.
It just so happens that in Kedah, when I was diagnosed with cancer, there are no small support groups. In private hospitals in Kuala Lumpur, there are NGOs or clubs or small support groups, especially in private hospitals for cancer patients.
In Kedah, in Northern Malaysia, there are no support groups, even in private hospitals today. Without support groups, cancer patients often receive misinformation and are lured into following pantang larang that only jeopardise their recovery process. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Zuraini established Cancer Survivors Malaysia (CSM), spreading awareness through hospital visits and sharing sessions amongst cancer patients and survivors. The organisation helps in their best capacity to address the urgent needs of cancer patients, serving over 30 cancer patients monthly.
With the advent of social media, CSM formed a support group for cancer patients based in Jitra, Kedah. The work of CSM is evident on the community’s Facebook group with Zuraini and the committee members casting light on the lived reality of cancer patients and survivors in Kedah.
Filling The Gap Left By The System
There are apparent health inequalities in Malaysia’s rice bowl. Despite the heavily-subsidised cancer treatment in government hospitals, there is a catch in the form of hidden costs.
The hospitals in Kedah and its neighbouring states lack the necessary equipment for cancer treatment, forcing many to travel to the government hospital in Pulau Pinang or as far as Kuala Lumpur just to attend their chemotherapy or radiotherapy sessions.
Many cancer patients have to go to Penang, people from Perlis, people from Langkawi, and people from Kedah. It is very burdensome for them to go to Penang. Long journeys, fuel, tolls. After that, you have to have accommodation. I know patients from low-income households who take the train from Alor Setar, get off at Butterworth, and then take the ferry to get to the island.
They’ll take a taxi that costs around RM 20. Doing that for three months to attend a radiotherapy treatment, they are bound to be fatigued. – Zuraini Kamal, founder of Cancer Survivors Malaysia
There are patients that Zuraini knew who ride the motorcycle to attend chemotherapy in Kedah. For them, e-hailing is out of the question, especially with the exorbitant costs incurred for the distance.
Every day the patient had to go back and forth, despite being unwell, the patient would ride on the motorbike. It’s the cheapest form of transport for the patient taking a taxi would cost around RM 50. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Attending To The Different Needs Of Cancer Patients
But not all cancer patients can give their time of the day to attend therapy sessions and handle the side effects that persist.
Almost 90% of cancer patients lose their appetite either due to emotional problems or treatment side effects. For example, chemotherapy will cause them to vomit. Radiotherapy will cause them diarrhoea, and oral chemo will cause mouth ulcers. So the patients lose their appetite and can’t eat. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Zuraini shared the story of a single mother with two children; the late Puan Haniza was diagnosed with an early stage of breast cancer. The doctors who attended to her recommended immediate surgery and treatment. But, Haniza refused.
If she attends the treatment, she won’t be able to go to work. Haniza is the breadwinner in the family. She needed the money to support her children. A year onward, she was worse off and no longer worked. – Zuraini Kamal, founder of Cancer Survivors Malaysia
CSM stepped in, paid her house rent, and bought her milk and medication when she lost her appetite. Unfortunately, Puan Haniza, would pass away despite all of the support she was receiving.
But not all stories ended in tragedy. Mak Cik Timah from Padang Terap, is among those who didn’t lose hope in fighting cancer.
Mak Cik Timah is a 75 years old rubber tapper, she is a lung cancer survivor for the past 6 years. She attends to her 40 years old disabled son. It wasn’t easy for her to get oral chemotherapy, but she did. Her story is one of the exemplary tales of cancer fighters in Kedah. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Combating Cancer As A Community
But, awareness in tackling the misinformation on cancer is just as important. In Kedah, the response to cancer is either surrendering to fate or resorting to bomohs for treatment.
Many people still think having cancer is the same as a death sentence, with no hope of life. The community lives with many taboos. They rely on alternative treatments, bomoh. Some bought products that cause more harm than good. – Zuraini Kamal, founder of Cancer Survivors Malaysia
By delaying treatment from the appropriate healthcare providers, cancer patients are putting themselves to worse prognoses, leaving them with far fewer treatment options.
So far, Zuraini states that CSM’s reach has surpassed over 20,000 individuals with the hospital visits they have engaged with patients. CSM also runs continuous awareness campaigns and fundraising programmes such as flea markets to benefit more cancer patients in Kedah. Zuraini’s substantial work through CSM was recognised by the Union for International Cancer Control (UICC).
Early in 2022, CSM celebrated 30 cancer patients in stage 4 at a durian orchard, connecting and being their pillars of strength. Suffering from cancer also takes a toll on the mental health of patients as it does on their physical health.
The purpose of this program is to allow cancer patients to bond with each other even though the cancer they are suffering from is not the same, but they can share their insights. – Zuraini Kamal, founder of Cancer Survivors Malaysia
Through CSM, Zuraini who was given another go in life is doing the same by providing the necessary help to cancer patients in Kedah. She hopes that many more members of the public will open their eyes and band together to not only raise awareness in the community but extend a helping hand to cancer patients.