It was an adventure traversing the back roads and tiny lanes that lie behind the main streets of Alor Setar, Kedah, its suburbs and villages (kampung).
The two-woman team from Kuala Lumpur had to rely on GPS (Global Positioning System) and traffic and navigation app Waze, as well as the old-fashioned method of just stopping and asking locals for directions when technology failed them.
However, it was not a travel adventure they were looking for, nor was it some kind of scavenger hunt; instead, they were searching for the homes of cancer patients.
The Home Visit Services team from the National Cancer Council (better known by its acronym Makna) were doing their bimonthly visits to low-income cancer patients who have received aid from the non-profit organisation.
The unit’s two teams travel across the country separately once a fortnight, focusing on one or two towns in one state on each week-long trip.
On this trip, aside from Alor Setar, the team was also visiting patients in Sungai Petani.
Aid and advice
The objective of these home visits is to ensure that the aid provided by Makna has been channelled to the right persons.
It also provides that invaluable human touch in an exchange that otherwise requires no direct interaction.
This is as the initial screening and short- listing of cancer patients eligible for Makna’s help are done by the doctors and medical social workers of government hospitals. Only financially-challenged patients seeking treatment in such hospitals are qualified for the organisation’s Bursary Programme.
The shortlisted applications are then forwarded to Makna, where they are reviewed and processed.
Once approved, financial aid is disbursed directly to the patient’s bank account with the hospital in charge of informing the patient, while other items like medical devices and equipment, drugs and nutritional supplements, are provided to the patient via their respective hospitals.
Communication isn’t always smooth however, as can be seen in the case of tonsil cancer patient Khairool Anuar Aziz.
The 42-year-old farmer and part-time mechanic was unaware that he had received a transport allowance of RM200 a month from August 2015 to this July for his check-ups in Hospital Pulau Pinang.
The father of 10 said that the hospital had not informed him of the financial aid and that he doesn’t check the bank account he had provided.
Transport allowances are the main form of financial aid provided by the Bursary Programme.
This is as the facilities and specialists that can treat some types of cancers are only available in the larger tertiary hospitals.
For example, adrenocortical cancer patient Zainol Abdullah, 40, had to travel regularly to Hospital Putrajaya for his treatment when he was first diagnosed in 2009.
It was only last December that a specialist able to treat his type of cancer was assigned to Hospital Sultanah Bahiyah, Alor Setar.
Meanwhile, two-year-old Muhammad Ammar Danish Zulmuttaleb, who has retinablastoma of the right eye, has to regularly travel to Hospital Kuala Lumpur with his parents – a mechanic and housewife – as that is the nearest medical centre that has the specialists to treat him.
The home visits also allow the organisation to help encourage patients in their cancer journey and provide advice in terms obtaining more aid, if needed, from other organisations.
For pancreatic cancer patient Ahmad Saad Mohamad, 56, a comment by his wife during the team’s visit that he was unable to eat a lot due to his surgical treatment was met with the suggestion that they ask his doctor for a letter to enable them to apply for aid in the form of specially-formulated, nutrient- enriched milk.
The team also provided some suggestions on how to apply for aid from other agencies to help the unemployed factory worker, who still has two school-going children.
His wife, Hairunisa Nabood Ghanny, works as a babysitter, while his eldest child is a policeman in Selangor, and his second eldest, who completed his STPM (Sijil Tinggi Persekolahan Malaysia) last year, had to give up his dreams of further education in order to start working to help support the family.
The ladies behind the visits
Such stories are what inspire the Makna home visit team of Suhaila Nik and Noraini Khalid.
Home Visit Services executive Suhaila, 29, says: “We gain a lot of experiences and learn new things each time we visit the patients.
“Each patient has their own story.
“Even though it is for a short time, we can learn a lot that can motivate or inspire us in our own lives.”
Assistant programme manager Noraini, 51, agrees, saying: “You get to see the real world and learn the true meaning of life – there are people who are in extremely difficult and painful situations.”
She knows a bit about the difficulties patients and their families can go through, having had to face some of them herself while taking care of her late father and mother who were at the hospital almost every week at one point.
“During my time at the hospital, I really came across all kinds of obstacles, and also saw the difficulties that others were facing.
“It really touched me and made me insaf – repent – and want to help others in need, especially the unfortunate ones,” says the ex-business owner.
On the brighter side, Noraini adds that the team also gets to travel around the country, trying different types of food and experiencing different types of lifestyles and cultures.
The alternate weeks away from family and home are difficult, of course.
Noraini, who is a single mother of a six-year-old, says that it is a sacrifice, having to leave her daughter in her mother’s care when she does home visits.
Similarly for Suhaila, the time away from family and friends, especially on weekends, is the main disadvantage of the job.
A home visit starts with the team planning which state they are visiting next.
They then arrange the cases according to areas or districts to facilitate travelling.
“Normally, before the home visit, we will call the patient or their family first to inform them,” Suhaila explains.
“We usually visit their home, but if that is not suitable, we can arrange to meet somewhere else according to the patient’s convenience.”
Often, the team will find that the patient has already passed away, or that they are not at home or just cannot be contacted.
Says Suhaila: “Patients passing away is, unfortunately, not uncommon.
“Most patients who apply for our aid are undergoing treatment, and are usually at stage 3 or 4, therefore, their conditions can change quite drastically.”
Despite the difficulties and sacrifices involved in their job, both Suhaila and Noraini have no intentions of quitting.
For Suhaila, the joy of being able to help patients and their family is an experience that cannot be obtained elsewhere.
As for Noraini, she will continue as long as her health permits.
She also intends to continue recruiting and training suitable candidates to join the unit, which is woefully understaffed.