Cancer through a caregiver’s eyes
A positive diagnosis affects not only the patient, but their loved ones too. To mark World Cancer Day this month, a mother shares how she copes with her daughter’s Stage 3 brain cancer.
In 2018, AzianHanim Binti Abu Taleb had her world turned upside down when a minor tumour in her daughter’s brain developed into Stage 3 Left Anaplastic Ependymoma and caused a seizure. Doctors declared that her brain had shut down and requested permission to disconnect her from life support, but her surgeon asked to attempt surgery with a 50:50 chance of survival. The 10-hour procedure saved her life but the battle was far from over.
“It was devastating to think that my daughter was alive in the morning and suddenly declared dead by evening,” shares Azian. “I couldn’t fathom it. I asked the doctors to hold off on disconnecting the life support machine so I could pray to God, and I truly believe my prayer was answered.”
The surgery left her daughter with severe side effects, including memory loss, paralysis of the right side of her body and heightened sensitivity towards noise and bright lights. A second surgery a few weeks later robbed her of speech and movement.
“She was like a newborn baby,” continues Azian. “The whole situation took a heavy toll on her. She was bedridden and could only drink milk through a tube, which resulted in severe weight loss. She was completely dependent on us and needed round-the-clock care.”
The physical and emotional challenges on the family were compounded by increasing financial strain. A single mother with seven school-going children, Azian had to quit her job to provide the care her daughter needed. Two of her children sacrificed their education to work, and Azian herself would make and sell kuihkapit for additional income when possible. Still, the family was barely scraping by.
“At the most desperate times, we were forced to sell some possessions,” she says. “When MAKNA approached us to offer support, I felt a huge burden lifted from my shoulders. They provided essentials for my daughter such as a wheelchair, milk supplements, and diapers. They also covered our travel costs to and from the hospital and even provided an allowance for my children who are still studying. I am incredibly thankful for their assistance. “
Despite the monumental challenges, Azian strives to maintain a positive attitude.
“I prefer to not think about my situation as hard, no matter how trying it can be sometimes,” she says. “I always convince myself that everything will be okay and that there are people out there who are facing much bigger problems, so I should be thankful and not give up easily. My children are my source of strength. I think of them constantly and remind myself that I need to set an example for them by being strong.”
Caregiving is a vital and demanding role, and caregivers need to look after themselves just as much as they do their patients. There are numerous resources about caregiving, including here and here, that might offer insights and support.
World Cancer Day is celebrated every February 4th to raise global awareness of the disease and encourage prevention, detection, and treatment. Early intervention saves lives!