KARACHI: “While I was caught up with finding the right treatments and doctors, I myself was going through something I could not name. It was something between fear and grief. I would check my mother’s pulse every 15 minutes each night, and wake up with this horrible emptying feeling in my heart. I really wanted to talk to someone about it, but again, I could not find words to explain.”

These are the words of Shumaila Tahir, whose mother successfully battled breast cancer. But while the brave matriarch staved off the disease, the toll it took on her family was indescribable.

“I think my brain was completely rewired when my mother was diagnosed with breast cancer. I used to organise awareness campaigns and sessions every year for other people, thinking I could never be one of them. That is, until I [became one of them] and that’s when I realised it is not just patients who need the awareness, it is their families too,” Ms Tahir told Dawn.

She recalled how her entire family seemed to share the grief, yet they all struggled to articulate it, until they discovered there was a name for the ennui they were experiencing: anticipatory grief.

‘Pinktober’ is devoted to raising awareness about breast cancer, but little attention is paid to the mental health implications of living with the disease, especially for care-givers

This is not an uncommon tale. While it is not secret that as a disease, cancer affects the mind and the body, and living with the disease — both as a patient and a care-giver — can take a much bigger toll on one’s mental health than is widely appreciated, very few people have the wherewithal to express the mental toll it takes on the family of a victim or a survivor.

Often, the care-givers are unable or unwilling to give voice to their feelings, fearing that it may be construed as an attempt to belittle the suffering of the patient themselves.

“My younger sister and me had always joked about who would die first. So when she was diagnosed with breast cancer, I did not know what my reaction should be. I have always seen people mourn way before a cancer patient passes away, but my mind did not accept that she, God forbid, would — I am even scared to pronounce the word — die,” said 26-year-old Hassam Reh­man, whose 23-year-old sister fought breast cancer.

“Most people start spending more time with the patients thinking ‘maybe this is the last time,’ but I reacted in the opposite way; I stopped spending time with my sister. I just could not bring myself physically close to where she would be in our house, it was like every time the guilt would push me to her door, the fear of losing her would overpower me and I’d turn back that very instant,” he said.

Hassam recalled how his mother asked him, point blank, why he didn’t spend time with his sister anymore. “It was then that I realised that I was very, very, very scared of experiencing something remotely close to grief, and it was the same case with my entire family. My mother pretended like nothing happened, and I pretended like the thing did not exist,” he said.

“For me, the biggest challenge was not taking care of my wife after she was diagnosed with breast cancer, it was hearing that I needed to remarry since she is not going to survive,” Abdul Rehman, 46, told Dawn.

“I would sit with her, pretending everything is fine. There was an unspoken agreement that we’re not talking about ‘it’. We would recall the fond memories we have made together over and over again, but how long you can talk about the past?” he said.

“The cancer was eating her body, but it was also slowly deteriorating my emotions, my capacity to feel,” he said.

Mental health experts told Dawn that when a loved one is diagnosed with cancer, anticipatory grief can afflict even the most emotionally sturdy people. “Grief does not come in one form. There is a misconception that grief only strikes you when someone dies. In the case of a chronic disease that might result in death, people experience anticipatory grief,” said Dr Nosheen Raza, a grief therapist.

Dr Haroon Abbas, a clinical psychologist who specialises in grief, told Dawn that in contrast to conventional grief, which signifies that a loss has already transpired, anticipatory grief frequently coexists with a sense of hope for the extended life or recovery of a loved one. “According to the National Cancer Institute, the predominant symptoms of anticipatory grief include increased depression and heightened worry for the patient. However, this is not always the case,” he said.

Abdul Rehman, who has been enrolled in grief therapy for about a year now, describes death by cancer as ‘the slowest poison’. “When my wife died… it took me about a month or so to finally accept that she’s no more, and then I went through a plethora of emotions which I did not recognise,” he said.

For many, finally being able to identify the source of their pain and grief could be a much-needed form of closure. For others who are still suffering from it, though, it is a good place to start on the road to recovery and healing.

Published in Dawn, October 30th, 2023