My father’s journey with Brain Cancer: from DGM to GBM
– Ms. Krithika S. and Ms. Sharanya S., Bengaluru
My father, Mr Swaminathan C K, Deputy General Manager (DGM) of BSNL, was a dedicated, humble, loving and caring person. He had built a beautiful family, well nested by his wife and his two daughters. We are a close knit family who live in the moment, create innumerable memories and are spiritually inclined. Once my sister and I branched out, my father began exploring his spiritual side with passion. His post retirement plans included him wanting to tour the entire world with his lady love, my mother; however life had other plans.
As we were preparing for his 60th birthday celebrations, my father would often call either my sister or me (which either way used to be a daily ritual, which we crave for now!) and complain of tiredness. As no daughter would anticipate anything to be wrong with their iron-clad dad (let alone even remotely thinking of the deadliest of cancers), my sister and I also didn’t think it was anything but his age related fatigue which was accentuated with all the preparations going on for the celebrations.
It was during one of our family calls that my father struggled to recollect my sister’s name and ended up having mild seizures. He was immediately rushed to the hospital and undergo a battery of tests and scans. To our dismay, he was diagnosed with Glioblastoma Multiforme (GBM) – Stage 4 Advanced cancer.
We started grieving the loss of our dad from that very day!!
Over time, he began developing organic psychosis, incoherent speech and had insomnia for eleven days straight. We then met Dr. Praveen Kumar, an embodiment of god, who helped save his life multiple times with surgery. As his chemotherapy progressed, he began to slowly lose motor functions on his right side. We were unable to accept this loss and were in denial, despite the doctor letting us know that this was an expected outcome of his disease progression. It was hard for us to comprehend or process the fact that our father, the man who delivered Bhagvad Gita lectures, who sang bhajans and who delivered several training programs, was now slowly starting to lose his memory and was unable to eat. His stroke lead him to slowly become bed bound and dependent on everyone for everything.
It is at this point, that we came across palliative care; a much needed blessing. We soon realized and understood the importance of palliative care for a terminally ill patient. The family counseling sessions helped us to accept reality, be a part of a shared decision making process while planning the care pathway for my father, and take decisions that would have otherwise been unimaginable.
When we learnt that we didn’t have much time with our father, we as a family, wanted to do what was best for our beloved father! We admitted our father at Karunashraya, a hospice in Bengaluru. We visited him everyday despite the incorrigible pain of seeing him sink. We wanted our father to have the best possible exit and a dignified death; and palliative care helped us to do just that. We realize and strongly advocate that any family who is going through a similar painful and cruel journey, to access and utilize palliative care services.
Having the palliative care team walk with us, allowed us to have a chance to tell my father, the kind of person he was and how he made us so proud!
We lost him in January 2022. Even though the pain remains, we believe that he is now in a better and in a pain-free place.
Though the loss is still fresh, we chose to share our story because we want people to know that it’s ok to hurt and grieve. One of us is a professional counsellor, and despite being aware of various tools to help cope with loss and grief, things are very different when it hits home and when one has to constantly juggle between being a daughter and a healthcare professional. There were situations when the professional training pointed us in one direction while the daughter within chose to not believe or accept things.
For those gloomy days, it was father’s words, of always finishing one’s commitments that helped us get through the day. We as a family experienced a myriad of emotions including having to deal with stigma when we chose to avail palliative care services. We believed that every journey need not end in tragedy, and that it is ok to grieve, feel confused and ask for help when needed. We personally feel that palliative care is very underrated because everyone chooses to believe that palliative care is only for the “terminally ill patient”. Walking with the palliative care team helped us make sense of what was happening. We also realise that things for my father would have also been very different if he had access to palliative care earlier on in his disease trajectory. We now know that palliative care is for anybody who is going through cancer either as a patient and even if one is walking beside a loved one as a caregiver.
Awareness along with access to appropriate and timely interventions, can help in the early detection and treatment of cancers, while also focusing on the quality of life of the patient and the family.
About the Authors
Ms Krithika Swaminathan is a senior risk and compliance specialist, a mom of two beautiful girls and her father’s most favourite person.
Ms Sharanya Swaminathan is a corporate psychologist by profession, and her father’s best friend and soul person.