My friend drew a perfect analogy when she described the place that was going to be my temporary home as the Bigg Boss house. I smiled at the irony of the situation but also found a brief relief in it — looking at the immediate reality in a lighter vein was the only option to get past this period. Three pairs of cotton clothes, a few utensils, some woollens, three novels and my laptop were all that I was allowed to carry with me during the stipulated three-week stay. With just these, I accompanied Ma to the Stem Cell Transplant Unit at AIIMS, Delhi, on a Sunday morning and swerved our ties temporarily with the outside world.
It is difficult to imagine that within the premises of one of India’s premier medical institutions exists a world disconnected from the cacophonous activities of daily life. But once inside the Unit, we became part of a different world — one that was clean, cold and smelled of disinfectants, reminding us that a long period of solitude was upon us. The small balcony of our room offered a view but no fresh air. A glass pane separated us from the polluted city.
Our first few days here went by smoothly in what Ma called a “comfortable prison”. While interaction with the external world was forbidden, the pantry became our only refuge. This is where attendants and caregivers shared stories and gave courage to one another while the patient was confined within their ward.
There is something about the word cancer that makes it sound ominous. Its unnoticed invasion of the body, uncontrolled manipulation of cells, extraordinary ability to dodge, evade and deceive even the trained eye makes it a deadly malady that requires physical, mental, emotional and, most importantly, financial battles to be won. So, when the word first made a surprise entry into our family’s lexicon, all we could react with was shock. Ma, in her 61 years, had never uttered the word directly, always referring to it indirectly until she was diagnosed with multiple myeloma, a type of bone marrow cancer, early June this year. Life has its ways and so has our body to teach us the law of acceptance. Our phases of hardship had just begun.
Any form of suffering makes us believe that we are the worst off. This may be because our immediate surroundings don’t expose us to situations where inconsolable truths are a reality. Here, though, I was not the only one. In the pantry, I heard how persistent bouts of fever or continuous itching, in which not even the sharp teeth of a comb offered relief, were, diagnosed as symptoms of a late stage of some type of blood cancer. I heard of a 20-year-old girl whose dreams were slowly being replaced by nightmares after years of chemotherapy and multiple relapses.
There is nothing we can’t fight together. It was with this resolve that Ma and I had entered the hospital. But despite a team of doctors, led by Dr Lalit Kumar, professor, medical oncology, explaining to us in detail the repercussions of chemotherapy and the pain that would follow the transplant, we were not prepared for it when it came upon us.
The first signs became apparent immediately after the transplant. Unlike other days, Ma couldn’t get up from her bed. Her appetite disappeared — even the sight of food was enough to induce nostalgia. Overnight, her body seemed alien, hostile even. Sleep stood by her faithfully — her speech slurred, her eyes could barely focus.
Soon, there were other manifestations. The chemo discoloured her skin. Her hands parched, dark patches around her eyes and chin stood out on her porcelain skin. Swallowing even a sip of water became a task, her mouth ravaged by sores. The hair was the last to go.
For those crucial days that she fought for her life, I had my own demons to confront. It first came in the form of isolation when Ma surrendered herself completely to sleep. The silence in the ward began to overwhelm me. Visits to the pantry, that had been a relief in the early days, had to be made brief for fear of contracting infections and then passing them on to Ma. I began having frequent emotional outbursts — the tears wouldn’t stop, the anger wouldn’t melt away. It felt like Ma’s cancer was getting the better of both of us.
There is only one thing that separates imagination from reality. It is the experience of living in that moment. For us, it meant a new lease of life for Ma. Before we left the hospital, the Sister told me one thing: “This is her new life. Take care of her like a newborn child.” Our roles have reversed now. And, life truly has come a full circle.
Shilpa Raina is a Delhi-based writer.