This narrative describes the experience of the author’s mother with pancreatic cancer from diagnosis to death.
The author lives in the United States and his mother lived in India. Decisions about the type of care to seek, learning about palliative care, and the family’s experience of seeking care at Pallium India are described.
As a young Hindu boy in India, the author met Mother Teresa. He describes how her message of compassion to the young school boy became more clear and meaningful only after the loss of his mother when he appreciated the similar compassion shown by Mother Teresa and the staff of Pallium India.
Pancreatic cancer is known as the ‘silent killer’ – it spreads through the patient’s body in stealth mode – by the time you find out, it typically would have spread through the body to other organs. Difficult to detect during the initial stages and even more difficult to cure, once detected. Rajeshwari Pillai, my mother, was diagnosed with pancreatic cancer in July 2007. In this narrative, I would like to highlight my experiences in dealing with my mother’s illness and death.
We found out relatively soon that the prognosis for my mother was very poor. She was terminally ill and extremely frail. In a matter of four to five weeks, she had lost 20% to 30% of her body weight. I had just landed in India from the United States to spend time with her and it was extremely difficult to see her sinking in front of me.
We could see her body shutting down in front of our eyes. Her eyes betrayed the pain that she was going through, but she stoically smiled whenever she talked. There was never any admittance of pain or complaints about why she had to go through this ordeal.
Traditional versus palliative care
We had two options – aggressively treat her with the best medication possible, or make her last few days as painless as possible. It became obvious to us that the traditional route was not going to pan out, leaving the question: What do we do now?
Initially, our feeling was that we should continue to aggressively look for options to cure her. But, my mother did not seem keen on fighting through this deadly disease. She requested that music be played in her room as she was a great lover of music. She did not want to hear the word “cancer” in front of her. How do we manage her pain as she lives through her last few days? We asked ourselves.
Someone suggested palliative care. I never knew what palliative care meant before my mother went through her ordeal. We decided to go over and talk to Pallium India.
Pallium India office, Trivandrum
We came to the small building that housed the Pallium India clinic in Trivandrum. Inside we saw some patients coming in – each step sending them into deep pain. The cancer cells had multiplied with a vengeance within their bodies. Some had throats with lumps, some had stomachs that were bloated, some had bladder cancer, some had ruptured lungs, almost all with extreme pain.
An old man came in an automobile and handed over his fare to the auto driver. He was frail, and struggled to open his wallet. Had his house been already been sold to pay for chemotherapy? I thought. Had he just moved to a rental home?
Wherever you looked, you saw suffering and pain – mostly terminal cancer patients. In spite of all this pain, there was peace here – an electric charge permeated through the air. There was a sense of purpose in the doctors, sympathy in their eyes and their body language showed deep empathy for the patients. There was healing of the mind here, not the body.
Volunteers and people milled around unobtrusively – the anaesthesiologist spent three hours discussing my mother’s case. It became obvious to me that we desperately needed help from the good doctors at Pallium India.
A few more days to live
“How long do you think my mother will last?” I asked the doctor.
You ask him “how much time does she have” and he looks back at you and asks you “what are your thoughts, tell me.” He is so positive and has such a great smile that your problems seem almost bearable when he is with you.
He assured family members that “our goal was not to add more days to my mother’s life, but to add more life to her days.” Palliative care suddenly started making sense.
Awaiting death for a loved one is probably the most difficult activity, but doing whatever you can to alleviate the pain brings tremendous joy and satisfaction to the caregiver. Even though palliative care doctors dealt with death every day, they were the most positive people that I have ever met.
The compassion of these doctors to my mom’s suffering somehow bought back different memories from the past; seemingly unrelated events with different characters, but somehow interrelated, came to mind. It was 1976, and I was in the sixth grade. I was 11 years old then, but even after 34 years; I still remember the event like it happened a few days back.
My class teacher told me casually: “Hari, go over to the girl’s school next door and bring the ‘mother’ back to our school.” The “mother” was Mother Teresa.
There was a half-mile dirt road that connected both our schools. I and a friend went over to the Sisters of Charity area to see the mother.
We were introduced to a frail-looking lady who could barely walk straight. Her head was covered with her trademark – a spotless white sari with blue border, she just gave us a friendly nod, and had a gentle smile on her face.
Wrinkles covered her famous face, and she spoke English with a non-Indian accent. She asked us to lead the way. She was probably less than five feet in height. She did not seem divine, just an ordinary person. On the way to our school, she chatted with her fellow sisters of charity. They seemed to treat her like a regular person, no special treatment.
In our school, we had an “assembly” and our principal requested that she give a speech to the whole school. The lines were formed, and we were asked to stay silent.
Her speech was as simple and unimpressive as her dress – she told us about a small six-year-old Calcutta boy who was saving his daily lunch money to give to the mother. The boy went hungry for a week so that he could pass the money to her.
She told us that the five rupees that the boy gave her was more valuable than the millions she had received from others. She told us about family values and seeing Christ in the suffering people. She told us about the “poverty of love” even in the developed nations like the United States – a rich nation, with a lot of homeless in the streets of New York, affluence surrounded by homelessness.
For a Hindu boy who had grown up in luxury, her speech left my 11-year-old mind unfazed. I was disappointed – what is so great about this lady? Why is she talking about receiving lunch money from a boy? Why was every second word “Jesus,” doesn’t she know that half her audience are probably non-Christian? my inner voice screamed. Whatever she said failed to leave a mark on me.
The mother’s message
Mother Teresa saw Jesus in the poor and suffering, and somehow, I understood her message only after losing my own mother. Two seemingly unrelated incidents 32 years apart showed me the greatness of the human spirit. The frail saint and the Pallium India team use different techniques, but both believe in the philosophy that: “the more you give, the more you get.”
Millions of people die of terminal illness in India every day – mostly in pain, uncared for. Moreover, millions of rupees are spent on treatments that yield very little benefit to terminally ill patients. Most of the terminally ill patients cannot afford expensive treatments such as chemotherapy, but would greatly benefit from simple pain management medicine during their last few days.
You can learn more about the World Hospice and Palliative Care Day campaign online, including key messages and downloadable resources.
This article was originally published as part of the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online.