You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.
— Cicely Saunders
The first time I saw Kanchan was at the medical social work department. There was something mesmerizing about her. She was standing on one leg; the other had been amputated. She held a crutch to help her maintain her balance and had the cutest curly mop of hair on her head. Kanchan’s charm was irresistible and magical; she always wore a big smile on her face. The word kanchan literally means: “one that is shining bright like gold.” I was instantly drawn toward her. She was accompanied by her younger sister from whom I learned that the sisters were seeking financial support to buy a leg prosthesis, which explained why they were at the medical social work department.
On enquiring further, I learned that she had been in an accident a few years ago and suffered multiple fractures in her left leg. The bones in her leg had to be put together using a plate. Following surgery, she began putting the pieces of her life back together, believing the worst was behind her. Kanchan underwent physiotherapy and was soon back on her feet. There was no significant discomfort, but she continued to experience a nagging pain inside her bone. Unfortunately, the cause of the pain was diagnosed as osteosarcoma! This time, her leg had to be amputated as part of her treatment. She received chemotherapy (free of cost) at a city hospital. After her PET scan showed that she was free of cancer, she was advised to use a leg prosthesis, the cost of which was very high. She and her family could not afford it. Her father had walked out on her mother many years ago. Furthermore, the family had no regular source of income. Hence, they sought financial help from different sources. I, too, wanted to help her so I reached out to my friends and family. With their assistance, I was able to collect money for Kanchan. She finally gathered enough money to buy the leg prosthesis.
Our first meeting was the beginning of a very special bond between us. The first time she walked a few steps with the prosthesis, she sent me a video and then spoke to me. She was ecstatic! Kanchan was just a young girl seeking happiness for herself, her mother, and her sister. One of the things she dreamed of was to earn and build a small home for the three of them. The loss of a leg did not slow her down. Her enthusiasm to claim her life back was heartwarming! I promised to help her to the best of my ability. It was a few months before her next follow-up. She would call, and we would talk about her life, dreams, and recovery. The oncologist had assured her that her treatment was curative. This gave her hope to look forward to the future. Moreover, she was a civil engineer by profession and was very keen to work. I shared her resume with a few people. She was selected for an interview with a multinational corporation. She was on top of the world! “Now I can look after my mother and sister,” she said.
During our conversations, she would tell me about her dreams and disappointments. I continued to encourage her. She was doing well for about 10 months. Then one day she called to say, “Ma’am, bad news. It’s back.” My heart skipped a beat. She was heartbroken but she did not give up, nor did I ever give up on her emotionally. She was put on intravenous chemotherapy once again. She was extremely concerned about losing her hair. A non-governmental organization (NGO) arranged for a wig which was couriered to her home in Nagpur. She wore the wig and shared her picture with me. She looked beautiful!
Unfortunately, this time the cancer had returned with a vengeance. The disease had metastasized to the lungs and the amount of disease had increased significantly. Active cancer treatment was stopped, and she was told to return to her home in Nagpur. She was put on “best supportive care.”
The golden girl started deteriorating. She couldn’t talk, couldn’t sleep, had coughing bouts which would not stop, and she had to be put on oxygen support as well. I was in touch with her throughout this ordeal. She would text me when she had the strength, and we would make small talk. At times, she would tell her younger sister, “Call Vandana ma’am. I want to hear her voice.” She was unable to speak but I would talk to her. Our conversations became almost entirely one-sided. I did the talking and she only listened. During one of these conversations, she texted that she liked playing the guitar. With the help of an NGO, a guitar was procured and couriered to her home in Nagpur.
As the disease worsened, she experienced delirium and hallucinations. She had multiple lesions in her brain. Even during the hallucinations, she thought of me! During one such episode, she imagined it was my birthday and as per her sister, she searched on the internet because she wanted to have a cake delivered to me. Her body was shutting down and she was cognitively compromised. Her sister kept me informed. I will always remember my last conversation with Kanchan. She had lost bowel control, had bed sores, could not move an inch, and was in excruciating pain. Her sister called to say that Kanchan wanted to talk. In that last conversation, I asked her if the pain was too much and if she was ready to leave and her answer was, “Haan” (Yes).
;)
She died on June 10, 2019.
She moved on to a realm where she was no longer in pain. She was just 23 years old.
I am a palliative care counselor, and the essence of palliative care is that we never give up on the patient even when they are told, “Nothing can be done now.” When the person is at the end of their life, care should not stop.[1,2] There is always something that can be done. If cure is not possible, care is! Treatment is not only limited to medicines, it also involves supporting the patient spiritually and emotionally because every patient, even when they are at the end of their life, matters. Just because a patient is dying, we do not give up on them. If we can create an environment where the terminally ill are heard and can feel included, we can say, in the true sense, that we treated our patients well.
Kanchan mattered and always will!
Sharing screen shots of chats from her last few days.
About the patient
Kanchan was a resident of Nagpur, a city in Maharashtra, India. She was 22 years old at the time of diagnosis. Kanchan was a larger-than-life young woman who wanted to reach for the sky. She loved dressing up and playing the guitar. She had completed her civil engineering and was looking forward to becoming financially independent. She is survived by her mother and a younger sister who were her primary caregivers.
About the author
Ms. Vandana Mahajan is a palliative care counselor. She is associated with the Mumbai-based NGO Cope with Cancer/Madat Charitable Trust. She works as a volunteer counselor in the thoracic disease management group at the Tata Memorial Hospital and also provides cancer counseling across India via online platforms. She is a cancer survivor too!
E-mail: [email protected]
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
REFERENCES
1. Asthana S, Bhatia S, Dhoundiyal R, Labani SP, Garg R, Bhatnagar S Quality of life and needs of the Indian advanced cancer patients receiving palliative care. Cancer Res Stat Treat 2019;2:138–44.
2. Chaturvedi SK Problems and needs of patients in palliative care. Cancer Res Stat Treat 2020;3:115.
