Living with cancer during the coronavirus

It hit me like a shock wave. The world stopped, leaving me completely alone and lost.

It was the morning of the 15 June, 2017. “Your liver has developed lesions, the markings of a cancer,” said the doctor in a solemn voice. “You will need a liver transplant if you want to survive.”

Finally, I could speak. “How much would that cost?” I asked. He answered my question with a question of his own: “Do you have 40 lakhs?”

I am from the Tsum Valley, and the first generation from my family that went to school. I have always wanted to be an agent of positive change in my society and country, and to build a better future for the sacred valley where I was born.

Rinzin Norbu Lama on documentary filming assignment in 2013.

During 2015 earthquake, I helped coordinate rescue and relief services and provide essential supplies to remote Tsum Nubri communities. That is why in 2017 I was nominated by the Naya Shakti Party as a candidate for mayor for my rural municipality in Tsum. Campaigning was not easy, I had to walk up and down the mountains to meet constituents, we ate whatever we found, and slept wherever we could.

For years, I made a living guiding trekkers through the remote mountains of my beyul. They would often be out of breath climbing the high trails, but I was never exhausted myself. The campaigning should have made me more fit, but I felt strangely weak. Something was not right with my body.

After the elections, I walked four days to reach Kathmandu to see my doctor. I had to find a matching organ donor. And where would I find Rs4 million?

From Kathmandu, the news of the diagnosis spread through my village. A young monk from Tsum sent me a message, offering to donate a lobe of his liver. With his act of kindness came hope, encouragement, and a raised possibility that I might make it.

Unfortunately, he was not a compatible match. A friend offered. Then another. Indeed, I found out there are many kind and selfless people out there, and felt honoured and grateful for their bodhichitta compassion.

But I learnt that Nepal’s law only allowed close relatives to be organ  donors. This made it next to impossible for me to have a life-saving operation in my own country. But then a miracle happened.

My own brother, a Buddhist Lama came forward as a donor and he was a match. This man with a pure and compassionate heart offered to save my life by giving me a part of his.

Given the stage of my disease, it was not possible to have the surgery in Nepal, and I had to go to India. But first, I had to make it through all the government red tape. It took three weeks to first prove my citizenship, then prepare and present documents to the district office and its health department. I had to obtain a no objection letter from the medical board, and then collect documents from the Ministry of Health, Foreign Affairs, and the Embassy of Nepal in New Delhi.

In the meantime, my liver was deteriorating. Then there was the issue about money. My godfather and mother, who once funded my education in Kathmandu, stepped in once more to raise the money to pay for my medical costs.

Through my go-fund me campaign, people from all walks of life supported me emotionally and financially, making my transplant possible. It reinforces my belief that life is all about love and compassion.

I live near Swayambhu, and I can feel the spiritual energy of the shrine every day. While in India for the treatment, I took the 10 hour journey to Dharmasala and met His Holiness the Dalai Lama. His words “I will bless you and pray for you” lifted my spirits, making me feel physically stronger. His personal Amchi gave me traditional medicine using Sowa-Rigpa.

It has been a year and a half now since my transplant. But in March, I had symptoms of jaundice which meant my liver was not functioning as it should. On the day after Nepal went into COVID-19 lockdown, I was admitted into Teaching Hospital.

I was under high immune suppression medication, but was kept in the Emergency Room for six hours, at risk of opportunistic infections. In the evening they sent me to a COVID-19 isolation room even though I had not been tested, and had no fever or symptoms. A COVID-19 patient was nearby, coughing.

After complaining to the nurse and doctor-in-charge, they finally moved me to a general ward. There is no teamwork in this hospital, the level of care was poor and ad hoc. The patient next to me had TB. Soon enough, I contracted pneumonia. I was rescued from the hospital just in time, and am recovering at the home of my American god-parents near Kathmandu.

Among the many lessons I have learnt from my ordeal is that Nepal needs to revise its laws. Many patients and their families are already struggling with their illness and lack of money, the least the state can do is make the paperwork easier.

The law about limiting organ donors to immediate family was made to prevent commercial organ trade, but what if there are willing donors who are not family, like in my case?

It is also the responsibility of the state to make transplants affordable and accessible. I wish Prime Minister K P Oli a speedy recovery from his second kidney transplant, but he may not be aware of how difficult it is to navigate the bureaucracy for a transplant in this country.

I do not want others to go through what I did. The disease is bad enough, but for ordinary people like us everything is made much more difficult. The government needs to amend its laws and policies to allow affordable transplants in state-of-the-art facilities, so Nepalis do not have to go abroad. It would save costs for patient families, and prevent large amounts of money from leaving the country.

There are many who emotionally, physically and financially helped me through this process, and I cannot thank them enough. Especially my soulmate Chand, who left her job and family to be with me in Delhi. I pray for the long life of all of these incredibly generous people. They have given me a ray of hope as I experience and explore the impermanence of life. It has no beginning and no end. Our body is a host and the soul lives on forever.

Rinzin Norbu Lama is a documentary filmmaker and youth politician from Samajbadi Party Nepal.

Read also: 

Even more secluded sanctuary by Rinzin Norbu Lama

One day in the life of Mingmar by Rinzin Norbu Lama

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