A life well lived and loved | Daily News
Bandula Jayasekera::

A life well lived and loved

Bandula when  he was a diplomat
Bandula when he was a diplomat

Bandula Jayasekera is a man of many parts. But he is mostly known for his roles as a Senior Journalist, Newspaper Editor and Diplomat. He has served as a senior journalist, a columnist for several newspapers and was the Editor-in-Chief of the Daily News in 2006–2007. He also served as Director General, President’s Office Media Unit for some time during President Mahinda Rajapaksa’s tenure and Director General (Public Communication) at the External Affairs Ministry. His last foray in media was at Sirasa\MTV where he worked until recently as a talk show host, including for the popular ‘Pathikada’ programme.

As a diplomat he served in Australia, Canada and also as Sri Lanka’s Deputy Permanent Representative to the UN in New York. Throughout his career, either as a journalist or diplomat, Jayasekera’s writing and his sharp tongue attracted controversy. Those who knew him know that a battle always brought the best out of him. Jayasekera known among colleagues and friends as BJ is waging another battle today. This is unlike any he had faced before. BJ was diagnosed with Myelodysplastic Syndrome, a type of blood cancer in July 2019. His efforts for a cure have not materialized and in BJ’s own words, he is now a man ‘sentenced to die’ as doctors have predicted that his life in this world will not go beyond July this year. BJ was known for his tireless work to achieve either his goals or visions. But in the face of death does BJ have anything more to offer, to the country, to society?

Excerpts of an interview with Bandula Jayasekera from the Palliative Care Centre at Karapitiya Hospital, Galle:

BJ: Dying is one of life’s unique experiences; talking about it is difficult for some to initiate and hard for others to hear. I have suffered enough and I like to go as soon as possible. However, until I can I would like to talk about terminally ill people, raise awareness about palliative care, attract more funding and support to build facilities like the one here, a brainchild of senior Cancer Surgeon Dr. Chrysantha Perera. The facilities here are amazing and truly world class.

The doctors and other staff go beyond their official duty to make patients and family members as comfortable as possible. Unfortunately, in Sri Lanka, the focus on palliative care is minimal. Recently the Health Ministry said there is an alarming surge in the detection of cancer patients with 80 patients detected daily. Because of inadequate palliative care, the people who suffer most are from the poorer sections of the society. The rich might be able to have good facilities with their money. But what about the poor people?

This facility is truly world class and is free of charge. This is why I call Dr. Perera a living god. It is not all government money that sustains this facility. Lot of people from outside have helped by way of funding and other efforts. Dr. Perera and the medical staff have also spent their own money to keep people comfortable as well as address the needs of family members of patients. Now I am trying to raise awareness to help these efforts to sustain this facility and also come up with similar facilities elsewhere in the country. This will be my goal during the limited time I have.

DN: Why is palliative care so important for a terminally ill patient?

BJ: It is important to realize that where we die matters. Just as our living environment influences our quality of life, so does our dying environment, affecting how we and our families experience death. As a terminally ill patient, I want to have a more than dignified death, a comfortable one and that is what I expect from palliative care. It also gives family members peace of mind, because at places like this they can see how well their loved ones are taken care of. Also, the counselling available here helps both patients and family members to prepare for what is to come.

DN: Did you have an understanding about palliative care and dedicated palliative care facilities before?

BJ: I had heard about palliative care, but did not have a proper understanding. I did not know about this place either. Dr Chitra Weerakkody told me about this place and guided me. She introduced me to Dr. Chrysantha, Dr. Gihan Piyasiri and Dr. Rohan Pulleperuma. When I came to see the place for the first time, I was taken by surprise to see the beautiful and peaceful surrounding and the facilities available. However, I felt saddened too because people come here to die.

First, I stayed here for one day and then I thought I will stay for five days. As time went on, I felt very comfortable and was taken care of very well. The medical staff here try to make your death as comfortable as possible. In some overseas countries they have a lot of places like this. Thanks to Dr. Chrysantha this initiative has started and more places are coming up. But we need more. Also, outside, some doctors try to keep us alive. I appreciate their efforts, but that is suffering. They should let us go. Here, the difference is that both sides know what we are up against. So here, doctors and other medical staff try to make our death or days leading to it as comfortable as possible.

DN: How was your cancer detected and what did you do afterwards?

BJ: A friend of mine who was watching ‘Pathikada’ from New York called me one day. He told me, “You are having shortness of breath. Why deny it. Go to a doctor.” That is how I went to a doctor in the first place. I was diagnosed with Myelodysplastic Syndrome, a type of blood cancer in July 2019. I was told a bone marrow transplant was the only option. The doctors said it has to be done in India or Singapore. But because of infections, I opted for Singapore. I could not bear the cost so I appealed for help. Print media including papers at Lake House, electronic media, social media and friends carried my appeal. I received a lot of funding and am grateful to those who helped. Doctors in Sri Lanka were preparing me well. But unfortunately, COVID came and there was trouble in finding a donor as well. Finally, when I went to Singapore, the doctors there said it was too late, the cancer has advanced and the transplant will not help. They told me I was terminally ill.

DN: What thoughts crossed your mind then?

BJ: When doctors told me, “You are terminally ill,” the question sprang to my mind. Why me? But then you have to accept it. You come to terms with it. This is what I have done. I thought about my Mother who in her small ways taught us about life and anithya (impermanence). My brother has been a tower of strength as well as my family and friends. I am not saying that I was brave. I am not brave. Now I take it one day at a time.

DN: Now what do you do in your spare time?

BJ: I try to raise awareness on the above subject as I said earlier. Now I am getting weaker and I can’t write anymore. Also, I do colouring and it is keeping me occupied. A friend of mine fixed Netflix and I watch a movie at times. I watch the animals, birds who roam freely outside my window in the garden of this wonderful facility and it relaxes me.

DN: What do you like most, being a Diplomat or a Journalist?

BJ: I like both. I think in my small way I contributed to my country. I have served my nation in my small way. But I do not want to dwell on the past now. Refusing to let go prolongs life. “It is time to Let Go.”

DN: Several questions on international relations, the UN and politics go unanswered.

BJ: I hardly read news now. Doctors have advised me to get out of this clutter. I live in the moment. Trying to let go.

DN: What about your stint as Editor of the Daily News?

BJ: Of course, I do not dwell on the past. But the experience was valuable. I had a good team and we worked together well. When I look back, I feel happy.

DN: Any advice for budding journalists?

BJ: Get out of the internet. Don’t just copy and paste. Go to the field, do research and raise awareness, give something beneficial to the society.

DN: Any other thoughts?

BJ: I think authorities should do more to help cancer patients and terminally ill patients. I do not think all roads should lead to Maharagama. At least there should be one hospital in each province dedicated to treat people with cancer. Maharagama hospital is too congested now. I have personally experienced what this can do to patients.

President Gotabaya Rajapaksa called me several times. I told him we should aggressively promote bone marrow transplant in state hospitals to benefit the poor. Also, we do not have a bone marrow registry and I told him to look into that as well. He told me that he will speak to Dr. Jayantha Balawardene at KDU. I think the KDU is the best place to do that as they have the facilities and the personnel. I gave a speech recently at the KDU about my experiences as a terminally ill patient when they opened new palliative care facility. I spoke to the students of the Sabaragamuwa Medical Faculty too after a doctor invited me.

I never made money unfairly. I lived a simple life. I collected human beings who later came to my help. I have not worked for one year now. But I have a wonderful chairman who still pays my salary. He keeps my home fires burning. I know so many people who have held high positions being asked to leave after being diagnosed with terminal illness. My last appeal is to raise awareness, help improve palliative care and help medical specialists to improve the quality of life of poor terminally ill patients and their families.

(The writer appreciates the contributions made by .D.P. Wickremesinghe, Manjula Fernando, Chaminda Perera and Disna Mudalige)

 


What end-of-life care involves?

Consultant Oncological Surgeon Dr. Chrysantha Perera who is head of the fully-fledged Palliative Care Centre at Karapitiya Hospital, Galle, explains the need for palliative care:

“With increasing numbers of aging and terminally ill patients, our healthcare systems are now under tremendous pressure. Palliative care has long remained a pressing need in Sri Lanka and is fast becoming a vital necessity that can no longer be overlooked in the Sri Lankan health care system. This particular health care provisioning service is already at quite an advanced stage in many countries around the world, but the Sri Lankan health care sector has not yet succeeded in providing adequate palliative care service to people suffering from incurable illnesses.”

“So, I decided to take a lead role in this noble endeavour to provide palliative care services to patients suffering from incurable diseases and those who are leading the last stages of their lives. This, I believe, will not only help improve the quality of care for the patients, but also assist their near and dear ones who would otherwise expend much energy, time and resources on caring for their incurable family members at great cost to themselves.”

What is palliative care?

It is a type of care for people with a life-limiting illness. Palliative care is unique in that it uses a team-oriented approach to provide quality medical care and pain management, as well as emotional and spiritual support specific to each patient. Unlike curative health care, the goal of palliative care is to help manage a patient’s pain and symptoms to allow them to live their last days pain-free and with dignity. Another benefit is to provide support to family members. This is done through a variety of programmes, including support groups and counselling.

The multidisciplinary team of palliative care specialists includes consultants, doctors, psychologists, nurses, counsellors, physiotherapists, occupational therapists, social workers, spiritual workers and volunteers.

The Palliative Care Centre at Karapitiya

It is located adjoining the Galle Cancer Hospital and was inaugurated in 2020. The work on the project which commenced in June 2019 was completed with a cost of Rs. 70 million donated by philanthropists and with the comprehensive labour contribution of Sri Lanka Navy.

The centre provides physical, psychological, psychosocial and spiritual care to patients with terminal illnesses.

The centre has been built with striking architectural features on a picturesque landscape with the appearance of an elegant five star hotel. It consists of individual rooms, ward rooms which can accommodate 30 patients at a time, two spacious treatment and consultation rooms, and facilities for administrative and other supplementary services.

A huge pond in front of the centre adds to the aesthetic beauty and animal such as ducks, birds, rabbits roam freely. Anyone who needs palliative care for their terminally ill family members or friends can contact the centre.

Contact Details

Palliative Clinic 091-3132555; Clinic Room 091-2232176, Ext: 2315; Clinic Nursing Officer 0718895307; Hospital 0912232176, 0912232276, 0912232250, EXT: 2465 (Palliative Care Centre)