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Life & Work with Lanka Jayasuriya-Dissanayake

Today we’d like to introduce you to Lanka Jayasuriya-Dissanayake.

Hi Lanka, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstories.
My sister Indira was just 31 years old when she was diagnosed with breast cancer. It was a real shock, as she had no family history of the disease. My sister has always wanted to have a family and so after the treatment was completed and was given the all-clear – she had her daughter, Thilini, now 9 years old.

Three years later when she was six months pregnant with her second child, she began experiencing pains and was diagnosed with secondary breast cancer. Her son Dylan, now a healthy six-year-old, was delivered prematurely by cesarean section on 15 May 2015, so that my sister could begin her treatment as soon as possible.

Cancer diagnosis itself is a traumatic experience and this was no different for us. Her breast lump was detected and when it turned out to be cancer it shattered all of us. She fought through until the end with a smile. The care she received from the hospital in the UK, the staff, and the other supporting members in the hospital was amazing.

She was unconscious for 7 days and my father was at her bedside holding her hand every single day with the rest of the family. We saw her peaceful end. And this is what prompted my father to start an initiative in Sri Lanka.

My sister died on the 2 November 2016: Her Funeral was on the 11 November 2016 and we set up an organization to support patients and their families with cancer on the 27 November 2017. We have not looked back since then.

Since starting Indira Cancer Trust in 2016, to date, there are over 20 projects that support patients with cancer and their families. This includes Sri Lanka’s first helpline for cancer, livelihood support, children’s scholarship scheme, children’s birthday program, help with medications, investigations, equipment, provision of dry rations which means providing food items (groceries), programs that support children with cancer and much more.

There are also several landmark projects that are being done as the world’s first. The biggest project yet for Indira cancer Trust is “Suwa Arana” Sri Lanka’s first Paediatric Palliative Care Centre that is being built near the Apeksha Hospital Maharagama and we hope to open the doors to children in February 2023.

Indira Cancer Trust also started Sri Lanka’s first hair and wig program in July 2017 and to date, Indira Cancer Trust has collected 121,267 ponytails weighing 14,000kg and makes natural hair wigs for free distribution to patients with cancer who undergo chemotherapy – Indira cancer Trust has given over 2600 wigs so far.

The process of wig making has been upgraded from hand wefted wigs to machine wefted wigs through a new program – “Sonduru Diriyawanthi”.

Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
Indira Cancer Trust is the youngest organization in Sri Lanka working in the field of cancer and we are just 5 years old. All our achievements to date are a result of the support we received.

All programs are handled by a very committed team that includes 3 staff members, 10 volunteer coordinators, and a pool of over 600 volunteers this is the strength of the organization and all program implementation is handled by the staff and coordinators.

Patients are placed at the center of our services and the support we receive from well-wishers and donors enables us to continue our work. Maintaining Transparency as an organization is key to us all funds raised directly are tagged to programs and continuous assessment occurs both qualitatively and quantitatively with monthly financial accounts and audits done.

CANCER – This is a taboo word in Sri Lanka and one that instills so much fear and apprehension for anyone who utters the word – Why is this? Because cancer is associated with death, so much suffering, hair loss, and being shunned away from society. With advancements in treatment and early detection, cancer is curable. Unfortunately, losing a breast through surgery and hair loss has many implications that a woman has to face from society.

This is the exact reason that there is a stigma about talking about it in public. With a loss of a breast, there is now the option of breast reconstruction and if this option is not available then a breast prosthesis can be given. Unfortunately, these two issues have created much stigma, and overcoming this stigma and seeking assistance and treatment in a timely manner is a major concern and struggle.

The challenges we face are always met positively and so far we have been able to overcome them all. I am a firm believer in the fact that when things are done with good intentions everything will work out well! There have been no major struggles apart from the issue of stigma in the past and currently, there are two challenges – The first is we have embarked on the biggest project yet for Indira Cancer Trust and a nationally important project by setting up Suwa Arana – Sri Lanka’s first pediatric Palliative Care center.

We have raised 50% of the funds needed and the remaining 50% need to be raised amidst the challenging economic times. But again we are so thankful to everyone who has come forward to support and I am sure many more will also support us so that we open the doors of Suwa Arana to children with cancer by February 2023. The other challenge is the increasing number of patients requesting support.

Again we have always supported patients through our existing system and have also revamped the system to address the COVID situation. The COVID situation as well as the current economic crisis we are facing in Sri Lanka has also created challenging situations of funds from donors being channeled to different other urgent priorities.

The constant support we get from our major partners including the National Cancer Control Program of the Ministry of health, professional colleges including the college of oncologists, and other civil society organizations and patient groups have enabled Indira cancer Trust to face any challenge that crosses its path.

Appreciate you sharing that. What else should we know about what you do?
Looking back at our life, I think both my sister and I are very fortunate to have the parents we had who looked into all our needs and gave us a solid foundation by instilling the correct values in us.

Our world was turned upside down though in 1989 because this was the year that my father was involved in the first privatization in Sri Lanka and there was a threat to his life which we as a family physically witnessed. This prompted our parents to send us to the UK.

Having been raised in a very conservative and close family set up the move to a boarding school in the UK was difficult. I was 15 years old and my sister was only 12. This boarding school was run by the Moravian church and we were the only two girls of Asian origin.

We missed home so much but managed our time and learned to be independent. It was this experience in the UK that has helped us to be molded into the individuals that we are today together with the solid foundation given by my parents. Being a Doctor was always a childhood dream. In retrospect, it may be because I saw my mother work as a doctor and had multiple opportunities to help her with her regular work at the Colombo Municipal Council as well as the Voluntary work she did outside her work hours.

Medicine is about HEALING. Being in the medical profession has given me an opportunity to do exactly that. My medical career has spanned over 24 years and I have had many opportunities to work in different settings which I am most thankful for. After graduating from Leeds University in the UK in 1998 and working in the UK for 11/2 I returned to Sri Lanka and worked at the National Hospital of Sri Lanka, Nawaloka Hospital, Apollo Hospitals, Sri Lanka Red Cross Society, and finally at the World Health Organisation.

I worked at WHO for over 8 years looking after the areas of Non Communicable diseases including Cancer, the Elderly, Disability, Road Traffic Injuries, and Tobacco-free initiatives. This gave me a solid foundation of the global scenarios and best practices of initiatives that would support the country. Many skills were also gained during that tenure including different kinds of training to build capacity.

I also completed my MBA in Health care Services just prior to entering the UN system and this helped me enhance my knowledge outside of medicine. So for me, medicine is my passion and an opportunity to be granted to help and care for others.

In summary,  I am a medical graduate with a Bachelor of Medicine and Bachelor of Surgery (MBChB) from Leeds University, UK followed by an MBA in Healthcare Sciences from Manipal University, India. I currently serve as the Chairperson/Trustee of Indira Cancer Trust, which is a Non-Governmental Organisation supporting patients with cancer and their families with over 20 projects. Additionally, I also work as a director at Surya Foundation, Gamini Dissanayake Foundation & NCD Alliance Lanka.

I also have a special interest in patients’ rights and responsibilities and am involved at the national level to initiate this process. With Indira cancer Trust setting up Sri Lanka’s first pediatric palliative care center in Sri Lanka, Suwa Arana there is also a special interest in palliative & End of life care.

I am the elder daughter of the former speaker of parliament Hon Karu Jayasuriya and Dr. Vasantha Jayasuriya and the wife of former Minister of plantation industries, Navin Dissanayake. We have two daughters Samadhee and Mahita Dissanayake.

Are there any books, apps, podcasts, or blogs that help you do your best?
There are no special items that can be mentioned. But always reading around the subject matter and keeping up to date on specific subjects related to cancer through the WHO app and blog as well as the fundraising school podcast is done.

For leisure, I enjoy listening to on purpose by Jay Shetty.

Contact Info:

  • Email: indiracancertrust@gmail.com
  • Website: www.indiracancertrust.org
  • Instagram: @indira_cancer_trust
  • Facebook: @indiracancertrust
  • Twitter: @indira_trust
  • Youtube: Indira cancer Trust
  • TikTok: @indiracancertrust

Image Credits
Indiracancer Trust Services, Martyn, and Thilini

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