With a little help from my friends
View(s):In 2005, two professional women, both survivors of breast cancer helped form “Mithuruwela”, the first support group for cancer patients and their families in the country. Anne Abayasekara tells their story of their continuing work islandwide
Cancer is still the No.1 dreaded word. According to the National Cancer Institute (NCI), more than 100,000 patients had been admitted to the NCI during the period 2006- 2008 and 52.2% of them were female. Breast cancer was the commonest type of cancer to strike women. Yet any kind of support group for patients or their care-givers, was hardly heard of in our country until, in 2005, two professional women who were survivors of breast cancer – Dr. Ryhana Raheem, Professor of English at the Open University, and Mala Thalayasingham, a lawyer, – teamed up with other survivors and friends to establish “Mithuruwela”, the first support group for cancer patients and their families.
Awareness campaign: Mithuruwela taking their message to the women of Puttalam (above), Batticaloa (left, inset), Eravur (below right) and Nuwara Eliya (below, far right)
How this came about is that when Ryhana went to the US after undergoing surgery here, in the cancer facility in which she had treatment there, she saw posters giving information about Support Groups. “I thought to myself, we need that in Sri Lanka. Personally, I had loving and encouraging support from my family, my colleagues and friends and from my doctors, but I was very aware that not all cancer patients have such support.
“Happily, a mutual friend introduced me to Mala Thalayasingham who had also expressed the desire to form a support group.” The two of them met and `clicked’ and looked round for other like-minded survivors of breast cancer. They struck lucky in finding Sirancee Gunawardena (former Principal of Ladies’ College), and Kiran Dhanapala, both of whom were keen to help.
There were about 30 others at the inaugural meeting, and the first Executive Committee of Mithuruwela consisted of Ryhana, Mala, Sirancee and Kiran. Sirancee drafted their original constitution, later modified. Mithuruwela members went to the Maharagama NIC Hospital where they met Oncologist Dr. Sarath Abeykoon who was immediately receptive to the idea and took them to meet the then Director, Dr. Ariyaratne. “I think Dr. Ariyaratne sensed that we were genuinely in earnest about this project and he gave us his blessing and full support.”
The two main objectives of Mithuruwela were to provide information to patients and care-givers in their mother-tongue, Sinhala and Tamil, and to offer befriending support to those whose lives were affected by cancer.
At the NCI in Maharagama they provided more than 100,000 brochures and pamphlets in all three official languages, giving information on all aspects of the disease, plus services available at the NCI. These were given free to NCI patients and to their visitors.
In 2008, the group produced a DVD on cancer narrated by popular actor, Dr. Henry Jayasena, who related his own experience of cancer. Originally produced in Sinhala, it was dubbed in Tamil and is also given free of charge islandwide to hospitals, cancer units and members of the general public. In 2011 Mithuruwela produced a second DVD, this time on Breast Cancer, for free distribution to all who wished to have a copy.
All members of the group are volunteers. Trained by Sri Lanka Sumithrayo, Mithuruwela members started a Befriending Service for patients and caregivers.
In 2011, befriending services were begun at CCC House, a transit home established for the NCI by the CCC Foundation, Ryhana said. A special feature here is the support provided to children once a week. CCC is a NGO based in Australia and the letters `CCC’ stand for Courage, Compassion and Commitment. They have built a multi-storeyed facility near the Maharagama Hospital, to accommodate patients who require treatments such as radiation. There are rooms for children and a caregiver may stay with a child. For adult women and men, there are dorms. “It’s very clean, very comfortable and free!” Ryhana said.
Patients are sent here from the hospital wards and it can be imagined what a boon such a place must be. “I spend Monday mornings there, talking to women cancer patients, while other Mithuruwela volunteers go on Wednesdays to play with the children,” Ryhana said.
Other activities included conducting Cancer Awareness Programmes for staff and senior students of schools in Colombo. Mithuruwela also works closely with the National Cancer Control Programme (NCCP), a Unit established by the Ministry of Health to promote cancer awareness, prevention and early detection. In 2010 Mithuruwela conducted a training programme for staff of the NCCP to enable them to offer befriending services at the Early Detection Centre in Narahenpita established for the NCCP by the Rotary Club.
In the wake of their contact with patients and caregivers from all parts of the island at the NHI and at Shanthi Niwasa (the transit home in Maharagama), Mithuruwela members realised there was an urgent need for volunteers to engage in reach-out programmes in areas far from Colombo. Their first venture was in the Ratnapura District in October 2011, where an Awareness programme was conducted for male and female employees of Hapugastenne Estate.
This first programme in an outstation was an unqualified success and most encouraging. In November 2011, Mithuruwela was awarded a Project by the WHO to conduct Cancer Awareness Sessions at community level in Sri Lanka, which gave it the green light to go ahead. So, in 2011 and 2012, sessions were held in Hatton, Nuwara Eliya, Alawwa, Elpitiya, Puttalam, Batticaloa and Pundaloya.
Just back from sessions in Pundaloya, Mala’s face lit up as she spoke of the welcome they had received. Besides all this, similar sessions have been conducted in Colombo at the Airtel Head Office (for staff), at the Centre for Policy Analysis (for female staff), at Virtusa Inc. Colombo Office (for female staff), at Cinnamon Grand (for female associates), and at St. Michael’s, Polwatte for its Mothers’ Union.
An Awareness Session usually consists of an opening address by a Mithuruwela survivor who speaks frankly of her own experience of cancer – how it was detected, the treatment regimes she had to undergo, and how she had coped with the disease. Since Ryhana speaks fluent Tamil and Mala is an excellent communicator in Sinhala which is her mother-tongue, the two of them take it in turn to address audiences in the appropriate language.
This might be followed by either a presentation by a doctor who outlines medical aspects of cancer, and/or the screening of a DVD produced by the NCCP. A nurse from the NCCP is generally present to explain breast self-examination in detail. A question and answer session concludes the proceedings. Informative brochures and leaflets on breast cancer are also distributed to all participants. Ryhana also mentioned that at such sessions, a questionnaire is given out to ascertain audience knowledge of, and attitudes to, cancer and a record is kept of the findings from these surveys.
At a session held in Puttalam in March 2012, for example, Mithuruwela had the unique experience of addressing, for the first time, an audience composed entirely of Muslim women. “Hitherto,” said Ryhana, “our experience had been with Sinhala and Tamil communities and no member of the Muslim community had been present, so we had an opportunity to gain insights into a community we had not interacted with before. The proceedings were conducted entirely in Tamil.”
The majority of the audience in Puttalam were married women. Age-wise, 50% of them were over 40 years of age and 50% were below the age of 50. The majority had had a basic education up to GCE Ordinary Level, while a small number (22.6%), had completed the GCE Advanced Level examination or exams beyond this level. It was interesting to see that in response to the question, “Do you know what cancer is?” 86.3% of the Muslim women answered `Yes’, whereas in sessions conducted in Elpitiya with a mixed audience of Sinhala and Tamil women, only 49.5% of the Sinhalese and 42.1% of the Tamils had responded with an `Yes’. To the question, “Is cancer contagious?” 4.5% of the Muslims had answered `Yes’ , with 7.4% of the Sinhalese and 42.1% of the Tamils, saying `Yes.’
There were nine questions in all, with varying responses from the three communities. In answer to the question, “Is cancer a disease to be ashamed of?”, not a single Muslim woman had answered in the affirmative, and only 4.2 of the Sinhalese had said `yes’, but 73.6% of the Tamil audience thought it gave cause for shame. It’s worth noting that in all communities, whether Tamil, Muslim or Sinhala, and in all areas – whether in the estate sector at Elpitiya, the villages of Puttalam, the rural agricultural area of Vellaveli and the semi-urban district of Eravur – the response was most positive and appreciative and definitely indicated that the good work done by Mithuruwela has to be an ongoing process that spreads to all parts of the island.
The concerted effort to help Sri Lankan women to understand and learn how to cope with cancer cannot be too highly commended. We can but salute all the dedicated volunteers who willingly give of their time and expertise to be part of that effort. Their price is is far above rubies!
Follow @timesonlinelk
comments powered by Disqus