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| Saturday, 01 January 2005 |
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Surviving cancer - with a little help from your friends No one ever forgets the moment when they learn they have cancer. Rhyana Raheem, Prof. of English at the Open University of Sri lanka has not - her's was a sun-drenched afternoon and it marked the beginning of a life-threatening, life-changing journey into the world of cancer and what it takes to be a cancer patient. "No one in the family - mother, aunts, sisters, cousins - ever had breast cancer. What was it in my make-up that had made my cells go haywire? A grave question mark hung over the future - will there, in fact, be a future?" These were the thoughts with which she faced the future and what made things more frightening was the memory of two dear colleagues who had died of cancer. "Both had told me that they could not think of a fate worse than that of cancer. I tried however to bolster myself with thoughts of others-colleagues, teachers, friends - who had survived cancer, and were busily leading active lives." Among the many lessons she learnt in her long fight against this most terrible of diseases was that while cancer is the third largest cause of death in Sri Lanka, there is a serious dearth of information on this disease - particularly in the national languages, Sinhala and Tamil. "Cancer, today, is the modern equivalent of leprosy. Everyone talks about it in hushed terms, and the victims are made to feel that the doom of unmitigated suffering and pain hangs over them. At first, this is what I too tended to believe. But today, thanks to the grace of God, the love and support of my family, my friends and colleagues, and the kindness and professionalism of my doctors, I am back at work and as busy as ever," says professor Raheem. But her experiences also left Prof. Raheem with awareness of an over-whelming need for support services for cancer patients and their families and friends in Sri Lanka, especially among the disadvantaged and marginalised who have to cope with this terrible disease without the advantage of information on medication or coping techniques. When she underwent further treatment in the West, with its large resources of support for patients, the glaring need in Sri lanka was highlighted even further. This need was the impetus behind Prof. Raheem and other like-minded cancer survivors banding together in 2004 to form Mithuruwela, a cancer support network for patients and care givers, committed to providing a better understanding of cancer, especially its treatment regimes and services and coping mechanisms - by sharing experiences and knowledge. Mithuruwela aims to help patients and care-givers make informed decisions about dealing with cancer so that they can look beyond the diagnosis and deal positively with the treatment and its after effects. Since her diagnosis, Prof. Raheem underwent months of treatment that included surgery, chemotherapy as well as radiation treatment. "I lost my appetite-but it came back; I lost my hair, but it grew back. Those of us unfortunate enough to be struck by this disease would do well to remember that cancer treatment today is not what it was in the past. New drugs are available which help alleviate the suffering that once accompanied chemotherapy. Radiation techniques are precise and painless. Having cancer is admittedly a frightening experience but it certainly is not the end of the world." This is the information that Prof. Raheem and her colleagues want to convey to others - support from fellow travellers on this hard route, the belief that pain can be alleviated and third is a chance you can survive. Mithuruwela was begun by a group of five, all survivors. Manned by individual volunteers, the non-profit network focuses on the patient and their care givers. A Management Circle manages its activities and acts as core organisers while doctors and other health care professionals form an Advisory Circle for the Mithuruwela. Members of the Group's Management Circle include Prof. Ryhana Raheem (Prof. of English, Open University), Suhenthiran and Mala Thalayasingam (both Lawyers), Kiran Dhanapala (Economist), Malathy Knight-John (Economist), Sirance Gunawardena (former Principal, Ladies College) and others. Mithuruwela's objectives are: * To establish and sustain a network of volunteers committed to the aims of the organisation. * To provide awareness and a better understanding of cancer, its causes, prevention, treatment regimes and other such aspects through the dissemination of information and easily accessible literature and visual aids via the media. * To mobilise funds for the creation and design of appropriate literature and information in all national languages, and for activities that would help cancer patients, in particular the disadvantaged and the marginalised.In 2005, Mithuruwela plans to launch its dedicated website and begin to implement a comprehensive plan of action. Activities will be implemented in several phases and includes: forming key activity groups, producing and disseminating print and audio-visual information material in all three national languages, creating a network of trained 'befrienders', setting up a cancer hotline, and initiating advocacy work on cancer. Mithruwela's strongest need will a strong and informed network of volunteers who will form the backbone of an information and outreach network. Donations and funding are also needed and will be gratefully accepted but the main need will remain developing a network of volunteers - patients, care givers and others who want to help - to assist cancer patients and care givers through information and support. Mithuruwela tries to address this gap in the survival of cancer patients in Sri Lanka and by doing so, hopes to help alleviate their suffering. Mithuruwela attempts to bring volunteers, people whose lives have been touched by cancer through the disease or its impact on people close to them, and others interested in helping with patients and care givers so both groups can benefit from the interaction. Mituruwela would be grateful for volunteers or funding for the network and welcome your suggestions and support. Please write to: Mithuruwela, The Cancer Support Network, C/o 70/1, Peterson Lane, Colombo 6 or to: [email protected] - Sharm Aboosally |
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