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Mithuruwela, a newly launched cancer support network offers patients psychological help to deal with the disease
When listening does the healing
By Sharm Aboosally
No one ever forgets the moment when they learnt they had cancer. Ryhana Raheem, Professor of English at the Open University of Sri Lanka, has not - hers 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 our family had 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.

"Cancer, 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 aware of an overwhelming need for support services for cancer patients and their families and friends, especially among the disadvantaged and marginalised. When she underwent further treatment abroad, with its large resources of support for patients, the glaring need in Sri Lanka was highlighted even more. This need was the impetus behind Prof. Raheem and other like-minded cancer survivors banding together last year to form Mithuruwela, a cancer support network for patients and care-givers, committed to providing a better understanding of cancer.

Since her diagnosis, Prof. Raheem underwent treatment that included surgery, chemotherapy as well as radiation. "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 Professor 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 there is a chance you can survive.

Mithuruwela which was initiated by five 'survivors', comprises a Management Circle which includes Prof. Ryhana Raheem, Suhenthiran and Mala Thalayasingam (Lawyers), Kiran Dhanapala (Economist), Malathy Knight-John (Economist), Sirancee Gunawardena (former Principal, Ladies' College) and many more and an

Advisory Circle consisting of doctors and other health care professionals.
Mithuruwela's objectives are:

To establish and sustain a network of volunteers committed to the aims of the organization.
To provide awareness and a better understanding of cancer, its causes, prevention, treatment 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.

Mithuruwela began its work by conducting an informal needs assessment by talking to patients particularly, low-income patients, doctors and organisations working on cancer related issues. The basis for conducting this needs assessment was their own experiences with cancer, their interaction with other patients and their discussions with doctors and health care professionals.

The results were startling - there was an overwhelming need among patients for information - not only about treatment but also on coping with side effects. Another need expressed was the importance of raising awareness about symptoms of cancer, including where and how to get checked.

This year, Mithuruwela plans to launch its website and implement a comprehensive plan of action, focussing on developing information material for patients. 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.

Mithuruwela’s action plan
Phase I: Reaching out
Mithuruwela will collect printed literature and information from international and national sources on both cancer prevention or awareness and treatment options and services; and identify and develop literature suitable for the Sri Lankan socio-cultural/economic milieu.

The next step is the establishment of an Advisory Board (to review, guide and monitor the production of appropriate literature and information) and activity groups including an information production group (authors, editors, translators, production personnel etc).

Phase II: Volunteering
Mithuruwela will deploy volunteers on an experimental basis, with monitoring and evaluation of their impact, and finally a formal volunteer network will be established.

Phase III: Help line
Deployment of suitable volunteers with bilingual communication skills and establishment of a hotline facility for those affected by cancer are important goals.

Phase IV: Future plans
Proposed work includes to review and document key efforts undertaken by different people relating to cancer in Sri Lanka (e.g. community health post-graduate student research); conduct a needs assessment of out and in-patients; and establish an Information Centre to facilitate information dissemination.

Cancer and other forms of non-communicable diseases continue to increase in Sri Lanka - bringing with them attendant problems including financial and psychological problems which accompany dealing with long-term, often fatal diseases. Care and treatment can be long and often painful - mental strength and quality of life often becoming defining advantages in the fight for life.

Cancer is made more terrible because of its uncertainties and the constant fear of a recurrence. Treatment, which tries to kill cancer cells, may affect healthy cells - resulting in painful side effects. To do this in an atmosphere of ignorance would be twice as hard for patient and care-giver. Mithuruwela tries to address this gap in the treatment of cancer patients in Sri Lanka and by doing so, help alleviate their suffering.

Mithuruwela would be grateful for volunteers or funding for their network and welcomes suggestions and support. Those interested could write to: Treasurer, Mithuruwela, 70/1 Peterson Lane, Colombo 6. Email Mithuruwela@hotmail.com or visit their website: www.mithuruwela.blogspot.com.

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