Speaking truth to disease
A new speaking book hopes to give the sick access to information and support in their fight against non-communicable diseases.
As I approach, little voices laughing and playing can be heard from the street. Some are calling out for "Ma" while some are washing their little faces in the small basin in the main room.
"Ma" is Seipati Mtsi, 57 - she is a breast cancer survivor. She had a mastectomy three months ago. It was supposed to be a double mastectomy but tests showed that she had low platelet levels so the next operation is scheduled for next year. A soft spoken short woman dressed in tracksuit pants, a loose fitting t-shirt and a grey sun hat that seems to dwarf her small round face with a tiny nose and a big, warm smile.
Mtsi lives in Orange Farm, 45km south of Johannesburg. The mother of three daughters is also a mother to 60 children by day and to 12 by night. She runs a crèche by day and an orphanage from her house by night for kids who have lost their parents to HIV/Aids and those who have been abandoned.
Mtsi is currently on chemotherapy and - like every other chemotherapy patient she has lost all her hair, her skin is now a shade darker and her fingernails are turning black.
"I didn't know anything about cancer," says Mtsi. What she knew was that she had a painless lump under her arm. "It was only in April this year when the lump moved to my breast that I went to the local clinic where I was referred to Baragwanath hospital."
At Bara she discovered that she had stage three cancer. Cancer treatment is primarily determined by staging. The stage often takes into account the size of the tumour, the number of lymph nodes involved and whether the cancer has spread.
Stage 3 means that the breast cancer has extended to beyond the immediate region of the tumour and may have invaded nearby lymph nodes and muscles, but has not spread to distant organs. Although this stage is considered to be advanced, there are a growing number of effective treatment options.
Mtsi does not seem to understand how the staging process works but knows that stage three is "serious". While walking around the crèche, a crying little boy interrupts us. "His name is Musa, he was dumped in the veld when he was a day old". He is now six years old. "I am the only mother he knows," says Mtsi as she battles her own pain while picking the boy up. It is evident that she has not completely healed from the mastectomy.
Orange Farm is one of South Africa's poorest communities. An attempt to install water meters in the past, which residents said was an attempt at privatisation, ended when over 1 500 residents took to the streets in protest. Police dispersed the crowd with rubber bullets. How then does she manage to keep the orphanage running amidst these adversities and poverty?
"As a registered caregiver, I get a government grant for the children and I plant my own vegetables. It is important for communities to learn how to plant again and have proper knowledge and better nutrition," says Mtsi. She says nutrition curbs these diseases and knowledge is power.
This was echoed by actress and breast cancer survivor Lillian Dube at the launch of the first ever "speaking book" called Growing Your Health recently at the local community hall. Dube did the voice over in this book.
"Most people die from lack of knowledge because these diseases are preventable," says Dube. According to her the book encourages even those who cannot read, and there are many in this community, to learn how to cope with diseases.
The launch was an initiative by the South African Depression and Anxiety Group (SADAG), founded by Zane Wilson to curb the many deaths that occur due to Non Communicative Diseases (NCDs).
NCDs include a range of conditions like cancer, diabetes, cardiovascular disease, hypertension as well as Alzheimer's which contribute to 80% of preventable deaths worldwide, South Africa accounts for 25% of these preventable diseases, according to the World Health Organisation. The four risk factors are tobacco use, unhealthy diet, lack of physical activity and harmful use of alcohol. NCDs are killers second only to HIV according to a report by South African Medical Research Council.
This launch was attended and supported by the health department, The International Council of Nurses and a delegation from Pfizer South Africa and New York. This book was developed jointly by the International Council of Nurses (ICN), Pfizer and the South African Depression and Anxiety Group.
Speaking on behalf of the ministry of health, Dr Sandhya Singh, the director in Chronic Diseases, disabilities and geriatrics spoke of the government's role and responsibility in ensuring that the environment is enabled for such health initiatives to take place.
"Currently there are regulations being put into place to look at the reduction of salt content in food, trans fat monitoring and smoking regulations," Singh says.
Jack Watters, Pfizer's Vice-president for External Medical Affairs says the book will create and raise awareness of health risks in turn preventing diseases. "It is better to treat early. Medicines can only do so much; the best way is to prevent the diseases from happening by education."
Mtsi believes that the book will help people discuss cancer and that awareness will be created in her community. She is also working to start a support group that she hopes will distribute green food parcels to those affected by cancer.
"Most people are unemployed here and do not have money to go to Baragwanath to get more information on how to eat healthy or to grow their food. We can start small with our neighbours and then expand to the rest of the community," says Mtsi.
She hopes to encourage food gardens in the community so to further her dream of green food parcels. Mtsi will take part in the cancer walk taking place in Randburg next Sunday.
Although the speaking book is a great initiative for the mostly illiterate community, one cannot help but wonder how the message is supposed to reach the people because the book is in English. Orange Farm is predominantly a SeSotho and Zulu speaking community of unskilled jobseekers. Hopefully these books can be translated into South African languages to reach a much wider audience.
It is also in this light that one would question whether or not the cure for cancer or any other NCDs is perhaps trapped in the mind of someone who needs and cannot afford an education.