Cancer survivor Benard Osang’ir: ‘I know I am not supposed to be alive today, but I refused to die’. PHOTO | ANTHONY OMUYA
What you need to know:
Benard Osang’ir, 33, narrates his brave fight with rare disease that has cost him and his family millions so far.
I was 26-years-old when I was first diagnosed with multiple myeloma (plasma cell dyscracia), a very rare type of cancer, which attacks the bone marrow.
A haematologist (a doctor who specialises in diseases of the blood) at Kenyatta National Hospital (KNH) told me that the disease could have been with me for five years before it started revealing itself as a boil on my head.
Multiple myeloma increases the production of plasma cells in the body hence inhibiting the growth of the red and white cells.
The first boil stayed for a month then it started recurring after every two weeks and eventually my entire head was infested with pus-filled swellings. That was in 2005.
That did not stop. I started nose bleeding daily and there was this day when I bled for over 24 hours. I was dying but I did not know that I had cancer until 2008.
I was still a student at the Kenya Power Training School and my older sister, who lives in Mombasa, fetched me from Busia and took me to hospital. I am the sixth born in a family of eight.
I remember collapsing on arrival at my sister’s home. Doctors at a Mombasa hospital said my haemoglobin level was at 2.7, too low, and I needed urgent blood transfusion. That was in 2006.
Doctors gave me at most six months to live. I was supposed to get 35 pints of blood but upon the eighth transfusion I reacted to the blood and it became impossible for me to be put under new medication. There was no diagnosis until 2008, at KNH.
In that period, between 2005 and 2008, my family spent about Sh8 million on my treatment.
My parents sold their property and my older siblings borrowed loans to see me through medication. I had been treated in over 10 hospitals around the country before cancer was rightfully diagnosed.
Being away from my village for months prompted neighbours to claim that I had died of HIV — some had seen or heard of my ‘‘incurable disease’ — and my family was hiding my body.
They asked that my body be brought back home for burial, begging the need for cancer awareness in rural Kenya.
I want my life story to be used to create awareness of cancer and that a patient can live a long, productive life if diagnosed early. I know I am not supposed to be alive today but I refused to die.
At KNH doctors said that I propably had two conditions — HIV and blood cancer — the symptoms were very similar. They later ruled out HIV.
For me, staying in the hospital without knowing what I was suffering from was quite devastating.
Multiple myeloma attacks people aged over 40 in Africa and over 60 on other continents like America, which made it difficult for doctors to diagnose my condition since I was in my early 20s. I am 33 years of age now.
This type of cancer is rare in Kenya such that I had to wait for another two weeks after proper diagnosis for a chemotherapy drug to be imported from South Africa.
I speak with a lot of hope. I was elated after being told that I had multiple myeloma instead and not HIV.
Cancer can be treated, not HIV. However, the financial burden of managing the disease is taking a toll on me.
If it is costing me an arm and a leg to afford medication — what about poor patients in Kenyan villages? I currently live in Nairobi. I am required to take two drugs per month, which are working for me.
Thalidomide agent costs Sh20,000 for a one month dose of 200 milligrams. Dexamethasone costs me another Sh15,000 for 80 tablets to be taken once a day.
These chemotherapy drugs come with side effects like increased appetite and adding weight.
The disease has also distorted my memory, but being the economist and statistician that I am at Neo-Africa Consultants I write a lot so as not to miss a point.
I am yet to marry but I will love to have a family of my own at some point though getting a partner is another matter all together.
I pray that I get a wife soon. If you tell someone that you have cancer they shy away, mainly due to lack of information.
They think that you will die tomorrow. Many are unwilling to share your sorrow, but of course they will not say so to my face.
Heavy expenses
The heavy expenses that come with cancer treatment have seen me stop some development projects. I was building a home but it has since stalled. On the brighter side, my cancer is the best experience I have had.
I now have a bigger heart; I empathise with the sick. My family does not have a history of the disease and neither have I smoked tobacco nor imbibed alcohol. The disease has enabled me to change people’s lives, I can’t be happier.
My one wish though is for the government to make cancer treatment free like is the case with HIV and tuberculosis.
I have never undergone radiotherapy. I wish I could go for a bone marrow transplant, which is said to offer a solution to my condition, but I can’t afford the Sh7 million fee.
During the World Cancer Day in February, I met Dr Joseph Kibachio, the head of non-communicable diseases at the Health Ministry. He said that the government had made “major strides in combating cancer”.
Dr Kibachio said that the government had partnered with four pharmaceutical firms to produce chemotherapy drugs and supply them to patients at subsidised rates.
He said that common cancers like breast, cervical and prostate are very visible due to high occurrence, but it does not mean that rare cancers like multiple myelomas are being overlooked.
He said that the government was not ignoring rare cancers. I was also consoled by the fact that the government has partnered with pharmaceuticals to produce chemotherapy drugs for myeloma and other cancers at subsidized costs.
But more can be done to create awareness about cancer in rural areas.
