Cancer; If I Write About it Too Much It is Because I want Answers
My grandma, Anna, the one I am named after died at a Nairobi hospital in 2013. She had stomach cancer. The days prior, her grandchildren, family, surrounded her with much love and showered her with good wishes. She was a tiny woman carrying bowls and bowls of love. She spoiled her immediate grandchildren with a dedication to family that I still find hard to wrap around. Anna was there emotionally and physically to tell you ‘it is okay’ when life was beating you to a mushy pulp. She worked and worked until the soil that nurtured her and her family could no longer respond to her quest to produce more.
Anna was the sister to my maternal grandma who died in 1994. I recall, as a child, we looked forward to visiting Anna. She had a kiosk. There was candy in plenty. She boiled or fried eggs for us. Those eggs came from a place that is rich and well nurtured.
We had a very good relationship. First, she never treated me as a child. We had adult conversations and that made me feel smothered to a fault. I was not surprised that we were in touch almost always even as an adult.
When she was brought to Nairobi, sick, I was mortified. I visited her, pretended to be strong because I am a big girl now. It was almost as if she wasn’t there. She was tiny, her eyes distant. Her voice came from far far away. She was leaving but not quite. She was there and not there.
Naturally, we both have a disappearing tendency. We are there but not quite. We have strong views about things that we do not necessary share publicly. Our joys are measured. Our pain can be painfully private and that tends to annoy those around us. We can be ailing but we prefer treating ourselves with herbs before we decide it is time to see the doctor. In short we hate medicine. The irony is not lost on us because we have bodies that betray our quest for anything but medicine. We are genuinely concerned about people we care for. We are present and that helps us in reconciling our emotional conversations especially when they do not make sense. Simply, the fact that you are present means you know, you have walked the path, dedicated time and resources. In this place you can say ‘I am here. Talk to me” I remember when I gave birth to my first born son, underweight, she came to the city to teach me how to care of him, ensuring that the room was warm enough. In essence, Anna was me in many ways.
When she died of cancer I felt betrayed on so many levels. I had been vocal in my journalism especially where cancer was concerned. I am the kind who will push and push just so that this disease is covered. When Anna died, I wondered, how long can we speak about a disease and still things remain the same? Why is it that cancer treatment in Kenya remains way out of reach for thousands of us? How can it be that even with good jobs you are not guaranteed that with cancer you can access the treatment you desire? Why do we think it is okay for people to know death is stalking them when they get cancer?
These questions keep coming back to me and when a colleague of mine died of cancer, such a young beautiful soul, I felt, again the stubbing pain that cancer inflicts on those who are left behind.
There is something about her death that was ominous, something that stalks your faith in systems, something excruciatingly familiar.
Unfortunate.
In our circle of friends, we discussed cancer, how tragic it was that she had gone so fast, some felt, they did not even know she was ailing. It was cancer of the colon. Cancer is a taker. Your survival very much depends on which country you are in, how much money is at your disposal, your support systems and faith will go a long way. It exhausts the mind. It depletes finances and in some cases renders families penniless. The Math is mind-boggling.
Cancer is the third biggest killer in Kenya. There is still no national registry but it is estimated that there are between 22,000 and 41,000 new cancer cases each year. In a country of 45 million plus, there are only 12 health facilities that diagnose and treat cancer countrywide. Even with promises to make treatment accessible, 12 facilities do not begin to answer the country’s thirst for accessible and affordable treatment.
Treatment is anything between USD$2,500 to USD$10,000 dollars for surgery, drugs, radiation and doctors’ fees. To the poor, to those who are not insured, this is their first test to deciding whether they will complete treatment or wait until they can raise enough through family, friends or selling property. This disease can be vicious. It waits not.
If you are unlucky to find the money, then you know how this story ends. A painful slow death stalks you day after day gnawing at your core, testing your faith, wasting you in a way only known to those who have come face to face with it. I can say now, because people close and distant have shared their journeys on my blog http://afyawatch.co.ke, there are no actual words that describe the journey of waiting for your death. That chamber that echoes and echoes endlessly.
The fact that cancer strips you of the one thing that we must never let go off, hope, it drives most to the edge. I have held conversations with myself about just what cancer is and what it does to your mind especially. That battle with the mind is so powerful, it can consume you before cancer does.
It is easy to offer words of encouragement and throw in Biblical truths. All welcome by the way. But it is another to be ruminating about a disease that has no respect for you, a disease that rips you apart and throws you to tumble dry in a cold cold kind of way. When systems fail you and your mind does too, then what is death if it is not lose yourself in such a manner? Cancer kills you so many times before your actual death. If you are poor you die many times over.
Tragic
The worst tragedy you will ever know about a disease is when you are faced with the limitations that come in the way of you getting well. The limitations I have shared are not new. The promises are not new either.
What we can do is remain aware of what is possible. One of the things I know for sure is that we need political will to have proper health systems that are respectful of us. It is not enough to sell our souls during campaigns for shillings and cents when the bigger picture is to elect leaders who have a level of seriousness in healthcare.
We need a leadership that is alive to the fact that effective cancer testing and treatment is needed as a matter of urgency. Such facilities cannot be concentrated in just big cities. Every Kenyan life should count for something. The country needs to train and equip more doctors. Our dalliances with healthcare personnel remains worryingly telling of our attitude towards provision of quality services. Political rhetoric will not take us to the promised land, blackmail definitely will ensure we remain stuck in a battle of words.
When we, the public are drawn into the ugliness of political blackmail, exchanging vitriol on social media, we are giving life to a beast that will take ages to slay. Mine, is to stand up and be counted as a Kenyan who wants nothing less but the best of healthcare.
The same viciousness that was put in raising awareness against communicable diseases, is the same one we need in creating awareness about cancer. I remember as a young journalist, covering HIV and how that felt. Digging the archives and coming across content on people who got the virus in the 80’s, the stigma was something you could touch with your hands. It was elaborate, creeping on every sphere of your life. I recall coming across stories about people who committed suicide. Journalists called it the Sex Disease. In a culture that indulges and denies the responsibility that comes with sex, stigma is something the afflicted carried on their shoulders.
It stalked you to your death. You were buried in a polythene bag just incase the virus crawled back from 6 feet under and preyed on the living.
You can read part of the journey here; http://www.internewskenya.org/summaries/internews53d09cfb42t98r.pdf
Today, the tide has changed. Research, funding, training all these things mean a lot if you want impact. The same seriousness that was put to HIV can be replicated in cancer. If you think I am exaggerating on awareness creation, just ask 5 women in your circle the last time they did a pap smear. Personally, I have. The responses range between ‘I would rather not know’ to ‘I haven’t done it’.
A policy, no matter how sound and promising is not worth the ink it is written on, if it is not implemented. We need to implement the country’s first cancer treatment, control and prevention policy that was created in 2011. If you have time do read that epic piece of paper, followed by the 2012 Cancer Act, which was amended in 2015. Once you do, imagine its implementation. For me, when that time comes, when we have reliable systems in place, it will unfurl a world of possibilities for me, for thousands of Kenyans who have struggled with the why, it will rekindle our faith in justice in our healthcare.
For Anne, the one I am named after, I can only pray that she continues to rest in peace. And that her death, continues to ignite in me the passion, the raw dedication to raising my voice about cancer because, yes, we all have a right to access the best in healthcare. We should never be satisfied with average.
