1. “Fighting” cancer for 7 years, 3 months and 4 days has been what I call “lethal clarity” in one of my sold painting artworks.
I realise(d) how it grabs a hold of the fabric of one’s existence that soon after diagnosis your life is almost inspeparable from the one of many chronic illnesses that have continued to puzzle medical advancement for close to 3000 years now. An emperor of all maladies. It’s like a death sentence.
Honestly, with the kinds of losses I have taken, the deaths I have had to bear over the years (especially since last year in May), I don’t have the courage to pep-talk it as otherwise. Maybe it is, for many people (families and their diagnosed loved ones; a majority who cannot “afford the disease”, it is a death sentence).
And it was for me as well, a death sentence, has been. It was also a life sentence for me.
A sentence engraved in the stones and stars, to be or not to be, cancer became the iron-clad crab wound eating me marvelously, the worm that sometimes slowly threaded its rot into my being, the lethality of coming to face with one of the oldest fears known to man:
fear of the unknown, the fear of waiting…
I once wrote,
“Kungoja ndio the worst…
Kungoja dhiki, nafsi ku—pass.”
There’s a gnawing, a grinding to a tragic halt of the mortal coil every human that gets a cancer diagnosis goes through. It, it lumps you into a mound of mud, a fabric of wood, suckled into by the long—beaked black birds and weevils (tumours).
Nyanyodhi sodho fuondeni, to hulo piny e chuodho. Chuodho mak yieng’. Buru ma iye kipong’. Thuth chami loki buru. Ihadhi ka lee e lwet jodwar ma kech ohewo laro lemo.
There’s a way you go the flower shop for your own funeral(s) – everyday after that. There’s a way that radiologist’s report from the room with skull plaque: AUTHORIZED PERSONNEL ONLY.
Yet, I wonder, if a cancer patient (or one yet to be diagnosed) is just, a personnel. A sticker note on the room with magic. The room where they study the universe inside the body on charcoal grey papers and bloody tubes.
That’s a why I named my reports Cures In Eulogy? and created a series of artworks and an album out of it, the first one that started to talk about my cancer journey.
It seemed like the eulogy I wrote and left it printing at some village cyber cafe in Kiplombe Eldoret on 2016.
It had a name. Birth. Ellipsis. Three dots. The end.
And three words to my daughter;
“I hope you find home, Awuor. When you do, I will look inside myself and see you, find you.”
Because that report, it spells death with the precision of fate. And it’s an overkill, it is the thing that kills many before cancer starts it’s nuke war on them.
There’s a pain that follows.
A redacted classification of fate as an overcast of death. And this isn’t probably the time to blurt out we are all dying. This kind of dying, of cancer, the first split of time after receiving that report — that pain you can’t name!
2. And for years I too didn’t know how to talk about it ever. Maybe I did. Because there’s, at the core of it, no insulation in breaking the news if a cancer diagnosis. I mean.
I could have said, “I have cancer.”
I didn’t. It took 2 years for mom to know. Some friends and family only got to know it much later, especially when I first talked about it publicly around 2015 in a post that attempted to explain my formerly imagery-laden poems tributing my journey.
And si I hear them saying stuff:
“If they find out I am having cancer, I am putting my affairs in order (like Bob did). I’ll probably be more pro-euthanasia…”
Look, no one has that kind of luxury with cancer. And even progressively liberal folks and societies, euthanasia isn’t a snap on the fingers. You may think it easy. But it is not. Will probably be a tough challenge.
There’s a certain existential crisis with which cancer diagnosis spirals on you (and it is worse towards late stage, end of life stages). It is a complex web of grief and its processes. It is possible to grace through it, gaining clarity and forming your meanings and purpose and finding your existential compass, but in my opinion from my experience, one does not escape the grip of this dilemma of life:
And when I did, talk about it (my cancer), I had already grieved myself to death. I had even almost considered myself dead and buried in 2015. I had already manifested my own funeral, the flowering of people into our home whenever there was a cry, and it was likely to be me. And twice home throbbed with wailers while I was there laying on mkeka, the Walkman slowly pulling the tape the surges of Ramogi, Omore and Collela bumping in headphones in my head. And it had already eaten into me. I was a splinter of bones and skin, a bat-man! I was already the eulogy in homes and especially market centre, whenever i passed with the cows they would whisper:
“Orach. Cancer ok tugo. Tuoni rach, mae ok kwo!”
And it didn’t even move me. Cause I too, was waiting.
And I refused to die. Those angels came many times on the roof. Near death experience without any medical intervention. I had left Nairobi for home, the sole purpose: to go and die and cut the costs of transporting my lifeless body inside a shinny bronze casket. I had gone home with a silent DNR. And death too refused to take me — I was ugly. It was ugly!
And it is unfortunately sad, the programming of our awareness to grief and the deep throat pain on our midst just because of the highlighted cases.
3. I have talked about cancer as if I were an expert at it, and maybe privy to me experiencing and surviving it, I am. Sometimes you get branded a “motivational speaker” and “life coach” and gikmakamago. But I have come to own to my creations of these words and the energy and intent behind them. I have received incredibly healing love right back at me not just from people directly affected by cancer but those going through life’s needle differently from sickness.
Sometimes that voices your story but also reflects a collection of a people’s journeys. The silent ones that nobody talks about. The ones that go without any glimmer of notice. The nobodies. The inconsequential ones. Sometimes it creates, for me, a little way to contribute to the speaking and advocacy of issues surrounding cancer and health care but mostly humanizing the whole process and attempting to give language that many are now finding useful in daily transactions with life – even outside cancer.
I have volunteered to work in pediatric cancer ward. And in 3 months I had one of my worst empathy burnouts last year. There was an afternoon I watched them pick 11 bodies, ripe in cancer, like the dandelion tree had wasted them away – kids, kids that didn’t even have a “fighting chance”. And those too are deaths I have survived. Those too are things that have made me question the worth of my survivorship with so much guilt and pain.
4. So when I talk(ed) about it, it is the narrative of my whole life. There’s no nakedness in me that cancer has not stained.
“Awuor mbese, omin chilo.”
It’s like, the doctor’s mouth pronouncing you the news. You have cancer. And all you could do is hear, fireflies crackling at the back of your head. Your whole life projecting on that wall of consciousness, like an old TV box, like those cinemas in the 90s, like a stolen script onto a scene — a movie within itself. And it’s blur yet so clear. And it’s true yet so hallucinating. And it’s lethal yet so tragically beautiful!
And soon after, I became an instant oncology researcher. I’ve known a lot about my cancer that I am asked if I am a medic. And yes, cancer, if you are lucky to have a “fighting chance” turns an ordinary human into a resource — it should make you something beautiful too, in my own persuasions.
Then you become;
an anticipated grief
a lost cause
a wait and see
a life to be lived
a breath to detonate
The language. The language of cancer is militant, morbid, tek-nical, mostly withdrawn and alien from the understanding of almost the entire population that survive it, ironical, hypothetical. Cancer’s only known language that many seem to understand its grasp is just, death.
And I get it.
One fam, who had taken me in. After a year of persuading dani to let her take care of her sister’s child.
She once said, “Prognosis Mar liver cancer is usually very poor. Wek uru ketho pesa nono.”
This only hit me when we received my friend from India straight into the ICU in KNH and the politics became centred on the vanity of trying to (still) treat him. They asked his mama why she is keeping her son in that condition when there is clearly no chance of him ever getting up, or better.
It seems that from the very onset of things, the die already was cast. Eh, me niliambiwa tu point-blank, “Haina haja nani. Utatembea tu soon.”
Here’s is where you should listen to my album Journey and Soul more. Classic flawed album about my cancer story.
And for years I have struggled to write it. I have struggled to call my pain. I have struggled to humanize myself and my cancer and my journey. And so I am not even sensational because of “high profiled cases”. I had seen most of them in hospital corridors under heavy guard and disguise. Some I had shared the plane to India and the hospital’s with. Some I had witnessed fight, even shared stories with.
And it is unfortunately sad, the programming of our awareness to grief and the deep throat pain in our midst just because of the highlighted cases.
5. Often I wonder, how it is for many people who don’t even have this kind of platform to plug into whenever they feel low.
I have been the one person to show up for myself. For years, I struggled with cancer alone. And the net effect is in the way it has dismantled my vulnerability of being able to ask for help when I need it. It has rendered me powerless and useless moat of the times. It has really made feel unworthy and less of a human many times. I have been the, “If I can’t help this out, no one would,” I have been a nobody, till what was left for me is to pack my rugs having lost everything in the city and go home and wait for it.
ad I think that no matter how independent and self absorbed one is, at some point it may be you to make things happen yet most times – also – one always need another person’s help.
I have also been a miracle.
If anything, by all means I should have been long dead. And many people have given me breath in ways I cannot name and reciprocate or be grateful enough for. And I have breathed life into people too – because that’s what you do when you have so much life and yet living on a time crunch.
I’m resilient as shit. The things I have survived besides cancer, things in this life, acha tu. I find myself thinking how ugly it must be for many people cause I remember my many years of deep isolation and life mocking shame, indescribable pain, dark mental disorientation and the trail of financial crisis that crowns or all.
6. I have been keen to watch, listen and hear the ignorance with which people peddle cancer narratives. And maybe as an economist and a researcher, that’s a valuable resource to exploit in terms of developing sensitization policies and programs or understanding how to shift the national psyche towards an enlightened, informed, health conscious and aware thinking. Maybe that could be helpful in tailoring specific interventions for different demographical units.
But as a cancer survivor most of them have shocked and disgusted me.
Why is it so hard for someone to say, “I don’t know what to say. Or I have no idea what this is”?
Why must cyberspace offer so much reckless breakdown of simple things as honesty whenever we do not know?
My truth is, the reasons why cancer hasn’t been cured yet are varied but tend to circle four key points;
(a) if one is alive and has cells actively replicating, dying and passing genetic information, one technically stands a chance of developing cancer. Red more on Telomere
(b) the best possible way to get rid of bad, rogue, cancerous cells without endangering the good ones (which is what chemo does, chemotherapy hasn’t yet been developed to discriminate the good cells while killing the bad ones. That’s why chemo and lost cancer drugs are at kaerge also poisonous to the body)
(c) almost all kinds of food, agents and contacts have potential risk value. Carcinogens are in things that some we consider normal parts of our food.
(d) the imagination that there is a cure, because its probably out there and the fact that the universe (read nature) has its own remedies or tends to know how to cure itself
There was a time when people would look over the fence and whisper, “Gino chamo jokang’ane tharali.”
And the talking wouldn’t stop until it hits them home too. Until “gino” knocks a hodi home and you too realise you’re expendable.
There was a time when it was a rich man’s disease. Those with sugary lifestyles. Now, the worst, it is on the poor. And it’s rearing its ugly stomach into them like the bottomless pit of hunger and greed. And there’s no known defense. It eats money like nonsense and eats the flesh of those without monies and insurance policies till nothing is left to be eaten.
There was a time cancer became the new HIV/AIDS. And it had a name. The C-word.
Tuo Marach. Ayaki Mayaka.
And it became easier for many to wear its disguise instead of being defiled by stigma associated with HIV/AIDS because a lot of people still think only promiscuous sexual activities causes HIV. Now there’s HPV and cervical cancer and the deep entanglement of causations.
There was a time when money was thought to be its cure. You could globe trot in fancy shuttle and be a medical tourist and maybe be under gentle hands of expert oncologists in state of the art facilities and ultra modern treatment plans. Now with all that, one may still come back home, a silent mound of things that couldn’t become (possible) – a mute clay of cancer’s defilement.
There was a time when it was one of the incurable diseases that many religious foks believe were prophesized in scriptural end times, ones that plagues the earth in scorching mystery. There was a time it would be called God’s equalizer, of the sparkling poor and the filthy rich. But even God must be having such a sick sense of humor to use a debilitating disease as cancer to mark the scorecard. What a tragic playwright!
There was a time when the old were prone to catching it. Now a day old is incubated. Already fighting it. Born into the motif of flaws. Terribly poor with the odds from their own beginnings.
There was a time when it was in the things we eat and our indulgences. Sugar. Milk. Wheat. Meat. Chemicals. Cigarettes. Alcohol… But the paradox will choke you to a beautiful death. Now everything is unsafe. Being human, born alive, is the first qualification of unsafe.
There was a time you could hear conspiracies. The big pharma. The cures in alternative treatment. The future is herbal. Go marijuatherapy. Stop chemo. Go natural. Cut these foods. Now whichever you swing, you still may end up with a burnt bet. Very bad for the business of being alive. Some say the figures are inflated. That the easiest way to get cancer is to go for screening. You go tu just like this, and you get it. So folks, especially young peeps, cats are scared mad!
There was a time when it was called all manner of things. Now it is cancer. In whole of Africa, cancer probably has no name. And we might say it is a “recent arrival”, yet perhaps its the data that got here late. We still struggle fitting our data properly even for the sole purpose of documenting cancer as cause of death.
In Kenya, it’s huko namba 3. Inachezea juu ya pool na cardiovascular and infectious diseases. They say 35k a year. I think it is more.
There’s a time you’d scream declare cancer a national disaster. Then wuot?
Ati because of profiled deaths.
There was a time when you’d want a state of the art cancer speciality hospital. Maybe one in each county. Then wuot?
You see, cancer diagnostics should be the key here. And that means a proper, functional, equipped, capable, staffed and resourced primary health care. Without which we escape the route and build skyscraper models like the ones littering Nairobi skylines. Yet the basic questions such as food security, basic universal education and health care… still roam at large unattended to.
That makes such an envisioned speciality facility a referral hub for special cases and ultimate treatment centre. That strengthens the ladder of hospital levels building their capacities to handles cases that they can and refer the others that demand more than they can offer to these specialised hospitals. That means doctors and nurses and hospital staff are properly remunerated, trained, regularly retrained to adapt with new changes and technology, held accountable and put to task.
That means that we realise that cancer is not just a diseases but who we are.
We, humans, people, are the worst kind of cancer!
The tumour is our own biggest undoing. Our installation of power to a body of vultures fleshing us apart. Our complacency. Our easy to tune models of thinking through adverts, school system, gratification, media enticements, ego… The way we subbotage, clobber and wave war with so much vengeance on each other. The manner in which wrve forgotten love, kindness, gratitude, respect and in turn put so much power in material wealth, fear, violence, lies, pride… The way we treat nature with so much contempt and cruelty. The way we get stringed in the noises of our own hypocrisy and ironies.
Look at us.
Look at how cancerous we are.
Before we name cancer. Before we mourn when it’s highlighted and profiled. Before we go back to not asking, individually, ourselves:
“What’s my cancer? What cancer am I? How am I killing myself and others?”
Before we give power to names, oh the things in names! How cancer carries more death than flu. How death is dreadful than birth and yet what separates those two scenes in the grand screenplay of things is the large, boundless, dark void of the unknown – one which we devise incessantly to conquer and understand.
Before cancer, this is us.
I’ll end this here.
In this note, are personal opinions, some may lean on the expert side. I take responsibility of any hurting it may give an impression of and declare that that is honestly not my intention.
If you are a cancer survivor, like me, I see you and i send you love.
If you are a cancer survivor, like caregivers and their support systems, I acknowledge your efforts, humanity and strength.
If you’ve lost a loved one to cancer, may healing, grace and love be your portion.
If you are waiting, for a diagnosis, for a review, for an appointment. I don’t know what best to say, other than hope that you see that we all are trying to just breathe and be alive.
If you’re going through it, fighting it, like me. Ah, may we learn to write our sentences unapologetically authentic and beautiful and inspiring.
If you’re going about life with your own share of heartbreaks, pains, darkness, questions… that may seem unique to only you, there’s help that can be done, and I hope you find it in you and others. And if there isn’t anything else to be done, may love see you through.
And to all who’ve left us, I cherish you through remembrance, honor, memory, pain, regrets, lessons and life after yours.
With love, O.