It is November 15, 2011. I am at the football field trench, in college. Everything is spinning, so fast. It’s a sporty evening. It’s cold. A little. It’s hot as hell. It’s nothing. Everything. That evening, I would be pushed on a gurney, after class, by my colleagues. And with that my life changed from a Financial Derivative lecture to dextrose, 1-litre of blood drips and several pushes into the radiology department – the room with an “Authorised Staff Only” plaque with dry red skull tags on the door.
It has been 5 years since that day.
The day I was diagnosed with a second stage inoperable, disresectable primary liver cancer marked the beginning of uncertainties. You step into a world of dry statistics and medical jargon. Here is a disease that continues to puzzle medical advancement. The language used in cancer corridors holds significant stigma. Susan Sontag once wrote that some metaphors are unsavoury and distorting. The language grows the feeling of death inside your veins, scars your dreams into dry bones of pain, reminds you of how vain you have become. It opens graves, and forces you to stare straight into your soul. It’s is an ‘Imperial Affliction’ as once said John Green.
One marker pen on ultrasound image can remodel your lifetime steps. You were just an 18-year old boy eager to pursue academic dreams and become an economics professor, but cancer comes and tells you that, from today, your future is reduced to ‘ifs’ and ‘whens’.
Doctors brainstorm with medical notes, before they come to you at the board room. I had talked to Dr. Clay, the day I was discharged and would go back to my notes in school. I was a residence student that means I lived in campus, yet something, everything wasn’t right. I was off-key, my notes were hardly readable, and they sounded behind. I was ahead, with this unimaginable insight into where they were leading. Calculus and Topology and Numerical Methods. Weren’t they coincidental? Survival rate? Prognosis? Staging?
I called mama. I remember it was a long talk. I saw the pain in her voice. I saw, yes, see. I told her, “Ma’. Please travel tonight. There’s something I should hear a doctor’s report, but with you.”
“Kaw kwe iketie chunyi, Wuora. Nyasaye ong’eyo [Be at peace with yourself, my son. Only God knows of our days],” she replied.
We are born into a lot of possibilities, but no one ever knows what we’ll become. Grans had seen me grow from a little, toothless, small-eyed, 2.5kg boy. I was going to be a blessing to our family. I was built with the hope of, “One day, all my 3 dead sons would come bless me,” as she prayed at night. My uncles hardly lived to bring the joy of a mother educating her sons. For a very long time, I didn’t move out of that pain. I wished I be something, and by November, I was probably just 4-years away from brighter dreams. I was right on the footsteps of JaPlan, my grandfather.
The whole team was professional, their lips movingly spelled my diagnosis, but I didn’t notice. The next day I woke up to a breakfast table, with my family all emotional. I’m reminded that I have hepatocellular carcinoma. A clinic is scheduled next week to plan my questions. I ask myself questions. Did I bring this to myself? Was I drinking too much, smoking too much, and the family didn’t know? The mystery.
It took me 4 months and 3 weeks contemplating whether to begin my chemotherapy as planned. I reluctantly filled my deferral forms to settle on medication. But what medication? I was only on pain management. It’s uncertain to say I was on treatment.
Then in 2012 I suffered a coma. 2012. This was one of the darkest years of my life. My cancer worsened. My immunity threatened to shut. My liver was enlarging, tumours spreading to the spleen. Every cell in my body was fighting. Cancer screamed around me. A recurrent flash. Hospital letterheads. News. Bulletins. Magazines. Social media. Church. School. Brain. Liver. Blood. Rare type of cancer. Battle. Journey. Bone. Ovarian. Cervical. Screening. Campaigns. Breast. Bills. Politics. State funerals! An unending scream.
I’m not new to cancer. All my life, cancer has been like a river eating into my banks. Cancer. I first read it on one of the thickest books in home library. It fascinated me. Ms. Lindsey – my best friend, Kevin’s mom, our teacher of English – would help us do our homework. She died as we ran our hands on her bald head. Cancer. My little sister cousin would pass two weeks before his 12th birthday. Sickle cell. Not far from cancer.
Jadudi, my high school friend whom we went to the same college together would be diagnosed with brain cancer. Emann is fierce and strong, and even though his leaves fell off, his roots dug deep into the soil, and his trunk stood still. He was determined to fight this, and he fought it.
Cancer. Why? After 1-week in intensive care in 2012 June, my birth month, I would pick my daughter’s pencil and write, “Tumors are terrible things to share a body with.” She’s 4. Maybe one day she’ll understand. Her mom died of sickle cell, cancer’s cousin. This is a story I will tell you one day.
There are empty dots in our lives we cannot fill. I have lived on hope, faith, and courage. But it is not easy. My two insurance policies have been sucked dry. Family savings depleted by medical bills. I have fearful nights. Sometimes I want to sleep forever. Traumatic twist of events has left me with a burden of weight in my heart. I saw love and escaped. I watched pain in friends’ eyes, knowing they cannot possibly save me. I saw my body as a mockery. I have felt like living inside some grand tumour – determinedly scarring me.
My life is a miracle. My story has broken laws, defied data. Mine is God. Not in the way my family raised me for but my own nurture that, out there are great purposes and every day was mine to open my arms and breathe into the stars, pain with souls, heal every day of my life!
I had my second coma early this year.
I have kept my story to myself for too long. Introversion and quietude slacked my efforts. If I wrote about it, through my poetry, I used metaphors to hide myself and my struggles from the world. Friends would remark that my poetry is complex. But it was all there. To see you had to untangle the metaphors.
After my second coma, I decided it was now a time to ‘un-metaphor’ my story. I don’t have to live solely for myself. The hope and perseverance that has kept me through the dungeons of uncertainty can also help other people to cultivate courage. Those with wrecked lives, deferred dreams, frailty bodies, oppressed spirits; my story is your story. If you are going through a difficult period in your life, you are not alone. You have silent prayers from me, from people who don’t even know you.
“Dad. You’re right. Tumors are terrible things to share a body with. But you, you are terrifyingly strong, amazingly beautiful. I Love You.”
“I See You. You’re your own donor, Love. I had one liver, I thought I should give her to you. I am disappointed to learn I wouldn’t live yet I want to see you till the very end. Happy Birthday my Son.”
“Ochuka is built on strong spiritual character.”
“Happy birthday, Doc. You’re the strongest person I know.”
“I had your beat since I met you. Hurts me, I feel terrible, that I haven’t done your song yet. We’ll do this album, bro. You will beat this.”
“This kind of resilience is, it cannot be found elsewhere. The kind that is solely yours. Don’t take your 5-years of strength for granted, even if it ends tomorrow! Otenga!”
Words. From doctors, from friends, from family, from fellow sojourners. I have received 2712 text messages since I was diagnosed. I’m thankful for everything. Even the words never said, trust me I know. I feel you, even if you never said anything. I’m thankful for web links sent, for prayer meetings held, food therapy recommended, cattle sold for my sake, just to see I survive.
“Your mindset is proclaimed by your reflective inspiration. I don’t know if I have had a patient your match, if there is, you are insistently amazing. I wish one day you become a doctor.”
Her French accent meant that her words will remain with me for the rest of my life.
I celebrated my 23rd birthday this year, and in November 18th it will be 5 years since that fateful evening. How time moves! I have been in battle for almost 5 years now. It’s not yet over. A few months ago, I’d go without drugs or any hospital visit. I would climb uphill with Grans three cows. With an 80-year old cooking uji, and seasoning dek, my life seemed pretty, until my ultrasound suggested an abnormality. Scans showed tumours. Biopsies confirmed cancer, through to check-up. And that is how a moment in life can almost completely change your life just like cancer became the centre of my life. But I have been in the struggle, I am one firm believer that when someone is diagnosed with cancer they inescapably become cancer survivors and I am determined to win this battle and be part of the process that will proclaim our collective bid and strive to have a cancer free society because I don’t want my story to end with a fundraiser and an inspiration but a hope to remember.
The cancer at stage 3 has now spread to the brain and I need to go to India next month November 22, 2016 for treatment which the doctors are saying would improve my condition. In the first phase of my treatment, I am to do a resection of part of the liver affected by tumours, brachytherapy and target radiotherapy for the brain tumours. I dream of a day when my cancer will be remitted, a day when target therapy will shrink the tumours. My focus is on long-term survival. The situation is still risky, but my Model for End Stage Liver Disease Score has improved. I am not promised of relief. No one is. I have been prepared for anything for a long time.
Over the years I have encountered so many inefficiencies in our health system. I dream of a day when we’ll have public cancer centres across the country, when we will have affordable, efficient and accessible treatment services to a ‘mere citizen’. Charity foundations and organizations are overwhelmed.
I enjoin my voice with individuals, platforms, and organizations committed to making this cancer ordeal less painful than it has been for me and thousands of other people. With greater focus on the rural areas from where cancer patients climb the hospital system, exhausting options until all they have is India, but with loads of financial burdens. Our insurance industry, whether it is NHIF or private insurers, need to revisit the packages they offer.
It is my conviction that my cancer journey should not end with me getting treatment in India. I need my story, my experience from this journey, to become an embodiment of hope, a reference of victory over cancer by strength and unity I have and will receive. And since cancer has rarely been won singlehandedly, I want to be part of the process of helping other people cope and make it through. The journey to India will be an experience of rediscovery to me personally and also a resource to bring back home to share with people in my situation.
This is why I and fellow cancer survivors have joined Kisumu Cancer Support Group which with the experience and resource we’ve gained from our journey, our stories will continue to do more than just end with our own personal achievements. I will be part of the team that will initiate a cancer campaign program which I foresee as the birth of a Kenya’s first National Cancer Society so that we consolidate partnership, evaluation and bring on board proper structures that are currently not there but are necessary for the battle against cancer.
Someday we will almost certainly express those which cannot be expressed by words, for it is art that has lit and survived the candle of conversations since humanness. Life is a quiet storm with surprises unbound by our own nature of vulnerability. In the experience of grand loss, grief and ill health we should instead of letting these reinventions steal our moments into despair and defeat, we should instead retrieve kind reflections about ourselves, through resilience, courage and hope.
It has already been time long ago. Before I hadn’t been diagnosed with cancer of the liver, cancer had already pitched itself amongst us gathering the moss of our own endurance with this monstrous and horrible disease. We have written songs about it. Cast screen on it. Recorded poems, matched, prayed and so on.
And so I thought, it shouldn’t take something for anyone of us to realize, it shouldn’t take cancer story to reflect on how life clarifying such unexpectedness can mean.
In the face of the bigger picture, I realize that I am still here 4-years into my cancer journey and that I am not going to settle on the difficult feats I have faced and the uncertainty that looms every time I try to figure out of the ending, but maybe life is not about that, I want this to be a rediscovery of where I want to be and definitely – any day – I would love my story to hopefully help someone rediscover themselves. For rare things such as love, kindness and hope are powerful virtues that go a long way in making sure none of has to go through life alone, whatever challenges that presents.
Dear ones, we all have relatable cases if not only about cancer, stories that can nurture hope, inspiration and courage to countless others who may find themselves overwhelmed by the challenges they face. More importantly art, in whichever of the many various forms, helps us express ourselves and connect with others. This is why I invite you all to stand with me, help me share my story, support my medical fundraising for through this we become part of the architecture, tradition and nature of giving cancer journey a meaning of hope.
The financial obligation is overwhelming but I have remained hopeful that with support I am able to raise the remaining balance. The amount needed for my treatment is KES 4.3 million. I have been awarded KES 1.3 million by my insurance therefore leaving me with KES 2.2 million more to meet the cost of my treatment.
With support from poets in Nairobi Kenya, we have organized for a charity fundraising event dubbed We Will Win scheduled for November 17, 2016 at All Saints Cathedral Nairobi from 6 p.m. The ticket proceeds and donations from this charity event will go to my medical fundraising account. For more information call Oduor Jagero at 0723 08 2424
This is a call to everyone to join and help me raise the amount needed for my treatment. Join and help me win this battle against cancer. Account details are as follows:
M-Pesa Paybill Number: 825155
Bank Acc. (Co-op): 01108235521900
M-Pesa: 0726 649 526
Lastly, for my GoFundMe fundraising profile at Raising Funds for Ochuka’s Cancer Treatment and share widely. I thank you all for standing and supporting me in my journey. I would also appreciate more suggestions and any other support needed for success. Be blessed.
I’m nurturing a new hope. I must make it to India. This story mustn’t end here. I hope it lights your candle. We are all broken, still beautiful anyway.
I want to thank everyone who has helped me in any way, your support, your prayers, your kind words, have keep me going through the battle. May we rise above every pain and struggle, loss and grief, to proclaim victory again.