Isolation that comes with chemo is maddening

John Thuku,30, known by his peers in the hospital corridors as El Medico, battled Acute Myeloid Leukemia (AML). He shared his story with Agnes Aineah.

Sometime last month, I was diagnosed with a type of blood cancer that has made my past few days the most difficult days I have ever had. I remember waking up with abdominal pain in the area below my ribs. I tried painkillers but the pain persisted for two weeks. At the end of the two weeks, I decided to see a doctor at Moi Teaching and Referral Hospital (MTRH) where I visited the wards as part of my coursework at Moi University School of Medicine where I am a final year student. The pain had become too much it kept me sleepless, writhing in bed the whole night.

The doctor at MTRH conducted some tests and gave me medication which he said would work within a week. And true to his word, the pain disappeared after I completed the dosage he prescribed. But the doctor suggested a haemogram (or blood count) just as a routine checkup. It was a test on my blood components including the Red Blood Cells, White Blood Cells and Platelets. The first test revealed that I had a low count of all my blood components. The doctor was worried by the results and said to wait for a week before I took another test. But there was no improvement when I took the second test. Doctors said my low blood cell count could be attributed to a viral infection, bone marrow cancer, or certain tumors. They took a sample of my bone marrow to test for any of these possibilities and what came out of it was the worst revelation in my life ever.

They found abnormalities in the way my cells were developing. They found that 90 per cent of my cells were immature and they were stuck together so that they were not developing like normal cells do. Normal body cells have a cell membrane, the nucleus and other parts that all have their specific functions in the body. But mine didn’t have these parts. This meant I had only 10 per cent of functioning blood cells. It explained the fatigue and dizziness I had felt before. I was used to jogging 5 kilometres everyday. Then suddenly, I couldn’t complete even one. I also felt dizzy most times and I had battled tonsillitis for months. Then it occurred to me that my immunity had been low those days I battled tonsillitis.

I was diagnosed with Acute Myeloid Leukemia (AML), a type of blood cancer that starts in the bone marrow and causes cells in the bone marrow not to develop properly. Doctors said it was a type of cancer with high mortality rate if not treated urgently. I haven’t been more scared in life. A medical student in my final year, I understood the magnitude of my diagnosis and I didn’t need the doctor to explain to me what I faced. My girlfriend who is also a medical student was with me when the news was broken to me. I saw her agony.

That day, I proceeded to my room and locked myself there, all alone, trying to wrap my mind to the sudden twist in my life. I saw my life crumble at my feet. I had such huge dreams of rising from my humble background to become a successful doctor. Now I knew that to survive, I needed a lot of money which my family couldn’t afford. I knew my family couldn’t afford the chemotherapies and the numerous blood transfusions which my life was now pegged on.

I called my mother to tell her I had been diagnosed with leukemia. She hang up on me and then called back weeping. She said it was a lie. It has been a month and none of my family members has accepted that I have AML.

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Sliver of hope

But my hope is hinged on what the oncologist said. She said my cancer had been discovered before the blast cells went into my blood circulation. Her utterance conveyed hope and the urgency of the matter at hand. I had to start treatment immediately. We secured a pay bill number, raised a Sh70, 000 deposit and I started my chemotherapy at Aga Khan Hospital on two weeks ago. The treatment will cost Sh2.6 million which my friends and Moi University faculty are contributing.

Chemo hasn’t been easy and the worst part of it is the isolation that someone is subjected to. My doctors just stepped out of my room (on the day of the interview), and he just informed me that my immunity is at zero. This means I have no functioning white blood cells. It is a good thing because it shows that the chemo is working. But the isolation that comes with it is maddening. I have to avoid contact with people to avoid getting infections.

The few people who come to see me must wear masks. Also as part of treatment, doctors are analysing a sample of my bone marrow to see whether a bone marrow transplant is needed or not. Managing AML is very expensive especially with the numerous blood transfusions that one needs. I feel bad for people who can’t afford decent medication and are bundled up in poorly equipped facilities. With the poor immunity that comes with treating this condition, a patient needs very specialised care. But these people can’t afford that and it breaks my heart.

Unfortunately, a few days after this interview, John succumbed to his illness. The story was published with consent from his family. We offer our condolences to the family.  

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Acute Myeloid LeukemiaLeukemiaCancerChemotherapy