• Longinus Nganga, Martin’s father had always been a healthy chap throughout his life before being diagnosed with cancer in 2012.
• Psycho-Oncologist Philip Ouma who is the Director of International Psycho-Oncology Society said cancer diagnosis can be very stressful to both patients and the family.
Image: REUTERS/Njeri Mwangi
The day I found out my father had cancer was the worst day of my life.
These are the words of a tearful Martin Nganga whose father succumbed to Leukemia in 2018.
He recalls feeling shocked, numb, angry, and afraid. Life was very unfair.
It was a nightmare, he said.
“To me, it sounded like a death sentence to my 70-year-old dad,” he narrated.
Longinus Nganga, Martin’s father had always been a healthy chap throughout his life before being diagnosed with cancer in 2012.
News of his diagnosis took the family by surprise.
“I remember growing up, three times in a week, my mom would always prepare for him liver and fresh juice for breakfast,” Martin recalled.
“He didn’t even take milk or red meat”.
Life was never the same for Martin and his family ever since their worst fear was confirmed.
“Being the firstborn son I knew there and then I had to wear my big boy boots and take responsibility for the family,” he said.
Image: COURTESY.
Martin disclosed that for two weeks after he learned of Nganga's diagnosis, he spent sleepless nights on the internet trying to understand exactly what he was dealing with.
“I realized how clueless I had been about what cancer really is and what kinds there are. I didn’t even know what Leukemia really was in-depth,” Martin narrated.
52-year-old Martin works as a procurement officer with the Kenya National Bureau of Statistics in Nairobi.
He was forced to take several leave days to attend to his ailing father who was in Bungoma County.
Psycho-Oncologist Philip Ouma who is the Director of International Psycho-Oncology Society said cancer diagnosis can be very stressful to both patients and the family.
He told the Star in an interview that being an existential disease, cancer has the ability to bring about the reality of death.
It undoubtedly causes anxiety to those involved due to the possibility of impending death.
Anxiety and worry.
Ouma who also manages Faraja Support Trust noted that the family's ability to deal with different transitions in the past will always reinforce how they will deal with the current predicament.
"Information is key. Misinformation will always bring anxiety and uncertainty," he said.
He advises caregivers to try to fully comprehend what the patient needs.
"Knowing more about cancer and how it’s treated can take some of the fear away," he said.
"You need to be informed on the type of cancer, expenses and all the uncertainties. In short, be actively involved in the treatment trajectory," he said.
Martin recalled how he had to go through a range of emotions. Some days would be good, and things seem like they used to but other days were so much harder.
Image: COURTESY.
He remembered how paranoid he would get whenever he was away from home on a work basis. So much so that he would dread getting calls from relatives.
“I remember there is one time my brother called me at 11 pm. I had just arrived at my house from work. I knew without a doubt that my dad had passed. I looked at the phone as he called almost three times. Fortunately, he only wanted to inquire about something different which was equally urgent,” Martin said.
Ouma advises that as a unit, family members should have an open policy where they can talk freely about their emotions.
"People cope differently, talking to those close will enable hope sharing when everyone talks of how they are holding," he said.
Writing down thoughts in a journal, joining a support group to talk with other people facing some of the same things you are, meeting with a counsellor are some common ways caregivers engage in dealing with anxiety and worry.
Ouma said through a caregiver series programme at Faraja, he has been able to help caregivers manage anger, stress, and guilt.
"Actually, holding your feelings inside can keep you from getting the help you need," Ouma advised.
Financial strain
Getting hold of experienced doctors, personalized care, consultation with Medical Visa, flight tickets, travel and stay do not come cheap.
It was financially difficult to maintain expensive cancer treatments.
The chemotherapy which Martin says was doing more harm to Nganga than good was by far expensive to the family.
As much as the family tried to have all medical costs covered, they still had to pay rent, the electric bill, car expenses — racking up bills easily in the five figures.
With the additional costs of medication, the family struggled to raise funds for treatment.
Ng'ang'a underwent chemotherapy for a year between 2015 and 2016.
Martin says the Ng'ang'a demanded the chemotherapy be stopped, said it was making him weak and always tired.
Since Early, 2015, blood transfusion and stem-cell transplants became almost daily procedures.
"National Health Insurance Fund only catered to the bed admission. I remember at one time his bill escalated to Sh127,000 at lancet laboratories and the NHIF could not cover anything. It was a problem for the family to raise that one-day bill,” Martin said.
“At this stage, my dad was overwhelmed with pain ”.
“We had to create a cordial relationship with a blood donor centre in Eldoret since he started transfusion of blood cells almost every day. White blood cells became too scarce that his immune was too low. Even when he sneezed he would end up having a nose bleed,” he said.
Martin said that with the daily hospitalization, the family was now doing everything possible to meet the bills.
Family disagreement
Martin's polygamous family did not make the situation any easier.
Nganga had two wives who had to take responsibility for making sure children from both households contribute towards the hospital bills and other expenses including transportation to hospitals, food and other miscellaneous.
“With the polygamous set up, everyone was looking for excuses to contribute the least. We argued more on contribution than anything else,” he said.
Ouma advised that the division of duties within the family is the best way to reduce the burden.
"The family can assign finance management to one person as the rest share between living with the patient, transportation and other duties," he said.
He observed that shared roles become more bearable to the family.
Accepting fate
Coming to terms with the possibility of death is the hardest part to any caregiver.
In 2018, Martin says, Nganga was in so much pain that he suggested to the family to sell his five-acre piece of land to finance a medical trip to India for a bone Murrow transplant.
“However an Indian doctor advised us that due to age and the stage of cancer in Nganga’s body, there was nothing much to be done. So the trip to India had to be canceled,” Martin said.
Hearing that completely devastated the family, Nganga especially. Martin says he lost all hope of getting healed.
He resorted to the weekly, almost daily hospital visits that often left him more tired and hopeless.
Ouma said balancing between hope and death is the hardest part of his career.
He advises caregivers not to focus on the timeline and instead give the patient a desire to fight.
He said at Faraja Support Trust, caregivers are trained on emotional healing, basic nursing care, and stress management so that their anger does not boil over to the patient which may cause hopelessness.
"Sometimes medication fails and it is only the willingness spirit that keeps the patients going," he said.