On Christmas Day in 2018, Mercy Barasa spent her day pacing up and down the corridors of AIC Kijabe Hospital.
Occasionally, she peeped furtively into the room where her mother, Everlyne Mukhongo, lay almost motionless.
“I watched the blankets for movement – a sign that she was still alive, and a chance to breathe a sigh of relief,” says a thoughtful Mercy.
Her fears were not unfounded, as the family had spent four months moving from one doctor to another, trying to get to the bottom of her mother’s constant, unexplained ailments.
Malaria, jaundice and diabetes were some of the diseases her mother was treated for before they visited AIC Kijabe Hospital where doctors appeared disturbed by her deteriorating condition, and ordered a CT scan which confirmed their worst fears. Mercy’s mother had stage three pancreatic cancer.
The doctors could not, however, remove the tumour because it had spread from the pancreas to neighbouring tissue. Removing it would be dangerous. The medical term for it is unresectable.
Instead, they recommended palliative care, which focuses on providing relief from pain and other symptoms, as well as physical and mental stress at any stage of an illness.
“I take care of her because I am the only sibling without a family of my own, plus I live in Nairobi, which makes access to the hospital easier,” says Mercy matter-of-factly, as she fiddles with her hands, recollecting the arduous emotional since her mother’s diagnosis.
“I lost my appetite and developed amnesia. I forgot my ATM card and mobile phone PINs,” she recalls. And she didn’t realise what a problem it was, until she found herself walking towards Easy Coach offices to book a ticket to Busia – their rural home – having forgotten that she had a rented house in Nairobi.
"I eventually sought counselling from a church but even then, I had to drop out because it felt too mechanical; like they were using a template to address my issues instead of actually listening to me."
One of the ways Mercy wishes people around her would support her is by not sharing negative stories about their friends and relatives who succumbed to cancer.
“You are not helping me by saying that. It’s draining,” says a pensive Mercy, who adds that she will seek a counsellor’s help to deal with the knowledge that each breath her mother takes could be her last.
Her mother has never seen her tears but she has locked herself in her room to cry away her pain. The hardest part is when they are making plans for the future, and her mother asks: “Will I really be alive to see that?”
But Mercy encourages her to fight on, even with the knowledge that every minute they spend together is precious.
“I used to ask my mother’s doctors how much time she had to live, but they gave me no answers. In retrospect, I’m glad they refused because I have learnt to take one day at a time.”
Financial and emotional pain aside, Mercy has also had a hard time getting a proper caregiver for her mother.
“House helps flee when they see my mother’s condition and nurses charge by the hour. I’ve thought of quitting my job to take care of my mother, but of what use would that be, when the job is what helps me afford to take care of her?”
Bob Collymore’s death hit her mother particularly hard, as there was a lot of talk about death and cancer then.
Ibrahim Mmudi’s story
Like Mercy, Ibrahim Mmudi had also had to help a loved one fight cancer.
His wife, Anastacia Otieno, was diagnosed with stage three colon cancer in 2017 and he has seen her through the worst of it.
"She started complaining of stomach-aches when she was expecting our third child and we thought they were just pregnancy pains that would go away.”
But the pain did not subside even after delivery, forcing them to seek medical help. An ultrasound during one of their many visits to hospital revealed she had a growth in her stomach.
“She was unable to relieve herself when she went to the toilet. Instead, both urine and faecal matter would come out through her mouth. She really suffered,” says Ibrahim, his eyes clouding at the memory.
Desperate, they went to their rural home in search of herbal medicine, but that too hit the wall.
Further medical tests revealed that the tumour had blocked Anastacia’s colon. She spent six months at the Kenyatta National Hospital (KNH) bedridden. The constant hospital visits, tests and admission took a financial toll on the family, forcing them to send two of their three children to Ibrahim’s aunt back in the village. Their seven-year-old son remained behind as he was in school.
Even though NHIF and well-wishers helped with payments and KNH waived part of their Sh710,000 bill, the financial challenges meant that Anastacia could not keep up with chemotherapy as required and the tumour recurred.
“Fortunately, it did not spread to other organs, but there are risks involved in removing it so the doctors opted to let it be.
“Were it not for a Good Samaritan who saw my despair and managed to get me treatment at Texas Cancer centre, I would be in a worse state,” adds the soft-spoken Anastacia.
Her husband shares a “before cancer” photo of her. The image of a smartly-dressed and jovial Anastacia – tall. Lithe. Fashionable. Beautiful.
“Can you even tell it’s the same person?” asks Anastacia, smiling past her pain, as she remembers a time when she did not have to worry about whether she would ever see her children again.
"I'm an orphan so I know what it is like to grow up without parents. I would not want my children to go through the same pain," she adds.
Ibrahim often battles with feelings of hopelessness, helplessness and confusion.
“Watching someone you love go through cancer is a torturous experience that I would not wish on my worst enemy. Worse still is the painful realisation that there is nothing you can do to ease her pain.”
Ibrahim is solely responsible for taking care of his wife, but sometimes he relies on the help of neighbours whenever he is away.
"It's better to be hungry and healthy than full and unhealthy," says a contemplative Ibrahim, who relies on odd jobs to get by.
Anastacia is currently undergoing chemotherapy sessions at KNH but the couples biggest pain is that NHIF could only cover six of the 12 sessions needed.
Ibrahim’s greatest hope is for a well-wisher to help them pay medical bills as this would go a long way in his wife’s cancer treatment.
“The only thing I want is for her to get better.”
Counselling psychologist Prof Catherine Gachutha weighs in on the toll it takes on caregivers and offers insights on ways those around them can support them.
When someone is helping a loved one go through cancer treatment, what kind of emotions do they experience?
The caregivers sometimes feel overwhelmed by the progression of the disease. They may also be in denial. As they observe the patient’s condition worsening, they can distort the reality that death is looming since it is painful.
They can also be angry at themselves, God, doctors or even other significant persons around the patient.
Fear and worry that the worst will happen are also common emotions. Intensive care of patients also causes stress and anxiety. Lastly, when a patient does not get better, they are likely to feel sad and depressed.
How does caring for a loved one who has cancer affect one physically?
Physical effects would include change in appetite, lowered immunity causing colds, flu, allergies, diarrhoea, aches and pains, headache, insomnia, pounding heart, restlessness, fatigue, sleepiness and depression.
These physical symptoms are mostly generated by unresolved emotions, which the caregiver goes through while taking care of a cancer patient.
There is usually a lot of information about caring for a cancer patient, but what about the caregiver? What kind of support do they need?
This support includes being:
a) Helped to deal with compassion fatigue and burnout through support groups for caregivers
b) Provided with information on diagnosis and its implications
c) Provided with information about the treatments available and side-effects
d) Assisted financially to take care of the hospital and treatment bills
e) Helped to process the negative emotions that develop as one takes care of a patient with chronic illness
What strategies have you found helpful for a caregiver dealing with the emotional aspects of cancer?
Taking short breaks from an intense caring role through others’ assistance. A caregiver can also undertake re-energisation activities like physical exercises and other sporting activities.
Going for short retreats, joining self-help groups, attending counselling periodically and a supportive network of friends and family are also useful in helping a caregiver cope better.
For those offering support to caregivers, are there any DOs and DON’Ts in what not to say or do?
a) Don’t communicate pity because you make them pity themselves.
b. Don’t say this is God’s plan: This statement is problematic for a couple of reasons: First, not everyone is religious, or puts their trust in the same faith that you do. Additionally, saying this can make you come off as self-righteous, like you are in control of what is or is not God’s plan.
Finally, like ‘everything happens for a reason’, saying these words can minimise a patient’s or caregiver’s pain by implying that their grievances are all part of a plan that they must simply accept.
c) Don’t lecture them on what they’re not doing right; you make them feel unappreciated.
a) Listen to them attentively so that they can process their heavy emotions.
b) Appreciate them for the efforts and sacrifice.
c) Give them helpful literature to keep them in tune with what they are dealing with.
d) Help them to take care of the patient so that they can refresh and revitalise.
e) Take time to be with them so that they can also feel attended to.
f) Support them financially so that they can handle the health bills.
g) Help them to look for solutions regarding medical care decisions for the patient.
What does it mean when cancer is unresectable?
Unresectable cancer is defined as one that cannot be removed completely through surgery. Since surgery often offers the best chance for a cure with solid tumours, this can be discouraging news to hear.
Yet just because a tumour is inoperable does not mean it is untreatable. Systemic treatments—treatments that treat the whole body rather than just the site of cancer—may extend life and improve symptoms for many people living with cancer.
It’s also important to note that with advances in cancer research, not all tumours that are initially unresectable will remain inoperable indefinitely.
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief from suffering by means of early identification and impeccable assessment and treatment of pain and other problems that could be physical, psychosocial and spiritual.
SUPPORT FOR CAREGIVERS