I have fought the good fight, but cancer seems to be getting the better of me now

It is a bright Saturday afternoon and 19-year-old Margaret Muthama is busy selling a packet of biscuits to a customer under an umbrella stand at the Kenyatta Public Beach in Mombasa. Next to her, her younger siblings — brother Katana and sister Faith — watch the transaction quietly. They are learning the ropes of the trade, because soon their very survival might depend on how many packets of biscuits they sell.

Around them, other children their age jump and splash gleefully in the shallow waters of the Indian Ocean. Others are building sand castles on the shores of one of Africa’s most pristine beaches, while yet others are playing beach ball and generally having a good time with their friends and family.

The Muthamas, however, cannot have the luxury of dipping into the cool waters of the ocean; because they are here to save their mother’s life. Margaret, Katana and Faith are, in a huge, painful way, their mother’s social insurance. The little money they will earn today will not only feed them, but also go into their mother’s health kitty.

Damaris Muthama, their mother, waits at home patiently, doing whatever she can to fend for her children even as they fend for her. She was diagnosed with breast cancer three years ago, and since then she has watched helplessly as the disease gnaws on her.

The situation the family finds itself in today is, to say the least, depressing. Yet, bad as it is, it is not unique to the Muthamas, whose story we only use to illustrate how cancer, a growing health burden in the country, is affecting families.

SPENT FORCE

Margaret, whom her siblings affectionately refer to as Maggie, was forced to drop out of school in 2013, while in Standard Seven, to take care of her mother. She is the first-born, and so the burden of running the home fell automatically on her young shoulders when her mother became too ill to effectively run their home.

Both Katana and Faith, who were studying in a private school, soon followed Maggie out of class. Their single mother — who separated with their father just before she became incapacitated — used to save enough from her kiosk businesses to pay their school fees, but the cancer has made that impossible. A neighbour, touched by their plight, enrolled them in a local public primary school after they went through a whole school term at home.

Maggie, however, was forced to remain at home to take care of her mother, younger siblings as well as run their small kiosk at the beach. Katana and Faith join their sister whenever they are not in school, but most of the time Maggie runs the business alone.

Before the illness struck, Damaris was a hardworking businesswoman at Kongowea Market, where she supplied sellers and buyers with sacks. Business was good and she was comfortably taking care of her family, but all that has since changed, and now she has to rely on whatever her daughter brings home.

“The cancer has been slowly making me weaker and weaker,” she says. “I thought I would regain my footing after my first mastectomy, but that has not happened. When I could no longer carry the heavy loads at Kongowea, I moved to the beach and opened the kiosk business, selling biscuits, groundnuts and sweets and praying that I would make enough money daily to feed my children.

“However, as days passed, it became harder and more painful to run the business, and so I asked my daughter to step in and save the family.”

Damaris admits she is now a spent force. She cannot fend for her children any more, and that hurts her. As she explains her predicament, you can sense the struggle in her belly and feel the dread in her words. Mid the interview, she breaks down in tears. A mother, she believes, must take care of her family; yet here she is, forced to sit at home and wait for her children to feed her.

The saddest chapter of her life started as a bean-sized lump in her breast in 2012. Doctors advised her to seek urgent help, but she did not have the money at the time, and so she relied on ineffective medication to treat the symptoms rather than the disease.

“A doctor told me in January 2012, when they discovered the lump, to give him Sh10,000 to remove it,” she says. “But I did not have that kind of money, and neither could I raise it from my friends and family.”

LONG PAINFUL WAIT

Dejected and discouraged, she decided to ignore the lump in her left breast. For more than a year, the small bean did not bother her and life went back to its humdrum pace in Kongowea.

But cancer is no respecter of gallant soldiers or determined mothers, and so in April 2013 the small lump started giving her pain like she had never felt before.

She went back to hospital, and this time doctors told her they had to remove the affected breast through a process called mastectomy. They then followed it up with a series of chemotherapy sessions until December that year, and then asked her to start radiotherapy in February 2014.

Her six sessions of chemotherapy at Coast General Hospital, each costing Sh35,000, were paid for by a donor she only identified as Nanty. But the hospital does not offer radiotherapy, and so she was asked to either seek help from a local private hospital or travel 500 kilometres away to Kenyatta National Hospital in Nairobi for the service.

She opted to travel to Kenyatta but on arrival was slapped with the news that there was a long waiting list for the radiotherapy machine, so could she please just write her name and telephone number, then go back home and wait for the all-important call?

She did as instructed and  boarded the bus for the return journey to Mombasa.

“The doctors at Kenyatta told me the patients list was so long it might take me a year to get my chance with the radiotherapy machine, but I could do nothing about it,” she says.

While doctors had advised her to be on radiotherapy as early as February 2014, Damaris had not had her turn on the machine at Kenyatta by the time the rest of Kenya started preparing for Christmas and the new year 2015, almost a year later, just as warned by doctors at the referral hospital.

That long wait, interrupted only by Tamoxifen tablets, gave the cancer the chance to regroup and stage an attack. In January this year, what remained of Damaris’ left breast and her entire chest area started changing in colour; the cancer had started spreading to other parts of the body.

“My breast developed these small, pink and pimple-sized swellings,” she says. She panicked and rushed back to Coast General Hospital, where doctors removed what had remained of her breast and asked her to get on radiotherapy as soon as possible.

There was a tiny window of hope for her, though, because doctors at Kenyatta National Hospital had, at about the same time, informed her that she was lined up for radiotherapy in April, more than a year after she applied for the same.

She decided to wait for the few weeks and get the cheaper services at Kenyatta. But even as she waited, a slight pain developed in her left leg and she sought medical opinion about it.

The diagnosis almost broke her: the cancer had spread to her left leg, and it would attack the right leg as well if she did not get radiotherapy soon enough.

COSTLY AFFAIR

Shocked, but at least boasting an appointment with the machines at Kenyatta, Damaris travelled to Nairobi in April this year. On arrival at the region’s biggest hospital, however, she was informed that she could not be attended to because the radiotherapy machines had broken down.

She travelled back to Mombasa to be with her family, but the pain became unbearable and she travelled back to Nairobi to see whether she could get help elsewhere. A private hospital in the city told her she needed about Sh260,000 for radiotherapy, but she could only raise Sh20,000.

Damari’s left leg collapsed in July this year, eaten away by a cancer she had fought so hard to contain. She is now on crutches and has gone back to chemotherapy, which has become so expensive her donor has asked her to top it up with Sh90,000.

The small sweets, biscuits and groundnuts business at the public beach in Bamburi will not yield her that much profit, she agrees, but that remains her only hope for now. She wishes there was something else she could do, but her eyes are now on daughter Maggie’s daily returns every evening.

And so ends the story of Damaris Muthama, a mother who can no longer feed her children, a patient who cannot access the medical care she needs, and just another cancer victim among many others in the country today whose stories are carbon copies of hers.

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FYI

Coast General Hospital deputy administrator Victor Njom says cancer is an abnormal proliferation of cells in the body that form a tumor, an abnormal cell that has ability to spread from one site to the other. “The normal situation is that our cells grow and reproduce in a systematic fashion, but if there is no control, the cells grow haphazardly and therefore increase in amounts,” he says. “Once that happens, they are able to spread to other tissues which are far from the site.” Cancers are divided into two categories: solid and blood borne varieties. Solid cancers affect solid parts of the body whereas blood borne ones are generally referred to as leukemia. The disease can originate from any tissue on the body; so you can have cancer in the eye, skin, breast, cervix, leg and any other part or site in the body. From that site, it can spread to other parts.

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HOPE FOR DAMARIS

It is criminal not to attend to these patients: Doctor

Dr Nelly Bosire, an obstetric gynaecologist, says any treatment for cancer is most effective when it is done soon after diagnosis and not disrupted at all.

“Every day lost in cancer treatment the cancer cells grow and spread all over the body,” she warns, adding that cancer treatment is expensive and inaccessible to many poor Kenyans such that most of them opt to avoid it altogether, go home and wait for their time to die.

“Although a lot has been done about cancer awareness, prevention and screening, I think it is criminal to screen a woman or a man, find her to have cancer and then not have the resources to treat her yet it has a cure,” she says.

Besides radiotherapy, Dr Bosire says chemotherapy drugs alone can cost a patient up to Sh60,000, excluding doctor’s fees, tests and admission charges, and nursing care.

She notes that in the course of her job she often comes across women who cringe whenever she tells them to go for cervical cancer screening.

The women tell her they would most likely die of the stress associated with knowing they have an illness they cannot afford to treat, than the effects of the disease itself, she says.

Dr Bosire advises the government to encourage Kenyans to get medical insurance, and also to revise the policy on cancer treatment to ease the burden on the country’s poor patients.

How you can help 

To help Damaris Muthama foot her medical bills, get in touch with the writer on [email protected], or [email protected]. You may send donations directly to her through Kenya Women Finance Trust Bank; Account Name: Damaris Ndunge Matinga; Account Number: 1001901662.