Cancer wastes away two sisters

Nyachwo (Left) and Okong lie on a mattress in their single room rented mud and wattle house in Kibuli, Kampala. PHOTO BY KELVIN ATUHAIRE

Two sisters have been left at the mercy of well-wishers with their lives ruined by cancer.

Eunice Nyachwo, 44, a stage 3B cervical cancer patient, has survived with cancer for eight years, way longer than the average cancer patient in her category.

The American Cancer Society says only one out of three patients at this stage completes five years after diagnosis.

In fact, she is likely to have had cancer for longer, because nine years ago she had an operation to remove a tumour that had caused her a swollen stomach and pain.

Her husband provided the money for the operation, and her sister was very supportive.

Amid protests from neighbours and friends, Nyanchwo’s husband came through for the second time when he sold family land to pay for a second surgery at the Uganda Cancer Institute (UCI).

The second surgery combined with 16 days of radiotherapy has bought Nyachwo longer time than most cancer patients in Uganda even if, she remains terminally ill.

Nyachwo is not supposed to work, because the doctors say anything that requires much energy will only shorten her life.

The most immediate indication that Nyachwo is doing a lot more than her illness allows is vaginal bleeding that occurs, even, if the work is, as seemingly effortless, as collecting doodo (amaranthus) from the garden.
But whenever Nyachwo gets petty jobs that don’t require heavy lifting, she works.

More tragedy struck when three years ago her caretaker and only biological sister, Eseza Okong, was diagnosed with breast cancer.
Okong had worked to pay the bills for things such as food and rent to support them both, while still providing bedside care for her sick sister.

Burden of bills
Dr Jackson Orem, the UCI managing director, says most of their patients give up on treatment in the first year, because of bills such as rent and food for both the caretakers and the patients.

“Only 20 per cent of patients can sustain going through treatment,” he says, adding that they register a 40 per cent default rate of cancer patients in their first year of treatment with many others dropping off in subsequent years.
Abandoned
Support from Nyachwo’s husband and sister helped her complete treatment. But then he abandoned her shortly afterwards.

“Due to the vaginal bleeding, we could no longer have sexual relations. I could not even prepare food for the family, so I was useless as a wife,” she says.

When Nyachwo’s husband got a second wife, he forgot about the two. As a result, breast cancer struck Okong, when the two sisters were on their own, with limited resources for treatment. Okong and Nyachwo are two of their mother’s three children. They have one brother, who they say is mentally ill, so in this battle, they are on their own.

Before Okong left to provide care for her sick sister, she had been a cleaner at the now defunct Uchumi supermarket. She didn’t have money saved up and unlike her sister, didn’t have a husband to give a helping hand.

But the two went to relatives back in Tororo District and collected enough money for Okong to get the first round of treatment at UCI.
The tumor in Okong’s breast disappeared; the sisters thought at least one of them would beat the cancer.

Okong who had become better from treatment, would do petty jobs to maintain her mud and wattle single room in Kibuli, Kampala and look after the sister, who had to remain behind so as to access medicine from Hospice Africa.
Hospice provides palliative care for patients with diseases that require pain management.

Dr Michael Kizza, a palliative care specialist, says beyond pain, they also manage the smell that comes with cancer because many patients actually are affected by the smell because it has the potential to disrupt their feeding routines.

Nyachwo agrees, saying there is a time she couldn’t eat after washing her sister’s breast.

Likewise, Okong had experienced a similar experience, washing Nyachwo.
Hospice doesn’t have an outreach in Tororo, so Nyachwo had stayed in Kampala to access the pain management care and other services.

The fact that she no longer had a home and her husband didn’t want her back made the choice easy.

Turned to begging
Then the cancer in Okong’s breast returned.
She was bedridden and Nyachwo became her caretaker.
With no job, Nyachwo resorted to begging mostly from the church they both attended in Kibuli.

The alms from church are, however, not enough for the two sisters to feed, pay rent and let alone pay for treatment at UCI.

“We are poor, we are worse off than the beggars on Kampala streets,” says Nyachwo.

According to Okong, they sometimes sleep hungry, because they cannot afford food.

This reporter spent about two hours at Nyachwo and Okong’s house and throughout this time, they ate nothing.

During this time, Okong took a spoon of morphine for the pain and boiled water from avocado leaves.

The two swear the liquid though bitter helps to increase blood in their bodies.

They cannot afford their rent either and fear that if their landlord throws them out in September like she has promised, they will both have to return to Tororo to die a painful death.

Their room, which is so small, which can hardly hold a second mattress, costs Shs80,000, every month.

They, together with Okong’s four-year granddaughter who helps to fetch water, share a single mattress.

The landlady, they say, has been so understanding but she has already indicated that she cannot permanently give up the rent of a room located so close to town.

APPEAL FOR HELP

The sisters are, however, still hopeful. They say if they could collect enough money for Okong’s treatment, they wouldn’t mind sleeping on the veranda at Mulago hospital.

“After all many sick patients and their caretakers do this,” says Nyachwo.

Since Okong’s cancer is still localised in her breast, there is a high chance it can be stopped from spreading further.

But they don’t even have transport for their next appointment, which is next Thursday.

In the past the sisters would walk, but this is no longer possible, since Okong is now bedridden and has to be lifted to go outside.

She has not received treatment over the last eight months because every time she visits the doctor, she is given a list of drugs to purchase.

According to Dr Kizza, a dose of cancer treatment averages at Shs300,000, which the two sister say is one of the reason they have not attended several doctor’s appointments.

“The doctor writes for you the medicine you need to buy. If you buy the medicine, the Cancer Institute provides the water and drip. If you don’t buy the medicine, you leave with your patient without treatment,” says Nyachwo.

Until last year, UCI was involved in a row with the National Medical Stores, which caused a drug stock out. UCI argued that this was the reason patients would be sent with lists of drugs to buy medicine from private pharmacies.

For the 2017/18 financial year, government took the Shs7b for cancer drugs away from NMS and gave it to UCI.

UCI now purchases drugs directly from international suppliers. At a recent press conference at the Ministry of Health, UCI said cancer drugs were now available.
However, according to patients and people such as Dr Kizza, patients still have to buy some medicine from private pharmacies.
“They only give you one bottle of morphine, which is unnecessary since we get more from Hospice,” Nyachwo says.

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