In the eyes of a cancer caregiver

Watching her mother tirelessly till the fields of Rushozi Village, Mbarara District, and Imelda Kiconco had never imagined her mother Sedrasi Ndungu falling sick for more than a month. She suffered severe stomach ache which morphed into colon cancer in September 1999.

“My mother had lived with stomach ulcers for a while and she occasionally complained about abdominal pain, but it was not life threatening. Each time she felt unwell, she visited the nearest clinic for some medication and everything would instantly return to normal,” Kiconco recalls.

However, 21 years ago, her mother’s pain became excruciating. Ndungu was rushed to Mayanja Memorial Hospital, Mbarara but after some tests was referred to Mbarara Regional Referral Hospital for further management.

Running the tests

At Mbarara hospital, medics conducted endoscopy and biopsy. An endoscopy is a nonsurgical procedure used to examine a person’s digestive tract. Using a flexible tube with a light and camera attached to it, for the doctor to view pictures of the digestive tract on a colour TV monitor.

While for a biopsy test, a long thin needle is inserted through the skin and into the suspicious area. Cells are removed and analysed to see if they are cancerous.  Kiconco, then 21 years old, says they were told that results would come through after eight days.

“Eight days was one of the longest waits because not even painkillers could ease my mother’s pain.  At one point she convulsed and we thought she had died,” she explains.

With her mother moaning day and night, Kiconco decided to go to hospital before the eight days elapsed.  During her conversation with the doctor, he said, ‘I am not so sure your mother will go through it because at that stage, she has one month to live,’ and “this hint hit hard,” she relates.

 “Much as I wanted to know what was wrong with my mother, I was not ready to accept that she had one month to live. I cried inconsolably from the doctor’s office,” Kiconco recalls. She returned home.

After the eight days, mother and daughter went to hospital.

“The doctor handed us the results and told us that my mother had developed tumours on most parts of her intestines.   My mother turned to me with a gloomy face saying: “Kiconco, I will not live long, because I lost my sister to cervical cancer.” 

Dr Alfred Jatho, an oncologist at the Uganda Cancer Institute, says colon cancer is a type of cancer which starts in the colon, while rectal cancer starts in the rectum. Therefore, colorectal cancer (CRC) is a type of cancer which starts from either the colon or rectum.

“Based on 2020 Uganda cancer statistics, colon cancer was the 10th leading cause of new cancer cases and the 12th leading cause of cancer deaths in Uganda. In the same year, rectal cancer was the 13th leading cause of new cases of cancer,” he says.

In 2020, by gender, when the colon and rectal cancers are combined as colorectal, “there were 7.8 new CRC cases per 100,000 men and six CRC cases per 100,000 women in Uganda,” he explains

Trips to and from hospital

Ndungu was scheduled for a colectomy, a surgery of the large intestine (colon) done to remove part of the intestine that has been affected, a month later. Before the operation Ndungu called each one of her children and bade them farewell. Luckily, the operation was successful, but she stayed in the Intensive Care Unit for three days.

“This worried us, thinking we had lost her,” Kiconco recalls, “before moving her to the general ward where they stayed for about two weeks.”

 During their stay on the ward, Kiconco says a group from Hospice Uganda- Mbarara team visited them.   The group counselled her mother and explained that she could live longer if she followed the doctor’s instructions and took her medication.  They continued to visit Ndungu at her home and have kept in touch.

 Kiconco was taken through school by her uncle because their father did not value education as much. She is a security officer in Entebbe and compared to her siblings, she has a steadier income.

“I hired a caregiver for my mother, I travelled to Mbarara every week to visit her. However, whenever I sent money for my mother’s medication and upkeep, they would either use it for their needs or sometimes buy the wrong medicine or under dose,” she says.

One day the caregiver just walked out on Ndungu in the middle of the night. This was an eye opener for Kiconco.

Sacrifices

Initially, when Kiconco learnt of her mother’s condition, she did not imagine she would have to invest a lot. She notes that no one prepared her for the physical, mental or emotional demands this presented.

“Along the way I got married in 2006 and demands increased. However, I could not let go of caring for my mother,” she says.

The mother of three, lost her marriage as she struggled to juggle work, home and marital duties. This, she attributes to financial constraints her husband could no longer bear. The costs of cancer care can be a source of stress. He was also irritated by the attention Kiconco gave to her mother. 

Challenges

 In 2015, she relocated her mother from Mbarara to Kawuku, Entebbe Road because making the weekly journeys to Mbarara was not sustainable. Even then, she needed to undergo another colectomy.

“After the colectomy I went on to register as a member of A-Plus because I thought my mother was going to die soon.  Yet I needed to give her a decent burial,” Kiconco says.

Despite the financial challenges, Kiconco would choose looking after her mother any day.

 “I love my mother, but sometimes it is tough to realise that you are neither investing nor saving yet you are working.  There was a time I spent more than Shs3m in a day yet that was the only saving I had,” she relates.

During the first lockdown my mother was admitted to Kisubi hospital, and I spent Shs4m in three days.

At first I used to spend Shs300, 000 per month on her medication but lately I send about Shs800, 000. Her medication costs have increased and her immunity has dipped and she contracts many infections.

In case of an admission, she spends more than Shs4m inclusive of medication. If it involves an operation, it costs about Shs8m. 

“With my siblings we have had to sell off most of our property such as cattle and plantations to bear the financial burden,” she relates.

In this journey, the finances have been overwhelming.

 “Once a money lender gave a condition to give him my ATM card and pin code, and just like that, my salary was taken to settle the loan.  Another time, I took a loan of Shs1.2m and for 18 days later I had to pay an interest of 20 per cent.”

Treading with caution

 With the patient, all is not rosy. Kiconco and her mother share a bedroom. There are times her mother loses her temper, does not want to talk to anybody, especially when she is in pain.  

“There are nights you wake up only to find her sitting and crying like a baby only to learn that her bladder is full yet she has tried, but failed to urinate. This condition worries me, especially that I work night shift lately,” she reveals.  

During the day, Ndungu spends the day on a small mattress in the sitting room. On the wall adjacent to her resting space is a nail where her drips are hang in case her condition requires immediate attention.

Ndungu’s diet is also special, she has to feed on soft food, specifically three cups of dilute milk a day, a small portion of mashed rice and cabbage which she takes at about 5pm.

Fear of the unkown

The mother of three, says there is a genetic mutation in their family that predisposes those who carry it to developing cancerous tumors of all types.

“My maternal relatives have had a number of cancer cases. My uncle was diagnosed with cancer of the heart and my aunt died of cervical cancer. Because of such history I keep screening for cancer and I am uncertain of what lies ahead.”

Hope 

Despite, all this, Kiconco and her mother pray constantly. “It has been by prayers that I have lived with cancer for this long,” says the frail Ndungu, adding that she thanks God for the gift of life.

Every month, members of Hospice Makindye join Ndungu to say prayer at their home.

When Ndugu can, she travels to Hospice Makindye but when strength fails her, they come to her home.

Lately, Kiconco prefers to have her mother attended by doctors to from home because it is less stressful.

Stage 4 cancer (colorectal)

Stage 4A

The cancer has reached one area or organ that isn’t near the colon or rectum (such as the liver, lung, ovary or a faraway lymph node).

Stage 4B

The cancer has reached more than one area or organ that isn’t near the colon or rectum.

Stage 4C

The cancer has spread to distant parts of the tissue that lines the abdominal wall and may have reached other areas or organs.

- cancercenter.com