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Between hope and hell – helping patients navigate the...

Maverick Citizen

SPOTLIGHT OP-ED

Between hope and hell – helping patients navigate the Gauteng cancer maze

The treatment waiting list stretches to more than three years for medical radiation for breast, cervical and prostate cancers at Charlotte Maxeke Academic Hospital. (Photo: Rosetta Msimango / Spotlight)

A cancer patient navigator’s job is not easy, but it can make all the difference when someone receives what can be the most devastating news of their lives. Ufrieda Ho spent time with a navigator for a glimpse of what it takes to do this job.

Some phone calls turn to dread for Ouma Mamatela. It is when she calls cancer patients to tell them they’ve made it to the top of the treatment waiting list – but then no one picks up.

“You keep trying and you phone back the next day and you try all the numbers again. You get this feeling that something is not right. Then you suddenly realise that the person you’re trying to call has probably died,” says Mamatela, herself a breast cancer survivor and now a cancer patient navigator.

The treatment waiting list stretches to more than three years for medical radiation for breast, cervical and prostate cancers at Charlotte Maxeke Academic Hospital. It is the only public-sector facility that offers radiation services in the greater Johannesburg area. People die before they can get to the top of the waiting list, says Mamatela.

The long waiting lists have been stretched even further in the past year as the fire at Charlotte Maxeke resulted in severe disruptions. Chemotherapy services had to be diverted to other already overburdened facilities. For radiation therapy, the next-closest facility is at Steve Biko Academic Hospital – more than 50km away in Tshwane – which is struggling with its own massive patient load.

More pressure has come from the still unresolved staff shortage following a mass resignation of radiation therapists over a salary pay scale dispute in 2019 with the Department of Health. The ongoing legal dispute going through the Commission for Conciliation, Mediation and Arbitration and Labour Court has resulted in a go-slow by existing staff. The Breast Health Foundation’s chief operations officer, Louise Turner, says there is low morale and the hospital’s ability to attract new skilled staff to the vacant positions remains severely affected.

There’s also the failure of the Charlotte Maxeke Hospital administration to make contingency plans for the parking nightmare arising from fire damage to the hospital’s parking areas. Doctors and patients scramble for the few spots available or are forced to park some distance away from the hospital. There’s congestion from double parking, unexpected dead-ends where roads have been temporarily and unexpectedly closed off, and there’s the ever-present threat of cars being broken into or people being mugged walking to and from their cars.

Patient navigators aren’t immune to the bungles. Some days Mamatela admits that they simply have to drive away from Charlotte Maxeke, hoping to return in a few days when they may be able to find parking.

“You drive away and feel so bad, but you also know you’re wasting time driving in circles around the hospital,” Mamatela says. “You give up, but you know those patient files are sitting there in the car instead of at the hospital to get someone initiated on treatment.”

A fire broke out on 16 April at Charlotte Maxeke Hospital in Johannesburg. (Photo: Gallo Images / Daily Sun / Morapedi Mashashe)

Hope and hell

The damning realities of a crippled service and delays that cost lives make Mamatela’s typical work days at the Breast Health Foundation a pendulum swing of hope and hell.

Mamatela, though, is an optimist, she says. Now in her sixth year of remission, she knows that the next woman who walks through the doors at the Helen Joseph Hospital’s Breast Care Clinic who receives a positive cancer diagnosis will need something to believe in – some hope.

The foundation is a not-for-profit company formed in 2002. In 2005, it partnered with Helen Joseph Hospital to give psychosocial support on-site at the Breast Care Clinic. The clinic, through the foundation, manages more than 700 patients each month with a mix of joint-appointment doctors, doctors on rotation, interns and volunteers. There are about 40 to 50 new cases diagnosed each month. The pink paint, the staff, barring two admin clerks, and even the chairs come from the foundation’s funds. The foundation also takes up the critical role of in-depth record-keeping, which includes staging and tracking cancers that help to ensure better cancer statistics.

While diagnosis and surgeries take place at Helen Joseph Hospital, chemotherapy and radiation therapy need to be referred – mostly to Charlotte Maxeke.

On the two clinic days that are run a week, Mamatela’s day starts at 7am at the front desk of the clinic. For the cold Johannesburg morning, Mamatela is dressed in a white and pink hoodie with the Breast Health Foundation’s logo on it. The “uniform” communicates the intent that people should always be able to find someone to get help at a public health facility. Second, it’s a triumph in pink that the wearer is someone who survived cancer.

Read more in Daily Maverick: “My message to other cancer patients: ‘Never give up… and it’s okay to cry’

“Good morning. What are you here for today, my darling?” Mamatela asks, ever-cheery to someone who slips in through the glass doors. There are walk-ins and people arriving for follow-up appointments. Many patients know her personally, so there are crushes of hugs and excited chatter before she directs them to the right stream of numerous waiting areas in the very pink clinic.

Mamatela knows that professional reassurance and high-quality care matter. When she was first seen at a public clinic in Vereeniging in 2015, she remembers being dismissed and told her pain must have come from having bumped her breast. “They gave me Panado and told me to go home.”

Mamatela eventually heard about Helen Joseph’s Breast Care Clinic and ended up being a patient of Professor Carol-Ann Benn, one of the founders of the clinic. After her recovery, she was offered a job with the foundation. She is now head of the navigators.

Turner says she puts every would-be patient navigator, Mamatela included, on a three-month volunteer trial and then back-pays successful candidates. “I do this because everyone thinks they can do the job – but it’s not a glamorous job and it takes a survivor who has great empathy but also great strength,” she says.

Back in 2015, when Mamatela was diagnosed, she was a newlywed with dreams of having a big family and had just started a small soap-making business with her husband.

“But I said yes to this job at the foundation because it is a calling for me. It’s a job you can only do if you care about people,” she says.

Ouma Mamatela, cancer survivor and cancer patient navigator. (Photo: Rosetta Msimango / Spotlight)
The treatment waiting list stretches to over three years for medical radiation for breast, cervical and prostate cancers at Charlotte Maxeke Academic Hospital. (Photo: Rosetta Msimango / Spotlight)
A consultation with a cancer patient. (Photo: Rosetta Msimango / Spotlight)

Difficult conversations

One of the patients who end up for counselling with Mamatela on the morning of our visit settles into a comfy sofa in a room where there’s an old inspirational poster on the wall and a line of mannequin heads topped with wigs. The patient is a 33-year-old, diagnosed that morning with lymphoma. She’s happy that Spotlight sits in on her session.

“I can take whatever comes. I’m ready for it even if they must take my breasts,” she says. She talks about what she’s Googled and asks about changing her diet and getting a sick note for work. But as the conversation deepens, Mamatela’s gentle, practical advice hits home about the long and tough journey ahead with treatment.

“You must be careful of Dr Google, please. You can eat what you like, but remember that the things that you like before maybe will make you feel sick after the chemo, so expect that,” Mamatela tells her.

The woman looks down at her hands as Mamatela tells her that along with her hair falling out that maybe her nails will darken and become brittle and not grow back as quickly after chemo. She offers gently that dark nail polish can help disguise chemo-wrecked nails.

Mamatela also prepares her for the long waits she will probably have to endure at Charlotte Maxeke, where she will have to go for chemo, and tells her she’ll have to manage her frustration and annoyance.

“But we’ll find you there, that side, my love,” she says. She’s at Charlotte Maxeke most Fridays. Sometimes it’s to drop off or pick up out-of-town patients arriving in Johannesburg for treatment – sometimes just to cheer on patients.

Read more in Daily Maverick: “Patients endure a deadly wait for cancer treatment in Gauteng hospitals

The next person she sees is a woman whose cancer has returned after 17 years in remission. She also buried her daughter just a month before, a 44-year-old mom of two, also from cancer.

“I don’t know how I’m going to tell my grandchildren about this – they just lost their mother to cancer and they will think they’ll be losing me too,” she says.

There are tears. Mamatela places her hand with its pink-tipped nails on the woman’s knee and just lets her take her time to cry. Both women share their experiences of having gone through chemo before – they call the intravenous chemo drug by its nickname – “the red devil” – and talk about being on remission medication.

Afterwards, Mamatela admits it was a tough session. “Cases of recurrence are the hardest for me. It’s because it shows that cancer can come back – even after 17 years. I guess I think of my own journey and of other survivors.” Over the years, the Breast Health Foundation staff has counted their own among the fallen. The pendulum swings to the hell of grief and loss.

Cancer patients on chemotherapy often lose their hair during treatment. (Photo: Rosetta Msimango / Spotlight)
A knitting group at a Randburg retirement home donated knitted knockers to breast cancer survivors. (Photo: Rosetta Msimango / Spotlight)

‘Knitted knockers’

As Mamatela makes it back to the office, she meets up with another outpatient, Olivia Marescia. She’s had a double mastectomy and is choosing a new pair of “knitted knockers” – the knitted prostheses are an alternative to surgery and expensive silicone prostheses.

Marescia rummages through the “knockers” with Jenna Skews, who a decade ago was a teenage survivor and is now responsible for marketing at the foundation. They giggle at the sizing before Marescia settles on a more modest-sized pair. “My little grandson always asks if I’m wearing my fake boobies – but sometimes he asks me that in the shops and I want to die,” she says with a laugh before giving the knitted knockers a squish to test their firmness.

Read more in Daily Maverick: “‘The government is killing cancer patients by keeping us on waiting lists then sending us home to die’

The bags of donated “knockers” include those that Mamatela and Skews received at a morning tea the previous day, organised by a knitting group at a Randburg retirement home. The foundation does outreach work and breast health education for such groups. One of the knitters, Elrina van Schardenberg, said in handing over two big bags of “knockers”: “I want the women who receive these to know that we don’t know each other, but we are all one family.”

When Marescia hears this story, she smiles and draws the pair of “knockers” close to her heart.

By morning’s end, Marescia crosses paths with Mamatela again in the clinic corridors.

“You’re still here?” Mamatela asks.

“Yes, I’ve just come back from the Prof [Benn] and she says I don’t need to have radiation – praise the Lord,” she beams.

Mamatela claps her hands together. She is as ecstatic as Marescia is about the news. The pendulum swings back to hope. DM/MC

This is the latest article in Spotlight’s #WhatItsLike series. We previously asked what it is like to be a cleaner at a public sector hospital, a public sector pharmacist, a midwife, a student volunteer, surrogate, and the person charged with heading up a busy emergency department. At the start of the Covid-19 pandemic, we also looked at what it is like to be health and safety officer and a manager in charge of food services at a public sector hospital

This article was published by Spotlight – health journalism in the public interest.

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