The pain caused by the tumour that has crawled over her face is excruciating – yet it pales in comparison to the hurt caused by strangers pointing, staring and jeering.
Ntomboxolo Maqubela’s face is almost completely obscured by an enormous tumour that has robbed her of a normal life. Her dreams of a career, owning a home and a car and starting a family have been scuppered by the mass which refuses to go away, despite a string of surgeries.
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The electrical engineer has lost her sight in one eye and her speech is now almost inaudible, reduced to a mumble. It has been years since she’s enjoyed a normal meal. She is no longer able to eat solid food as the tumour has spread to cover part of her mouth.
These days her diet is limited to liquids and soft, mushy meals. Ntomboxolo (31) is fast losing hope. The tumour has made her life a living hell, she tells Move!. After years of living with the growth, she still struggles to come to terms with it. “I don’t know if it will grow. I just want this tumour gone,” she says.
STARTED OUT HARMLESS
Despite having ruined her life, the tumour, which started growing in one of the sinus cavities, is benign. Ntomboxolo has already undergone multiple operations over the past decade to remove it but each time it has returned, and grown bigger.
It’s hard to believe it all started with what seemed to be a harmless sinus infection in March 2008. Back then, Ntomboxolo was a secondyear electrical engineering student at the Cape Peninsula University of Technology in Cape Town.
She was looking forward to completing her studies and settling down. Her dreams never materialised, and she doubts they will. Most of her days are spent indoors now away from the eyes and taunts of cruel strangers.
“Sometimes my family will take me out to a movie but because of the way people react when they see me, I no longer go out.”
A STRING OF SURGERIES
She lives in East London now, with her aunt, Thami, and uncle, Luvuyo Maqubela. We’re speaking to her via a video call, but it’s cut short because her speech is inaudible, and we switch to communicating through WhatsApp messages.
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Ntomboxolo initially thought she just had a cold or flu. She thought it was just sinusitis and bought a decongestant at a pharmacy.
A few days later, she was fine, but later that year the symptoms returned, and this time it was much, much worse. “My left eye started to pop out,” she recalls.
“I went to the clinic on campus and a nurse examined me and referred me to a day hospital.” At the day hospital, the doctor admitted it was the first time he saw a condition like hers and he referred her to the Head and Neck Oncology Clinic at Groote Schuur Hospital.
There, doctors performed a scan on her face and suspected she might have a cancerous tumour, but they were unable to pinpoint the cause. They asked her to return within three months. In that time, her left eye became increasingly swollen and was moving out of its socket.
She also noticed a growth, which she says looked “like raw meat”, developing on the left side of her nose. When she returned the doctors confirmed that a tumour was growing in her nose. “They decided to operate to avoid complications.”
Surgeons successfully removed the tumour, and her life returned to normal. In 2010 her eye started swelling again and the swelling moved to her nose too. She went under the knife once more, but after a few months it returned.
Five years later the tumour had moved to the left side of her jaw. Doctors suggested removing her left eye and performing a skin graft on her face, using skin from her leg to improve her appearance. But she was not prepared for that surgery.
“I told them I couldn’t. I decided it would be better to go home and die because it felt like the tumour was already killing me,” she says. She hasn’t had any surgery since and the tumour has continued to grow.
PUSHING PAST THE PAIN
Ntomboxolo graduated from university in 2013 with her national diploma in electrical engineering, an accomplishment that took a lot of determination. “I couldn’t cope,” she says.
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“I was failing because I wasn’t attending classes. But I pushed on.” In August this year she moved to East London to live with her aunt and uncle. They now care for her, but Ntomboxolo says life in the big city was easier. “In Cape Town I was free. In the Eastern Cape people laugh at me and tell me I’m ugly.”
Not only has the tumour changed the course of her life, the pain she endures daily has added to her feelings of hopelessness. “I have a lot of pain and bleeding,” she explains. After a check-up last year, doctors told her the tumour had spread to parts of her skull which are difficult to reach surgically and operating could be very risky.
However, Ntomboxolo recently visited a specialist in Joburg who says the tumour is operable*. In the meantime, she’s found a natural alternative to treat the pain – cannabis oil. It helps, but it’s expensive. A friend suggested she try it, and after some online research she found medical scientist, Dr Shiksha Gallow, the head researcher at Cannabis Oil Research, based in KwaZulu-Natal.
Ntomboxolo can’t afford the full treatment, so instead she buys one vial at a time. “I noticed the vials help and thought if I could use the full protocol at once, maybe the swelling will go down,” she says. She and her friends are now campaigning on social media to raise money for it. “I’ve made peace with the fact my face will never be normal again, but I just want this tumour gone