Cancer Myths and Unicorns with Naniki Seboni

“The C-Word” or “Big-C”, no one likes to hear it, especially from a doctor sitting behind a desk but there are few people who do not know someone or at least know of someone who has had to brave a cancer diagnosis.  With October being CANSA Women’s Health Awareness month, we chatted to Cancervive Ambassador and skin cancer survivor, Naniki Seboni to find out about her journey and shed light on some myths. 

Your journey to being a cancer survivor has been quite a long one, please share your story with us.

As an active growing child, playing outdoors was a must. Being in lockdown like today’s kids would’ve been absolute hell. But I guess we all have our hell; mine was the sun. I didn’t have a skin cancer radar, so when I started experiencing severe nosebleeds, multiple sunburns, skin changes, and the irregular development of my “jelly jot” mole, I didn’t think too much of it, neither did my parents. Smartly, I was introduced to using sunscreen but not in a consistent way, and not with any supporting sun-smart habits, but I was aware of my sensitivity to the sun and tried to move accordingly. 

Some 15 odd years later, a new black mole started making my life miserable, but I was clueless to the extent of damage the mole was causing, so I left it unchecked for another 4-years. During a visit, I told my Neurologist about the mole, she referred me to dermatology, where a biopsy was performed, and still I thought nothing of it. 

A month later, my whole world crashed – again. Battling with insomnia, a panic disorder, depression, and other neurological issues, I was in no mental state to handle a Stage III Malignant Melanoma diagnosis. What would that mean for me? Also, I’m black! Isn’t skin cancer a white person disease? 

True to my procrastinative nature at the time, I lagged with my hospital visits, missing appointments, dodging calls as though ignoring my health issues would somehow magically cure me. I fell into a deeper state of depression. I wanted nothing to do with anything or anyone for that matter. 

6-months later, I was tired of being scared. I was ready to face the Big-C, no matter the outcome. I got in contact with CANSA, and they connected me with their patient support group on Facebook called Champions of Hope. I found warriors and survivors from all over the country encouraging me to take my life back. I was only 25; I still had a lot of life ahead of me. 

And then the medical whirlwind week of my life began. Monday, I went to the hospital and handed myself over to the doctors. Tuesday, I was admitted. Wednesday, I went in for my surgery, and Friday, I was discharged. If I had known it would have been such a quick process, I would have faced it earlier, but as I said, I was emotionally and mentally in no state at the time of diagnosis. 

And just like that, I was declared cancer-free by the surgeon and the Oncologist after my follow-up appointment. And a new Naniki rolled out of the hospital and straight into a life of advocacy. 

The HOMEMAKERS team know you as the Cancervive Ambassador aka. CancerUnicorn, why is being an ambassador and awareness facilitator important to you?

When Cancervive approached me to be one of their ambassadors, my role was to show “the other face” of cancer. I was a young black girl facing a disease that was notably associated with older white people. It was an opportunity for me to share with black communities and my peers that anyone can be touched by cancer, and I was living proof that survivorship was possible. 

The CancerUnicorn persona was inspired by my journey as I thought, unicorns are these beautiful mystical creatures and this black girl with a “white person” disease was as much a mystical being. My story was almost unheard of, something of an anomaly. So I tapped into my story, some cancer knowledge, the unicorn essence, the Cancervive colours, my infectious energy, and the CancerUnicorn was born on stage as an awareness facilitator. 

I miss the stage right now and I miss the crowds and connecting with people. I miss looking into someone’s eyes and holding their hand. I’m bound to Instagram for now, but once we have full reign, I’ll be back at schools and hosting breakfast runs and more. 

The other side of this is also realising that my cancer journey started when I was younger, and if I could appeal and speak to the kids in a manner they could understand and grab their attention from the get-go, I was already halfway through my advocacy work. Imagine how many kids could be empowered with sun-smart habits to lower their skin cancer risk? And thus, I find myself truly motivated for the kids, but I don’t leave the adults behind, because they also need to be aware of themselves and their kids. Sun Smart habits all around! 

There’s a lot of myths around cancer, can you shed some light on some of the most common ones you’ve come across?

Geez, there are so many, but one of the most common I’ve come across is the same one I had, that cancer was a “white person” disease. I want you to understand something about these myths; I grew up at a time where people in my community were dying of HIV/AIDS, and it seemed to be so prevalent amongst black people. Whenever we heard about cancer, it was from a white person no one around me was having the cancer talk, and that’s why I encourage the cancer conversation, and hopefully, people take it home to their loved ones, not to scare them, but for awareness. 

What advice do you have for being cancer aware and protecting your skin?

The skin is the largest organ of the body, and we need to take better care of it. As unique as our fingerprints are, so can our cancer diagnosis, the form of treatment, how you will react to that treatment, and what your “normal” looks like. There is no cut-and-dry approach, but if we are aware of the main symptoms and compare those to your “normal”, we’ll be winning people. 

One super tip I can give about skin cancer is wearing protective clothing. And that means clothes that protect you from the sun’s penetrating rays. The best way to check is to hold your clothes up to the light and see how much light comes through. The tighter the fabric knit, the better, as minimal light will seep through. 

Ultimately early detection can save and prolong your life. It’s important to know your “normal” and seek medical attention as soon as you suspect something is wrong. 

 How can people support and get involved with organisations like Cancervive?

Like most industries, the lockdown restrictions have put a slow down on operations. We have an annual flagship event called the Cancevive Ride, where a group of 60+ people travel in convoy to schools, farms, and community halls. And with the current venue capacity restrictions, we can’t even have half of our dynamic team members there to share their journeys or create awareness. It’s been a challenge to see people face-to-face but we persevere. We are still available for wellness days and continue to support and counsel warriors, thrivers, and survivors alike, across online platforms. Covid won’t stop our passion anytime soon. If anyone or companies would like to get involved and support our initiatives, charity drives or host corporate wellness days online, they can contact us here: admin@cancervive.co.za.