A leading South African communications specialist and social entrepreneur is using her rare cancer to highlight the importance of resilience, community and African excellence during a time of unprecedented challenges for the world.
Vanessa Perumal, the founder of JT Communication Solutions, spent 24 days in hospital – of which 22 days was in ICU and High Care – following a total laryngectomy necessitated by the cancer which was discovered in her larynx just five days before her surgery.
The cancer, known as Chondrosarcoma, was removed through a laryngectomy by Dr Khaleel Ismail, an Ear, Nose & Throat (ENT) Surgeon from the WITS Donald Gordon Medical Centre. Dr Ismail assembled a stellar team of medical experts which included an Oncologist, VocaOncologist, speech therapist, and allied medical practitioners including a physiotherapist.
"The location of a Chondrosarcoma in the larynx is rare," states Dr Ismail. "Initially Vanessa Perumal was presented to our team as a referral in October with a breathing and voice problem. On evaluation, it was clear that there was vocal cord palsy. What was not clear was why CT Scans were equivocal and direct laryngoscopy show no lesions in the voice box. So we decided to do regular scopes and CT while considering other causes. On the repeat scan, which was delayed due to Covid, the Tumour became obvious."
Within the space of just three days, from the diagnosis on 9 May 2020 and following the results of a biopsy, Perumal and her family, husband Dee's Harilal and children, Taynita Harilal (23) and Jayaveer Harilal (19), had to confront the removal of her larynx - the portion of your throat that houses our vocal cords, which allow the production of sound, and which connects our nose and mouth to our lungs.
"To save my life I traded my voice box," says Perumal with her trademark directness. "This is a huge leverage in the work I activate as a media specialist, communications and digital futuristic."
"Discovering the Chondrosarcoma and having to perform an emergency total laryngectomy in less than a week has given us the opportunity to learn and discover ways to innovate and find solutions together with a team of professionals," adds Dr Ismail, who is a firm believer in working with teams and respecting the value and trust each expert brings to the team. "I think that challenges are at many levels but there are standardized management plans for the cases we deal with. Sometimes translating that plan and getting trained staff is the biggest hurdle."
One of the flag bearers of black excellence in the PR and Communications agency space, JT Comms has, under Perumal's guidance, consistently worked to amplify and build original African narratives. Showcasing the excellence of a medical team in Africa treating a rare cancer is part of why Perumal is sharing her experience through her Miraculous Moments diary on Facebook. She also wanted to highlight the work of the healthcare workers whom she encountered and contribute to the training of nurses who had not encountered a cancer like hers before.
"COVID-19 is shining a spotlight on the unrecognised champions of our society – the nurses, medical teams, and cleaning staff who are among the most marginalised working sector in any society. My experience in hospital was very hard at times, and I realised that a caregiver who is disempowered and doesn't have the training to do the work patients need tells a very different story on the ground. Ensuring medical teams know how to use medical apparatus and equipment and giving extra attention to the needs of a patient with a condition that they've never before encountered makes a difference to how your brand is positioned to the end user."
Perumal's hospital stay and cancer additionally reinforced for her "how imperative it is that we build our brands around humanity and empathy". This broader sense of humanity and Ubuntu is something that Perumal and her family worked ceaselessly to engender during her diagnosis, medical treatment and now as she recovers – without the voice she's known for 50-plus years.
"The legacy of apartheid means that living in Johannesburg's northern suburbs separates us from our roots and family. On normal days, this makes it difficult for us. But, when faced with this rare cancer and the removal of my larynx, during this unprecedented time of social distancing and lockdown, we knew we needed help – and we asked for it of our social, church, professional and family community. We continue to rely on a network of kind selfless humans all around us and in far-off lands rooting for us as a family, praying for us and offering us a helping hand. This kind of human interaction is priceless and has grounded and anchored us as a family."
Displaying the resilience and courage that have been part of her life since her days as an anti-apartheid activist on the East Rand, Perumal has shared insights as a social entrepreneur on a LinkedIn posting that details what she's learnt from her ICU bed in the time of COVID-19, and how she plans to confront the new normal - including learning to communicate without a voice box.
"Like almost all entrepreneurs and SMEs COVID-19 has been really difficult," concludes Perumal. "We have had to dig really deep to create enough resources to fund a life-changing medical procedure, keep our office open and take the time to heal without any government or small business bailout or support. But we are moving forward with some exciting new energy and momentum and I will continue to share my story to hopefully inspire others and showcase the possibilities of African excellence – sometimes against the worst odds. I'd like to extend my warmest thanks to Dr Ismail and the team for their expertise and care."
"The cancer removed is very rare and known to a few professionals," concludes Dr Ismail. "We have an opportunity to learn and share information on how to best handle the disease prior, during and post operation as we build systems around a procedure like this."