Building a larynx cancer survivor community

Wasifah Noorbhai, speech-language therapist and audiologist at Chris Hani Baragwanath Academic Hospital (CHBAH), tells the story of how a larynx cancer survivor community was built.

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Head and neck cancer, including laryngeal cancer, presents a significant health challenge in SA, with rising incidence rates. For those who undergo a total laryngectomy, a life-saving surgical procedure, the journey to recovery is multi-faceted. While the removal of the larynx (voice box) restores health, it also brings profound changes to voice and swallowing functions, impacting not only physical abilities but also social and emotional well-being. Recognising these challenges, a support group emerged at CHBAH in Soweto, dedicated to supporting laryngectomy survivors through their journey of healing and adaptation.

The group consists of three speech-language therapists. As it’s an open group, the number of attendances of laryngectomy survivors varies but usually encompasses around 10 members per group. Group members use different methods of voice restoration including electro-larynx, tracheoesophageal speech and oesophageal speech.

Sanctuary for shared experiences

The group serves as a sanctuary for shared experiences, advocacy, and empowerment. Petrus Ngakane says, “It makes me strong when we share our ideas together and we are happy and healthy.” Similarly, Dennis Hlatshwayo says, “It’s very nice to be together because I can learn from people from different places.” And Sechaba Lebakeng explained that, “We can talk and hear from different people and what they experience, and then I know I’m not the only one.” Survivors themselves play a pivotal role in facilitating these sessions, drawing from their lived experiences to offer invaluable insights and support to others embarking on similar journeys. Israel Nefale says, “The group is nice because I learn many things about taking care of myself.”

Opening up about the group members’ own experiences became a catalyst for growth, a journey of self-discovery and acceptance. Johannes Tshabalala shared that, “Sharing my story has changed my heart and my mind. I feel good because now you know about me and not just why I’m voiceless,” reclaiming his own narrative. Andrew Hunter says, “Sharing your story allows people to relate to you and understand you better.” Through the group, members had a newfound appreciation for life’s simplest blessings. “I’m happy” was the most common statement used by Petrus Gcantsana and many other group members when talking about the laryngectomy group. “I’m happy that I’m alive and I can breathe now,” says Maduna Mpololo. Each breath is a reminder of the resilience that thrived in the face of adversity. Hyron Classen explains that the group isn’t only about speech therapy but all the after effects that come with a laryngectomy.”

Education sessions

Through training and education initiatives, survivors have gained the skills and confidence to navigate their daily lives with greater independence and resilience. Perhaps most importantly, the group has fostered a sense of community and belonging amongst each other, alleviating feelings of isolation and empowering them to reclaim their voices in a world that may have seemed daunting. Maria Ralebofu says, “I love the group. We teach each other anything. When we don’t know something, we listen to each other.” Andrew Hunter said that, “We will always be in the group to teach one another and give courage to those who are also joining us,” as testament to the enduring power of community and compassion. Thabiso Mookholi describes that, “When new group members come to the group, they get courage and that lifts me up.”

Family member support

The group also welcomes family members of laryngectomy survivors should they wish to attend with their loved ones. Ashley Classen (family member) shared that, “It gives me confidence and comfort that my father’s voice can be heard.” Ashley’s advice for everyone is to, “Stay educated, stay motivated, and try your best to keep updated.”

The testimonies of the laryngectomy survivors and their loved ones demonstrate the transformative power of this group. Through videos, written accounts, and public speaking engagements, they share their stories, offer comfort, and advocate for greater awareness and support. Their voices, enriched by lived experiences, resonate far beyond clinical settings, inspiring hope and solidarity across communities.

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