After enduring months of being misdiagnosed, I was finally given the correct diagnosis in 2020 - rhabdomyosarcoma, a cancer of the bones, muscles, and soft tissues. When I heard the news, it was as if the ground beneath me had given way. The news was a seismic shock, and I found myself in a world abruptly turned upside down.
My journey through treatment lasted over 15 gruelling months, and it was a battle every step of the way. I faced relentless rounds of chemotherapy, life-altering surgeries, and unbearable side effects. The physical pain was overwhelming, but the toll on my mind and spirit was even more crushing. I battled through mood swings, depression, and overwhelming stress, often feeling incredibly lonely even amid loving support.
As someone who's always been determined and self-reliant, I tried to deal with the distress and PTSD brought on by cancer by myself. I used to give myself pep talks to overcome the emotional ups and downs; sometimes, they helped. But the impact of cancer on my thoughts, feelings, and actions was becoming too much to handle alone, and I would find myself struggling. I remember days when my hospital room felt suffocating; even the sight and smell of hospital food made me feel sick and hopeless. I found it hard to concentrate, my sleep was disturbed, and I often felt a sense of impending doom. These were all signs that my mental health was deteriorating, but I didn't fully understand it at the time.
Interestingly, it is common for mental health to be sidelined when fighting cancer, as the main focus is usually on treating the physical symptoms. But in hindsight, it's critical to acknowledge and voice these issues sooner rather than later. Initially, I tried to navigate these challenges independently, but I soon realised the necessity of professional support. It took time, but I came to understand that tending to my mental well-being was just as important as my physical. Seeking professional support was a turning point in my journey, and I encourage anyone facing similar challenges to do the same.
It is common for mental health to be sidelined when fighting cancer, as the main focus is usually on treating the physical symptoms. But in hindsight, it's critical to acknowledge and voice these issues sooner rather than later.
After discussing my deteriorating emotional state with my doctors, I received invaluable advice. They recommended maintaining physical activity, a balanced diet, and open communication. Indeed, engaging in simple exercises and eating healthily (even when I had no appetite) made a noticeable difference. But what truly uplifted me was the support of my friends, family, and the cancer support groups I became a part of. Their understanding and encouragement were instrumental in my mental wellness, and I can't stress enough the power of community in such challenging times.
My cancer experience was completely life-changing, and I made a promise to myself that if I survived, I would dedicate my life to increasing awareness and changing the way rare and deadly cancers are viewed while highlighting their impact on mental health.
My cancer story has not only reached millions but also directly impacted individuals. I often receive tons of messages via Instagram DMs and emails from cancer patients and battlers wanting some information, assistance, and guidance. I've been able to help by directing them to valuable resources and sharing my own experiences and coping mechanisms as a cancer patient and now a survivor. Furthermore, my advocacy work has included fundraising for rare cancers and cancer-related mental health programmes, which helps improve the research, education, and care that patients receive. This direct impact is a testament to the power of advocacy and the hope it can bring to those in need.
Interestingly, since delving into the world of fundraising, I have realised how challenging that can be. Many people feel that their contributions are often too little to effect change, which can lead to a reluctance to donate. Understandably, it's easy to feel overwhelmed by the sheer scale of issues like cancer affecting millions of people, and this can lead to a sense of powerlessness. But I believe in the power of individual action, and I'm determined to show others that even small efforts can make a big difference.
There is a pressing need for more awareness and education about rare cancers like sarcomas. The lack of understanding has resulted in high rates of misdiagnosis. At present, it can take an average of 6 months to be diagnosed, which is dangerous and can be fatal. At the moment, only 1 in 10 people are aware of sarcomas. This is in stark contrast to breast and lung cancer, for example, where almost everyone knows about them, and GPs are very knowledgeable about some of the early warning signs.
It is also extremely important for individuals diagnosed with cancer to receive comprehensive education on the potential impact of the disease on their mental well-being from their medical team. Seeking support for mental health is just as crucial as seeking treatment for the physical aspects of cancer. It's vital to emphasise that it is perfectly acceptable to seek assistance for mental health concerns whilst undergoing chemotherapy. Doing so requires courage and demonstrates strength, not weakness.
There is a pressing need for more awareness and education about rare cancers like sarcomas. The lack of understanding has resulted in high rates of misdiagnosis. At present, it can take an average of 6 months to be diagnosed, which is dangerous and can be fatal.
I will never get tired of saying that your mental well-being is equally as important as your physical health, and prioritising it is vital for overall well-being and recovery.
Securing the Mrs EL Universe crown and earning a spot as a finalist for the prestigious Mrs Universe title was an incredibly momentous achievement in my life. The experience of participating in such a grand and highly regarded contest in Miami while representing the UK was both overwhelming and deeply fulfilling, and it fills me with immense pride. The journey to the competition was unforgettable, filled with challenges and growth. From the initial preparations and training to the moments on stage, every step of the way was a testament to perseverance and my resolve to not allow the stigma and fears of cancer to hold me back.
Also, in my cancer remission (as I still am), I found the strength to run a marathon (despite the weakness in my muscles and bones) as a fundraising effort for Sarcoma UK charity. Surprisingly, my efforts were recognised, and I was invited to Downing Street, where I had the chance to meet Jeremy Hunt, the Chancellor of the Exchequer, as well as other cancer survivors and advocates. This invitation and ‘thank you’ for my advocacy work validated my dedication and effort to drive positive change. It also catalyses personal growth and has given me the platform and confidence to continue advocating for the causes I care deeply about.
Sharing my experiences, despite the pain, trauma, and push-back, has been a crucial part of my journey. By sharing the lesser-known aspects of cancer, including the emotional and mental toll, the impact on everyday life, and the often-overlooked issues that patients deal with, I hope to contribute to a more empathetic and informed community. It's a journey that's as much about personal growth as it is about advocacy.
I see myself as someone who uses their platform to initiate open, honest, and profoundly moving discussions about cancer, its related mental health impact and the numerous stigmas associated with it. Since winning the Mrs EL Universe title last year, my dedication to sharing personal, emotional stories and advocating for advancements in rare cancer research and education has not been in vain. All the messages I receive, the invitation to Downing Street, and the hundreds of readers, listeners and medical professionals who engage after hearing my story are a testament to the impact of my efforts. They show that even in the face of overwhelming challenges, individual action can make a significant difference.
Ngozi Onwuchekwa is the recent survivor of a rare and deadly disease, Rhabdomyosarcoma, and who, within the year of remission, also won the Mrs Exceptional Lady Universe crown at the 2023 Mrs Universe pageant in Miami, beating numerous adversities. The triumph has spurred Ngozi to use her newfound self-confidence and extremely challenging experiences to help others understand the early signs of the rare disease, how to cope whilst battling a deadly cancer, and how to stand up for yourself within the healthcare system when you have lost your ability to physically do so.
Born in Nigeria and part Brazilian, Ngozi came to the UK at the age of 11, honing and owning her large family's ambition. Now 45 years old and an advocate and fundraising partner of Sarcoma UK, Ngozi is best known for her informative voice drawing from her own experience of the disease. She is extremely passionate about spreading awareness and helping other patients know about not only the physicalities of the illness but also the effect a debilitating and deadly diagnosis can have on your mental health - how to navigate the support system you have available to you and how to ultimately stay strong when you are at your weakest.
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