Ngozi Onwuchekwa is the recent survivor of a rare soft tissue cancer called rhabdomyosarcoma. Within a year of remission, she won the Mrs Exceptional Lady Universe crown at the 2023 Mrs Universe pageant. She is currently raising funds for Sarcoma UK

The experiences of rare cancer survivors are often less reported than those of people with more common cancers, like breast, lung or bowel cancer. This lack of documentation underscores the need for more awareness and understanding of these rare conditions. That’s why it’s important to me that our voices are heard, and what better time to share my story than right now.

It was in the summer of 2020 that I was told, “You have rhabdomyosarcoma.” Utterly perplexed, I remember thinking, “Rhabdo…what?” I didn’t know what it was, let alone how to pronounce it.

I soon found out that “rhab-do-myo-sar-co-ma” is a rare, aggressive and deadly cancer from the sarcoma family. The latter being a general term for a broad group of cancers that begin in the bones, soft tissues and connective tissues. Typically, sarcomas account for less than 2% of all cancer cases diagnosed in the UK each year.¹ The news was a total shock, and it felt like my life was slipping away before it had begun. Learning that I was dealing with a disease so uncommon only added to my fear and uncertainty. Plus, it was daunting to realise that even medical professionals weren’t always sure how to approach it.

Throughout a challenging 15-month cancer treatment journey, I underwent gruelling rounds of chemotherapy and life-changing surgeries. I battled unbearable side effects and constantly wondered if earlier identification of my symptoms could have prevented hospitalisation. While the physical pain and discomfort were incredibly difficult, the toll on my mental health became increasingly apparent. I struggled with mood swings, depression, difficulty finding joy in anything, stress that kept me awake at night, and intense feelings of loneliness despite being surrounded by my family’s love. For the life of me, I couldn’t understand why my mental health was taking such a beating.

In hindsight, I realise that this disease can lead to you feeling like an experimental subject, with your treatment and responses to medicines being a learning process for others. Furthermore, my treatment plan often involved prolonged periods of isolation in hospital and the use of cancer medications so powerful that they altered my sense of self. The inadvertent result of all this was emotional distress and struggles with PTSD. All of which I felt I had to bear alone. I would constantly remind myself to stay quiet, not tell anyone, not make a fuss and just be grateful for receiving cancer care, especially after going through months of misdiagnosis.

To manage my mental health challenges, I would use simulated laughter and motivational talks to keep my emotions under control. Sometimes these tactics worked, but the burden of dealing with rhabdomyosarcoma and its accompanying battles felt increasingly overwhelming, and I struggled to cope.

Looking back, I realise that I didn’t have the tools or knowledge to handle the situation or to comprehend why my mental health was deteriorating. It’s disheartening to note that my healthcare team, while diligently warning me about the physical side effects of chemotherapy, scarcely mentioned the potential mental health issues that could arise.

You see, mental health is usually overlooked in cancer care because the main focus is on eradicating cancer cells and shrinking tumours. This is particularly regrettable for sarcoma patients, as research indicates that their five-year survival rates are generally lower than those with more well-known cancers.² Additionally, some experts believe that the limited clinical data and lack of solid evidence for making well-informed decisions can heighten the distress experienced by individuals with rare cancers.²

Numerous clinical studies have shown that such patients often grapple with heightened levels of anxiety, increased risk of suicide, and a higher prevalence of PTSD compared to those with more common types of cancer.²

It took a lot to admit that I needed help. Trying to cope with my mental health issues alone was proving to be futile. I was constantly anxious, depressed and inconsolable. No matter how hard I tried, I couldn’t shake these feelings or overcome them. I am sharing all this to say that if you or someone you know is facing similar challenges, please understand that you’re not alone. I urge you to seek help and remember that tending to your mental well-being is as important as taking care of your physical health.

Opening up to my oncologists and GP about my struggles was a turning point. They connected me with therapists who specialised in addressing mental health concerns related to cancer. They also recommended incorporating physical activity into my routine, sticking to a nutritious diet and maintaining a continuous open dialogue.

Indeed, engaging in physical activities, even short walks around my hospital room, played a vital role in helping me manage my emotions. It provided me with a sense of control and achievement in the midst of undergoing chemotherapy. Following a healthy and balanced diet, even when I lacked the motivation to eat, proved to be essential in sustaining my energy levels and managing feelings of depression and anxiety. Engaging in sincere conversations with trusted friends, family members, therapists or cancer support groups not only alleviated my stress but also made me feel deeply supported.

As a rare cancer survivor, I understand the unique challenges we face and the impact it can have on mental well-being. I have come to realise the importance of prioritising mental health and seeking help when needed and the positive results it has on the success of cancer care. If you or someone you know is dealing with sarcoma-related challenges, I urge you to ask for help because that’s the first step towards healing, and it’s okay to do so.

Accessing support can bring hope and optimism, even in the face of sarcoma. Feel free to reach out to organisations likesarcoma.org.uk. They offer valuable practical support and resources, including emotional support, support groups and a wealth of informational materials that can truly make a difference in your journey.

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