Patient Stories

A Journey of Faith, Hope, and Second Chances

My Oral cavity cancer diagnosis

In September 2022, my life took an unexpected turn when I was struck by excruciating ear pain. Little did I know, it was just the beginning of a battle I never imagined I would face. As the months passed, the pain intensified, spreading to my lymph nodes, jaw, teeth, and even my tongue, leaving me in unbearable agony. Despite seeking help from my GP and dentist, the initial attempts with antibiotics provided no relief. Unfortunately the initial hospital I was referred to opted not to conduct any scans.

Frustrated by the lack of progress, I requested my GP arrange an ultrasound scan, and the report, initially interpreted by a visiting GP at my surgery as benign, was later found to be inaccurately assessed. Undeterred, I continued to push for further investigation, leading me to the remarkable team at Royal Surrey Guildford.

Nilani Jeyakumar and her daughter

Under the care of the incredible Consultant Mr. Steve Walsh, I received a devastating diagnosis – advanced squamous cell carcinoma, stage 4, invading the bones of my lower jaw. Yet, amidst the despair, there was a glimmer of hope as Mr. Walsh and his team swiftly devised a treatment plan, providing much-needed relief from the agonising pain.

12 hour surgery treatment for squamous cell carcinoma

Incredible Head and Neck surgeons – Mr Bajwa, Mr Bater, Mr De Souza and Mr Danford performed the reconstruction of its kind at Royal Surrey hospital which involved flap taken from the back of my shoulder to reconstruct my right tongue and the lower jaw was reconstructed with a titanium plate.

The journey ahead was daunting. After enduring a gruelling 12-hour surgery, followed by 30 sessions of radiotherapy, my resilience was pushed to its limits. Witnessing the toll it took on my loved ones, I found solace in their unwavering support and drew strength from my faith. Despite the ongoing side effects, including numbness in my right jaw and the removal of nerves and salivary glands, I remain determined to persevere. My resolve surprised even my incredible medical team as I refused to rely solely on a feeding tube. By the fifth month, through sheer determination, I transitioned to taking all medications and nutritious drinks orally, leading to the removal of the tube.

Throughout the ordeal, the support system surrounding me played a pivotal role in helping me navigate the emotional turbulence. From the compassionate care of the Head and Neck Specialist Nurse to the constant monitoring of the Multidisciplinary Team, I was enveloped in a blanket of care and encouragement.

Road to recovery brings renewed faith

Though the road to recovery was fraught with challenges, it also brought unexpected moments of growth and gratitude. My faith deepened, fostering profound peace and acceptance within me. I learned to cherish the simple joys of life, finding solace in family, and rediscovering purpose through volunteering.

My husband is my pillar of strength,  during my battle with cancer.    He is the one who carried the cross for me.  Even with the fundraising walks, he’s accompanying me all the way.  An unsung hero.   He’s my 24/7 carer throughout my battle with cancer (the best carer that I could ever wish for).  Truly blessed indeed.  In my faith, I could simply call him – my St Joseph and my Hero.

To those embarking on a similar journey, I firmly believe – cling to hope, believe in your strength, and surround yourself with love and support. Trust in the guidance of your medical team and never underestimate the power of resilience. Even in the darkest of moments, there is light, and with perseverance, it is possible to emerge stronger and more grateful for the precious gift of life.

As I reflect on my journey, I am filled with immense gratitude for the second chance I’ve been given. It’s essential to learn from experiences like mine to prevent similar situations in the future. Remember, questioning medical professionals constructively and seeking second opinions are crucial steps in advocating for your health. Your well-being is worth the effort, even when faced with challenges.

#headneckcheck

Regular self-checks play a vital role in the early detection of Head and Neck cancer

Patient Stories