Head and Neck cancers matter – Hazel’s tonsil cancer battle and return to cycling and Spain

Small lump signals tonsil cancer

My journey with squamous cell carcinoma (tonsil cancer), a form of head and neck cancer, began with a seemingly minor neck discomfort during my retirement in Spain. I led an active and healthy lifestyle, was an avid cyclist and hiker and hadn’t consumed alcohol or cigarettes in over a decade. Despite this, I discovered a small lump above my collarbone, which raised concerns. However, I remained energetic and symptom-free, continuing my daily activities. Little did I know that my life was about to take a dramatic turn over the next two months.

Biopsy confirms the presence of HPV 16

After a series of medical visits, including a biopsy and scans, I was diagnosed with squamous cell carcinoma of the right tonsil with lymph node involvement. The cancer was related to the HPV16 virus, and the medical team proposed a treatment plan involving high-dose radiation and chemotherapy. I also received VMAT (Volumetric Modulated Arc Therapy) radiation, a technique that precisely targets cancer cells while minimizing harm to healthy tissue.

Coping with the gruelling treatment

During my cancer treatment, I established a twice-daily 45-minute oral care routine using a prescribed gel to protect and heal the ulcers inside my mouth. Despite the irritation, I found that they didn’t cause me pain at that point. I followed a strict protocol, including not drinking anything for 30 minutes after using the gel. This was followed by breakfast and high fluoride toothpaste applied with a soft baby toothbrush. I also applied a cream to my neck to prevent potential third-degree burns, maintaining my habit of using factor 30 sunscreen even during treatment.

Eating and sleeping struggles

As the treatment progressed, eating became increasingly difficult for me. Even consuming a protein drink took a considerable effort and 45 minutes to get down due to the dryness and discomfort in my mouth. I strived to ingest three of these drinks per day to maintain my calorie intake, but the process was far from easy. Therefore, it was decided that I would have a nasal feeding tube fitted.

On the weekends, I spent most of my time in bed with a humidifier, which brought me relief. I sought support from my network of friends who were also battling cancer, sharing tips and hints as we faced this challenging journey together. Despite the extreme adversity we encountered, I remained determined to overcome this dreadful disease.

In addition to my eating struggles, I had to contend with radiation burns as a result of my treatment. A nurse noticed the burns and provided me with special bandages to alleviate the heat and stinging sensation. Another struggle was with sleep; during treatment, I was lucky if I got 3 constant hours before secretions had to be cleared.

Surviving and reflecting on my tonsil cancer journey

After 35 rounds of radiotherapy, 2 rounds of chemotherapy, and years of recovery, I recently celebrated 5 years since my last cancer treatment finished. When asked for advice, I emphasize the importance of taking one day at a time and listening to your body, especially during the early days of diagnosis and treatment. I stress the significance of doing swallow and mouth exercises regularly, as they contributed to maintaining my swallow function. While cancer treatment can be brutal, I encourage individuals to embrace the need for time to convalesce and heal properly.

I remain actively engaged in cancer support communities, including Macmillan and Oracle Head & Neck Cancer UK. Additionally, I advocate for the HPV vaccine‘s importance. I use the hashtag #headandneckcancersmatter to raise awareness. My grandson, who is now eligible for the HPV vaccine, spreads the message among his peers, hoping to reduce the prevalence of HPV-driven tumours in the future.