In 2011, I was diagnosed with base of the tongue cancer, a form of head and neck cancer that often presents without early symptoms and is frequently linked to HPV (human papillomavirus). My treatment included aggressive rounds of radiotherapy, chemotherapy, and ultimately, two radical neck dissections. While these treatments were necessary to save my life, they also left me physically broken, emotionally overwhelmed, and mentally spiralling. One of the most overlooked aspects of my journey was the psychological trauma I endured not just during treatment, but in the months and years that followed.
I lost over 12 stone in weight, my ability to eat and swallow normally was severely impacted, and I was left with physical scarring and a profoundly altered sense of identity. I suffered in silence for far too long, slipping into a darkness of depression that led to suicidal thoughts. I had survived cancer, but I was no longer living, I was merely existing. At no point during the early stages of my care was I offered a comprehensive holistic needs assessment.
There was no joined-up approach to assessing my mental wellbeing, my nutrition, my speech and swallowing difficulties, or my social circumstances.
The absence of a personalised care plan meant that I had to navigate post-treatment life alone, with no clear pathway or coordinated support.
This experience is not unique to me. As the founder and chief executive of The Swallows head and neck cancer charity, I now hear stories like mine every day.
Our charity supports thousands of patients and caregivers annually, many of whom tell us they feel abandoned once treatment ends.
They face long-term and life-changing side effects pain, fatigue, speech and swallowing difficulties, disfigurement, isolation, and mental health challenges. These individuals need care that goes beyond the hospital walls.
The Department of Health has said that all cancer patients should receive a holistic needs assessment and a personalised care plan before or at the start of their treatment, and this is welcome.
But we must go further and faster to ensure these measures are not only in place, but also implemented consistently and effectively across all NHS trusts and cancer centres.
We believe a holistic needs assessment must be standardised and completed within the first two weeks of diagnosis, with regular follow-ups throughout the treatment journey and into survivorship.
These assessments must go beyond ticking boxes; they must genuinely explore a patient’s psychological, emotional, nutritional, social, and practical needs.
The personalised care plan must then be developed with the patient and caregiver, not for them. At The Swallows, we have pioneered this holistic approach. Our 24/7 patient and caregiver support line, virtual and in-person peer support groups, caregiver education, and support boxes are tailored to real-world needs, informed by people with lived experience.
We have developed emergency care cards, WhatsApp groups for laryngectomy patients, and are actively expanding our presence in underserved regions.
But charities like ours can only do so much. We need a national health policy to back this up, with resources, training, and accountability.
This is why we are supporting the Daily Express’s Cancer Care campaign.
As someone who has lived through the brutal physical and emotional consequences of head and neck cancer, I know that surviving is only the first step. Truly living again mentally, socially and emotionally requires a safety net of compassionate, coordinated care.
If I had received a holistic needs assessment and personalised care plan at the start of my journey, perhaps I wouldn’t have reached such a low point.
But through my recovery and my work with The Swallows, I’ve found renewed purpose: to ensure no one else feels as alone and lost as I did.
It’s vital that holistic, personalised support becomes a reality for every patient.
This story originally appeared on Express.co.uk
