Lucy was diagnosed with a pituitary germ cell cancer at 6 years old when she presented with unexplained excessive thirst and night time drinking as many with this rare tumour do – a sign of hypothalamic and pituitary antidiuretic hormone (ADH- also called vasopressin or AVP) -deficiency causing diabetes insipidus. She also already had a full house of growth, pubertal, thyroid and cortisol hormone deficiencies, and also later developed what we now recognise as hypothalamic hunger and weight gain. These hormone deficiencies complicated her intensive chemotherapy; but after this and radiation, her tumour completely disappeared. She is left with an absent pituitary gland and hypothalamic injury. Lucy and her mother have worked tirelessly with Success from its beginning to share their knowledge of getting the hormone replacement perfect to optimise her growth, wellbeing, weight and maturation, ensure the right school support and access work placements that led to facilitated employment.
Lucy works four days a week across two part-time jobs that suit her strengths and accommodate the challenges she faces as a brain tumour survivor. While she found it relatively easy to secure interviews because of her GCSE qualifications, many traditional jobs with long hours, high pressure, strict deadlines and constant multitasking were not suitable for her needs. Ongoing difficulties with fatigue, processing speed, hearing and task- switching mean that flexible, structured work environments are essential.
Lucy now works for an artisan coffee company two days a week, where she carefully weighs and packages ethically sourced coffee beans for delivery to local coffee shops. She also works two days a week at a paper bag supplier, counting, bundling and preparing orders in a warehouse setting. Both roles involve routine, practical tasks that she enjoys and can perform confidently.
A key factor in Lucy’s success has been having supportive employers who understand her needs and make reasonable adjustments, including flexible breaks and working hours. She describes her managers as kind, compassionate and encouraging, helping her maintain confidence, motivation and a sense of purpose.
After some difficult experiences finding the right role, Lucy’s advice to other survivors is to be realistic about their abilities and limitations and to seek work that fits their individual needs rather than trying to meet unrealistic expectations. She recommends exploring opportunities through job websites, social media, local authority “Local Offer” services and disability employment events. Work placements and supported employment programmes can also provide valuable experience and help build confidence.
For Lucy, employment provides much more than income. It gives her independence, self-worth, routine, social connection and the opportunity to contribute meaningfully. She also self-manages her complex schedule of thrice daily hormone replacements and carries an emergency injection pack. Her story demonstrates how, with the right health support and understanding from employers, brain tumour survivors with complex needs can thrive in the workplace and build fulfilling careers.
