The FL Community Podcast

In our latest episode of the FL COMMUNITY PODCAST, we are pleased to welcome Sally Hurman from @gettingstuffdoneinheels. Sally’s husband Gav was diagnosed with Follicular Lymphoma in late 2014. She joins us to discuss not only the impact of an FL diagnosis, but also its effect on loved ones and carers.Follow Sally Hurman!https://www.instagram.com/gettingstuffdoneinheels?igsh=YnFvMTE4d2Q1bzNjhttps://substack.com/@sallyhurman?r=3vkc9o&utm_medium=ios&utm_source=profile&utm_content=link_in_bio&fbclid=PAdGRleAP69cJleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAacBMBeQnsG32vsG6rmR_xXRxXCiW1ixK5WKJTVntWhVBgy9QmtEEy1k6-AeFw_aem_vqMqQtrNNGx-kVRFccEytwThe international nonprofit bone marrow donor centre that Sally has represented:https://www.dkms.org.uk/learn-more/about-dkms/dkms-around-the-worldLiving well together with follicular lymphoma, for The Patient Story, featuring our host Nicky and her husband Craig.https://www.youtube.com/watch?v=8H2v4yQzXfoSend a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this bitesize episode, we take a moment to catch up after the holidays and reflect on the start of a new year. We share a few personal reflections, talk through our New Year intentions, and give you a sneak peek into what’s coming up on the podcast in the months ahead.We also open the door wider to you, our community — inviting your ideas, questions, and suggestions for future episode topics and guests. This podcast is shaped by the real experiences of people living with follicular lymphoma, and your voice matters.Whether you’re listening while easing back into routine or setting intentions for the year ahead, this episode is a gentle reset and a look forward to the meaningful conversations to come.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this special holiday edition, Nicky, Paul, and Nicola open up about their own challenges during the festive season and offer simple strategies for managing energy, emotions, boundaries, and expectations. A supportive guide for anyone facing the holidays while living with FL.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this very special anniversary episode — recorded in person at the Meta offices in London — founder of the Living With Follicular Lymphoma (LWFL) community, Nicky Greenhalgh, and founder of the Follicular Lymphoma Foundation (FLF), Nicola Mendelsohn, come together to celebrate 10 years of LWFL.For the first time side-by-side, Nicky and Nicola reflect on how they first connected through Facebook and how their journeys, work, and friendship have evolved over the past decade. They share heartfelt stories about the early days of LWFL, the incredible growth of the community across more than 100 countries, and the power of bringing people together who were once strangers but share one thing in common — FL.This episode also shines a light on the Follicular Lymphoma Foundation (FLF) and the extraordinary work it has achieved since launching in 2019. From funding world-leading research, uniting global scientists, hosting patient-centred webinars, accelerating clinical trials, and building platforms that elevate patient voices, FLF has become a driving force for change in the FL world.Together, Nicky and Nicola discuss not only what has been achieved so far but also their future plans — from new research initiatives to expanding patient resources, strengthening global collaboration, and continuing to push toward better treatments and ultimately, a cure.This conversation explores the importance of connection, compassion, and lived experience. Nicky and Nicola open up about their own challenges, the role of gratitude and resilience, and why amplifying the voices of FL patients matters now more than ever. Their shared belief that a cure is within reach shines throughout the episode.Whether you’re newly diagnosed, long into your FL journey, or supporting someone you love, this episode is a celebration of community, strength, progress, and hope.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this episode, Nicky, Paul, and Nicola sit down with Dave Harrison to talk about his remarkable journey with follicular lymphoma and his experience on a bispecific antibody clinical trial. Dave also shares what it was like working with Nicky as his nutritionist while preparing for treatment — and how small changes in nutrition, mindset, and daily habits made a big difference along the way.He opens up about the reality of being part of cutting-edge research — the physical challenges, the emotional highs and lows — and how connection within the community gave him strength when he needed it most.🎧 Listen now and be inspired by Dave’s honesty, courage, and unwavering spirit.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this moving episode of The FL Community Podcast the team sit down with Charlotte Cox — founder of Lymphoma Out Loud — to explore what it really means to self-advocate as a patient.Charlotte was just 27 when, after two years of being misdiagnosed, she was told she had stage 4 follicular lymphoma. What followed was a journey marked by courage, persistence, and purpose. From fertility preservation and chemotherapy, through relapse and recovery, Charlotte has transformed her frustration at delayed diagnosis into a powerful movement for awareness and education.https://lymphomaoutloud.org/BBC Radio 5's You, Me and the Big C:https://www.bbc.co.uk/programmes/p0608649/episodes/downloadsSend a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this extended episode, we open up a conversation that’s often overlooked: the emotional and psychological impact of living with FL with insights from our resident psychotherapist, Dr Paul C. Mollitt. From the uncertainty of “watch and wait” to the ripple effects on relationships, we share personal experiences, explore how cancer intersects with existing mental health challenges, and highlight therapy, peer support, and coping strategies. Our aim is to reduce stigma, provide practical tools, and remind you that it’s okay not to be okay - support is out there, and you are not alone."If someone close to you has low-grade non-Hodgkins Lymphoma: A Film for Children":⁦https://youtu.be/Hr6QLJc4jE4?si=sfaXz9YvIn36KkEh⁩ Full Catastrophe Living by Jon Kabat-Zinn:https://www.goodreads.com/book/show/41016873-full-catastrophe-livingSend a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this episode, we’re joined by Simon, a long-time member of the Living with FL community whose story is marked by resilience, grace, and determination. First diagnosed with diffuse large B-cell lymphoma in 1999 and later facing a relapse as follicular lymphoma in 2017, Simon has endured not only cancer treatment but also serious health challenges including heart failure and a stroke. Despite these twists and turns, he continues to live with purpose as a patient advocate and community supporter. Inspired by his hero Winston Churchill, Simon’s message is simple yet powerful: just keep going.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this episode, the team discuss how to cope with common treatment side effects across the major treatment protocols of FL, focusing particularly on diet, exercise and mental health.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com

In this episode, the team discuss the sometimes confusing FL treatment protocol of 'Watch and Wait' and how to cope with this period psychologically, physically and nutritionally.Send a textPlease send your comments, questions and feedback to: [email protected] Here are some other websites that might be useful: Living with Follicular Lymphoma Facebook Group The Follicular Lymphoma Foundation Robert Miller's comprehensive collection of resources built over decades on how to live well with FL: https://lymphomasurvival.com