Lymphoma Voices

Mez talks with honesty about his diagnosis and treatment for diffuse large B-cell lymphoma. As a 42-year old Indian Hindu with a wife and 1-year old daughter, he found it hard to find others going through the same experience and wanted to share his story to support others like himself. He talks about the challenges of treatment and how he created circles of friends and family to support him through the difficult times. Mez is a problem solver and explains how important it was for him to arm himself with as much information about lymphoma as possible; leaving clinical decisions to the medical professionals who he put his trust in. He speaks candidly about his struggles with fatigue and extreme short-term memory loss and strategies he adopted to help him. Now in remission, and with a new addition to his family, Mez cherishes the joys of family. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Tom Kerry is the Lead Pharmacist for Oncology at University Hospitals of Morecambe Bay. In our latest podcast, Tom takes you behind the scenes of the hospital pharmacist. He explains how pharmacists work with the wider clinical team, including haematologists and clinical nurse specialists. He explains how the pharmacist provides the expertise when it comes to medicines, ensuring they are used in the right setting and for the right person. He also explains how the pharmacist is key to ensuring newly approved drugs are available to prescribers and therefore to patients. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

In this podcast Mike and Kasia talk about their diagnosis of cutaneous (skin) lymphoma. Mike has had skin lymphoma since 1999 and Kasia was diagnosed in 2023. Both Mike and Kasia are living with mycosis fungoides (MF), which is the most common type of skin lymphoma. Five years seems to be a bit of a theme, as Mike was living with MF for five years before he found out he had a skin lymphoma. Kasia started struggling with severe itching when she was pregnant and it was hoped the itching would go away once the baby arrived. However, it ended up taking five years until a diagnosis was finally reached. Over the years, Mike has had treatment with topical creams, ultraviolet light therapies UVB and PUVA and retinoid (oral) drugs including Baxarotene. However, the symptoms kept reappearing, so Mike went on to have treatment with allogeneic stem cell transplantation (using a donor). This has resulted in him being symptom-free since 2015. Kasia is currently using topical steroids as well as methotrexate (an immunosuppressant), but acknowledges that she is at an early stage with her skin lymphoma. She explains how something as simple as having a shower causes her excruciatingly pain. Both Mike and Kasia talk about the challenges of living with a skin lymphoma, including the effect it has on family and work and the difficulties of living with a rare condition that very few people have even heard of. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

In our latest podcast, Def Leppard guitarist Vivian Campbell talks about his career and his diagnosis of Hodgkin lymphoma. He explains how Marc Bolan of T-Rex inspired him to become a musician and the joy and theatricality of performing with Def Leppard worldwide. Troubled by a number of symptoms, he shares his feelings on having a diagnosis of Hodgkin lymphoma and the treatment he was facing. He explains how he was certain he wanted to keep working as music is his life and how, not for the first time, the band were able to adapt. Viv speaks with honesty about the challenges of the various treatments he has had to keep one step ahead of his cancer. He marvels at life, making it clear that he won’t let his lymphoma hold him back from living an amplified life. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Helen Knight, Director of Medicines and Evaluation at the National Institute of Health and Care Excellence (NICE), talks to Lymphoma Action’s Policy and Public Affairs Advisor, Tara Steeds. In the podcast they discuss Health Technology Assessments and their role in making new treatments available through the NHS. They also discuss the role and impact of people with lived experience of lymphoma in the process, as well as that of organisations like Lymphoma Action. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Dallas and Lesley share a passion to change society’s relationship with death and dying, and to support all of us to have timely conversations about our wishes, should a time come when we can no longer speak for ourselves; through a lack of mental capacity or when we die. Courageous conversations with those who are important to us can be empowering and reassuring for those we leave to make decisions on our behalf. In this podcast, Dallas and Lesley talk about triggers for thinking about these issues, practical things to consider, how to plan for and have these conversations, and how - once you've had the conversation - you can pack your wishes into a box and put it away until later. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

John’s lymphoma story begins almost 50 years ago in the shipyards of Newcastle and a diagnosis of Hodgkin lymphoma that was kept from him. In a twist of fate, his daughter also received a blood cancer diagnosis. In this podcast John talks about his emotional lymphoma experience which led him to a career as a lymphoma clinical nurse specialist and more recently an author. He talks also about what helped him through some dark times and how he feels about being one of the longest cancer survivors. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

In this podcast Professor George Mikhaeel, Consultant Clinical Oncologist at Guys and St Thomas’ NHS Foundations Trust, explains what radiotherapy therapy is and when it is used in the treatment of lymphoma. He explains the three steps involved – an initial consultation and consent, the planning phase and then treatment. Although radiotherapy was available before chemotherapy, there have been enormous advances in this form of treatment and Professor Mikhaeel explains how and when it offers a really targeted approach to treatment. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Lou was diagnosed with follicular lymphoma in 2017. In this podcast, she talks about how living with a low-grade non-Hodgkin lymphoma can be challenging; wondering when and if you will need treatment again, the impact of living with lymphoma on her mental health, and the value of information and support at the right time. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Angie and John talk to Anne about the role of stem cell transplants in the treatment of lymphoma, when they are used, and the important differences between allogeneic (donor) and autologous (self) transplants, and the challenges in deciding between these two different treatment options. This podcast includes discussions around this often very difficult subject, and contains information on side effects and treatment outcomes that may be potentially distressing. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Lyle was diagnosed with Hodgkin lymphoma in 2021, at the age of 19. In this podcast, Lyle and his mum Julie talk about their shared experience of lymphoma, from diagnosis to treatment and beyond, and how their experience inspired them to fundraise for Lymphoma Action. Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences. Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk

Manil Subesinghe, talks to us about the vital role radiology plays in the diagnosis and management of lymphoma. This podcast gives an insight into this key role in guiding treatment and decision-making, reviewing treatment outcomes, and in overall supporting individuals with lymphoma.

Two of our volunteers Penny and Mark join Carly, Volunteering Development Manager, to share life as a Lymphoma Action volunteer and how their volunteering makes a difference for people affected by lymphoma and their own personal experience of lymphoma.

Shortly after 28-year-old Nia had moved to the UK from the USA, she discovered a lump in her neck. Here she talks about her diagnosis of Hodgkin lymphoma, how healthcare differs in the UK compared with the USA, chemotherapy, radiotherapy and ways she coped with treatment.

Katie was diagnosed with Waldenström’s macroglobulinaemia (WM) - a type of lymphoma. When she was being considered for treatment for her lymphoma, she was offered the opportunity to join a clinical trial. In this podcast, Katie describes her diagnosis, her treatment journey, and the decisions behind accepting treatment through a clinical trial.

Advanced Nurse Practitioner Charlotte Bloodworth explains what relapsing in lymphoma means, strategies for treating and managing relapse, and support strategies for coping with concerns around relapse.

Lord Menzies Campbell, Patron of Lymphoma Action, talks to the Charity's Chief Executive, Ropinder Gill, about his esteemed and varied career, how some of his greatest achievements have been since his diagnosis of non-Hodgkin lymphoma in 2002 and the important role that charities play when influencing policy and decision makers to ensure better health outcomes for those affected by cancer.

Dr Bridget Wilkins, Consultant Haematopathologist, takes us through the fascinating topic of pathology: what it is and the part it plays in the diagnosis and management of lymphoma. This podcast also gives an insight into this important role within the multidisciplinary team, supporting individuals with lymphoma.

Scotland sevens international rugby union player and Team GB member, Robbie Fergusson, and Lymphoma Action volunteer Mike Taylor both reflect on their experiences with lymphoma. Robbie talks about the impact of his Hodgkin lymphoma diagnosis on his career at the time, his recovery post-treatment and his experience of taking part in the Tokyo 2020 Olympics.

Palliative Care Consultant and NHS England National Clinical Director for Enhanced Supportive Care, Dr Dan Monnery talks about the principles of enhanced supportive care (ESC), the benefits to this approach and how it differs from other types of care, and his wish that ESC be offered to everyone receiving a cancer diagnosis.