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© 2024 Let's Talk About Brain Tumours
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Join us as we talk to those who have been diagnosed with a brain tumour, their friends, parents, partners and children as we talk about all things brain tumours. Find out more about how we are working to change the outcomes for those who are diagnosed with this terrible disease.
Please Note: We recognise that everyone's experience's are completely unique and will be different for everyone. The people who come on the podcast are sharing their own personal experiences, these may differ from yours or your loved one.
58 Episodes
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In this episode we meet Gavin Burden and Louise Worthington who have both been diagnosed with brain tumours, Gavin has been living with his brain tumour for 28 years after he was diagnosed at 21. Gavin and Louise have been friends for years so when Louise was diagnosed with a brain tumour in 2018 Gavin reached out to her to offer support. In the episode, they share the difficulties of living with hidden disabilities, with Gavin losing 75% of his vision due to his brain tumour. Despite the dif...
In this episode, Chandos talks to Beth Ryall, about the support available at the charity for people who are experiencing difficulties with their mental health following a brain tumour diagnosis.You can find out more about the support available here Better Safe Than Tumour Money Advice Clinic
In this episode, we talk to Anya Jones and Kaz Melvin about their experiences of rehabilitation. Anya was diagnosed with a brain tumour and needed extensive rehabilitation after her diagnosis and treatment whilst Kaz has both personal and professional experience of brain tumours and rehab. She is a physiotherapist but also supported her sister Ria who sadly died from a glioblastoma in 2021.Together Anya and Kaz have worked with the charity to create some resources to help people u...
In this episode, Chandos talks to one of our Future Leaders Dr Angel Alvarez-Prado. Angel is a highly accomplished researcher at the University of Lausanne in Switzerland where he is currently working on the innovative perspective of simultaneously targeting both cancer cells and their supporting immune microenvironment in the hope of finding more effective treatments for glioblastomas. Angel explains what his research involves and how it may help people diagnosed with glioblastoma in the fut...
In this episode, we talk to Alex, Katie and Martin. At 20 Alex was diagnosed with a rare paediatric brain tumour DLGNT with limited treatment options his mum Katie did her own research into how best to help Alex, finding help and support internationally. In February 2024 Martin, along with 3 of his friends are taking on the Everest in the Alps challenge to raise 500,000 to go towards research into paediatric brain tumours.You can follow Alex AKA Syren on Spotify here Find out more...
In this episode, we talk to Liam Young about his recovery from his brain tumour. Liam tried the traditional route of counselling but found this wasn't for him but he found his perfect form of therapy through a personal trainer.Liam talks about how at 25 he had never prioritised his health, but after his diagnosis he realised how important health actually and how that led to him embarking on a fitness program which he says helped him to deal with the mental and emotional trauma of his di...
In this episode we talk to Bethan and Gbenga Adelekan who's son Ravi was diagnosed with a brain tumour when he was just 6 years old. Despite this Ravi, now 8 has not let this stop him from using his experience to help others and also to continue to follow his own dreams!After his diagnosis and surgery, Ravi decided that he want to do something that would help other children like him and one day help find a way to stop any other child going through what he had gone through so with the he...
In this episode Anna and Chandos talk to Ben Rimmer, a research assistant at Newcastle University and the work they are doing on the quality of life of people diagnosed with low grade glioma's. The Ways Ahead research project aims to understand more about the lived experience of people with low grade gliomas and how to improve their quality of life. You can find out more about the Ways Ahead Research hereYou can find out more about the research that The Brain Tumour Charity fund h...
In this episode Will Garrett talks about the death of his dad when he was just 11 and how this has shaped his life. Will is now a Neuro Oncology Clinical Nurse Specialist, a career that was shaped by his experieces as a child where he now works with other families who are impacted by brain tumours. Will shares what it was like for him as an 11 year old and how he looks back on his experiences now as an adult and a parent himself.If you would like to talk to a member of our Children and ...
In this episode Chandos talk with two of our Children and Families and Young Adults Workers Amy Watts and Jessie Poole about the support that is available to families who have children under 18. Some of the things mentioned in this episode include:Family DaysBrainy BagsOnline support group for parentsTalking to children about brain tumoursTaling to children about their brain tumourTeens InstagramTeen Meet upsSibling SupportIf you would like to know more about our Childrens and Fam...
(Trigger Warning) In this episode - Benj talks about the impact of his daughter Ivy's diagnosis and coming to terms with the changes this has brought to both Ivy and their lives as a family. He talks about the impact on mental health and the impact of trauma that parents and loved ones experiene as a result of a brain tumour diagnosis. This episode contains conversations that some people may find distressing such as the effects of the tumour and treatment.It's important to remembe...
In May this year, we hosted not only our first in-person Young Adult event since Covid but our first ever Masquerade Ball. Anna and Chandos, explain why events like this are so crucial to young people whose lives have been affected by a brain tumour diagnosis. We also hear from other young adults about the impact these events have on people like themselves who may not have the same opportunities to experience events like this as other young people.You can find out more about our Y...
(Trigger Warning) In this episode - Benj talks us through every parent's worst nightmare, from the moment he and his wife Sarah were told their 4 year old daughter Ivy had a mass in her brain to where they are now as a family 18 months later. This episode contains conversations that some people may find distressing such as the effects of the tumour and treatment. It's important to remember that everyone's experience is different, this is Benj's experience, your experience may diff...
If you are a parent who has recieved a brain tumour diagnosis, telling your children can be one of the hardest things to do. In this episidode we talk to Simone Baldwin, the author of the book 'Mummy has a lump' which she wrote after recieving her own brain tumour diagnosis and struggled to find any resources for parents to help her explain to her young son. Simone also went on to write 'Daddy has a lump'You can find out more about Simone here You can find 'Mummy has a...
In this episode Anna talks to Dave Bolton, founder of Ahead of the Game Foundation which aims to provide much needed rehabilitation services to cancer patients.Dave talks about what led him to creating Ahead of the Game and what services they provide. You can find out more about Ahead of the Game hereYou can read more about Dave Bolton here You can vist our website here If you'd like to talk to a member of our support team you can call 0808 800 0004 or email support@thebraintumour...
In this episode, we talk to Imelda and Rebecca who both experienced headaches caused by their brain tumours. They share how these were often dismissed by GPs and not taken seriously despite also having a range of other symptoms which were all indications that something wasn't right and needed looking into. They explain what the headaches were like and what made them think there was something more going on than just having bad headaches or migraines.You can find more information about th...
In this episode we talk to Phoebe Day our Gifts and Partnerships Manager at the charity. She explains what family led partnerships are, the different types and why they are so important to the charity. Family led partnerships are so much more than just rasing money for the charity as Phoebe explains in this episode.If you have any questions you can email Phoebe directly byt emailing her at phoebe.day@thebraintumourcharity.org. You can also find out more about Family Led Part...
In this episode, we talk to Sarah and Patrick about their experience taking the chemotherapy drug PCV. They explain what taking this chemotherapy regime is like, what side effects they experienced, dietary restrictions, hair loss, and more.You can find out more about chemotherapy here and if you would like to speak to our support team you can email the team at support@thebraintumourcharity.org or call 0808 800 0004Better Safe Than Tumour Money Advice Clinic
In this episode, we talk to Hannah Waldron about the TIME Art Exhibition .The exhibition will feature photographs, illustrations, paintings, scans and sculptures submitted by the community to help tell the stories of those affected by a brain tumour, as well as artwork from upcoming and renowned artists from around the globe. The aim of the exhibition is to help raise awareness of our mission to defeat brain tumours.The exhibition will be on from 6th April to the 15th April ...
In this episode we talk to Elizabeth and Julia the hosts of the podcast 'On a good day' about their experiences of caring for their partners who both live with the impacts of brain injury. Elizabeth's husband Paull had a stroke when he was just 38 and Julia's husband Hector had a subarachnoid brain haemorrhage when he was also 38. Whilst not caused by brain tumours, the affects of their brain injuries and the day to day challenges are very similar to those experienced within the b...
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