Let's Talk About Brain Tumours
65 episodes - English - Latest episode: about 1 month ago -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.
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Episodes
Episode 59 - Spotlight on Women in Neuroscience
June 04, 2024 08:00 - 24 minutes - 17.1 MBIn this episode Anna talks to Anna Solth and Victoria Wyes about their experiences of being neurosurgeons and women in the field of neuroscience. They share their passion for neuroscience and the work they are doing now and their plans for the future. Better Safe Than Tumour Money Advice Clinic
Episode 58 - Hidden disabilities
May 21, 2024 08:00 - 44 minutes - 30.4 MBIn 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 th...
Episode 57 - Spolight on Mental Health Support
May 07, 2024 08:00 - 9 minutes - 6.61 MBIn 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
Episode 56 - Rehabilitation for brain tumours
April 23, 2024 08:00 - 45 minutes - 31.5 MBIn 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 understa...
Episode 55 - Spotlight on Research into Glioblastomas
April 09, 2024 08:00 - 16 minutes - 11.6 MBIn 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 fu...
Episode 54 - Living with a rare brain tumour and Everest in the Alps
December 05, 2023 09:00 - 50 minutes - 34.2 MBIn 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 abou...
Episode 53 -Using exercise as a form of therapy
November 21, 2023 09:00 - 56 minutes - 38.8 MBIn 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 diag...
Episode 52 - Ravi's Dream
November 07, 2023 09:00 - 54 minutes - 37.6 MBIn 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 help...
Episode 51 - Spotlight on the Ways Ahead Research Project
October 24, 2023 08:00 - 23 minutes - 16.2 MBIn 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 here You can find out more about the research that The Brain Tumour Charity fund here: ...
Episode 50 - Life after losing a parent - Growing and Thriving
October 10, 2023 08:00 - 42 minutes - 28.9 MBIn 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 Fa...
Episode 49 - Spotlight on the Children & Families Service
August 08, 2023 06:00 - 14 minutes - 9.96 MBIn 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 Days Brainy Bags Online support group for parents Talking to children about brain tumours Taling to children about their brain tumour Teens Instagram Teen Meet ups Sibling Support If you would like to know more about our Children...
Episode 48 - (TW) Coming to terms with change
July 25, 2023 07:00 - 30 minutes - 20.9 MB(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 remember tha...
Episode 47 - Spotlight on Young Adult Masquerade Ball
July 11, 2023 12:00 - 15 minutes - 10.5 MBIn 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 Young Ad...
Episode 47 - Spotlight on Young Adults Masquerade Ball
July 11, 2023 12:00 - 16 minutes - 11.3 MBIn 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 Young Ad...
Episode 46 - (TW) 'Your child has a brain tumour'
June 27, 2023 06:00 - 56 minutes - 38.6 MB(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 differ fr...
Episode 45 - Mummy has a lump
June 13, 2023 06:00 - 34 minutes - 23.8 MBIf 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 lump' here an...
Episode 44 - Spotlight on Ahead of the Game Foundation
May 31, 2023 08:00 - 19 minutes - 13.2 MBIn 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 here You 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...
Episode 43 - Headaches and Brain Tumours
May 09, 2023 09:00 - 47 minutes - 32.6 MBIn 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...
Episode 42 - Spotlight on Family Led Partnerships
April 25, 2023 18:00 - 15 minutes - 11 MBIn 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 [email protected]. You can also find out more about Family Led Partnerships her...
Episode 41 - PCV Chemotherapy
March 30, 2023 15:00 - 47 minutes - 32.9 MBIn 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 [email protected] or call 0808 800 0004 Better Safe Than Tumour Money Advice Clinic
Episode 40 - Spotlight on TIME, using art to tell stories of brain tumours
March 23, 2023 15:00 - 16 minutes - 11.4 MBIn 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 and is bei...
Episode 39 - Caring beyond a brain tumour
March 07, 2023 12:00 - 46 minutes - 31.9 MBIn 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 brain tumo...
Episode 38 - Spotlight on getting benefits and money advice (UK)
February 21, 2023 07:00 - 10 minutes - 7.3 MBIn this episode, Chandos talks to Denise one of our benefits advisers. Through talking to our community we know the financial impact of a brain tumour diagnosis can be huge and cause a great deal of stress and anxiety so we partnered with Citizens Advice to provide support and information around not just benefits but a wide range financial issues. Denise explains more about the work she does at the Money and Benefits Clinic and what support you can get by booking an appointment. Our Benef...
Episode 37 - Brain Tumours and Seizures
February 07, 2023 10:00 - 37 minutes - 25.6 MBIn this episode we talk to e people, Jess, Reece and Kate about the impact seizures have on their lives, from being the first sign there was something wrong to the day to day challenges of managing their seizures. We talk about the different types of seizures and how medication can help to get these under control. You can find out more about brain tumours and seizures and the different types of seizures on our website here and you can contact the support team by calling 0808 800 0004 or ...
Episode 36 - Spotlight on Involvement Champions
January 17, 2023 07:00 - 25 minutes - 17.6 MBIn this episode, Neil Munn and Donald Innes talk about their time as Involvement Champions for the charity. They share what being an Involvement Champion means, not just in terms of their role and what they have done as Involvement Champions but also what it has meant to them personally and the feeling that they have had a real say in the direction the charity is going in and seeing the work they have been doing have real, tangible results. If you would like to find out more about our Invo...
Episode 35 - Christmas - Caring for or coping with the loss of a loved one
December 20, 2022 07:00 - 22 minutes - 15.1 MBWe know that Christmas can be a difficult time for people who are caring for a loved one with a diagnosis, whether this is your first Christmas since the diagnosis or you are worried this may be your last. We also know that for some of you this may be a time of remembering a loved one you have lost. In this episode we talk about some of the chalenges. We share experiences and ideas on how to navigate through the holiday period. You can contact our support team by calling 0808 800 004 or e...
Episode 35 - Christmas - Caring for or coping with the loss of a loved one
December 20, 2022 07:00 - 23 minutes - 16 MBWe know that Christmas can be a difficult time for people who are caring for a loved one with a diagnosis, whether this is your first Christmas since the diagnosis or you are worried this may be your last. We also know that for some of you this may be a time of remembering a loved one you have lost. In this episode, we talk about some of the challenges. We share experiences and ideas on how to navigate through the holiday period. You can contact our support team by calling 0808 800 0004 o...
Episode 34 - Living with a Brain Tumour At Christmas
December 08, 2022 16:00 - 27 minutes - 18.9 MBIn this episode, we talk about some of the challenges of having a brain tumour over the festive season. For some of you, this might be your first Christmas since receiving your diagnosis and have mixed feelings about the impending festivities. The team share some personal experiences of how having a diagnosis has changed the way they celebrate the Christmas period and ways they've found to navigate through these. You can read more about coping at Christmas here You can also contact our ...
Episode 33 - Spotlight On Our Young Ambassadors - Making Positive Changes
November 22, 2022 15:00 - 27 minutes - 18.6 MBIn this episode, Anna talks to fellow young ambassadors Rhudi and Victoria about the Young Ambassador Program which is a 2-year program tum by the charity for young people aged 18 - 25. They talk about what made them want to become ambassadors for the charity and some of the great things they have done during their first year in the program. The Young Ambassadors play a huge role in the charity, sharing their experiences and using these experiences to not only help shape the work we do but...
Episode 32 - How to prepare for the death of a loved one
November 01, 2022 09:00 - 46 minutes - 32.1 MBIn this episode, we're joined again by Sacha Langton-Gilks to talk about how to prepare for the death of a loved one and explore what it means to give someone a good death and help them die well. Trigger warning: In this episode, we do talk about the final stages of death and some of the physical processes that take place at the end of life. If you found this episode difficult or would like to talk to our support team you can call 0808 800 0004 or email [email protected] ...
Episode 31 - Spotlight on Community Fundraising - How our community helps fund research
October 18, 2022 10:00 - 11 minutes - 8.23 MBIn this episode, Chandos talks to Community Fundraiser Firzana Khan about how our community works with the charity to raise money for vital research into better treatments and cures for brain tumours. They talk about the different ways people can raise money from cycle rides and runs to charity balls. Firzana explains the vital role our community fundraisers play in beating brain tumours. If you would like to find out more about raising money for the charity you can find out more here Y...
Episode 30 - The importance of an Advance Care Plan
October 04, 2022 06:00 - 47 minutes - 32.4 MBIn this episode we talk about the importance of having an Advance Care Plan in place, what it is, how you go about doing one an why it is so important. Sacha Langton- Gilks son DD died when he was 16 from his brain tumour. Sacha like most people felt ill prepared and ill-informed about how to prepare for the death of a loved one. The experience inspired Sacha to write a book filled with practical advice about how to navigate the unspoken waters of dealing with all that comes with making s...
Episode 29 - Spotlight Revisited - National Eye Health Week
September 20, 2022 06:00 - 14 minutes - 9.75 MBThis episode was recorded in September 2021 but as this week is National Eye Health week we thought we'd revisit this episode where Chandos talks to Optical Engagement Manager Lorcan Butler about the importance of eye exams as these appointments can tell you much more about your overall health than just if you need to wear glasses. Lorcan talks you through what happens at a typical appointment, what your optician looks out for and some of the health conditions, including brain tumours that...
Episode 28 - What exactly is Gamma Knife?
September 06, 2022 09:00 - 34 minutes - 24 MBIn this episode, myself and Andy talk to Katie about Gamma Knife Radiotherapy also known as Stereotactic Radiotherapy. Both Andy and Katie had this treatment when they had a recurrence of their brain tumours, they explain what the treatment entails and what it was like to undergo. You can find out more about Gamma Knife Radiotherapy here If you would like to talk to a member of our Support Team you can call 0808 800 0004 or email [email protected] Better Safe Than Tumour ...
Episode 27 - Spotlight on the Charity Lottery
August 30, 2022 06:00 - 7 minutes - 5.35 MBIn this episode Chandos talks to Tamsin Tyson our Individual Giving Officer about the recently launched charity lottery. Tamsin explains what the lottery is and why we have decided to create a lottery as a way to continue to be able to raise money for vital research into brain tumours at a time when the cost of living rises have hit charities fundraising efforts. You can find out more about the Lottery here. Better Safe Than Tumour Money Advice Clinic
Episode 26 - What's it like to have a craniotomy?
August 16, 2022 06:00 - 46 minutes - 32 MBIn this episode, we talk to Rob, diagnosed with a grade 2 glioma, and Carly, with a grade 2 oligodendroglioma, about what it's like to have a craniotomy. Both Rob and Carly had an awake craniotomy while Andy who has a grade 2 meningioma had a craniotomy under a general anaesthetic They share their experiences and things they found helpful. You can find out more about craniotomies here You can read more about Meningioma's here, oligodendroglioma here and glioma's here If you would like...
Episode 25 - Spotlight on Signs and Symptoms - How we created a campaign
August 04, 2022 15:00 - 23 minutes - 16.5 MBIn this episode we talk to Ali Lopez, the charity's Campaigns and Communications Manager about how the charity created the new Signs And Symptoms campaign that the charity recently launched to raise awareness of the signs and symptoms of brain tumours. Ali talks through the process of creating a campaign like this and how involvement from the community played a key part. The aim of this campaign is to help people recognise symptoms of a brain tumour and get diagnosed earlier. This campai...
Episode 24 - Scanxiety
July 19, 2022 06:00 - 52 minutes - 36.3 MBIn this episode, we talk to Betty and Sarah about their experience of having scans and the very real anxiety that often goes with this. They share some of the things they have found helpful in reducing the level of anxiety they feel in the run-up to their scan and things they do during the scan to help them get through the experience. If you'd like to talk to a member of the support team you can call them on 0808 008 004 or email [email protected] You can find more info...
Episode 23 - Spotlight on Improving Brain Tumour Care
July 05, 2022 12:00 - 16 minutes - 11.4 MBIn this episode, senior involvement and impact manager Shannon Winslade joins Chandos to talk about how you can help us to improve the treatment and care of people diagnosed with a brain tumour. Shannon spoke about the importance of getting our community to share their experiences both good and bad so we can find out where the gaps in care are, what people's experiences are like in different treatment centres around the country and how we use this information to provide treatment centres es...
Episode 22 - Sibling Grief
June 21, 2022 09:00 - 42 minutes - 29.5 MBIn this episode I talk to Kaz and Lauren about what it's like to loose a sibling to a brain tumour. For those of us that having siblings we know that the relationship we have with our siblings is different from any other relatonship we have. Kaz and Lauren share what it's been like for them when they found out their siblings had a brain tumour. They share how the loss has changed their lives and the gap that is left when a sibling dies. Kaz has set up a Facebook group called Grieflings to...
Episode 21 - Spotlight on Strategy Update - Beyond Brain Tumours
June 07, 2022 06:00 - 23 minutes - 16.4 MBIn this episode, Chandos talks to Andy about his involvement with the new strategy the charity is co-creating with the community. Andy is a volunteer that not only works on the podcast but is also part of the Steering group made up of members of the community, The Brain Tumour Charity and other organisations that are working to improve the treatment and care of people diagnosed with a brain tumour. Andy explains more about this process and what the new strategy aims to do. You can find ou...
Episode 20 - Dating and relationships after a diagnosis
May 24, 2022 14:00 - 34 minutes - 23.5 MBIn this episode, Chandos and our guest Laura talk candidly about the reality of dating after a brain tumour diagnosis and the difficulties of online dating and telling a prospective partner. They share their personal experiences and how they approach the world of dating and relationships whether online or in person. If you would like support around your relationship or you are single and would like support around some of the issues raised in this episode, we have partnered with relation...
Episode 19 - Spotlight with Alex Lochrane (CEO)
May 10, 2022 15:00 - 37 minutes - 25.9 MBIn this episode, we meet our newest co-host Anna Blyszko as she and Chandos talk to our new CEO, Alex Lochrane. Alex joined the charity about 3 months ago and shares with Anna and Chandos some of his background, why he joined the charity and where he sees the charity going under his guidance. Alex also shares how our new strategy is being co-created with the community and how this may change the direction of the charity as we listen to you, our community about what you want from us as a ch...
Episode 18 - Life after active treatment
March 08, 2022 07:00 - 28 minutes - 19.7 MBIn this episode, we talk to Lucy and Lauren who share what it means to be successfully treated following a brain tumour diagnosis. They share the ongoing impacts caused by both the brain tumour itself and the treatments used to treat their tumours and how this affects all aspects of their lives. They also discuss what being 'cured' actually means from their perspective. If you would like to talk to a member of the support team you can email [email protected] or call 0808 80...
Episode 17 - Spotlight on 'How I use BRIAN'
February 22, 2022 09:00 - 16 minutes - 11.6 MBIn this episode Chandos talks to Nicola about how she uses the BRIAN app to help her manage some of the side effects of her diagnosis, including using it to track side effects, to remember when she has a seizure and to keep a record so she can show her husband, family members and also her medical team. You can find out more about BRIAN here You can contact the support team by emailing [email protected] or calling 0808 800 0004 You can find out more imformation about The B...
Episode 16 - A Parent's Experience part 2 - Moving forward and looking to the future
February 15, 2022 07:00 - 38 minutes - 26.1 MBIn the second part of our interview with Kerry, she talks about life after treatment and moving forward to a new future. Thinking about the services and support that have helped her and how having a brain tumour diagnosis can sometimes mean you are not always signposted to the right support. You can find more information about our Children and Families Service here. If you would like to talk to someone in our Children and Families team you can email childrenandfamilies@thebraintumourchari...
Episode 15 - Part 1 - A Parent's Experience - Surviving Brain Surgery Day
February 08, 2022 07:00 - 35 minutes - 24.2 MBIn this, the first of two episodes, myself and Sara Challice talk to Kerry, whose son Rowan was diagnosed with a brain tumour shortly after he was born. Kerry share's what it's like from a parent's perspective seeing your child in distress when other people can't see anything wrong and the journey a parent goes on once a diagnosis is made. If you are a parent listening to this and would like some support you can contact our Children and Families Team by emailing childrenandfamiles@thebrain...
Episode 14 - Spotlight on Coping At Christmas
December 21, 2021 07:00 - 17 minutes - 12.3 MBWe know that whilst Christmas can and often is a great time of year, it can also bring with it some challenges if you are living with a brain tumour or caring for someone who has a tumour. In this episode, Cam, Chandos and Sara share some of the things they have found have helped them cope during the Christmas break. Kate Skinner our Support and Information manager also shares some information about the support available during the holiday break. If you need support over Christmas you can ...
Episode 13 - 3am Awake Club
November 30, 2021 07:00 - 45 minutes - 31.3 MBIn this episode we talk to Andy Tudor about how being diagnosed with a meningioma 5 years ago has impacted his life. Andy shares some of the creative solutions to some of the side effects of his tumour that he has come up with since his diagnosis, including how copes at night as he is unable to sleep for long periods of time causing him to wake up several times during the night. Andy shares how, in a bid to keep the night time thought demons away he set up a Twitter account and most nights...
Spotlight - Fundraising Events
November 16, 2021 07:00 - 13 minutes - 9.26 MBIn this episode find out more about how the charity raises money for research into brain tumours and treatments as Chandos talks to Sarah Castleman, Events Manager at the charity. Sarah talks about how we had to change the way we had to do events in the wake of the Coronavirus pandemic, the impact of this and what this means for us as a charity and how we do events as we come out of the pandemic. Sarah talks about the importance of these events both in terms of raising money for vital res...