Let's Talk About Brain Tumours

(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 ma...

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...

(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 reme...

 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 wri...

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  here You can read more about Dave Bolton here You can vist our website here   If you'd like to...

Imelda and Rebecca both experienced headaches caused by their brain tumours. They share how these symptoms were often dismissed by GPs and not taken seriously - despite also having other indications that something wasn't right and needed investigating.  They explain what the headaches were like and what made them think there was something more going on than just having bad headaches or migrai...

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 phoe...

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 o...

In this episode, we talk to Hannah Waldron about the TIME Art Exhibition. The exhibition featured 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 was to help raise awareness of our mission to de...

Elizabeth and Julia are hosts of the podcast 'On a good day'. Here, they talk 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 at the same age. While not caused by brain tumours, the day to day challenges...

In 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...

Three people: Jess, Reece and Kate, discuss the impact that seizures have on their lives. From the first sign there is something wrong to the day-to-day challenges of managing their seizures, we talk about the different types of seizures that exist and how medication can help to get these under control. You can find out more about brain tumours and seizures on our website here   If you or someone...

In 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...

Christmas can be a difficult time for people who are caring for a loved one with a brain tumour diagnosis - whether this is your first Christmas since the illness started or you are worried this may be your last. We also know that at this time of year, some of you may be remembering a loved one you have lost. In this episode, we share ideas and experiences on how to navigate your way through the h...

In 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...

In 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,...

In 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...

In 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...

What is an Advance Care Plan? How do you go about creating one and why is it so important? Sacha Langton-Gilks' son died from his brain tumour at just 16. Like most people, Sacha felt ill-prepared and ill-informed about how to prepare for the death of a loved one. The experience inspired Sacha to write the book 'Follow The Child' which is filled with practical advice about how to ma...

This 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 appointmen...

In 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 y...

In 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 L...

In 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 c...

In 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 camp...

In 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 yo...