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 Young Adults Service here

You can also find out mo...

(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 from what is discussed in this episode.

If yo...

 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 lump'  here and 'Daddy 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  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@thebraintumourcharity.org

Duration: 00:18:42

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 migraines.

There's more information about the signs and symptoms of brain tumours here and information on headaches on our website here Headaches in children and Headaches in adults

Money Advice Clinic Duration: 00:46:59

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 Partnerships here

You can also find out more about the Oli Hilsdon Foundation her...

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 0004

Money Advice Clinic

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004 or by emailing support@thebraintumourcharity.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 defeat brain tumours. The exhibition was from 6th April to 15th April at The Business Design Centre, Upper Street, Islington, London N1

You can find out more about T...

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 they face are very similar to those experienced within the brain tumour community. 

Julia and Elizabeth started their podcast to open up conversations about brain injuries have an impact on families a...

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 the Money and Benefits Clinic and what support you can get by booking an appointment.

Our Benefits and Money Clinic  runs on Tuesdays, Wednesdays and Thursdays from 10am - 4...

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 

Money Advice Clinic

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004 or by emailing support@thebraintumourcharity.o...

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 have been doing have real, tangible results.

If you would like to find out more about our Involvement Network or would like to become a...

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 holiday period.

There's further information for carers on our website here

Money Advice Clinic

I...

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 navigate through these.

You can read more about coping at Christmas here

You can also contact our support team on 0808 800 0004 or emailing support@thebraintumourcharity.org

Money Advice Cl...

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, sharing their experiences and using these experiences to not only help shape the work we do but make real and lasting changes to support the brain tumour c...

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 to talk to our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

You can a...

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 would like to find out more about raising money for the charity you can find out more here 

You can also contact our Community Fundraising team by emailing fundraising@thebraintumourcharity.org...

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 make sure your loved one has a good death.

The podcast is relevant whatever the age of the person with an incurable illness. 

You can f...

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 appointment, what your optician looks out for and some of the health conditions, including brain tumours that can be detected during these eye exams and also what happens if something is detected...

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 you can call 0808 800 0004 or email support@thebraintumourcharity.org

Money Advice Clinic

If you or someone you know needs a...

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 Lottery here.

Money Advice Clinic

If you or someone you know needs a listening ear, you can contact our Support T...

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 can read more about Meningioma's here,  oligodendroglioma here and glioma's here

If you would like to talk to a member of the support team you can...

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 campaign is to help people recognise symptoms of a brain tumour and get diagnosed earlier.  This campaign builds on the hugely successful HeadSmart campaign the charity created to raise awareness of ch...

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 you can call them on  0808 008 004 or email support@thebraintumourcharity.org

You can find more information about Scanxiety in adults here and...

In 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 essential insights into their patient's experiences and how they can make improvements.

Some of y...

In 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 help other pe...

In 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 out more about the new strategy here  and al...

In 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 relationship counsellors Relate to offer relationship counselling you can find out more here

You can fin...

In 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 charity and how excited he is a...

In 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 support@thebraintumourcharity.org or call 0808 800 0004. You can find out more about the support available by visiting our website h...

Chandos talks to Nicola about how she uses the BRIAN app to help her manage her condition, including using it to track side effects, to log when she has a seizure and to keep a record of her appointments so she can show her husband, family members and also her medical team.

Post Script: The BRIAN app has since been decommissioned, but you can find similar support, information and resources here: https://www.thebraintumourcharity.org/

Money Advice Clinic

If you or someone you know needs a listening ear, you can contact our Support T...

In the second part of our interview, Kerry talks about life after treatment. She mentions the services and support that have helped her and also shares that a brain tumour diagnosis can sometimes mean you are not signposted to the right support.

You can find more information about our Children and Families Service here.

If you would like to join our private Facebook group for Parents you can do so here

If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004 or by emailing support@t...

TW: emotionally challenging content

Our hosts talk to Kerry whose son Rowan was diagnosed with a brain tumour shortly after he was born. Kerry shares what it was like from a parent's perspective  to see her child in distress when other people couldn't see that anything was wrong and the journey a parent goes on once a diagnosis is made.

If you are a parent listening to this and would like to talk to someone about what you're going through, you can contact our Children and Families Team by emailing childrenandfamiles@thebraintumourcharity.org or call o...

We 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 contact our support team by emailing support@thebraintumourcharity.org o...

Volunteer Andy Tudor talks about how being diagnosed with a meningioma five years ago has affected his life. Andy has come up with some creative solutions for some of the side effects of his brain tumour, including coping with insomnia. In a bid to keep the night-time "thought demons" away he set up a social media account and he's built up a following of thousands by sharing positive messages when he wakes in the wee small hours. It's become the 3am Awake Club! 

You can find Andy on Twitter here @AndyHTudor1

You can find more i...

In 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 research into treatments for this terrible dis...

In this episode we talk to Kaj Mistry who was just 22 when her dad was diagnosed with a brain tumour.  Kaj had moved away from the family home and was just starting her life in a new city when she found out about her dads diagnosis. Kaj decided to move back home to help look after him.  Kaj shares her experience of what it was like to  walk away from her new life to take on a caring role for her dad and how this experience has changed her. 

If you are a young person aged between 16 - 30...

In this episode Amie Frayne talks about her role as the Volunteer Development Manager and what a vital role volunteers play in just about every aspect of the charity. Amie talks about the types of things volunteers can do at the charity from helping to run events to supporting on our social media channels and much more. You'll also hear from some of our volunteers about their experiences of volunteering at the charity as well as how you can find out about the roles available.

You can find out more information about volunteering at the charity on...

In this episode we hear from Rosie who was diagnosed with a brain tumour when she was just 8 years old.  She shares what it was like to be a child going through treatment, how it affected her friendships, going to school and the long term impacts both mentally and physically of having a brain tumour at such a young age.

If you would like more information about our Children and Families Service you can go to our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/   or contact the team directly by emailing childrenandfamilies@thebraintumourcharity.org

For...

In this episode 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 can be detected during these eye exams and also what happens if something is detected when you have an eye exam.

You can find out more about how brain tumours can affect y...

In this episode, we talk to Diane Thomas about how a loved one's diagnosis changes life for everyone not just the person with the diagnosis and why creating a new 'normal' is so important. Diane talks about problem-solving and finding creative solutions to keep creating a new 'normal' as things changed.   Diane also talks about her experiences of having to deal with her husband's personality changes due to the location of his tumour and the importance of not being afraid to ask for help.

Diane also shares suggestions on how friends can help and that these don't h...

In this Spotlight episode Chandos talks to Fiachra Woodman about BRIAN.

BRIAN (the Brain tumouR Information and Analysis Network) is an online app which has been developed by The Brain Tumour Charity to help people cope with a brain tumour diagnosis. BRIAN can help you - and those supporting you – to understand how you are doing and to make better informed decisions.  Fiachra talks about some of the ways you or your loved one can use BRIAN such as carrying out challenges in the app, setting appointment and medication reminders and much more.

One of the...

In this episode, we talk to Sunil Reddy about his diagnosis and the impact this has had on his life.  Sunil talks about how his memory has been affected due to his treatment and what this has been like for him both coming to terms with the long term effects of having a brain tumour but also how he is finding ways to cope with these changes. 

Memory loss is a common side effect of brain tumours with Cam and Chandos also sharing how, like Sunil they have also suffered with memory problems as a result of th...

In this episode Chandos talks to Eve Kelleher, the Head of Services at the charity about some of the ways our Support Team can help people who have been affected by a brain tumour diagnosis.

You can find out more about the 10 ways we can help here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/

They talk about our online communities, from our Facebook support groups, Health unlocked to our Support Instagram  you can find out more about our online communities here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/online-brain-tumour-support-groups/

Eve explains how as well as o...

Welcome to Episode 3. Today, co-host Sara Challice explains what it's like when you're told that a loved one has a brain tumour and how her husband's diagnosis changed her life forever as she took on the role of his carer throughout his illness. 

Sara opens up about the reality of caring, the toll it takes on individuals and the things she found helpful.

If you or a loved one have been affected by a brain tumour diagnosis, our Support Team is here to listen, provide information and signpost you to other services. Their contact details a...

In the first of our 'Spotlight' episodes, Chandos talks to Emma Wood who was the Involvement and Impact Manager at The Brain Tumour Charity.

They discuss why The Charity has launched "Best Care Everywhere" - a new strategy to ensure people get the best treatment and care possible wherever they are in the UK - and how you can get involved.

To take part in the Improving Care Today Surveys  https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/improving-brain-tumour-care-surveys/

You can find out more about the Tessa Jowell Centres of Excellence on our website  https://ww...

Welcome to the very first episode of The Brain Tumour Charity's podcast! In this episode, you'll meet our original host Sarah, who worked at The Charity, and Cam and Chandos - volunteers who are both living with a brain tumour diagnosis.  

They'll be sharing their experience of what it's like to be told you have a brain tumour and what it's like to live with a diagnosis.  We'll also be telling what you can expect from future episodes.

[Please note our co-hosts have since changed but they are still a mixture of staff and volunteers wi...