Let's Talk About Brain Tumours: Recent Episodes
The Brain Tumour Charity
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.
Hosts Anna and Andy mark two years since Dr Michele Afif became Chief Executive at The Brain Tumour Charity by asking about her early life, her previous careers in medicine and law - and a few more questions that we crowdsourced from our listeners.
In response, Michele explains how she's focused The Charity on turning its co-created strategy into a 'strategy in action'. She's honed in on what it needs to deliver, what evidence backs that up and how it can deliver truly transformative results.
She describes it as asking the question: "How do we push one or two big boulders up the same hill rather than hundreds of boulders up hundreds of hills?"
Michele also talks about her proudest moments, her biggest challenge, The Charity's imminent plans and the advice she'd give her younger self.
And if you have any questions for Michele or The Charity, you can email podcast@thebraintumourcharity.org
Better Safe Than Tumour
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.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
In this episode, we'll hear from four of our much-valued Involvement Champions : Rebecca, Oriana, Claire and Mark.
We recorded their presentations to the whole organisation as they explained why they wanted to become key voices in the brain tumour community. (Trigger warning, they talk about diagnosis and mental health issues, and their stories are very moving.)
Then our host Anna Blyszko - a former Young Ambassador herself - quizzes The Brain Tumour Charity’s Involvement Manager, Rachel Roberts, about what exactly our Involvement Network aims to achieve and why we've launched a new initiative called The Listening Project.
If you're interested in becoming an Involvement Champion, recruitment for the next cohort begins in late summer 2025. You can find out more here.
Better Safe Than Tumour
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.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
After weeks of toil and training, The TCS London Marathon 2025 is just around the corner and The Brain Tumour Charity has 145 runners taking part this year - more than ever before!
Our Involvement Champion Imelda Turnock speaks to two of them - Barbara Prodger and David Barrow - about their reasons for running.
But first, Andy Tudor gets some insider tips from our man at JustGiving.
Sam Gurry delves into the data to explain how anyone taking part in a charity challenge can maximise their fundraising. From personalising your story to the optimum number of times to post about your challenge on social media, to gamifying fundraising and incentivising donors - we get the low down.
If listening to this sparks an interest in taking part in one of our events, you can find them all listed here.
Hosts: Andy Tudor and Imelda Turnock.
Audio editors: Jo Porter and Elliot Broad
Producer: Jo Porter
Better Safe Than Tumour
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.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
Our focus in this episode is on friendships and close bonds. How does a brain tumour diagnosis affect our loved ones and who can we turn to for support or advice when we don’t want to worry or upset those closest to us?
To answer that question, Andy Tudor talks to five women who were all treated at the same hospital for the same meningioma diagnosis but who only met through one of The Brain Tumour Charity’s online peer support groups. They describe that group as "invaluable", "a lifeline" and as "each other's aftercare."
What's more, four of them have teamed up to take on The Twilight Walk together on 22 March - roping in some of their relatives too! Their efforts will mean The Charity can continue to fund things like our support services as well as much needed research into brain tumours. This is the Brighton Brain Aches fundraising page.
We'd also like to the thank the Puzzle Bored Cafe in Brighton for allowing us to record this episode in their Quiet Room.
Audio Editor: Elliot Broad
Producer: Jo Porter
Contact: podcast@thebraintumourcharity.org
Better Safe Than Tumour
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.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
A warm welcome to Let's Talk About Brain Tumours!
After a break since the summer, we're back to bring you interesting and informative conversations with members of the brain tumour community and at The Brain Tumour Charity.
A new production team is now at the helm, so bear with us while we learn the ropes of podcast production. But we're delighted that our volunteer co-hosts remain unchanged: Anna Blyszko, Chandos Green and Andy Tudor.
"On the cusp of change...!" today, Anna and Chandos quiz Anna Jewell and Cameron Miller about how the Less Survivable Cancers Taskforce was set up, what it's achieved and what its latest campaign is about. Then, Andy meets Frankie Davies whose mum Sue's story throws that campaign into sharp relief.
Many thanks to all our guests for taking part in this recording.
Further information
- Frankie mentions online support groups and you can find out about these here
- To find out more about the campaign go here or search the hashtags #LessSurvivableCancersAwarenessWeek #CloseTheDeadlyCancerGap on social media
- If you have any questions about this episode or want to find out more about this podcast, you can email the team at: podcast@thebraintumourcharity.org
Producer: Jo Porter
Audio editor: Elliot Broad
Better Safe Than Tumour
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.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
In 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
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 difficulties they have decided to celebrate Gavin turning 50 by taking on a 25km challenge.
You can find out more about Gavin and Louise here
If you want to get involved in their challenge you can email them here Loungav25kwalk@gmail.com
Better Safe Than Tumour
Money Advice Clinic
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 Rhea who sadly died from a glioblastoma in 2021.
Together Anya and Kaz have worked with the charity to create some resources to help people understand how rehab could help them and the sort of help available. You can find out more here
If you would like to be involved in the work Kaz and Anya are doing you can email involvement@thebraintumourcharity.org
Better Safe Than Tumour
Money Advice Clinic
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 future.
You can read more about Angel and his research here
You can find out more about the research we fund here
You can contact our Research team by emailing research@thebraintumourcharity.org or phoning 01252 418190.
Better Safe Than Tumour
Money Advice Clinic
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 about The Everest Centre here
Find out more about the Everest In The Alps Challenge Marting is doing here
You can donate using the links below
UK/Europe: https://www.justgiving.com/team/Syren
Canada: https://www.kindredfoundation.ca/syren
USA: www.pbtfus.org/syren
You can follow Team Syren on Instagram @everestinthealpssyren
Better Safe Than Tumour
Money Advice Clinic
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 diagnosis.
If you would like to find out more about the ways a brain tumour diagnosis can affect your mental health and the support available you can find out more on our website
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
Better Safe Than Tumour
Money Advice Clinic
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 help of his parents they created Ravi's Dream.
You can find out more about Ravi's Dream here
You can follow Ravi's story on instragram @ravis_dream
You can also find out more about our Children and Families Service on our website here
Better Safe Than Tumour
Money Advice Clinic
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 here
You can find out more about the research that The Brain Tumour Charity fund here:
Research into Adult Brain Tumours
Research into Childhood Brain Tumours
If you would lke to make a donation to enable us to continue to fund research into brain tumours you can find ways to donate here
You can vist our website here
Better Safe Than Tumour
Money Advice Clinic
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 Familes team you can call our support line on 0808 800 004 or email the team at childrenandfamilies@thebraintumourcharity.org
You can also find out more about the support available at the charity by visiting our website here
Better Safe Than Tumour
Money Advice Clinic
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 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 Childrens and Familes Service you can find out more here
You can also contact the team by calling 0808 800 004 or emailing childrenandfamilies@thebraintumourcharity.org
(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 that everyone's experience is different, your experience and opinions may differ from what is discussed in this episode.
If you are affected by any of the subjects raised in the episode please do contact our support team on 0808 800 004 or email the team at support@thebraintumourcharity.org.
You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.org
You can find out more information about Craniopharyngioma here.
You can find out more about our Children and Families Service here.
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 more about our events for young adults here
We also hold Family Days for families with children under 18 which you can find out more about here
You can also contact the support team by calling 0808 800 004 or emailing support@thebraintumourcharity.org
(Trigger Warning) In this episode - Benj talks us through every parents worst nightmare, from the moment he and his wife Sarah were told their 4 yeor 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 affects of the tumour and treatment.
It's important to remember that everyone's experience is different, this is Benj's experience, you're experience may differ from what is discussed in this episode.
If you are affected by any of the subjects raised in the episode please do contact our support team on 08080 800 004 or email the team at support@thebraintumourcharity.org.
You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.org
You can find out more information about Craniopharyngioma here.
You can find our more about our Children and Families Service here
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 lump' here
You can also find more information about talking to children on our website here
You can find out more about our Children and Families Service here
You can email our Children and Families Team by emailing childrenandfamilies@thebraintumourcharity.org or calling our support line on 0808 800 0004
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
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 the signs and symptoms of brain tumours here and information on brain tumours and headaches on our website Headaches in children and Headaches in adults
If you would like to talk to a member of our support team call 0808 800 0004 or email support@thebraintumourcharity.org
In this episode we talk to Phoebe Day our Gifts and Partnerships Manager at the charity. She explains what family led partnerships area and 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 here and OSCAR’s Paediatric Brain Tumour Charity here
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
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 and is being held at The Business Design Centre, Upper Street, Islington, London N1
You can find out more about TIME here or contact the team by emailing time@thebraintumourcharity.org
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 brain tumour community.
Julia and Elizabeth started their podcast as a way of opening up conversations about the impacts of brain injury and how this affects them as a family and in their relationships.
You can find out more about Elizabeth and Julia on their soclal media
Instagram - @onagood.day
Twitter - @onagood_day
Facebook community - On A Good Day group
On a Good Day is available to listen to now onApple and Spotify
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 - 4pm you can find out more and book an appointment here
NB: As we are a UK based charity our Benefits and Money Clinic is only available to UK residents
As always our support team are always here to support you, you can call them on 0808 800 004 or email support@thebraintumourcharity.org
In 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 emailing the team support@thebraintumourcharity.org
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 an Involvement Champion you can find out more here
We 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 or emailing support@thebraintumourcharity.org.
We also have some information on our website which you can find here
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
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 what 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 community. We are immensely proud of our Young Ambassadors and the work they do.
If you would like to find out more about our Young Ambassador Program or our current Young Ambassadors you can find some information here.
If you are over 25 but feel inspired by Anna, Rhudi and Victoria then you may be interested in finding out more about our Involvement Network
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 also find Sasha's book 'Follow the child' here
You can find out more about Compassionate Friends here
You can find out more about the support offered by Marie Curie here
You can also watch the video by Kathryn Mannix that Sacha mentioned here
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
In this episode I talk to Sacha Langton- Gilks who's 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 called 'Follow the child' filled with practicle advice about how to navigate the unspoken about waters of dealing with all that comes with making sure your loved one has a good death.
Although Sacha's book is called 'Follow the child' the book and what we discuss throughout the podcast is equally relevant what ever the aged of the person with the tumour. In 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.
You can find Sacha'a book here
You can also find information around end of life planning on our website here
You can also contact our support team on 0808 800 4000 or email support@thebraintumourcharity.org
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 when you have an eye exam.
You can find out more about how brain tumours can affect your vision on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/
If your need support with coping with sight loss you can find information on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/coping-sight-problems/
You can contact our support team by calling 0808 800 0004 or emailing Support@thebraintumourcharity.org
Find out more about National Eye Health Week by visiting Vision Matters https://www.visionmatters.org.uk/
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
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.
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 call 0808 800 0004 or email support@thebraintumourcharity.org
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 childhood brain tumours to bring together both adult and childhood brain tumours.
You can find out more about the campaign here, if you would like to discuss the campaign with Ali or any of her team you can email the team at info@headsmart.org.uk or call them on 01252749990
If you would like to speak to a member of our Support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
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 for children here. You can find out more about having a scan as an adult here and also for children here. You can also find an amazing animation for children here
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 you may have already completed the surveys when we ran them previously if you have had further treatment, at a different stage or experienced any change from the last time you took part you can still participate.
You can find more information about the Improving Brain Tumour Surveys or take part in the surveys on our website here
If you have any questions or would like to find out more about our Involvement Network you can email Shannon and the rest of the Involvement team by emailing involvement@thebraintumourcharity.org
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 people who have lost a sibling as she struggled to find a space where she could talk about her experiences with people who truly understood. You can find the group here. You can also find Grieflings on Instagram here
You can also contact our support team by calling 0808 800 004 or emailing support@thebraintumourcharity.org
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 also ways you can get invovled here
You can also contact the Involvement Team by email involvement@thebraintumourcharity.org
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 find out more about the support available from our support team here
You can contact our support team by calling 0808 800 0004 or emailing support@thebraintumourcharity.org
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 about this.
If you want to find out more about our new stratergy and how you can get involved head on over to our website or email our Involvement Team involvement@thebraintumourcharity.org
You can find out more about Alex here
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 here
If you want to find out how you can support research into finding not only a cure for brain tumours but also better treatments to reduce the long term impacts of treatment such as those discussed in this episode you can find out more on our website here
In 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 support@thebraintumourcharity.org or calling 0808 800 0004
You can find out more imformation about The Brain Tumour Charity on our website https://www.thebraintumourcharity.org/
In 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@thebraintumourcharity.org or call out support line on 0808 800 004
If you would like to join our Parents Facebook you can join here
In 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@thebraintumourcharity.org or calling our support line on 0808 800 0004
You can find more information about the Children and Families Service here
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 or calling 0808 800 0004. You can also find information on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/
You can also call the Samaritains on 116 123, they are available 24 hours a day 7 days a week
In 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 when he wakes up at around 3am he posts on Twitter and has built up a following of over 26,000 which helps keep him occupied during the night as people join his 3am awake club.
You can find Andy on Twitter here @AndyHTudor1
You can contact our support team by emailing support@thebraintumourcharity.org
You can find out more about volunteering at the charity here https://www.thebraintumourcharity.org/get-involved/volunteering/
You can find more information about the side effects of a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/
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 disease and also for the community to be able to come together and support each other and keep the memory of loved ones alive.
To find out more about our events and how to get involved you can visit our website https://www.thebraintumourcharity.org/get-involved/events/
or email Sarah and her team at events@thebraintumourcharity.org
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 and would like to connect with other young people who have been affected by a loved one's diagnosis you can join our Young Adult Carers Facebook Group here https://www.facebook.com/groups/thebraintumourcharityyoungadultcarerssupportgroup
If you are over 30 you can join our main Carers Facebook Group here https://www.facebook.com/groups/470978559740874
You can contact our Young Adults Team by emailing YAS@thebraintumourcharity.org
or call out support line on 0808 800 0004
You can find more information about our Young Adults Service here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/young-adult-service/
You can find more information about caring for someone with a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/caring-somebody/
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 supporting at 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 go about finding out more about the volunteering roles available.
You can find out more information about volunteering at the charity on our website here https://www.thebraintumourcharity.org/get-involved/volunteering/
If you have any questions you can get in touch with Amie by emailing volunteering@thebraintumourcharity.org
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 more information about our Young Adults Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/young-adult-service/ or email the team at yas@thebraintumourcharity.org
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 your vision on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/
If your need support with coping with sight loss you can find information on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/coping-sight-problems/
You can contact our support team by calling 0808 800 0004 or emailing Support@thebraintumourcharity.org
Find out more about National Eye Health Week by visiting Vision Matters https://www.visionmatters.org.uk/
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 have to be big it can be as simple as cooking a bit extra and taking it over to a friend who is knee-deep in caring for someone.
If you would like to speak to someone from our support team you can call 0808 800 0004 or email the team support@thebraintumourcharity.org
You can find out more about personality changes due to a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/personality-changes/
You can join our Carers Facebook Group here https://www.facebook.com/groups/470978559740874
If you would like more information on being a carer you can find information on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/caring-somebody/
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 aims of BRIAN is to use the information provided by you and your loved ones to enable researchers to better understand brain tumours to improve treatments and ultimately find a cure for this terrible disease.
You can find out more and download BRIAN here https://askbrian.org.uk/ or through Google Play or the App Store
If you have already downloaded BRIAN could spare a minute or two to complete a short survey on how you have found using it. As Fiachra says your feedback is really important to us in helping us make BRIAN into something that is really helpful for you. You can find the survey here https://www.surveymonkey.co.uk/r/3Z6CFWV
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 their tumours.
You can find out more about memory and brain tumours on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/
We also have advice on coping wth memory issues on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/coping-memory-difficulties/
You can also track how your brain tumour has affected your memory using our BRIAN app https://www.thebraintumourcharity.org/living-with-a-brain-tumour/brian/snap-challenge-memory/
If you would like to talk to our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
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 our main support service for adults we also have a dedicated Children and Families Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/ and a Young Adults Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/
Eve also talks about some of the organisations we've partnered with to provide specialist support and advice to our community such as our Relationship Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/relationship-counselling-couples-affected-brain-tumour/ and our Benefits and Money Clinic https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/benefits-clinic/
If you would like to make a donation to the Charity you can do so on our website https://www.thebraintumourcharity.org/donate/
If you would like more information about the support available you can email support@thebraintumourcharity.org
In this episode co-host Sara Challice shares her story about what it's like being told the person you love has a brain tumour and how her husbands diagnosis changed her life forever as she took on the role of his carer throughout his illness. Sara talks with honesty about the reality of caring, the toll it takes on carers and things she found helpful.
If you or a loved one have been affected by a brain tumour diagnosis our support team are here to help you. You can get in touch by emailing support@thebraintumourcharity.org or calling our support line Monday - Friday 9am - 5pm on 0808 800 0004
We also have dedicated Facebook Groups for Carers and people affected by a loved ones diagnosis. You can join our Main Carers Group here https://www.facebook.com/groups/470978559740874 or if you are aged 16 to 30 you can join our Young Adult Carers Facebook Group here https://www.facebook.com/groups/thebraintumourcharityyoungadultcarerssupportgroup
You can find more information about support for carers on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/
Sarah Challice's website www.whocares4carers.com and book https://bit.ly/whocaresbook
In the first of our Spotlight episodes Chandos talks to Emma Wood the Involvement and Impact Manager at The Brain Tumour Charity about Best Care Everywhere, the charity's new stratery to ensure people get the best treatment and care possible wherever they are in the UK. They discuss why the charity is working on this stratergy, how they are doing it and also share what you can do if you want to 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://www.thebraintumourcharity.org/media-centre/news/research-news/announcing-tessa-jowell-centres-excellence/
To find out more about the Involvement Network email involvement@thebraintumourcharity.org or visit our webite https://www.thebraintumourcharity.org/get-involved/volunteering/use-your-experience/
In this episode, you'll meet your hosts Sarah who works at The Brain Tumour Charity, and Cam and Chandy 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 you a bit more about what the podcast is going to be about and what you can expect from future episodes.
Email us at support@thebraintumourcharity.org
or visit our website at http://www.thebraintumourcharity.og
We also have information about how having a brain tumour can affect your mental health which you can find on our website
https://www.thebraintumourcharity.org/living-with-a-brain-tumour/health-fitness/mental-health/
If you would like to know more about our Young Ambassador Program you can find more information on our website https://www.thebraintumourcharity.org/about-us/who-we-are/our-young-ambassadors/