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A warm welcome to Let's Talk About Brain Tumours!
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 mediaIf you have any questions about this episode or want to find out more about this podcast, you can email the team at: [email protected]
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 informationProducer: Jo Porter
Audio editor: Elliot BroadBetter Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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, discuss the work they are doing now and their plans for the future.
Better Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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Fehlende Folgen?
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We meet Gavin Burden and Louise Worthington who have both been diagnosed with brain tumours. Gavin has been living with his brain tumour since he was 21 - for 28 years. Gavin and Louise have been friends for a long time so when Louise was diagnosed with a brain tumour in 2018 Gavin contacted her to offer support.
In the episode, they share the difficulties of living with hidden disabilities as Gavin has since lost 75% of his vision.
Despite these challenges, 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 at: [email protected]Better Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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Today, Chandos talks to Support Manager Beth Ryall, about the support available at The Brain Tumour Charity for people who are experiencing difficulties with their mental health following a brain tumour diagnosis.
You can find out more about this hereBetter Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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Anya Jones and Kaz Melvin about their experiences of rehabilitation. Anya needed extensive rehabilitation after her diagnosis and treatment while Kaz has both personal and professional experience of brain tumours and rehab. She is a physiotherapist and she supported her sister Ria who sadly died from a glioblastoma in 2021.
Anya and Kaz have worked with The Charity to create some resources to help people understand the sort of rehab that's available and how it can help them. You can find out more here
If you would like to be involved in the work Kaz and Anya are doing, email [email protected]Better Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 an innovative project to simultaneously target 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
Find out more about the research The Brain Tumour Charity funds here
You can contact our Research team by emailing [email protected] or phoning 01252 418190.Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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When Alex - also known as the performer Syren - was diagnosed with a rare paediatric brain tumour called DLGNT at the age of 20, his family found that there were limited treatment options.
His mum, Katie, did her own research into how to best help Alex and found out about the Everest Centre. In February 2024, His dad Martin and three of his friends took 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 Martin is doing here and follow Team Syren on Instagram @everestinthealpssyren
You can donate using the links below at: https://www.justgiving.com/team/SyrenBetter Safe Than Tumour
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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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We talk to Liam Young about how physical fitness contributed to his recovery from treatment for a brain tumour. Liam found that the traditional route of counselling wasn't for him. His perfect form of therapy was with a personal trainer.
At 25 he had never prioritised his health, but after his diagnosis Liam realised how important it was and 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.
To find out more about how a brain tumour diagnosis can affect your mental health and the support available, take a look at our websiteBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 hereBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 hereBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected]
You can also find out more about the support available at the charity by visiting our website hereBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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In this episode Chandos talk with two of our Children and Families and Young Adults Workers Amy Watts and Jessie Poole about the support that is available to families who have children under 18. Some of the things mentioned in this episode include:
Family DaysBrainy BagsOnline support group for parentsTalking to children about brain tumoursTaling to children about their brain tumourTeens InstagramTeen Meet upsSibling SupportIf you would like to know more about our Childrens and Familes Service you can find out more here
You can also contact the team by calling 0808 800 004 or emailing [email protected]
Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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(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 [email protected].
If you would like to know more about our counselling service you can find information here
We also offer Relationship counselling which you can find out more about here
You can email our Children and Families Team - [email protected]
You can find out more information about Craniopharyngioma here.
You can find out more about our Children and Families Service here.If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected]Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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(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 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 [email protected].
You can email our Children and Families Team - [email protected]
You can find out more information about Craniopharyngioma here.
You can find out more about our Children and Families Service here.If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected] or calling our support line on 0808 800 0004Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected]Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 adultsBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected]. 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 hereBetter Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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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 [email protected] or call 0808 800 0004Better Safe Than Tumour
Money Advice Clinic
If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email [email protected]
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