Let's Talk About Brain Tumours

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 Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 hereIf you want to get involved in their challenge you can email them at: Loungav25kwalk@gmail.comBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 here Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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&aposs 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  involvement@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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  research@thebraintumourcharity.org or phoning 01252 418190.Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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/Syren Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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&apost 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 ClinicIf 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 Bethan and Gbenga Adelekan who&aposs 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&aposs Dream.You can find out more about Ravi&aposs Dream here You can follow Ravi&aposs story on instragram @ravis_dreamYou can also find out more about our Children and Families Service on our website hereBetter Safe Than Tumour Money Advice ClinicIf 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 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&aposs.  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 hereYou can find out more about the research that The Brain Tumour Charity fund here:Research into Adult Brain TumoursResearch into Childhood Brain TumoursIf you would lke to make a donation to enable us to continue to fund research into brain tumours you can find ways to donate hereYou can vist our website hereBetter Safe Than Tumour Money Advice ClinicIf 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 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.orgYou can also find out more about the support available at the charity by visiting our website here Better Safe Than Tumour Money Advice ClinicIf 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 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 childrenandfamilies@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

(Trigger Warning)  In this episode - Benj talks about the impact of his daughter Ivy&aposs 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&aposs important to remember that everyone&aposs 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.If you would like to know more about our counselling service you can find information hereWe also offer Relationship counselling which you can find out more about here You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.orgYou 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 support@thebraintumourcharity.org

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 hereYou can also find out more about our events for young adults hereWe also hold Family Days for families with children under 18 which you can find out more about hereYou can also contact the support team by calling 0808 800 004 or emailing support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

(Trigger Warning)  In this episode - Benj talks us through every parent&aposs 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&aposs important to remember that everyone&aposs experience is different, this is Benj&aposs 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 support@thebraintumourcharity.org.You can email our Children and Families Team - childrenandfamilies@thebraintumourcharity.orgYou 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 support@thebraintumourcharity.org

 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 &aposMummy has a lump&apos 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 &aposDaddy has a lump&aposYou can find out more about Simone here  You can find &aposMummy has a lump&apos  here and &aposDaddy has a lump&apos hereYou can also find more information about talking to children on our website hereYou 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 0004Better Safe Than Tumour Money Advice ClinicIf 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 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  hereYou can read more about Dave Bolton here You can vist our website here If you&aposd like to talk to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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&apost 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&aposs 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 ClinicIf 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 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 hereYou can also find out more about the Oli Hilsdon Foundation here and OSCAR’s Paediatric Brain Tumour Charity hereBetter Safe Than Tumour Money Advice ClinicIf 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 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 0004Better Safe Than Tumour Money Advice ClinicIf 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 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 N1You can find out more about TIME here or contact the team by emailing time@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Elizabeth and Julia are hosts of the podcast &aposOn a good day&apos. Here, they talk about their experiences of caring for their partners who both live with the impacts of brain injury. Elizabeth&aposs husband Paull had a stroke when he was just 38 and Julia&aposs 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 and relationships.You can find out more about Elizabeth and Julia on their soclal media channels:  Instagram - @onagood.dayTwitter - @onagood_dayFacebook community - On A Good Day groupOn a Good Day is available to listen to now on Apple and Spotify Better Safe Than Tumour Money Advice ClinicIf 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, 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 hereNB:  As we are a UK based charity our Benefits and Money Clinic is only available to UK residentsAs always our support team are always here to support you, you can call them on 0808 800 004 or email support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 Better Safe Than Tumour Money Advice ClinicIf 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, 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 Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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&aposs further information for carers on our website hereBetter Safe Than Tumour Money Advice ClinicIf 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 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&aposve 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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, 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 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 Better Safe Than Tumour Money Advice ClinicIf 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&aposre 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.orgYou can also find Sasha&aposs book &aposFollow the child&apos hereYou can find out more about Compassionate Friends hereYou can find out more about the support offered by Marie Curie hereYou can also watch the video by Kathryn Mannix that Sacha mentioned hereBetter Safe Than Tumour Money Advice ClinicIf 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, 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 Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

What is an Advance Care Plan? How do you go about creating one and why is it so important?Sacha Langton-Gilks&apos 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 &aposFollow The Child&apos 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 find Sacha&aposs book hereYou can also find information around end of life planning on our website hereBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

This episode was recorded in September 2021 but as this week is National Eye Health week we thought we&aposd 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.orgFind out more about National Eye Health Week by visiting Vision Matters https://www.visionmatters.org.uk/Better Safe Than Tumour Money Advice ClinicIf 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, 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 hereIf you would like to talk to a member of our Support Team you can call 0808 800 0004 or email support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf 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 Chandos talks to Tamsin Tyson our Individual Giving Officer about the recently launched charity lottery.  Tamsin explains what the lottery is and why we have decided to create a lottery as a way to continue to be able to raise money for vital research into brain tumours at a time when the cost of living rises have hit charities fundraising efforts.You can find out more about the Lottery here.Better Safe Than Tumour Money Advice ClinicIf 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 Rob, diagnosed with a grade 2 glioma, and Carly, with a grade 2 oligodendroglioma, about what it&aposs 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 anaestheticThey share their experiences and things they found helpful.You can find out more about craniotomies hereYou can read more about Meningioma&aposs here,  oligodendroglioma here and glioma&aposs hereIf you would like to talk to a member of the support team you can call 0808 800 0004 or email support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf 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 Ali Lopez, the charity&aposs 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 01252749990If you would like to speak to a member of our Support team you can call 0808 800 0004 or email support@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf 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&aposd 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 Better Safe Than Tumour Money Advice ClinicIf 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, 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&aposs 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&aposs 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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 I talk to Kaz and Lauren about what it&aposs 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&aposs 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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, 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 hereYou can also contact the Involvement Team by email involvement@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf 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, 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 hereYou can find out more about the support available from our support team hereYou can contact our support team by calling 0808 800 0004 or emailing support@thebraintumourcharity.org Better Safe Than Tumour Money Advice ClinicIf 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 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.orgYou can find out more about Alex here Better Safe Than Tumour Money Advice ClinicIf 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 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 &aposcured&apos 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 hereIf 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 hereBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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/Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 hereIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

TW: emotionally challenging contentOur 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&aposs perspective  to see her child in distress when other people couldn&apost 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&aposre going through, you can contact our Children and Families Team by emailing childrenandfamiles@thebraintumourcharity.org or call our support line on 0808 800 0004You&aposll find more information about the Children and Families Service hereIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 weekBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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&aposs built up a following of thousands by sharing positive messages when he wakes in the wee small hours. It&aposs become the 3am Awake Club! You can find Andy on Twitter here @AndyHTudor1You can find more information about the side effects of a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/Better Safe Than Tumour Money Advice ClinicIf 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 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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 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&aposs diagnosis you can join our Young Adult Carers Facebook Group here https://www.facebook.com/groups/thebraintumourcharityyoungadultcarerssupportgroupIf you are over 30 you can join our main Carers Facebook Group here https://www.facebook.com/groups/470978559740874You can contact our Young Adults Team by emailing YAS@thebraintumourcharity.orgor call out support line on 0808 800 0004You 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/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 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&aposll 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 our website here https://www.thebraintumourcharity.org/get-involved/volunteering/If you have any questions you can get in touch with the team by emailing volunteering@thebraintumourcharity.orgBetter Safe Than Tumour Money Advice ClinicIf 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 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.orgFor 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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 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.orgFind out more about National Eye Health Week by visiting Vision Matters https://www.visionmatters.org.uk/Better Safe Than Tumour Money Advice ClinicIf 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 Diane Thomas about how a loved one&aposs diagnosis changes life for everyone not just the person with the diagnosis and why creating a new &aposnormal&apos is so important. Diane talks about problem-solving and finding creative solutions to keep creating a new &aposnormal&apos as things changed.   Diane also talks about her experiences of having to deal with her husband&aposs 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&apost 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.orgYou 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/470978559740874If 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/Better Safe Than Tumour Money Advice ClinicIf 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 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 StoreIf 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 Better Safe Than Tumour Money Advice ClinicIf 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 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.orgBetter Safe Than Tumour Money Advice ClinicIf 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 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&aposve 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.orgBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Co-host Sara Challice explains what it&aposs like when you&aposre told that a loved one has a brain tumour and how her husband&aposs 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 the 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 at the contact details below. We also have dedicated private Facebook Groups for Carers and people affected by a loved one&aposs 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/thebraintumourcharityyoungadultcarerssupportgroupYou can find more information about support for carers on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/Sarah Challice&aposs website www.whocares4carers.com and book https://bit.ly/whocaresbookBetter Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

In the first of our &aposSpotlight&apos episodes, Chandos talks to Emma Wood who is the Involvement and Impact Manager at The Brain Tumour Charity. They discuss why The Charity has launched "Best Care Everywhere" - its 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://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 website https://www.thebraintumourcharity.org/get-involved/volunteering/use-your-experience/Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Welcome to the very first episode of The Brain Tumour Charity&aposs podcast! In this episode, you&aposll meet co-hosts Sarah, who works at The Charity, and Cam and Chandos - volunteers who are both living with a brain tumour diagnosis.  They&aposll be sharing their experience of what it&aposs like to be told you have a brain tumour and what it&aposs like to live with a diagnosis.  We&aposll also be telling what you can expect from future episodes. For more information about what we do, visit our website at https://www.thebraintumourcharity.ogIf 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/Better Safe Than Tumour Money Advice ClinicIf you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org