Charlotte's BAG – Battle Against Glioblastoma

“I will make something good of having this cancer. I will show others that it is not all bad. I choose to live life to the full and love every second on this earth, good or bad.”

Update from Newsletter 10 – APR 2021

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About

About Us

Charlotte’s BAG is one of the only UK charities specifically focussing on raising funds for research into, and awareness of, glioblastoma multiforme. This very rare and currently nearly always terminal form of brain cancer can affect anyone of any age. However, the plasticity of the brain as it develops during adolescence means that enormous changes are taking place, making any treatment for glioblastoma even more challenging.

Brain cancer is significantly underfunded, with only 1% of annual spending going towards research into cancers of the brain. This is one reason why there has been so little progress to date, unlike other cancers which have had massive investment and as a result seen survival rates increase dramatically. Brain cancer treatments have not progressed significantly since 1990, when temozolomide was first introduced.

Charlotte Eades died from glioblastoma in February 2016, just a week after her 19th birthday – but before her death Charlotte made a difference to thousands of other young cancer sufferers.

Why Charlotte’s BAG? BAG stands for Battle Against Glioblastoma, and Charlotte was a major handbag aficionado!

Charlotte’s BAG is a registered UK Charity: 1169419.

Charlotte’s Story

Charlotte had lots in common with many teenage girls. She loved fashion, make-up, music and cats, and planned to go to college to study beauty therapy. She believed passionately in justice and fairness, and that kindness was an essential part of life. She was beautiful in every sense of the word, and loving and beloved.

Her world, and that of her family, fell apart in August 2013, when after suffering headaches for four months she was diagnosed with anaplastic astrocytoma, an incredibly rare cancer which affects one in a million people (or one person in 25 full football stadiums). Over the next three years the astrocytoma developed into glioblastoma multiforme.

Never one to be beaten, despite this shattering diagnosis, Charlotte began to vlog via youtube, talking to other young people about her experiences of life with cancer – and living life to the full, despite her condition. Her voice reached out to over 16 million people worldwide, and her achievements were recognised with awards from charities Cancer Research UK and Clic-Sargent.

Charlotte continued to vlog almost to the very end of her life in a series of heartwarming, funny, emotional, poignant and sad conversations with her followers, and Alex and Miles continue to keep her channel alive as a resource for young cancer patients and their families.

The Positive Effects of Cancer

What positive effects could there possibly be? Well, Charlotte decided that she would not be defined by her illness, and that she would make a difference. Prior to her diagnosis Charlotte suffered from crippling anxiety problems, and her school life had been seriously marred by bullying, leaving her unhappy and quite isolated.

Cancer helped Charlotte find her voice, she gained the confidence to not only create her vlogs from the privacy of her own home but also to stand up in public and make speeches to audiences of several hundred people at a time. She also gained the respect of people worldwide and made lasting friendships in the process.

In Miles’ words, “cancer gave Charlotte so much, and took so much from the rest of us”.

In Charlotte’s words, “I will make something good of having this cancer. I will show others that it is not all bad. I choose to live life to the full and love every second on this earth, good or bad.”

The Team

ALEX EADES
Trustee

Charlotte’s mother Alex is using her infinite grief at the loss of Charlotte in two positive ways: to try and make sure that no other person suffers in the same way as their family, and to keep Charlotte’s legacy alive. Alex works in a school as an Assessment and Wellbeing Manager. Alex is the bereavement coordinator within the school.

MILES EADES
Chair

Charlotte’s brother Miles is adamant that Charlotte will never become ‘just another statistic’, and is determined to ensure that glioblastoma becomes ‘just another cancer’ rather than the death sentence it currently is.
Miles holds a first-class BA honours degree in Philosophy and History from the University of Southampton. MPhil degree in History and Philosophy of Science and Medicine from the University of Cambridge and a PGCE in Secondary School History from University of Sussex.

AILBHE CURRAN
Treasurer

Ailbhe Curran is a qualified accountant. She has worked in a variety of roles over the years including industry and the charity sector. At present she works in the finance office of a large secondary school in Brighton.

SOPHIE CROWTON
Fundraiser & Marketer

Sophie has worked in health and social care specialising in Dementia care for 19 years. She have such a passion for giving people a great quality of life no matter the situation.

Every life matters no matter how long or short and memories that live on in people shape our future. Charlotte was a brave beautiful woman who I was privileged to have met. As fundraising Coordinator I aim to help other people in this situation and raise awareness and together make sure Charlotte lives on forever. It’s an absolute joy to be part of the Charlottes bag family and I hope we can achieve great things

The Medical Team

Charlotte’s BAG has truly unique, and very privileged, access to the world’s top neuro specialists, based at King’s College Hospital London. The globally-renowned specialists featured here on our website have all either been involved with Charlotte’s treatment or have agreed to come on board with us because they believe that, together, we can make a difference in the diagnosis, treatment and eventually cure for glioblastoma. We thank them so much for their support.

STERGIOS ZACHAROULIS
Consultant Neuro-oncologist

Stergios was Charlotte’s neuro-oncology consultant at the Royal Marsden, and they became close friends. Partly driven by her death, Stergios moved to KCH in order to start driving forward more in-depth research into glioblastoma, examining new options and ways of getting treatment to patients faster and more effectively.

A graduate of Aristotelis University of Thessaloniki Medical School in Greece, he continued his training in the USA at Yale, SUNY at Syracuse, Sloan Kettering, Cornell, Harvard and the Children’s Hospital of Los Angelese before moving the UK.

Stergios has now been appointed Associate Professor of Paediatric Oncology at Columbia University Irving Medical Centre, New York, USA, where he will combine research and practice. He remains committed to Charlotte’s BAG and will continue to work closely with the KCH team around glioblastoma.

KEYOUMARS ASHKAN
Consultant Neurosurgeon

Ash is a consultant neurosurgeon and professor of neurosurgery, with a particular interest in neuro-oncology and functional neurosurgery. He is the lead for neuro-oncology, the chair for the neuroscience commercial clinical trial unit and the deputy chair for the neuroscience research advisory committee at King’s College Hospital, where he was appointed as a consultant in 2006.

Ash is actively involved in research, especially in developing novel treatments for brain tumours and for Parkinson’s disease. He is the European Chief Investigator for a major phase 3 trial of immunotherapy for glioblastomas. He is the UK lead for the Genomics England’s 100,000 Genomes project for brain tumours. He is the current president of the British Society for Stereotactic and Functional Neurosurgery. Ash has published over 400 peer review papers, abstracts and book chapters and is a reviewer for several journals and grant awarding bodies. He is actively involved in training both undergraduate and postgraduate clinical and research students. He co-chairs the UK training course to teach fluorescent directed surgery for gliomas. He is a regular speaker in national and international neurosurgical scientific meetings, and before joining KCH was a Senior Lecturer in Neurosurgery and Honorary Consultant Neurosurgeon at the Institute of Neurology and the National Hospital for Neurology and Neurosurgery for 2 years.

CHRIS CHANDLER
Consultant Neurosurgeon

Chris, along with Stergios Zacharoulis and Bas Zebian, was involved in Charlotte’s treatment at KCH, and became a firm friend of both Charlotte and her family.
Chris has been a consultant adult and paediatric neurosurgeon at KCH since 1997 and is one of the founder members of the London Neurosurgery Partnership. His impressive CV includes training and experience at the University of London (Westminster Medical School), Atkinson Morley’s Hospital, Bristol Frenchay Hospital and Nottingham (Queen’s Medical Centre). He undertook fellowships in epilepsy surgery (King’s College Hospital) and paediatric neurosurgery (Nottingham).

His main interests are in all aspects of paediatric neurosurgery and neuro-oncology. This includes the management of brain and spinal cord tumours in all age groups, metastatic brain tumours, epilepsy surgery and hydrocephalus. He leads the paediatric and adolescent (teenage and young adult) neurosurgical service at KCH.

BASSEL ZEBIAN
Consultant Neurosurgeon

Bas performed Charlotte’s spinal biopsy with Chris in August 2013. Following his medical studies at King’s College London, he completed his neurosurgical training rotating between King’s College Hospital, St George’s and the Hurstwood Park Neurosciences Centre, followed by a paediatric neurosurgical fellowship at Alder Hey Children’s Hospital. He is currently a Consultant Paediatric and Adult Neurosurgeon at King’s College Hospital NHS Foundation Trust – one of the busiest in the country and at the forefront of neurosurgical innovation.

Bas’ interests include the management of brain and spine tumours (including pineal, thalamic and brainstem tumours), hydrocephalus, endoscopy and minimally invasive neurosurgery, the management of Chiari malformations and syringomyelia, neural tube defects (including foetoscopic repair of spina bifida/myelomeningocoele) and the tethered cord, the neurosurgical management of paediatric neurovascular conditions (haemorrhages) as well as the treatment of the degenerative spine (slipped discs and trapped nerves).

Bas is the training and education lead at KCH as well as lead for undergraduate medicine for neurosurgery. He has an active interest in research with a number of national and international presentations and publications. He is the principal investigator at King’s in a number of trials. He is the organiser of the international Endoscopy in Neurosurgery course (a hands-on course covering all aspects of neurosurgical endoscopy – cranial and spinal). He has received a special recognition award for his endoscopic and minimally invasive techniques which have allowed access to previously inaccessible lesions and their resection using endoscopic ultrasonic aspirators with one of the largest series of such resections in the world. He has the largest UK series of paediatric brain and spine tumour resections using Gliolan (intraoperative tumour fluorescence).

RANJ BHANGOO
Consultant Neurosurgeon

Ranj qualified Victor Ludorum with the Medical School Gold Medal and Honours. After his general surgical training (FRCS England), his specialist training in neurosurgery was completed on the West Midlands neurosurgical rotation and he was awarded the Norman Dott Gold Medal in Neurosurgery on completion of his training as the highest ranked neurosurgical trainee in the United Kingdom. Following this, Ranj spent one year (2007) studying both the medical and surgical treatment of brain tumours as well as undertaking research at Europe’s leading cancer institute – The Institute Gustauve Roussy, Paris, France. In addition to his expertise in all areas of cranial and spinal neurosurgery; including degenerative spine disease which includes the management of back and neck pain, arm pain and sciatica together with peripheral nerve disorders such as carpal tunnel syndrome, he has specialist expertise in the management of Brain and Spinal Tumours. This includes the latest minimally invasive techniques for brain tumour removal as well as radiosurgery. He is one of the few neurosurgeons in the UK trained in both GammaKnife and CyberKnife radiosurgery.

PROFESSOR SAFA AL-SARRAJ
Consultant Neuropathologist

Safa is the Head of Department of Clinical Neuropathology at King’s College Hospital NHS Foundation Trust, Director of the Brain Bank and co-director of Brain for Dementia Research.

Safa has established a comprehensive neuropathology service for various needs such as diagnosis of brain biopsies, brain tumour, and pituitary lesions in addition to full examination of autopsy brains including those for medico-legal purposes. Safa’s role as a national expert on forensic neuropathology will be invaluable to the research work that Charlotte’s BAG is funding.

PROFESSOR ANIL DHAWAN
Medical Director of Paediatrics, King’s College Hospital

Anil has spent the past 15 years establishing KCH as a centre of excellence for paediatric liver disease, while at the same time being responsible for fundraising and setting up the Mowatt Laboratories, the facility within which Charlotte’s Lab will operate. Anil will act as the facilitator for Charlotte’s Lab and the research carried out there, and we are enormously grateful for his support.

Patrons

ELLY GRIFFITHS
Best-selling Brighton-based Crime Writer

Best-selling Brighton-based crime writer Elly Griffiths has become a patron of Charlotte’s BAG.

Elly is a friend of Charlotte’s mother Alex, and also knew Charlotte. She says: “I really admire the work Alex has done with Charlotte’s BAG, and her courage in carrying on after Charlotte’s passing. I’m delighted to add my name to the work the charity is doing, and hope that I can help raise awareness even further.”

Alex says: “Elly is our first official patron, and we’re so pleased she has agreed to join us, especially because she knew Charlotte. Thank you Elly!”

Elly Griffiths is the creator of the characters forensic archaeologist Dr Ruth Galloway and the 1950’s Brighton detective Edgar Stephens and magician Max Mephisto. Her books frequently top the best-seller lists, and she has won numerous awards including the prestigious CWA Dagger in the Library and Mary Higgins Clark awards.

www.ellygriffiths.co.uk

MATTHEW WRIGHT
Journalist and Broadcaster

Matthew Wright is one of this country’s best known journalists and broadcasters now hosting a daily talkRADIO afternoon show after 18 years of early starts for Channel 5’s The Wright Stuff. He’s interviewed Prime Ministers, eaten all manner of nasties in the I’m A Celebrity Jungle and had George Michael phone him live on air after his release from prison. A new dad, keen fly-fisher and vintage motorcycle enthusiast, Matthew occasionally gets on stage and sings with legendary space rock band Hawkwind.

Charlotte appeared twice on The Wright Stuff. Her and Matthew remained good friends thereafter.

FAQ

What is Glioblastoma Multiforme?
Glioblastoma multiforme is a form of cancer in which the brain cells start to divide rapidly and uncontrollably, creating a malignant tumour. These cells are also very good at escaping the site of the original tumour and migrating to other parts of the brain, where they start the process all over again.

Why is Glioblastoma so difficult to treat?
Glioblastoma is very aggressive; and its effect is to cause chaos in the brain. As it works its way through the brain it develops different characteristics depending on the new locations. Drug penetration varies depending on the density of the tissue and the interaction between the cancer cells with blood vessels and surrounding tissue, and is also impeded by the blood-brain barrier.

What is the blood-brain barrier?
The brain naturally protects itself from the entry of toxins by not allowing ‘foreign’ or ‘large’ elements through via the bloodstream. Unfortunately this means that the brain itself prevents medicinal drugs given orally or intravenously entering in large enough quantities to even begin to tackle glioblastoma.

Why does Glioblastoma affect young people?
No one knows! It may be that the brain is still developing (it continues to mature in physiological terms up to the age of around 25 years). What is known is that if a child under the age of 3 is diagnosed with a brain tumour survival rates are up to 60%, while over the age of 3 the prognosis is much bleaker. The plasticity of the brain as it develops during adolescence means that enormous changes are taking place. Teenage growth is fast, and cancer cells grow fast at the same time. Because of these change, any treatment for glioblastoma becomes even more challenging. Glioblastoma kills 5,000 people under the age of 40 in the UK every year.

What current treatment is there for Glioblastoma?
Current treatment includes surgery, although it is hardly ever possible to remove glioblastoma cells completely, and radiotherapy. Chemotherapy is largely ineffectual, provides minimal benefit and can be highly toxic in terms of its effect on the patient’s quality of life. After diagnosis current treatment is designed to minimise the symptoms for as long as possible and to provide effective pain relief.

What are the symptoms of Glioblastoma?
Because glioblastoma is relatively rare, it is often missed. However, a combination of any two or more of these symptoms should always lead to glioblastoma being considered:

morning headache relieved by vomiting
unexplained deterioration in school performance or behaviour
double or blurred vision
seizures not necessarily accompanied by a raised temperature

How is Glioblastoma diagnosed?
An in-depth neurological examination will take place, plus either a CT (computed tomography) brain scan, or an MRI (Magnetic Resonance Imaging) brain scan. CT uses specialised x-ray techniques to obtain pictures of the tumour, while MRI uses magnetism instead of x-ray to obtain the pictures. Depending on the location of the tumour within the brain a biopsy (surgical removal of a small sample of tumour tissue) may also take place.

Why is it taking so long to find a cure for Glioblastoma?
There are several reasons:

brain cancer in general only receives 1% of UK research funding annually
because glioblastoma is so rare there is no statistically significant data
lack of statistically significant data means there is no evidence of cost-effectiveness for any current forms of treatment

In our view, all these factors combine to create a vicious circle in which there is no cure for glioblastoma, and there is little treatment because there is no cure!

How will supporting Charlotte’s BAG help the fight?
Charlotte’s BAG is currently funding scientific research, based at Charlotte’s Lab in the neuropathology department at King’s College Hospital, London. The work involves close collaboration with the neurosurgeons and oncologists – The Charlotte’s BAG Team at King’s College Hospital are evaluating different approaches for mutation detection. This will be useful for monitoring patients after a diagnosis has been made. The Team is investigating a highly sensitive means of mutation detection which, it is hoped, will permit the detection of one molecule in 10,000-100,000. Such a means of detection enables oncologists to understand if surgery or therapy has been effective. Staff have been employed, consumables have been ordered and a company has been contacted for the acquisition of an instrument with which to carry out the research. The Team will use the research to assess further whether it is possible to classify tumours from cerebrospinal fluid without removing tumour tissue. As a member of the Team stated, though very early days, ‘this technology could be the future of brain tumour diagnostics.’

How much money does Charlotte’s BAG need to raise?
We are now in 2023 and so far we have raised £280,000 thanks to the generosity of people all over the world, we have funded a five-year scientific research position at Charlotte’s Lab.

So if you feel the urge to take part in a triathlon or a marathon (!) and want to support us we’d recommend gofundme for your social media campaign; or if you want to divert some of your ebay sales to Charlotte’s BAG you can be sure that we use paypal.

Tributes

You only truly die once everyone has forgotten you…
I found Charlotte’s channel after she was featured during youtube’s Stand Up To Cancer presentation. I’ve been disabled and chronically ill for most of my life, I’m now a 29 year old woman, but seeing Charlotte brought back a lot of memories. I related to what she was going through, I had been through much of it too. I enjoyed her spirit that shone through her videos.

I commented frequently and she was always great at responding. When I got sick my mom got me in contact with an aunt that had already been through it. That aunt (she is sadly passed now after a 15 year battle) was a wonderful guide in dealing with illness and the attitude needed to get through the day. I hoped my comments could help Charlotte even a small fraction as much as my aunt helped me in facing such big things at such a young age.

I’ve continued to watch the channel in honour of Charlotte and to make sure her memory continues to live on. You only truly die once everyone has forgotten you. Miles and Alex have done an excellent job in continuing Charlotte’s mission of showing what cancer is truly like, and removing the romanticization that Hollywood puts on it like No Fault in Our Stars. It’s an ugly, awful, terrifying condition that robs you of all you hold dear and the person you are by the end of it. Charlotte held onto herself until the very end and her strength is inspiring. It’s not easy to listen to Alex go through the timeline of all that happened in Charlotte’s battle, but I feel it is important to know. Both as a way to honour Charlotte’s mission, and to spread awareness and remove stigma from what cancer does to a person.

I had recently lost my grandmother to cancer right before finding Charlotte. I knew the grim truth of what cancer did to her, but she was in her 60’s and had been ill for a long time. Seeing Charlotte’s journey showed me that what my grandma went through is what dying of cancer looks like for everyone, young and old. I thank her for ripping back the curtains and putting light on these issues. I thank her for showing her strength and resilience in a time of such turmoil. I thank her for her painful truths she shared. And I thank her simply for letting us get to know her. She was a beautiful soul and the world is a better place for her having lived in it.

Bravery and spirit…

I found Charlotte’s Youtube channel while watching videos about brain diseases (I was diagnosed with multiple sclerosis some years ago). This was actually in February 2016, around the time of Charlotte’s death. So, sadly, I never had the chance to know her and comment to her while she was still here.

During one night I watched her videos from the beginning to the end and was amazed by her bravery and spirit. I was left speechless and deeply moved.

Even though she felt uncomfortable about her looks during the final months with glioblastoma multiforme (because of the weight gain and the problem with her eye), she made videos. She didn’t stop posting videos even when she was unable to speak. This was surprising and inspiring to me, especially because Charlotte came across as somewhat shy and guarded compared to most youtubers.

Along with bravery and a spirit of hope her videos communicated a sense of dignity while being disabled. Putting on makeup when you’ve just had brain biopsy and your vision is blurry is actually one part of that – why should you stop being stylish when you’re disabled? I also appreciate the fact that she was honest about experiencing depression, frustration and confusion. In her early videos Charlotte said she wanted to show people what it’s really like to have cancer as a young person, and she did it, including the late stages of her disease. I regard her with a special respect for this.

It’s wonderful that Charlotte’s family has continued with her legacy.

Guts and bravery…
I actually discovered Charlotte’s channel after she died – she did a collab with her friend Emily (fashioneyesta on youtube) who I subscribe to, so I came across her channel that way. I actually initially just thought ‘god, what a pretty & stylish girl’ on one of Emily’s videos so it came as quite a shock actually when I looked at her channel and realised that this beautiful, young and very stylish young woman who did flawless make up had really serious cancer and had, in fact, already died of it.

After that… I felt oddly unable to look away from it somehow. Honestly, I kinda wanted to click away from it and not think about it but I feel like people who are brave enough to share any part of their lives on you tube…and you watch even a second of it…you kind of have a duty to click ‘like’……and with her….hell, she was 19..I am 37…she had guts and bravery beyond anything anyone of that age should have to demonstrate and I felt like I should stay a while and hear her out, as it were. So the next day in a spare 30 minutes I looked at her channel a bit more – her videos and those of her Mum and brother and was incredibly moved by them.<< The thing is - I lost my partner to pancreatic cancer when I was 29 - I am not new to gut wrenching, sickening grief from which you never really fully recover, nor am I new to the 'bad' cancers that don't get any media attention because they're not pink and sexy but are, in fact, the most deadly and depressing statistically. So...I don't know.. I think I stayed on the channel for four reasons:

I like Charlotte! I like that she is real…yes, she was stunningly beautiful and chic (I follow quite a few beauty you tubers and fashion channels etc) but there was something slightly vulnerable and anxious about her that I don’t feel was anything to do with her cancer.
Charlotte loved handbags and so do I!
Because of my own loss…I remembered thinking at the time that I didn’t want people to forget my partner…I wanted to talk about him… I wanted other people to listen… so it was one of the reasons I continued and still continue to watch Alex and Mile’s videos… what they are doing is grieving in those videos… that relentless need to ‘do’ something is driven by grief… and if I can even be one person… watching, clicking like, making the odd comment here and there… I know how much it matters that the world hasn’t just carried on and forgotten.
I guess to remind myself that I am not the only person in the world who lost someone at a time that didn’t feel ‘right’ or ‘fair’ or ‘natural’ – that sounds really mean to Charlotte’s family but honestly, grief before natural old age losses is rage-inducing at times and I don’t think it does my angry self any harm sometimes to remember that there ARE people who have it just as badly if not worse…especially at Christmas and what not when it feels like the whole world is having a wonderful time – because these times can be the most difficult. But I do NOT mean I in any way revel in their pain – it moves me to tears, frequently.

Beautiful inside and out…

My dad died of glioblastoma multiforme. So, I was searching through YouTube looking for anyone who might have had successful treatment. That’s how I found Charlotte’s channel.

I wish I actually knew Charlotte. She was such a beautiful young lady inside and out, which says a lot about her sweet family. This shouldn’t have happened to her/them. Maybe one day the awareness you all are bringing to this terrible cancer will be instrumental in a cure. I just found out a friend I had lost touch with is in her last days due to glioblastoma. It just sickens me! The only thing I can say I am grateful about my dad having a glioblastoma tumour, is he didn’t suffer with the headaches that some glioblastoma victims have. Praying you all do something great with this awareness and charity!

So brave but so frightened…

I only became aware of Charlotte’s heartbreaking story recently, when I saw it on Facebook, shared by a mutual friend of Alex’s.

I realised that the family only live round the corner from me and yet I’ve never met them before. I was so touched by Charlotte’s videos and how lovely she was. It broke my heart learning about her journey and how she was so brave but so frightened. I can honestly say, I’ve not cried so much as I did in a long time.

I have two children and cannot begin to imagine the heartache Alex and her family are going through.

I really hope a cure can be found for this awful disease. Charlotte didn’t deserve this, it’s so sad.

A real inspiration…

In July 2015 I was due to donate my long hair to a wig charity for ill children and was originally only going to cut my hair into a short pixie cut.

This was until a work mate bet me to shave all my hair off, to raise £350 for the charity. I agreed, as I didn’t think I’d get that much money.

The next thing I know there is £300 on my fundraising page and it was quickly increasing. I panicked and ran to my computer to google search “what is it it like to be bald”. Nothing really came from this search and it was mainly aimed at men.

This was when I turned to YouTube and typed “being bald as a woman” and Charlotte’s channel appeared.

Her video “Cancer and Being Bald” went through the reactions she got and how she would live a normal life even though she had no hair. This really gave me confidence and taught me what to expect as a bald woman.

From there I was hooked, her videos were all so interesting and she had an amazing personality that shone through every video, even the ones she filmed as she grew increasingly ill.

Charlotte was a real inspiration to me as we were similar ages yet she was talking about issues that no one else was while also battling cancer. She inspired me to really push my fundraising as much as I could. Next thing I know, I’ve raised well over £350 and I’m bald.

However because of Charlotte I was prepared for it and I also made sure that being bald didn’t interfere with my life as I followed Charlotte by example. I’m sure Charlotte has helped many people, who have cancer or illness, to know what to expect and how to live a normal and positive life.

I was in tears when her passing was announced on her channel, she was taken too soon.

Charlotte is my hero…

I started watching Charlotte’s YouTube channel in early 2015 and followed (and shared via Facebook) her weekly updates. I began sending her messages on a regular basis, offering my support and expressing my admiration, for which she thanked me. At the same time I had just suspended my university studies following a mental breakdown (when I developed an eating disorder, severe anxiety and depression), whilst mourning the death of my (single parent) Dad.

I became a social recluse, sometimes unable to leave my student flat for up to two-month periods, and so conscious of the fact that I’d gained a huge amount of weight in a significantly short space of time and unable to bear how my friends and family would react to seeing me. Charlotte gained a lot of weight through being prescribed steroids and we confided in each other via Facebook about the discomfort each of us felt about how illness had altered our appearances (physical illness in her case and mental illness in mine). To this day, whenever I feel especially low, I find that by watching videos on Charlotte’s channel I’m able to pick myself up, appreciate that I have the chance to work on my issues and find the key to living a full life – something that Charlotte was so sadly stripped of<< It is because of Charlotte that I signed up and partook in Race For Life in the summer of 2015, despite being severely anxious throughout it and being physically incredibly unfit (and thus self-conscious) due to not leaving my flat for the 6 weeks leading up to the event (due to my anxiety). It was in doing this event, with Charlotte in mind, that I found the will to help myself again in the following weeks and months - to get fitter and embrace the goodness in my life that I had for so long been shunning. As time went on and I became more capable, my brother and I saved up £500 to help with the costs of her medication and I managed to do a sponsored 20km to walk to raise further funds for Charlotte's treatment. Charlotte's story brought me back to life and is still aiding me daily. After struggling for so long to leave my bedroom let alone walk to to the station and get on a train, when Miles texted me the sad news that Charlotte's cancer battle had ended, there was no question that I was going to be in attendance at her funeral in Brighton. Charlotte was very fashionable and so I picked an outfit I thought she'd approve of to wear to her funeral... A black dress (a traditional and respectful choice), covered in flowers - decorated to reflect how utterly beautiful a person, inside and out, that she was. Charlotte Eades is my hero. I am endlessly grateful for what she has done and is still doing for me... I'm honestly not sure that I'd still be here today if it weren't for her.

Strength, personality and amazing taste!…

If I recall correctly I stumbled upon Charlotte’s channel looking for makeup hauls or something along those lines in November 2015. I binge watched her videos and was blown away by her strength, personality and frankly her amazing taste. I’ve been following Alex and Miles since she passed and for the first time in my life mourning someone I never got to meet. It’s a strange concept, almost like it’s not your right, but she’s touched my life forever. I’ve battled mental illness -generalised anxiety disorder with a side of depression and anorexia- for years. Charlotte never complained, even when depressed and fed up, she never truly complained, she just expressed her frustration and tried her best to live not just exist but live, truly live.<< Even when her body was failing on her, she made sure we were updated. And she was taken away, so quickly… it's made me fight more. It's made me try even when I'm having the worst of times, it's made me want to enjoy things and fight my head, because she didn't get that chance. And because whilst she battled her own fight she did it with so much strength. I look up to her. I find myself re-watching her videos when needing encouragement or when I think life's just too much. She'll never be just a statistic to me and I hope she never becomes just a number.

Every day is precious…

My little girl got run over and is left with severe traumatic brain injury (Michael Schumacher injury). I looked on youtube for others in similar position and if they recovered. I found Charlottes channel and she was inspirational. I never thought she was going to die and it affected me more than it should because I don’t know her. My little girl is now 17 and we were told she would not make 16 so every day is precious.

I understand how Charlotte’s family would have felt watching their loved one deteriorating and being totally helpless and just praying for a miracle. It is 24 hours a day and you start to treasure every second you have with them. Sounds selfish, but watching Charlotte’s videos took my mind off my own daughter for a few minutes. In the children’s hospitals there is lots of support from parents going through the same thing. But now my daughter is 17 she is on adult wards, usually with pensioners and the support isn’t there. << Thank Charlottes family for thinking of others. I know how proud they must be of Charlotte. The one thing the children that knew they were dying had in common was that they never ever complained. Life is a constant struggle so I have some understanding of what Charlotte’s family went through and will continue to go through for the rest of their lives. Seeing make-up tips from a girl so ill and her positivity in taking on each new challenge somehow helped me cope better. I continue to subscribe to Charlotte’s channel in the hope that her family feel less alone.

Charlotte became our voice…

I was first introduced to Charlotte’s blog through a friend who had been involved in raising funds for cancer charities. I had major surgery for cancer 17 months ago and I cannot tell you how alone, frightened and anxious I felt. The waiting for results was long and almost unbearable. Results for the initial diagnosis and then results every time tests are carried out post op. The strain is too much. Family is all important at this time.

Charlotte showed immense strength, told it like it was and if Charlotte could do it then I, at 62, could do it too! I cried along with her and for her, I felt for her when things were not going well.

My prognosis is good and I have check ups every four months now. I was devastated when Charlotte passed away. We could see how ill she was getting but yet hoped against hope that she would find a miracle<< I fell into a spiral of depression and anxiety after my op and what helped me was not medicine or counselling but Charlotte's documented fight. She was a beautiful girl taken far too soon. How could I not get up and get on with it after what happened to Charlotte? She, more than anyone else, taught me that life should be grabbed by both hands and lived. I only wish Charlotte had been as lucky as me. Anything that draws attention to this awful disease is a good thing. Charlotte was an inspiration to many people but most of all she was a beautiful, frightened, sick young lady who took the time to share her terrible journey with us all. She wasn't afraid to show the bad bits - and there are so many bad bits that no one but another sufferer would understand. That's brave and unselfish. For those of us who went through the hell of a cancer diagnosis and follow up treatment Charlotte not only struck a chord, she became our voice.

Stoic, admirable and refreshing…

I found Charlotte’s channel after hearing about her story and involvement in The Race For Life on Facebook. During this time I was coming to terms with my mum’s terminal diagnosis of cancer, and later her death just a very few months prior to Charlotte’s own.

Seeing how Charlotte coped so stoically and admirably even at a time when no one would have blamed her for giving up, helped me to find some of that same strength in my own battle and similarly with the courage Alex and Miles have displayed following her tragic death. So often people are wary of speaking about cancer for fear of saying the wrong thing or causing upset, but I personally have found it so refreshing to hear first hand from Charlotte and her family the unedited, uncensored story.

Why?…

My daughter died from the same brain cancer as Charlotte, and was 32 when she died in May last year. There are a cluster of deaths from glioblastoma in young people according to our consultant; but no-one is gathering any information about “why” this dreadful cancer is occurring. Is it dental x-rays, mobile phones, glandular fever….? Something must be at the root of this.

I found Charlotte’s information because I am also trying to make sense of this loss.

It was an awful, awful death. Slowly that thing in her head took things away from her – and she knew – she was completely aware until the last weeks (and even maybe then too, but unable to communicate). It took her job, ability to drive, independence, mobility, speech, continence and then her ability to swallow. Can you imagine that? I do – all the time. Luckily for us she died at home, we were with her when she took her last breath. It was very, very sad, but also a relief that she was now no longer suffering.

Contact

Whether you would like to talk to us about your or your family’s experience with glioblastoma, you’d like to know how you can help, or you are a journalist looking for more information about Charlotte’s BAG, please get in touch. We will make sure your email gets to the right member of the team, and we’ll reply to you as soon as possible.

Newsletter 12

Newsletter 11 – JUN 2022