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A space for people who find themselves reporting from the front line of a brain tumour diagnosis
Over time, the purpose of this website has changed. What started off as a place to consolidate amazing fundraising efforts and to document Stuart’s journey following his glioblastoma (grade 4 brain cancer) diagnosis has instead become a place to honour his legacy and to provide help and information to others who are facing the same struggle with this horrible disease.
Stuart died in November 2021 from a pulmonary embolism, following a 10 month battle with GBM. While this is a devastating end to his journey, it was his clear wish to be as helpful and as useful to as many others as possible. As his very proud wife, it’s my mission to finish this site, and to fill it with as much as possible that could provide crumbs of comfort, useful resources and places to turn for patients with GBM and those caring for them. This is the website we wish we had found at the beginning of our journey.
Brain tumours are the biggest cancer killer of children and adults
someone is diagnosed with a brain tumour in England
TMZ WAS APPROVED BY THE FDA IN 2005 AND NICE IN 2007. THATS 15 YEARS WITHOUT SIGNIFICANT IMPROVEMENT IN STANDARD OF CARE TREATMENTS FOR BRAIN TUMOURS. 15 YEARS!
of brain tumour patients survive beyond five years of their diagnosis
OF THE CANCER RESEARCH SPEND IS SPENT ON IMPROVING TREATMENT FOR BRAIN TUMOURS
worldwide an estimated
people were diagnosed with a primary brain or spinal cord tumour in 2020
As we rode this terrible rollercoaster, every single patient and caregiver we spoke to and became friends with along the way had things in common. GBM being the obvious one, LOVE being the second, HOPE being the third and HINDSIGHT being the fourth. These are the pillars we’ve used when putting together this website.
It’s important to note here, before you go any further, that everything gathered on this site is based on our experiences, our findings from talking to a range of experts, and our personal research. Cancer is so bloody complex. Every single patient with GBM is different, brain tumours are extremely genetically heterogeneous, each patient has a different immune system and different genetic mutations, and this should be borne in mind as you’re reading Stuart’s journey and the things we tried. This site does not represent official medical advice, nor should it be taken as a substitute for information provided by your doctors and oncology team.
The goal is to offer you as many avenues to pursue as possible, and to help make it easier for you to advocate for yourself or your loved one in the face of potentially frustrating dead ends. The sad fact is that cancer care in the UK is lagging behind in a big way compared with many other countries in the world. Treatment in the UK hasn’t changed or improved in decades, and we quickly realised that we were going to need to take on a lot of the burden of research and pushing for different options and opinions ourselves. By sharing everything that we tried, and creating one database for the many different options we were faced with, I’m passing on the baton to you lovely folk so that hopefully your mission is more successful than ours.
We're not here to judge your diet, tell you what to do, wow you with natural magical cancer cures, start any sentences with “at least” or say that I can relate to your story but hopefully the information that we gathered may help you, or someone you love.
I miss my darling Stu every single minute of every single day and I am so proud of how he handled everything with grace, bravery and his wicked sense of humour. He lived life with hope and so much love. He was adamant that his purpose was to help others who found themselves in this shitshow and I intend to ensure that his life remains as remarkable and magical as it was when he was here by writing his story in the hope it can help others.
Part of Stu’s legacy is The Stuart Bathers Fund – a charitable fund we’ve started in partnership with ACT for Cancer to help save patients precious time. All money donated to The Fund will go towards funding bursaries for the ACT Above and Beyond Patient Navigator service, allowing access to information and highly personal treatment plans that would otherwise take months to build. You can find out more about The Stuart Bathers Fund HERE.
Remember, I am not a doctor, everything you read here is not medical advice. It’s Stu’s story, his journey and his quest to find hope and to help as many people as possible.
Thank you for visiting.
Stuart & Esther Bathers x
This is a chapter of our story, dictated by Stu and written by me (Esther). As things progressed, it got more difficult for Stuart to express himself, but it’s so important to us all to include his voice here as much as possible. I hear it every day, and it’s in every decision I make.
Click here to read Stuart in his own words, and if you’d like more of our story as it unfolded, as well as musings on life after Stuart passed away and our IVF journey for our much-wanted and already so loved baby, you can head to the DIARY section of the site.
in his own words...
Founded under the umbrella of the charity ACT for Cancer Foundation (which operates under the auspices of Prism the Gift Fund), the fund will offer bursaries for patients diagnosed with hard-to-treat cancers, to help with personal treatment plans and access to networks of global experts who can facilitate experimental treatments outside the UK. Specifically, the bursaries will allow patients to gain access to one of the innovative Patient Navigators founded by Act Above and Beyond.
Act Above and Beyond is a not for profit organisation started by Cordelia Taylor a GBM survivor and a dear friend of ours and Dr Jack Kriendler, the founder of ACT for Cancer.
Stuart’s capacity for generosity and his desire to help others is one of the many things that made him so wonderful. Throughout his experience with Glioblastoma, he was adamant that he wanted to find ways to be of as much use to other people facing this disease. After his death, our families have made it our mission to honour these wishes, by setting up The Stuart Bathers Fund.
No one on this planet, not even a GBM survivor can tell you with complete certainty that the treatments they had will work for anyone else – cancer is so complex. Research is lacking in the brain tumour department, it’s underfunded and needs much, much more attention. We were told that it’s rare, but it’s not. It’s rarer in younger people, but brain tumours are still the biggest killer of children and adults under 40 than any other cancer – more needs to be done to ensure that the survival rates increase. We wanted more than anything for Stuart to be part of the 5% that make it to five year survival, and we’re heartbroken that he didn’t. The information provided here forms part of Stuart's story, to show you how we tried to find his cancer’s Achilles heel and some of the things we learned along the way.
I hope that there will be something here that might help you move forward, or sideways, or whichever direction you need to go in to make progress against the personal cancer you or your loved one is facing.