This is a story that did not end in the way any of us hoped, and Stuart passed away in November 2021. But what started as a story has now become a legacy. Stuart’s desire to give back was one of the many things that made him so amazing. With this website, we’re hoping to do just that, and to help others facing the fear and uncertainty of a GBM diagnosis find information, solidarity and strength.
Here you can read about Stuart’s path from diagnosis to beginning pioneering treatment in Germany. Then, head over to the Next Steps section where we’ve gathered information from our personal experience and broken them down into in bite-sized chunks that might help you navigate your way through this difficult journey. You can also find Other Stories and personal experiences that have generously been shared with us by survivors and those who are currently facing Glioblastoma.
So, here’s our beloved Stuart, to tell you some of his story written in September 2021.
“Firstly... thank you for arriving at this page. It means the world to me.
So, here we are, in a position we never in a million years imagined we’d be in. After everything that happened in 2020, 2021 was supposed to be a better year for everyone, right?!
A quick note, the ‘we’ here is me, Stu (the one with the brain tumour) and my wife Esther. This is everything I want to say, but it’s written by Esther because at the moment I physically can’t – one of the more frustrating symptoms of this thing.
While all this was going on, I asked Esther to marry me, and she said....YESSSS!! She, her family and a group of our friends swung into action, organising the most beautiful day in just 36 hours. We had to get a special license to get married because it was still during lockdown, but it was a small and perfect day, just us and four family witnesses in the park. We had no big party, and not even any champagne as I was booked in for my biopsy on our wedding night. But we were on cloud 9, and I felt and still feel very lucky to have Esther as my wife! Getting married has given us a huge boost of positive energy, and we’ve just celebrated our 8 month anniversary.
In January 2021, at age 39, I was diagnosed with a form of brain cancer called Glioblastoma. It’s always classed as Grade 4 – that’s how rubbish it is. It started with headaches and confusion, but quickly developed into stroke-like symptoms. After an emergency CT scan on 22nd January, the tumour was discovered and the Dr gave us the devastating news. During those first few days and nights in hospital, the nurses and doctors weren’t giving much away, as a specialist consultant needed to see me, and it was the weekend. We were also in the middle of one of the UK’s many Covid lockdowns, which meant Esther was only allowed to visit for short periods of time.
Honestly, I was so disorientated it was hard to take anything on board. Seemingly overnight I developed struggles with speech, reading and basic cognitive functions like memory and understanding. I’m still relearning these now – it’s hard work. Even then, though, I remember thinking “I’m a fit and healthy 39 year old. It’s surely not gonna be that bad.” But with every appointment and grim-faced doctor we saw, it was soon confirmed that it was indeed that bad.
The tumour was initially thought to be operable, which would buy me more time – potentially significantly more time. Unfortunately though, in the wait for surgery to be booked, it grew into the midline, making surgery too dangerous and taking it off the table as an option. This diminished my chances of survival even further.
Both the surgeon and the oncology team at our local hospital said they were sorry, but Glioblastoma isn’t a cancer with a cure. We were looking at palliative care to try and prolong my life, but that was the best we could hope for. I didn’t want to hear the prognosis, and to this day I’m glad that I made that decision. No doctor or scientist knows exactly the timing and no person on this path is the same as me. Being told by my doctor that the treatment they could offer me wasn’t likely to work, without offering any insight into anything else didn’t sit right. We decided it was time to seek other opinions, and get researching.
With help from my beautiful new wife, our friends and family, and the huge and incredibly knowledgeable and welcoming cancer community online, I set about researching every possible thing I could do to reverse the dire situation I found myself in. Alongside the treatment and care I’m receiving from my NHS oncology team, I’ve been having Zoom consultations with experts, practitioners and specialists across the globe, to find out what can be tried to help prolong and (I’m praying) save my life. It’s been intense and tiring – having daily discussions about different possible treatments, sourcing supplements and off-label medications, reaching out to survivors, completely changing my diet (a source of many disagreements with Esther), embracing all things mindset and taking on board as much information as I can, all while still not being able to read for myself and struggling with headaches and brainfog from the palliative radiotherapy has left me exhausted. But I feel like there might be some hope on the horizon.
Glioblastoma is a difficult cancer to treat – it’s known to some doctors as ‘The Terminator’ (nice, right?!). We were told that no-one survives it, despite having spoken to several amazing long-term survivors, who are not only alive but thriving. I’m so thankful we didn’t listen to those who told us to stop the research and just enjoy the time we had left together. We’ve promised each other that we’ll do anything and everything in our power to get a better outcome. And one of those things lies in Germany.
We’re working with a specialist clinic in Germany called CeGat. DNA sequencing from my tumour sample has been completed and my neo-peptide vaccination treatment is currently being made. This is totally personal to my tumour and my version of this disease. We are travelling to Germany in September for the first four of my vaccinations.
This is the training phase where my T-cells will be trained to seek out and destroy the now identifiable peptides. You see cancer is sneaky and managed to go undetected by my immune system and grow into a big problem – until now. I will then need to travel to Germany every four weeks for the next year, and then once a year for a booster.
They have also identified targeted medicines that will work against my mutations and block pathways better than the generic chemotherapy options offered by the NHS. We are frequently told “that’s not evidence based” when we bring this up, but the fact is we simply don’t have years to wait until a clinical trial gets to phase 3 and possibly becomes available here in the UK. The fact that the CeGat report has identified these medicines specifically for my DNA results is evidence enough and science backed. This treatment alongside the vaccines means my chances of survival right now are far greater than we ever could have imagined.
I can’t see into the future. I don’t know how this is going to go, or how long I have left but I do know that what I want so much is to stay with my family, my wife, our puppy Archie and start the family that we so long for. However this turns out, though, I promise to do all I can to raise awareness of this awful, scary disease. I don’t want everything I’ve been through to be in vain, and I won’t go away quietly. I want to spread the word and make the information we’ve worked so hard to gather available and easily accessible to those who might find it useful.
Forgive me but this next part of the story is incredibly difficult for me to put into words. This part has been left to me, Stu's wife Esther to explain because Stu unexpectedly died one Sunday evening without much warning. A post mortem had to be carried out because even his doctors were baffled. That was in November 2021 so before concluding this story and leading you to read the Steps pages I'll rewind and briefly explain how far we got with the most amazing team of medical professionals brought together from all over the world. The rest of the details I will write about in the diary section soon.
In September 2021 we went to Germany for the first round of treatment at CeGat, paid for by generous donations - we were there for six days and all went to plan. Whilst there we explored the area, Stu had four of his personalised peptide vaccinations and we padlocked our love onto the bridge in Tubingen.
When we returned home, Stu continued on his new line of treatment as advised by his medical team following the analysis of the genetic sequencing report by CeGat and Alacris. We planned our next trip to Germany in October which was just going to be for 24 hours but there was an unexpected turn of events when Stu became unwell just before he was to receive the fifth of his personalised vaccinations. He was taken by ambulance to the hospital in Tubingen and received treatment for the next seven days. They relieved the built up pressure in his brain with Manitol and steroids and started him on Clexane (blood thinners). It was really scary to be in a hospital in a country where you don't speak the language. The hospital let me stay in the room with him so that we weren't separated, something which I'm very grateful for. Over the seven days we were there they carried out multiple tests, MRI's and because the swelling was taken down he was able to speak and the difference was so immense.
Two of my brothers drove from the UK to Germany to collect us which was amazing. Before we left we returned to Cegat so that Stu could have the fifth of his peptide vaccination and the first cycle of Avastin. Once we returned home it took a few days for Stu to regain his strength and during this time he had a couple of focal seizures which we managed with a supplement called Taurine recommended by Patrice Surley. Stus international medical team had reviewed the latest scans and concluded that his tumour was stable so this wasn't being caused by progression.
On the evening of 21st November Stu started having trouble breathing, it came totally out of the blue, one minute we were sitting there taking photos with Archie waiting for a curry to be delivered and the next I was dialling 999 and our neighbours were helping me do CPR. After a long wait the ambulance crew arrived and took over. 20 minutes later they pronounced time of death and everything that we thought our future would look like changed in a flash.
The next few months were a blur, no one wants their loved one to go through a post mortem, or to be investigated because treatment was outside of the usual standard of care or to pull together a celebration of life unexpectedly. I've written more about this in the diary as well as my musings on what its truly like to become a full time carer for my young husband but I know that Stu's wish to finish this website and create a legacy was very important so I have spent the time since he passed building this resource and we founded The Stuart Bathers Fund to help other patients and families who find themselves on the wrong side of this shitshow.
You hear stories of these tragic things happening, you just never think it would happen to you or your family and you would never expect that our much loved NHS would be so restricted with the treatments they offer. No one wants to go to battle with their oncologist or local CCG or have to fundraise to pay for life saving treatment but we hope that by reading Stu's story, having the steps and information to hand that you can get to a safer place quicker than we were able to, to gather all of the information we needed.
From myself, my amazing husband and both of our families thank you so much for your interest in his story.
I love playing with old film cameras! It's a hobby of mine.
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