One of the hardest things about a glioblastoma diagnosis is working out what else might exist beyond the treatment immediately being offered to you. We discovered very quickly that there were clinical trials, novel treatments, repurposed drugs, genomic testing and doctors doing interesting things all over the world, but finding them, understanding them and then working out whether any of them were actually relevant to Stu was another matter entirely.

By the time we found ACT for Cancer, I had already spent an extraordinary amount of time researching glioblastoma. I was reading papers, contacting doctors, looking at trials and trying to understand treatments that only a few months earlier I had never heard of. ACT connected us with people who understood that world and could help us navigate some of it, but it also brought people into our lives who became much more important to us than I could possibly have realised at the time.

The organisation has changed quite a lot since Stu was ill in 2021. Some of the things that were only being developed then now exist as proper resources, and the individual patient navigation work has evolved into ACT Above & Beyond. So this page is partly about what exists now, but it is also about the people who helped us when we desperately needed them.

OUR EXPERIENCE

We had a couple of consultations with Dr Jack Kreindler during Stu's treatment. He helped guide us through the complexities of finding treatments and clinical trials, pointed us towards treatments and doctors we hadn't heard of and reassured us about some of the choices we had already made.

That reassurance mattered more than I probably appreciated at the time. When you're making decisions outside the very clear path of standard treatment, there is a constant nagging question about whether you're doing the right thing. We weren't looking for somebody to tell us that everything we were doing would work, because nobody could do that. We needed people who understood the landscape well enough to help us ask better questions and work out what was actually worth exploring.

We gave ACT a donation after each consultation because the support we received at the time was provided through the charity. The way that support is delivered has changed since then, with the individual navigation side now sitting with ACT Above & Beyond, while ACT for Cancer focuses on making information about treatments and trials beyond standard care more widely accessible.

CORDELIA

Cordelia Taylor deserves her own section on this page because she helped us enormously. I was introduced to Cordelia by two mutual friends after Stu was diagnosed. I hadn't known her before then, but she understood something very few people around me could possibly understand because she was living with stage IV brain cancer herself.

Cordelia had also been treated at CeGaT in Germany and at the time was working for them, so when we decided to pursue treatment there she had an extraordinary amount of inside knowledge. She helped me understand the process, the logistics and what we needed to do to get Stu there and treated. When you're suddenly trying to organise cancer treatment in another country while simultaneously learning an entirely new medical language and trying not to completely lose your mind, having someone who had actually done it herself was invaluable.

But it wasn't only the practical stuff. Cordelia knew what this disease did to a person and to the people around them because she was living it. There are things you don't have to explain to someone who already knows. She continued to be incredibly kind to me after Stu died, as did Marje. I don't think either of them will ever really know how much that meant to me.

Cordelia went on to become a co-founder and Lead Patient Navigator at ACT Above & Beyond, using everything she had learnt through her own cancer to help other people navigate theirs. Very sadly, Cordelia died in 2024. ACT Above & Beyond now calls her its Forever Co-Founder.

I miss her very much. There is something so cruel about someone who had taken all the knowledge she had been forced to acquire through having brain cancer and turned it into something that helped so many other people then dying from the disease herself. But what she built is still here, and people she will never meet are still being helped because of what she knew, what she shared and how much she cared.

WHAT IS ACT FOR CANCER?

ACT for Cancer grew out of the experiences of patients, families and clinicians who had discovered just how difficult it could be to find and access treatment beyond standard care.

Baroness Tessa Jowell, her daughter Jess Mills and Dr Jack Kreindler were among its early co-founders. Tessa had been diagnosed with glioblastoma in 2017 and, before her death in 2018, became an incredibly powerful advocate for improving cancer treatment, research and access to innovative care. Her experience and the work Jess did alongside her became part of the foundations from which ACT developed.

Marje Isabelle has also been central to building ACT into the organisation it is now and is its Chair and Co-Founder, while Jack is President and Co-Founder. Today ACT for Cancer is a registered charity in England and Wales. Its focus is on helping patients and clinicians understand and navigate treatments and clinical trials outside standard care, including novel, off-label and repurposed treatments.

That distinction is important. Something existing outside standard care doesn't automatically make it better, and something having an interesting scientific rationale doesn't mean it will help an individual patient. What ACT is trying to do is make that incredibly complicated landscape easier to understand so patients and clinicians can have better informed conversations about what might actually be worth exploring.

THE ACT INFO HUB

One of the biggest differences between now and when Stu was ill is the ACT Info Hub. When I first wrote this page in 2021, the Hub was still being developed. It now exists as a free online resource bringing together information about treatments and trials outside standard care, including novel, repurposed and off-label approaches.

That would have been incredibly useful to me. One of the problems I had wasn't a shortage of information. Quite the opposite. Once I started looking, there was an absolutely overwhelming amount of it. The problem was trying to work out what was credible, what was relevant to glioblastoma, what was actually available to Stu and what was an interesting piece of science that had never made it anywhere near a human being.

ACT now has a team researching and developing information for the Hub and says its aim is to give patients and clinicians somewhere to explore these options and understand them better. There are also AI tools being developed as part of that work. If I were doing this now, I would absolutely use AI to help me search, understand terminology, compare information and formulate questions. I would also keep reminding myself that AI is exceptionally good at making something sound plausible. I would use it to help me interrogate the evidence, not to decide what treatment Stu should have.

ACT FOR CANCER AND ACT ABOVE & BEYOND

The easiest way I understand the two organisations now is that ACT for Cancer provides the freely available information and research, while ACT Above & Beyond provides individual cancer navigation and support.

ACT Above & Beyond was founded by Jack, Marje and Cordelia and works directly with patients and families who are trying to understand what options might exist beyond standard care. That can include researching potential treatments, helping build a wider clinical team, communicating with existing doctors and dealing with some of the considerable logistics involved in accessing treatment elsewhere. It is essentially a much more developed version of the kind of help we were beginning to receive when Stu was ill.

ACT Above & Beyond is an independent consultancy rather than a charity and reinvests profits into its sister charity, ACT for Cancer. It doesn't exist to direct somebody towards a particular treatment, but to help patients and families understand their options and make informed decisions alongside the people treating them. For anybody wanting that more individual support, I have written separately about ACT Above & Beyond and what patient navigation can look like.

2026 UPDATE

If Stu were diagnosed now, I would bring people who understood cancer navigation into our world much earlier. Not because I would hand responsibility for everything over to someone else, and certainly not because I would expect them to produce the magical treatment that everybody else had somehow missed. I would still research. Obviously I would still research. Anyone who knew me during those ten months is probably laughing at the idea that anything could have stopped me. But I wouldn't try to carry quite so much of it myself.

There are also tools now that didn't exist in the same way when Stu was ill. AI can make reading research, understanding medical terminology, comparing trials and organising information enormously quicker. Resources such as the ACT Info Hub can give people somewhere more structured to start looking rather than opening Google and disappearing down approximately 47,000 rabbit holes.

The difficult bit remains knowing what the evidence actually means and whether something is relevant to the individual person in front of you. That's where having people around you who understand the science, the system and the practical reality of accessing treatment can make such a difference.

HINDSIGHT

WHAT WE KNOW NOW THAT WE WISH WE'D KNOWN THEN

I wish we had scheduled more regular calls with Jack and had somebody helping us navigate from much earlier in Stu's diagnosis. At the time I think part of me believed that if I just researched hard enough, I could find and organise everything myself. To be fair, I became remarkably good at it, but it came at a cost.

I spent an enormous amount of time on my computer and phone researching. Some of that was necessary and some of it led us to people, treatments and information I am incredibly glad we found. But those hours were also hours I wasn't sitting with Stu, going for a walk with him, watching something ridiculous on television or just being his wife rather than the person trying to project-manage his cancer.

On the original version of this page I wrote that we might initially have been reluctant to pay for a patient navigator, but that the time it could have given back to us would have been worth every pound. Five years later, I feel that even more strongly. That was precious time and we don't get any of it back.

I also know that some of the people we found because of all that frantic research became incredibly important to us. Cordelia was one of them. So was Marje. I can't look back and neatly divide those ten months into things I wish I'd done and things I wish I hadn't, because one so often led to the other. I just wish I'd understood sooner that asking someone else to carry some of the load didn't mean I was doing any less for Stu. It might just have allowed me to spend a little more time being with him.

CURRENT INFORMATION

ACT for Cancer continues to provide free information about treatments and clinical trials outside standard care through its website and ACT Info Hub. It is a registered charity in England and Wales. For people who want individual help researching and navigating treatment options, ACT Above & Beyond provides one-to-one cancer navigation and support.

These resources don't replace somebody's oncology team and finding a treatment or trial outside standard care doesn't mean it will be appropriate for an individual patient. I would use them in exactly the way I wish I'd been able to use them with Stu: to understand what might be out there, get help carrying some of the enormous research and logistical burden and have better informed conversations with the people responsible for his care.

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