One of the things I understand much better now than I did when Stu was diagnosed is that finding possible treatments is only one part of navigating cancer. You then have to work out whether they are relevant, find the right people, speak to different doctors, organise appointments, move scans and samples around, potentially arrange treatment in another country and somehow keep track of what everybody has said while your actual life is falling apart around you.

We did a huge amount of that ourselves. Or, more accurately, I did a huge amount of it with help from family, friends and the extraordinary collection of people we gradually found along the way. I became researcher, administrator, appointment coordinator, international logistics department and increasingly obsessive spreadsheet owner alongside being Stu's wife. ACT Above & Beyond exists to help carry some of that load.

It wasn't available when Stu was first diagnosed in 2021, although the people who went on to create it became part of our world during his treatment. Knowing what I know now, patient navigation is something I would bring in much, much earlier.

WHAT IS ACT ABOVE & BEYOND?

ACT Above & Beyond is an independent cancer navigation service for patients and families who want to explore options beyond standard care. It works alongside patients and their existing medical teams rather than replacing them, helping people understand what other treatment or trial options might exist, what could be relevant to their individual circumstances and what would actually be involved in accessing them.

That can mean researching potential treatments, helping to interpret and organise information, identifying specialists, building a wider clinical team, communicating with existing doctors and managing some of the considerable logistics involved when treatment is spread across different hospitals, clinics or even countries.

This is something I didn't really know existed when Stu was diagnosed. I understood the idea of getting a second opinion and I understood finding different doctors, but I didn't know there were people whose actual job could be helping us hold the whole bloody thing together.

THE PEOPLE BEHIND IT

ACT Above & Beyond grew from the experiences of people who already understood how difficult navigating cancer outside standard care could be. Dr Jack Kreindler and Marje Isabelle were already part of our world through ACT for Cancer, and Cordelia Taylor became one of the most important people I met during Stu's illness.

I've written more about how Cordelia helped us on the ACT for Cancer page. I was introduced to her by two mutual friends after Stu was diagnosed and she understood something very few people around me could possibly understand because she was living with stage IV brain cancer herself.

She had also been treated at CeGaT in Germany and was working for them at the time, so when we decided to pursue treatment there she helped me enormously. She knew the process, the people, the logistics and all the things you don't find by Googling furiously at two o'clock in the morning. More than that, she understood what it was actually like to live inside this world.

Cordelia went on to become ACT Above & Beyond's Lead Patient Navigator and Co-Founder, turning everything she had learnt through navigating her own brain cancer into something that could help other people. She died in 2024 and ACT Above & Beyond now describes her as its Forever Co-Founder.

My connection with ACT Above & Beyond could have gone in a very different direction. At one point Cordelia and Marje asked whether I would consider becoming a patient navigator myself. I would have loved to do it. By then I had spent so much time navigating Stu's treatment that I understood exactly why someone in the middle of all this might need another person beside them who could help make sense of it. But the timing wasn't right. I was doing IVF and trying to have the baby Stu and I had wanted, while also trying to work out what my own life looked like after he had died. There wasn't enough of me to give to something that important, however much I wanted to do it.

I think about it sometimes, particularly now. There is something quite extraordinary about the fact that Cordelia took everything brain cancer forced her to learn and turned it into a way of helping other people, and that she and Marje saw something in my experience of navigating Stu's illness that they thought could be useful too. That lived experience matters to me. There is a difference between someone understanding on paper that navigating complex cancer treatment is overwhelming and someone knowing what it feels like when this has actually landed in the middle of your life.

WHAT DOES A CANCER NAVIGATOR DO?

This is probably the bit I wish someone had explained to me in 2021. A cancer navigator doesn't make the treatment decisions for you and they aren't there to replace your oncologist. Their job is to help you understand the landscape, organise the information and work through the practical steps involved in exploring options.

ACT Above & Beyond currently offers clinically overseen consultations to look at someone's situation and potential treatment or trial options, as well as navigator coaching and more intensive navigation support where needed.

Depending on the level of support, that can include looking at clinical results and genomic information, identifying doctors or specialists with relevant expertise, helping people access trials or treatments, coordinating samples and logistics and helping communication between different clinical teams. Essentially, it is help with many of the things that consumed an extraordinary amount of my time while Stu was ill.

WORKING WITH YOUR EXISTING TEAM

Something I particularly like about the way ACT Above & Beyond describes its approach now is that it talks about working with, rather than against, someone's existing clinicians. Exploring treatment outside standard care can sometimes feel weirdly adversarial. We experienced some of that ourselves. You can very quickly feel as though asking about another treatment, doctor or clinical trial is somehow a criticism of the team already looking after you, when actually you're just terrified and trying to understand whether there is anything else you could be doing.

ACT Above & Beyond describes itself as independent and treatment agnostic. The aim isn't to send everybody towards the same clinic or treatment, but to help someone understand what options might be relevant to their particular situation and create better communication between the different people involved.

I think I would have found that incredibly useful.

THE COST OF NAVIGATION

ACT Above & Beyond is a paid consultancy rather than a charity, so there is a cost involved in using its individual navigation services. Its current services range from individual consultations and coaching calls to much more intensive ongoing navigation support.

I know that paying someone to help navigate treatment can feel like yet another enormous expense at a point when you may already be discovering that tests, consultations or treatments you want to explore will need to be privately funded. We certainly wouldn't have had an endless pot of money to throw at all of this. But I look at the cost slightly differently now. There is the financial cost, and then there is the cost of trying to do everything yourself.

For me that was hundreds of hours of reading, emailing, researching, organising, chasing and worrying that I had missed something. It was carrying an enormous amount of responsibility at a time when I was also trying to support the person I love through a terminal cancer diagnosis. If paying someone to carry some of that work had given even a fraction of those hours back to us, I think it would have been money incredibly well spent.

ACT ABOVE & BEYOND AND ACT FOR CANCER

ACT Above & Beyond works alongside its sister charity, ACT for Cancer. The simplest way I understand the distinction is that ACT for Cancer provides freely available information and research for patients and clinicians exploring treatments and trials outside standard care, while ACT Above & Beyond provides the individual, hands-on navigation service.

ACT Above & Beyond reinvests its profits into ACT for Cancer, helping support the free resources available through the charity, including the ACT Info Hub.

Depending on what someone needs, I would look at both. If you're researching and trying to understand what options exist, ACT for Cancer and the Info Hub are useful places to start. If you need someone to help you work through your individual situation and carry some of the research, coordination and logistics, that's where ACT Above & Beyond comes in.

2026 UPDATE

The difference between researching Stu's treatment in 2021 and doing the same thing now would be enormous. AI alone would have saved me hours. I could have used it to read papers, explain terminology, compare clinical trials, organise notes, prepare questions for doctors and keep track of an increasingly complicated treatment picture.

But I don't think that removes the need for people. If anything, AI makes it possible to uncover even more options, papers, clinics and potential treatments, which creates another version of the same problem. You still need to know whether the information is reliable, whether the evidence is any good, whether something is relevant to the individual cancer you're dealing with and how any of it fits alongside everything else that person is already doing.

I would absolutely use AI if we were doing this now. But I would use it alongside people who understood cancer, knew the treatment landscape and could help us make sense of what we found rather than believing I could outsource Stu's treatment plan to a chatbot.

HINDSIGHT

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

We were incredibly fortunate that we eventually connected with other patients, caregivers, doctors and people like Cordelia who helped us work out where to look and what to do next. But it took time. Time was the one thing we absolutely did not have the luxury of wasting.

After Stu's first medical team told us that there were no other treatment options available, even if we consulted with them privately, I felt an enormous responsibility to find out whether that was really true. Other members of our family helped with research, but none of us were medically trained and none of us had ever done this before. We were trying to learn an incredibly complicated subject while making decisions that felt as though they might determine how long Stu lived.

If we had to do it again, I would start working with a patient navigator much earlier. I would still want to understand what we were doing and I would still ask approximately eight million questions, because obviously I would, but I wouldn't feel that I had to personally find, research, organise and coordinate every possible avenue myself.

I can't know whether having that support earlier would have changed what happened to Stu. What I do know is that it could have changed some of what those months felt like. If someone else could have carried even part of the research and logistical load, perhaps I could have spent a little less time trying to save Stu and a little more time simply being with him.

Knowing that Cordelia took everything she had learnt from navigating her own brain cancer and turned it into exactly that kind of support for other families makes ACT Above & Beyond particularly special to me. The fact that she and Marje once thought I could do the same means it will probably always feel personal too.

CURRENT INFORMATION

ACT Above & Beyond continues to provide individual cancer coaching and navigation for patients and families exploring treatment and clinical trial options beyond standard care. Its services, availability and prices can change, so rather than reproducing them here I would check the ACT Above & Beyond website for the current information and decide what level of support, if any, feels useful to you. For free information and research about innovative, novel, repurposed and off-label treatments and trials, you can also explore ACT for Cancer and the ACT Info Hub.

Neither patient navigation nor the resources on these sites replace your oncology team. I would use them as additional people and tools around that team, helping you understand what might be out there, what questions to ask and how to navigate some of the enormous amount of work that can come with looking beyond standard care.

act above & beyond