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Robin Daly
Hi and welcome to the Yes to Life show. My name’s Robin Daly, regular host for the show and founder of Yes2Life, the UK’s integrative cancer care charity. So the Yes to Life show, like the charity, is all about integrative medicine, the judicious combining of conventional oncology treatments with a whole raft of complementary and lifestyle therapies with the aim of improving quality of life and outcomes. One of the features of integrative medicine is that, as a movement, he’s been primarily patient driven and this is now starting to spill over into the arena of research as well. Andrew Scarborough is someone with an extraordinary tale to tell of his own encounter with advanced brain cancer but also of his journey of discovery, finding out firstly how to manage his own situation but then spreading his net wider into the world of cancer science.

Andrew Scarborough
Thanks for having me. I really appreciate everything that Yes to Life does and I’m happy to share anything about my story.

Robin Daly
that’s great so I’ve been a lot too slow getting you on the show as yours is a long and outstanding story it’s made and I think it continues to make substantial waves in the field of cancer so why don’t we go right back I’d like to start off by asking you to tell us a bit about what your life looked like and what your plans were before you were diagnosed with cancer

Andrew Scarborough
Well, before I was diagnosed with cancer, I was working as a personal trainer and I was heavily involved in getting more into sport and exercise and sport and exercise sciences because that was my background. So I had a, I had a sciences background, but it was more into sport and exercise endeavors. And around that time, I thought I was extremely fit and healthy, health conscious, very interested in nutrition. I was on a pescatarian diet at the time. I thought this was like the best diet ever, but I was feeling more and more fatigued and suffering from migraine attacks all throughout 2012. And so that kind of rang alarm bells in my head from the symptoms that were coming from my head. I couldn’t make sense of it because I was trying to figure out what was wrong and taking time out of work, thinking I was maybe working too hard. And the headaches were just getting worse and worse. So I saw my GP and I saw my GP a few times at this time, just trying to work out what was going on. Never any thoughts that it could be something serious. So I was just sent away with medication to manage the headaches. And I decided to quit my job because it got so bad and I decided to take that, use that time to study masters in nutritional therapy, partly to try and work out if I could help myself and what was going on. A while through the course, I learned some interesting information about first, it was the paleo diet. That was quite a big thing at the time, 2012, and then I learned about ketogenic diets and how they could be used for the first time. I knew they could be used for epilepsy in drug resistant epilepsy in children, but at that time, I hadn’t ever heard that until at that point that you could also potentially use these diets to help manage cancer.

Robin Daly
So you found that out before you knew you had cancer then?

Andrew Scarborough
Yeah, I had a lecture on it, and it was seen as a very controversial lecture, which is funny. There was a big Daily Mail article about what the university was doing with that, not just that, but Chinese medicine and complimentary therapies. There was, yeah, there was a huge, it became a huge thing that the university was doing, this is the University of Westminster.

Andrew Scarborough
Yeah. And so yeah, I just, I actually dismissed it at the time. I thought, no, this is ridiculous. It’s a diet that just has lots of, uh, at the time I thought this diet just has loads of bacon and eggs and things, you know, it’s not that common LC.

Robin Daly
Yes, that was seen as the antithesis of the healthy diet in those days, wasn’t it?

Andrew Scarborough
Yeah, it was very high fat and lots of things like eggs, which, you know, high in cholesterol. And at that time I was, yeah, I was on a pescatarian diet, so it’s very plant-based and fish twice a week, oily fish twice a week. And if I did have things like eggs, it would mostly be egg whites, I wouldn’t really have the yolks. And I have lots of, just olive oil is my, olive oil is good, but yeah, just lots of olive oil with everything. And so I didn’t, I couldn’t find any solution to my issues and they were getting worse and worse as I was going further into the course. And I just decided to try and ignore it in the hope that it would get better. But over time, it got to the stage where it was impeding on my ability to exercise. I was very, very active, just naturally very competitive with my running times. And I was doing biathlons at the time, sorry, duathlons, sort of differently, because I didn’t like triathlons. So it was running and cycling and very competitive with it and very competitive with sports as well. So yeah, after a run in central London, I went on the train to go back home. And it was a really, I just remember, it was a really busy train. And I felt like I had the worst flu ever. My head felt like a medicine ball. And as I sat down on the train, I managed to get a seat somehow, because it was absolutely packed. This pain in my head just became more and more intense to the point where I knew that something horrible was about to happen. And I felt like that was going to be it. I felt like I was going to die on that train. And then all I remember is I lost control of all my kind of movements and my speech. So I was making strange yelping noises, uncontrollably. And I felt a huge kind of like an explosion in my head. It felt like someone hitting me over the side of the head as hard as they could with the hammer. And then I just went unconscious and woke up on the other side of the train on the floor very confused with muffled sounds of someone above me. And then I slipped out of consciousness again and ended up in hospital with a suspected diagnosis of an arteriovenous malformation, which is like an entanglement of abnormal arteries in the brain. And yeah, that can be fatal. So I was told just it’s I could I recall just a whole host of medical professionals surrounding me, very looking very interested, but very concerned. And just going in and out of consciousness and having grand malcedres. Right. Every time just before I’d go into one, I’d have an aura and I’d feel like I wasn’t going to wake up. So right. Just very, you know, just very confused and wake every time waking up with quite severe injuries, dislocated limbs, broken bones, bruises. So he said at that point, didn’t know what was going on, had lots of different diagnoses thrown at me. It kept changing because I did have a CT scan one night after entering the hospital. And it was so vascular that they couldn’t really determine what was there.

Andrew Scarborough
And so the plan was to wait until things cleared up a bit and then have an MRI scan to try and determine what they were looking at. And after the MRI, still wasn’t very clear so the diagnosis then was that it’s likely to be a cavernous hemangioma which is a cluster of abnormal blood vessels and to cut a long story short eventually my seizures were so severe and life-threatening that I had an emergency operation and I was on the maximum dose of anti-epileptic drugs I could be on as well as a lot of painkillers so I was really spaced out not really quite knowing what was going on and I had rehab in the hospital because I lost my speech and my right-sided movement was compromised so I eventually got home when I could walk a few steps and I was told this was coming up to the weekend I was told on a Friday evening that they’d made a mistake and the histopathology report showed that I had been, well the neurosurgeon told me on the phone it was a terminal brain cancer that was treatable but not curable and I didn’t really know what that meant.

Andrew Scarborough
And I was told I’ve booked an appointment for you to discuss chemotherapy and radiotherapy on Tuesday. And it just him admitting he made a mistake and also telling me that he alongside that that he had to leave some residual disease on the motor cortex or on the motor strip area in my brain because of that misdiagnosis. Otherwise, I may have had an awake craniotomy rather than a sleep one.

Andrew Scarborough
And so that was just, you know, in shock, couldn’t say anything.

Robin Daly
devastating stuff. So tell me, how long was the period from when you first started getting your symptoms to the time of the crisis?

Andrew Scarborough
Well, I had symptoms all throughout 2012 when they were getting worse and worse.

Andrew Scarborough
and at this point after the surgery while there was still disease left and there was significant brain damage from the brain hemorrhage that I’d had that revealed the underlying brain tumour

Robin Daly
So what was the actual diagnosis? What kind of cancer was it?

Andrew Scarborough
So the final diagnosis then was a nanoplastic esterocytoma brain tumor that had, um, it was IDH1 wild type, which is supposed to be the bad one. It was unmethylated MGMT. MGMT is a DNA repair protein. And if it’s unmethylated, then it’s, um, it’s indicative of being unresponsive to treatment and carrying a very poor prognosis.

Andrew Scarborough
So it wasn’t the king game. and I wasn’t looking good at all.

Robin Daly
So, okay, so you went in on Tuesday and to discuss the treatment they were proposing, which wasn’t going to cure you, but might do something for you. What were you offered and what did you think of it?

Andrew Scarborough
So I was offered the standard six and a half weeks of chemo and radiation and cycles of chemotherapy after that for six months and then seeing how that goes and then having another six months. Because I was the bad type, the unresponsive type, the idea is to give you treatment anyway because there’s no other option and not only that but to do it indefinitely. So to have the cycles of chemotherapy that keep going on.

Andrew Scarborough
and just seeing how that goes. So not, not a great alpha there. No, but yeah, at the time I just accepted it and I was thinking I’m, I was, I was accepting the diagnosis and that was going to die. And actually now the classification system has been updated. So that type of anaplastic esterocytoma that I had could have potentially been a grade up from that. So grade four, because they now characterize these subgroups of tumors differently, such that an IDH1 wild type and unmersulated MGMT anaplastic esterocytoma brain tumor could potentially be classified as a GBM because it behaves more aggressively.

Robin Daly
grown it. Okay and you know you said he wasn’t going to be able to hear you. What was the prognosis? How long did he think you were going to live?

Andrew Scarborough
well he was hesitant to say but I got it out of him because I like to know these things people don’t don’t always like to know but he said likely two to five years it’s quite a quite a range but

Robin Daly
quite a range, but quite generous too, or considering.

Andrew Scarborough
there was concern because the disease that was left was on the motor cortex area where my parietal lobe was covering, the initial tumour was covering three different lobes. And so I had three different types of epilepsy as well as the grand massages that I was suffering from and they were pretty relentless despite being on all that medication, but I had done some reading and I purposely put myself on sodium valperate, which is known as epilim, the brand name epilim. I did some reading about how that could potentially make the treatment more effective, could sensitise the tumour to the chemotherapy and the radiotherapy. And also I realised that it had some kind of effect on the gut microbiome and that gut brain connection because sodium valperate is its valperic acid, which is a short chain fatty acid. And these short chain fatty acids are active and they have an effect. And so it’s having that bi-directional effect on the gut and the brain. And so I thought this was, this is worth trying, you know, it’s an anti-c drug, you know, at the time I was mostly, I thought it’s not going to harm me and potentially it’s going to help with my epilepsy. And that was my main concern at the time, because I had, I was just having these seizures constantly.

Robin Daly
kind of life. Yeah okay so in the event how long did you have treatment for?

Andrew Scarborough
So I had treatment for a few weeks and then I decided to give up on the treatment when it was making my seizures worse. And I’d realised that my tumour would not be sensitive to it regarding what I’d learned about the histopathology. And I was learning all the time at this juncture, so I wasn’t as educated as I was going to be. And at this time as well, I was transitioning onto a very strict ketogenic diet to manage the epilepsy. And I was still thinking that it had no real validity for brain cancer because all we had was preclinical studies. And through when I learned about it at university, I learned that the idea was to starve the tumour of glucose. But then I learned about the work of Harry Eagle and how he found that glutamine was also a major fuel and I thought that’s not going to really be a solution. And so I was mainly focused on the epilepsy and I didn’t think it had any validity.

Robin Daly
So, two major kind of incidents in your life, one being lectured to about the ketogenic diet, and then actually starting for another reason. Fascinating.

Andrew Scarborough
And this was 2012, so we didn’t really, oh yeah, beginning of 2013 at this point. Right. And we didn’t really know, we don’t have, have been anywhere near as much as the information that we have now.

Robin Daly
I remember, yeah.

Andrew Scarborough
And I’d read through that lecture, actually, I’d read Tom Safewood’s book, Cancer as a Metabolic Disease. Fresh out of the press at that time. And yeah, it had only just come out the year before. So I found this absolutely fascinating and I decided to contact him, thinking he’s not going to respond. And he did. And it was a very thorough point by point reply to all of my questions that I had, because I had many questions at the time. And I was still highly skeptical. And so I just thought, well, I’ll just give this a try and see how it goes. I actually was initially on a four to one ketogenic diet because I knew that’s what the children with drug resistant epilepsy have. That’s what they go on and it works for them. But it actually failed spectacularly when I started. And I was thinking, why am my seizures actually getting worse? And then I read that as you transition, your seizures can get worse before they get better.

Robin Daly
I’m glad you found that out before you gave up.

Andrew Scarborough
So, uh, yeah, I was patient with it and that I, I had some side effects of having migraines and I thought, well, I can’t continue if I’m having these migraine attacks, which are just as bad as the seed is. And so through my research and through going on more of an elimination style ketogenic diet, I realized that there was a thing in the literature called an oligoantigenic ketogenic diet.

Andrew Scarborough
never heard of that. And so what that is is, well, oligoantigenic diets are, it’s a well-known kind of exclusion diet for epilepsy, which doesn’t necessarily have to be ketogenic, but it’s where you have certain foods that can trigger an allergic-like response where seizures are provoked. And so you eliminate those offending foods, and then that magically stops the seizures, regardless of if it’s ketogenic or not. So I found this really interesting because I’d noted through keeping a food and seizure diary that there were certain foods that were traditionally ketogenic that were triggering my seizures. And so I’d cut out dairy and I cut out even avocados and coconut oil because I noticed that those were strangely provoking my seizures. I cut out just most foods apart from eggs and organ meats and just mainly eggs and organ meats, actually, and then fish, already fish. I had lots of seafood, actually. I based it mainly on seafood. And I found that those seizures completely stopped.

Robin Daly
How long did that take?

Andrew Scarborough
Uh, just a few weeks.

Robin Daly
Amazing, you must have been very pleased with yourself.

Andrew Scarborough
Yeah, and at this time I was figuring a lot of things out. So I was monitoring my blood glucose and blood ketones routinely, and I discovered that there was this therapeutic zone that I could stay in that would give me optimal seizure control. And so I made it my mission to try and stay in this zone. And I’d also noted that when I’d slip out of that zone, say if I was, wasn’t necessarily food related, if I was stressed, if I had poor sleep, then that would cause me to have what’s called a breakthrough seizure.

Andrew Scarborough
where it’s just you have a trigger and suddenly you have a seizure out the blue. And so I realized at that point as well that my type of epilepsy was a type of epilepsy called reflex epilepsy, meaning that my seizures at this point were not spontaneous. I could identify known triggers that would cause these seizures, and if I stayed away from those triggers, and if I stayed in this therapeutic zone on my glucometer, that I could not have any seizures and it’ll almost completely normal. I’d say almost, because I still had a significant amount of brain damage.

Robin Daly
It’s a level of self-observation that few people will be up for. Obviously, it was a big prize, in your case, if you could actually get it right and it worked. I’m assuming that gave you the benefit.

Andrew Scarborough
And over time, interestingly, I was still having my MRI scans, and I’d noticed that the signaling activity that was shown on the scans was actually dissipating. And these scans can be fairly ambiguous, so you can only really speculate, but that could either be a sign of brain damage, or even migraineous activity can show up as enhancement on some scans, signs of epilepsy, epileptic activity. And so as a kind of test to see what was going on, I had a type of scan called MR spectroscopy, and very few places in the UK have that ability to have this machinery, but this type of MRI. What that does is it shows you various peaks and troughs that are representing the bioenergetics of the tumor area, and you can identify what type of tumor it is based on that, as well as look at what substrates it’s using for energy.

Andrew Scarborough
Yeah, it allowed me to understand that my tumour was highly glycolytic. And so that actually gave me more, more of a feeling that my, this approach and the intermittent fasting and all the other things I was doing, staking Boswellic acids as well, all these things that I was doing was having potentially having an effect. Now, I will say that I was taking the Boswellic acids in the form of Boswellia serrata and frankincense and also a frankincense resin. I was doing that because I’d read that these compounds inhibit an enzyme that’s involved in the arachidonic acid pathway. So inflammation, essentially, and that you could inhibit that process somewhat to combat that neuroinflammation that was causing my seizures and could potentially also reduce the brain swelling that I had initially and could potentially treat the cancer.

Robin Daly
And famously, one of the properties of the Boswellia is its ability to get to the brain, which a lot of things don’t, of course.

Andrew Scarborough
Yeah, I was taking high doses of the Boswellia serrata and the other Boswellic acids in different forms and very high dose magnesium as well at the same time.

Robin Daly
So for gauging that level of inflammation were you relying on these scans or did you have another wave?

Andrew Scarborough
Well, somewhat fortunate for me is that my type of epilepsy was extremely sensitive to any kind of change. So that became my barometer.

Andrew Scarborough
and the area that my residual disease was left in, I was told if that shows any growth you’ll know about it. So it’s not really, I was thinking it’s not really even necessary to have scans because I wouldn’t, if it grows back in the same area I would know about it because I would either, depending on which direction it grows in, it would either kill me because I would have a seizure and I would die or I’d have some type of paralysis or I would just experience more seizures so I would know about it. And so yeah I was having scans and they eventually improved and at one point I had hyperbaric oxygen therapy because I had significant scar tissue in that area and significant fatigue.

Robin Daly
The scar tissue is from the damage from the actual, when you had the initial fit on the train, or is it from the surgery?

Andrew Scarborough
It was a lot of things. It was the brain hemorrhage that I’d had That filled the tumor and then every seizure that I had caused further damage Because they were quite violent and then the surgery

Robin Daly
Right, okay, and here, hyperback option’s a great one for heating in that way, isn’t it?

Andrew Scarborough
Yeah, and at that same time I was taking exogenous ketones and ketone esters.

Robin Daly
Do you want to just explain what those are for people?

Andrew Scarborough
So we produce ketones endogenously from the liver, but there are exogenous meaning outside the body sources that you can take kind of like a supplement. So it by us is that needing to make your own ketones, you can take it as beta-hydroxybutyrate, which is the therapeutic ketone body that gets to the brain and that you can, has been shown therapeutically in rodent studies to have some kind of effect. And at this point I knew that the effects of a ketogenic diet and ketone bodies had different mechanisms of action. And it wasn’t just about starving the tumour of glucose and glutamine. It was about managing that neuroinflammation and also having these ketone bodies acting as signaling, kind of like signaling molecules. So they would have effects on several signaling pathways involved in angiogenesis and hypoxia and all of these other areas.

Robin Daly
So that information came from where your own observations some kind or from your

Andrew Scarborough
At this point, I was just reading constantly, so I was learning just everything that was new on PubMed, and I’d learned so many different things just from thinking outside the box as well about my symptoms and what that could mean. And so with the hyperbaric oxygen therapy, I was actually having seizures when I started and so that’s an example of how to overcome that I did research into what I could do to improve my seizure threshold in the chamber because the people operating the center didn’t want me to continue because it wasn’t safe. Scary for them. I convinced them that I’d learned of this technique that was used by the US Marines whereby to withstand deeper pressures in the chamber, allowing the oxygen to get to the tissues, they would increase the seizure threshold by kind of like with exercise, improving their resistance to the oxygen by taking off the mask. I was in a chamber with other people, so I was able to do that. So doing breathing exercises without the mask and then having sets and repetitions of breathing like you do with exercise, you exercise the muscle and it gets stronger. In this case, it’s allowing the alveoli to adjust to increasing amounts of, not necessarily amounts of oxygen, but it’s allowing that uptake under these deeper pressures more efficiently. It’s becoming a more efficient process. It’s called an air break technique and I learned about it just from my research.

Robin Daly
Yeah, high pressure workout.

Andrew Scarborough
Yeah, it worked incredibly well, and I was able to withstand very deep pressures, and I was able to continue for just over six weeks every day doing this.

Robin Daly
Well, that’s a solid block. So the centre then thing or two as well. Yeah, it’s always a bit mad.

Andrew Scarborough
initially but that was a bit weird.

Robin Daly
Yeah. Oh, good on you. Very good. So where are we? Give me a date where we are now in the story.

Andrew Scarborough
So that would have been 2015.

Robin Daly
fun okay it’s about three years in

Andrew Scarborough
Yeah. And at this point, I was coming off my medication, starting to come off my medication, which I was told would be impossible and a reckless thing to do. Right. Which would have been correct, but my quality of life was really poor. I’m the kind of person that suffers all of the rare side effects that are in the booklets. And so without any help, and with lots of reading, I learned about withdrawal seizures and how to manage those effectively so that I could come off of my medication completely. And I managed to do that in two years. So 2017, I came completely off those.

Robin Daly
Really old. Okay, have you taken any medications since then?

Andrew Scarborough
Well, I took melatonin, which I still take now, and I take it in cycles, so I do it for a few weeks and then I come off because I just feel like that’s a good way to do it.

Robin Daly
Yeah, it works with a lot of things, doesn’t it? Yeah. Amazing. So your health now, just describe your state of health now, what you can and can’t do.

Andrew Scarborough
Well, I still have some brain damage which will likely never improve completely because that’s the nature of the brain, it heals very slowly. But I’m able to manage that very effectively by sticking to a very strict diet. Interestingly, my tolerance to foods that used to trigger seizures has almost completely resolved, so I’m able to have a very different kind of ketogenic diet now to what I was doing previously. It doesn’t have to be a four-to-one ketogenic diet anymore. And yeah, but I still have great sensitivity to dairy, so I have to limit that. But when I do, I tend to have goat or sheep, high-fat goat or sheep dairy because I know that it’s supposedly less inflammatory and it’s a raw diet. So I’m very conscious of the gut microbiome and potentially how being on sodium valperate and taking the exogenous ketones may have changed my gut bacteria because I realize that a hydroxybutyrate has effects on the gut, which I still feel are underappreciated. And I still do a lot of fasting. Fasting has always been a big thing for me. But when I fast, I’m very mindful of my electrolytes because I tried doing a long fast when I was beginning doing this, and it triggered seizures because I was depleting myself of electrolytes. And when you do that, you’re more prone to having seizures. So I found that I could then in future go on these longer fasts, but having my own electrolyte drink that I would make up that had sodium potassium, sodium bicarb, magnesium sulfate, and I would just drink that. If I was feeling like I was hungry or if I was feeling like I was tired or like I was having a lower seizure threshold. And interestingly with the hunger, having that electrolyte drink really just completely obliterated that. Because that was my main issue when I started fasting, just I found it really difficult because I would just get hungry and now I barely get hungry at all.

Robin Daly
Interesting, so an enormous amount of self-observation going on, even to find out that you can go back on things, you have to try that presumably, and one at a time, all these things, it’s very painstaking stuff, but I think that characterises your whole journey, and you’ve done an incredible observation job here, which has actually, you’ve learnt a fantastic amount about yourself, but that’s also, some of it can be generalised to other people as well, so it’s a really useful information. Absolutely, yeah. Yeah, so look, before we run out of time, I want to talk about another strand of your life that incorporates the kind of trailblazer side of your character here, research, so you’ve got the attention of the community of people involved in the arena of brain tumors, that’s both patients and professionals, and you’ve got involved in some hugely interesting research initiatives, so do you want to tell us about those?

Andrew Scarborough
Yeah, well, after my diagnosis, I decided to enter the field of cancer research. So I studied cancer biology, and then I did various postgraduate courses in Imperial College and other institutions. And I got to the point where in 2015, I wanted to do a ketogenic diet study with the brain tumor research organizations. I won’t name them. And I was encountering great frustration since then, because I had lots of promises that never amounted to anything. And so this year, well, last year, I decided to do my own research and do it myself. And have it not just be a ketogenic diet study, but have it be a cancer brain tumor metabolism study, looking at not allowed to say too much about it, but establishing a metabolic phenotype of glioblastoma. By working with, we’re working with a brain tumor support charity called Brains Trust, who are enrolling patients for us who are newly diagnosed glioblastoma patients. And they come into the lab have various tests done. And then what we do is this is before they’ve had any treatment. And so we’re able to see, I won’t say what we’re looking at, but we’re able to see what’s going on metabolically. And we’re able to, from looking at the cohort of patients, establish certain patterns and see how we can target the metabolic dysregulation that we see. And so I’m doing that at the University of Westminster with a great friend of mine, he’s doing her PhD. I decided not to do a PhD, that was the route I was going to go down. But I thought it would be too much stress for me. And I didn’t want stress. So I get the best of both worlds. I still get to do the research. And I get to yeah, I get to I get to do the research and I don’t have to do a PhD.

Robin Daly
So, I mean, one of the obstacles to research is well known, of course, is the money. How have you managed to fund this?

Andrew Scarborough
Well, it’s a self-bundered study, so that helps. It also helps that I’m working with someone who has been a donor to the university, because you always need someone with lots of money. And I have some donors that will remain anonymous. They want to remain anonymous, who are very interested in helping us, so that’s been hugely beneficial. We always need more money, so…

Robin Daly
Sure, this is the metabolic community hanging together basically to make this happen.

Andrew Scarborough
yeah but yeah we always need more money so there i do have a page that people can donate to if they’re going to tell them about it

Robin Daly
in case anybody’s listening.

Andrew Scarborough
And it’s on, uh, beatbraincancer.co.uk. So if you, if you look there, you can see what the study involves and why we’re doing it and donate if you can.

Robin Daly
Great. Well, I love this stuff. This is what I’m now terming, patient-centered research. It’s my new term for this, which is, you know, patients going out to find out what they want to find out. And I mean, we’ve had the whole thing with patient-centered care where we had the old model where basically people had delivered the treatment they were told they were going to get and their job was just to be passive recipients. And there’s been a move for about 30 or 40 years to just move that over a little bit so the patient’s got something to do with it. It’s not succeeding very well yet, but hopefully we will get there one day where the patient will be at the center of care, which does happen, of course, in integrative medicine. But anyway, patient-centered research. I think the same kind of thing applies, basically. There’s huge wealth of research going on, but most of the answers are not that interesting to people who’ve got cancer. But there’s some that are doing it for themselves. And the advent of the internet has been extraordinary for allowing people to inform each other directly without anybody getting in between. And for the people like you to access all this information for yourself, to work out your own situation, and to learn from it. And to me, the race of learning that’s going on amongst people like you is much, much greater than is happening in all the rest of cancer research because they’re looking for answers that are really meaningful.

Andrew Scarborough
The other thing that will be revealed from this research, well, that’s the hope at least, is that oncologists will be able to hopefully look at markers in the blood that they can then say, okay, this is a marker of disease progression, or this could be, we can work with this to come up with a protocol that can support this patient, that we understand what it means. And we have data to show that we can target this. It’s something that we can think about therapeutically. And as you say, we have so many of these patient anecdotes, so many of these N of ones, these case studies. We need to bring all these people together and we need to try and have some research like this so that we can then show to clinicians to make some meaningful impact. So it’s not just stories like mine, you know? That’s all I wanted to get into the research.

Robin Daly
Absolutely, right. It’s great. It’s really good. But I think you know your case in itself because you’ve been so thorough in what you’ve done you’ve actually produced a lot of information from it, which is Okay, it probably hasn’t made a massive impression out there in the world of cancer research but through the mechanism of direct communication A vast number of people have been inspired to learn. Oh, I don’t necessarily have to die from this type of cancer There’s somebody over there who’s still alive and they’re looking good That’s amazing. You know that we we didn’t have that in the past all these things happened in isolation And the rest of the world never heard about it. So it’s a great thing Yeah Anyway, I hope you see yourself as a bit of a revolutionary. Um, I mean, you know It’s a big change that for going from uh, an ugly death very predictably to the prospect of possibly living well is night and day And a huge message of hope every 10 years now I know it’s amazing. It’s fantastic. And uh, Yeah, i’ve been fascinated by your progress all the while because of course I was aware of you right at the beginning when you were first Turning up at events and things. So that was pretty early on on to 2012 All right, so we’re just about out of time quick final question looking back what of anything would you’ve done differently knowing what you know now?

Andrew Scarborough
Sounds a bit controversial, but I don’t think I would have had any of the treatment. And I’m not saying I’m against the treatment because possibly being on the sodium valperate helped to maybe sensitize the tumor to the treatment that I had. But I guess we’ll never know.

Robin Daly
That’s it. That’s one of the things you just don’t know. Anyway, all right, interesting. Okay, well, look, a big thank you for coming on. Brilliant story. Really great to hear it and, and very best with your research. Thank you.

Andrew Scarborough
Thank you very much. I appreciate it.

Robin Daly
What a great story. You can have nothing but admiration for someone who forges such an independent path against the odds and who is now turning his hand to helping others. And if you want to check out his research project, the address again is beatbraincancer.co.uk Thanks very much for listening today. I look forward to bringing you another expert guest in next week’s Yes To Life show.