Friday 23 September 2022

A fresh new start and brain tumour monitoring update

I'm considering something radical, or at least that's what the brain tumour community might lead you to believe. 

I am overdue an annual scan to monitor the area where my tumour was, but the issue is that I actually feel really good! So what does this mean? Well, I was thinking about the risks and benefits of actually being monitored less frequently. You may assume that there wouldn't be any risks of me having an MRI, especially as I don't have contrast and that the procedure does not emit ionising radiation, however the risks I am referring to are not immediately in the forefront of people's awareness. 

These risks involve the impact on others who desperately need scans and also the fact that, while any risk with MRI is very small, it does have SOME effect on the body being under such strong magnetic fields. I don't think we really know how this really is affecting the body apart from the seldom occurrences where people have burns etc. or leave metals on them. It is likely that it isn't really an issue at all and I'm just nit picking, but the risk to other people needing to have monitoring in more serious cases is something I think about a lot, especially with the massive pressure on NHS services. 

When you have the opportunity to have an MRI scan now it's like receiving a golden ticket. This reflects a sorry state of affairs for this country, where we lie close to the bottom of cancer care and mortality tables in comparison to the rest of Europe even though we spend the most. There are just too many people for this small island and the vast sums of money the NHS receives is spent and managed very poorly. That's my 2 pence on the issue, others will have different opinions I'm sure. I think we can all agree however, that it makes sense for me to be selfless in the priveleged position I find myself in where I believe the risk to me not having a scan this year is likely to be low. 

In other news, I'm really excited about making progress with the brain tumour study and with my writing projects. I'm currently receiving support to publish my work and I'm sure there will be many interesting conversations around that. I have a lot to learn about professional writing, even though I already have some valuable experience in this area. 

Tuesday 2 August 2022

Every birthday is a privilege

In a month’s time it will be my birthday. Following an incurable cancer diagnosis every birthday is a real privelege. 

Many are not as fortunate as I am.

I’m determined to improve outcomes. The best gift for me to make progress would be to receive more donations for the cancer metabolism study. 

Click here to contribute

Since everybody has their own story, good and bad, I would like to accompany a picture or personal message of your choice with each donation. These will be featured on a dedicated page on the website. It is important because this study isn’t about me, it’s about everyone who has been affected by the disease. You can send me a message with what you would like to include after we have received your donation.

PS. If you have already made a donation and would like to display a message or photo that means something to you, please let me know. Thank you.

Here is mine, coming up to my 10 year Cancerversary:

Saturday 2 July 2022

New beginnings and being bold

I am excited to announce that we are reaching the next step in our efforts to raise funds for the brain cancer metabolism study.  

We have a new website complete with information about study, how you can donate if interested and why this work is necessary.

Coming up we have several meetings, podcast interviews and events to build momentum, reaching a larger audience. This isn't the only way we are generating funds, but it is important for a number of reasons.

I believe what we are doing here is truly unique, and our efforts will pave the way for future investigation on metabolic interventions to this notoriously difficult to treat disease.  

The website can be found here.

I don't want to go into too much detail about the next steps yet, but we are well on track with everything we had planned to do by this stage. The future looks promising. 

The next couple of weeks will be particularly revealing. I look forward to sharing news on our progress by the end of the month. Until then I will have to talk in riddles, which isn't really what I like to do at all, but is sometimes necessary. 

In other news, which isn't unrelated - Towards the tail end of last month I was able to do some valuable networking at the annual British Neuro-Oncology Society conference (BNOS) in Liverpool. I've been to these conferences before and always found great value in them. I have the ability to keep up to date with the latest research, clinical trials and discuss the clinical management of these tumours in a more practical sense. 

There were a number of highlights, but the main highlight for me was finally meeting Dave Bolton in person, a long term survival of glioblastoma, who gave an exceptional talk on his journey. 

We don't usually get the patient perspective much at these conferences, however there was truly meaningful input from patients who are directly shaping how we improve care, as well as directing the course of emerging treatments to improve outcomes. 

This is a big month for me in general. I'm preparing to move back to London in August after over 3 years away and I'm working on a number of projects. I am making myself accountable by aiming to finish by October/November time. An important lesson I have learned over the years is to be more relaxed about things not necessarily going to plan. Being adaptable and taking time to look after myself, while continuing to move forward by achieving small, manageable goals yields the greatest rewards. 

In moving from Oxford I will be leaving an area that I love and a comfortable, secure work situation for something more unpredictable and frantic, but infinitely more exciting and rewarding. The work I have been doing here was perfect for that time in my life, but it's time to move on and progress in my career. It is the only way I will be able to have the influence I need to make an impact on a larger scale to help the most people.  

There is so much to look forward to over the next few weeks and months. Although it seems fairly daunting when I stop and think about it, this is what I have been waiting for over many years. It's finally time to grab these opportunities with both hands. 

Wednesday 8 June 2022

Important update

Brain cancer is a terrifying diagnosis. In early 2013, at the age of 27, I received this news and I, like tragically so many others, faced that initial mixture of shock and despair. 

Thankfully, that’s really where the story begins rather than ends. After the initial reaction, I sought to learn as much as I could about this disease, this enemy at the gate. I wanted to empower myself to find a way of getting my life back, and thankfully I managed to do just that. 

Life has changed now, but in a great way because I now get to give hope to others and to use what I have learnt to help those facing that same devastating battle. I have become passionate about improving outcomes of this life changing disease and pushing forward our understanding of the biological mechanisms and dependencies, so as to enable many more success stories. 

It has been a long journey harnessing the metabolic interventions that have had a profound effect on my life. There is still much science that remains unknown and for patients it can feel overwhelming to try and make sense of it all. This is why I am so eager to push the scientific understanding forward in the hope that those facing this disease in future can do so with greater confidence. 

It is with this goal in mind, that myself and my good friend Isabella Cooper are planning to begin establishing a baseline metabolic phenotype of brain cancer, which will be the starting point on this journey. 

Our primary aim is to observe the bioenergetics through the course of disease, providing further research into interventions that target the fundamental metabolism of brain cancer. 

To achieve this, we need to initially raise £20,000 to begin the research. 

If you would like to help fund this work, please follow the link below and donate whatever you can spare. Thank you in advance.

Click here to donate

Monday 29 March 2021

Continuing to move forward despite pandemic related obstacles and life challenges

I haven’t written a post here in a long time… mainly because so much has happened in my life and more recently so much has been happening in the world. What a wild ride it has been with events we could have never anticipated even in the more recent past (and the reactions to them). 

I have experienced love, loss and then love again- with many other events and the rollercoaster of emotions I continue to experience along the way. This is life, there will always be bad though conversely there is always some good to be found in that. Cliches can be irritating but they are often true.

There is certainly a lot to reflect on and I’m a very retrospective person. I try not to dwell on these things, but I consider how I can become a better person mentally, physically and emotionally. I have always believed that resilience is like a muscle that we can train to become stronger. 

There have been huge challenges in our lives and I am not unique in that. My aim as always is to grow in response to adversity, allowing me to become stronger and more resilient when such events inevitably pop up in the future.

In this time I have been very reflective on my life and the direction I want to take with my future. In the meantime while I’ve been trying to work that out I started a podcast series ‘The Human Guinea Pig Project’, in which I discuss emerging treatments and novel methods of treating disease and neurological conditions. There are other projects I have been working on and goals I hope to achieve. Despite the obstacles I encountered with some of these aspirations I am still confident about getting to where I would like to be with my career and will try harder to not beat myself up so much about it- which admittadly I can be very guilty of doing this. 

I am proud of the podcast series so far because I try to answer questions I have and to offer quality information from experts on the subject and individuals which interesting stories to share that will always be evidence based and without bias. The aim is to help others and I am pleased with the feedback so far, especially considering that I am a natural introvert and maybe I don’t advertise it as much as I could or should. 

I aim to update this blog more now and I am optimistic about my upcoming projects and future endeavours. 

The podcast series is available on Apple Podcasts and Youtube. It can be found here:

And on my Youtube channel if you search for my name. The latest episode which will be up soon focuses on the Care Oncology Clinic and repurposed drugs.

As a final note for this post I would like to thank everyone who has supported me over the years and I hope you have found all the information I have shared useful. I wish you all good health for the future. This has been a challenging time for us all. Stay strong.

Tuesday 23 July 2019

Current engagements and future projects

I detailed on my Youtube channel what engagements I have been involved with recently and what direction my research will be heading to.

In the video I mention training I am undertaking to learn more about specific laboratory equipment I will be using for some ketogenic focused research related to brain cancer. I also give a brief overview on a few speaking engagements I have been involved in recently, including a visit to parliament with Brain Tumour Research to discuss my personal experiences with ketogenic therapies.

Additionally, there was a press release about the APPG in parliament by Bracknell News, my local newspaper. The link can be found here:

It is always a pleasure to share awareness of the potential of these metabolic therapies, particularly as we continue to learn more about their applications and effects. I am excited about furthering my own research in this area to expand on previous research involving high grade gliomas. It is encouraging to see that there will be a clinical trial for both high and low grade gliomas beginning in January 2020 to investigate the therapeutic efficacy of a calorie restricted ketogenic diet on brain tumour patients. I hope to be involved in some way as I have been in contact with the investigators of this trial for a number of years now.

Wednesday 8 May 2019

Light and Shade, love and loss

So much time has passed and so much has happened since my last blog entry.

I've had so much to say in that time, but every time I thought about putting my thoughts into words something just didn't feel right. I have also suffered from a crisis in confidence lately and been questioning myself in many aspects of my life. To say I have encountered challenging times over the past few months has been an understatement, but I'm determined to work my way through it and out the other side.

In terms of my own health, and my latest scan results, they have been exceptional and better than I could have ever imagined. I have now reached the 6 year mark in my journey attempting to out-think this cancer and prevent recurrence. The aim is to die of 'natural causes', after a long life of love, happiness, and countless wonderful memories. That would be incredible to me.

I feel fortunate, and whatever I have been doing could certainly be helping. I say could, because I wonder if we can ever be able to pin any of these aspects down as being definitively useful beyond doubt. What I will say, however, is that symptomatically there is no doubt whatsoever that certain aspects of my approach are making a huge difference.

As I have stated many times before, I have reflex epilepsy as a result of the haemorrhage I suffered from 6 years ago that led to the discovery of my highly vascular malignant brain tumour. Over the years I have been treating this with successfully without medication by applying a therapeutic and balanced omega 3:6 ratio ketogenic diet, magnesium supplementation and crucially supplementation with boswellic acids (in different forms). I say crucially, because initially I understood that for brain cancer boswellic acids, particularly boswellia serrata, can be steroid sparing, even when patients have radiotherapy to the brain. (1) I find that boswellic acids help to increase my seizure threshold considerably if I use them strategically at the right times and at the right amounts. There is a rhythmicity to these symptoms in line with circadian biology and I have noted that meticulously over the years along with a food, mood, sleep and triggers diary.

I have experienced a tremendous loss lately as my Mother passed away from a recurrence of her cancer. It was obviously difficult to take for a number of deep, personal reasons, but also left somewhat of a bitter taste due to the fact there was negligence from medical professionals which contributed significantly to her poor prognosis. If you try to treat any cancer patient at such a late stage it will always be a steep, uphill battle and you have to target multiple fuels and signalling pathways to treat the disease if you are targeting defects in cancer metabolism. We opted to try deuterium depletion strategies, and in retrospect this was a mistake, but the standard of care offered no efficacy at this late stage and this seemed like an interesting option, despite the lack of human data.

The lack of human data for these deuterium depletion strategies is a huge problem though and I recognise that more as I reflect on all my experiences and my research into deuterium depleted water. I was left with so many more questions than answers from our experiences and reading all the n=1 case studies available to me. I was left uninspired and as we progressed there were more and more unanswered questions. We were both experimenting with the water over those few months, but there were so many confounding variables that it would have been impossible to determine what benefit, if any, we were receiving. I had also wondered about the validity and reliable of the tests to measure this (they aren't really independent) and also the fact that it isn't really natural to artificially deplete water of deuterium in the laboratory for us to drink.

Another thing is that I see red flags about anything when people promoting it suggest that its a cure all for everything and that the answer to cancer management could be 'so simple'. You see this a lot in the 'alternative' cancer world, and I get more frustrated and annoyed every time I see anything being expressed this way. It certainly isn't simple, it never is. Everyone I know who has performed the deuterium test for the first time comes out with a very high reading. Why is this? Even if they regularly fast, exercise, get out in the sun, and eat a ketogenic diet it is still high on the first reading. Initial tests after drinking the water suggested that my Mum was effectively depleting levels of deuterium but her cancer was rapidly progressing. Why would this be? Every case I read about in Gabor's book on the subject had patients who succumbed to the disease in the fashion you would expect and you couldn't even claim definitively if the water even slowed down progression of the disease. The theory is sound, and appears to make so much sense, but sometimes you have to ask more questions because mechanisms don't always equal actions. This is the unpalatable truth.

Also notable, was that I had high levels of deuterium in my body according to my test results but I felt better than I had in a long time and my scan results were very good, even some of the scar tissue was beginning to heal, albeit at a very slow rate. This is better than nothing as this was definitely not normal or expected.

There may be something in the deuterium theory of cancer but even then I ask.... is lowering deuterium in the body enough on its own? Also, if drinking the water, its expensive and takes a long time to get to the actual therapeutic doses (weeks and months!), which can be frustrating if you have a disease where you don't actually have much time. If it was as miraculous as it sounds on its own, after all these years we would have heard more about it from doctors, patients, and there would have been clinical trials rather than a small collection of case studies. Some will say it could be because a big pharmaceutical company can't make money out of it, or there are no incentives in terms of profits for medical organisations, or there's no money in anything that could potentially cure disease, but then think about those statements and look on Pubmed and there are countless articles on turmeric, metformin, etc., which have many documented studies with mechanisms of action for some of the most formidable diseases known to man.

The science sounds fantastic and makes perfect sense, but what makes sense doesn't always translate so well to the patient and isn't always so simple. I have also seen supplements and repurposed drugs be incredibly effective for stage 4 cancer and even broccoli sprouts, which some might say to avoid (theoretically) because they are high in deuterium. The high sulforaphane content however, suggests that it would be very wise to include broccoli sprouts in the diet.

What are we to believe? We are still learning about this, and how best to exploit it, so many people think they have 'the answer', but while the deuterium gang think it ties everything in as 'the BIG answer' to everything, maybe in actuality it simply represents another cog rather than the master controller for optimal health. We are still learning and the researchers still need to collect a lot more data from patients to make any of the claims that ae often suggested.

I don't doubt that deuterium plays a significant role in disease progression in some fashion, but I feel we still have a lot more to learn about this. I haven't completely made my mind up yet, even though it may sound like I have. I am open to changing my mind about anything if I have enough evidence to support that view and it is convincing enough. There are claims made, even in scientific papers on deuterium depleted water, that are not supported with the data from which those claims can be made.- for example, in this paper a claim is made that 'Deuterium depleted water delays tumour progression in mice, dogs, cats and humans.', but although I can find a lot of fascinating and compelling evidence of biophysiochemical mechanisms to support the theory,  the clinical trials and in vivo observations aren't as compelling as I had initially thought when I first read them. As I say, I think there is definitely something in it, but we need to dig a lot deeper to understand how we can best take advantage of its effect and we need to somehow remove all confounding variables.

1. Kirste, S., Treier, M., Wehrle, S. J., Becker, G., Abdel‐Tawab, M., Gerbeth, K., ... & Momm, F. (2011). Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors: A prospective, randomized, placebo‐controlled, double‐blind pilot trial. Cancer117(16), 3788-3795.