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. 

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:

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. 

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