Short Story

In May 2022, aged 31, I was diagnosed with an incurable Grade IV Astrocytoma Tumour (A type of Brain Cancer). Following diagnosis, I have been treated through an awake craniotomy, radiotherapy and chemotherapy - with chemo finishing up in July 2023.

Following these treatments, the remainder of the tumour is currently 'stable', and I am now undertaking quarterly MRIs / reviews to monitor the tumour. However, as I mentioned, this tumour is incurable and based on existing data, it is highly likely that I will have to pursue further treatment in the next few years.

Based on current data, brain tumours kill more children and adults aged under 40 than any other cancer. For those diagnosed with a Grade IV Astrocytoma, only 5% of those diagnosed will live more than 5yrs - that's a 20/1 chance I will make it to 37. 

I would like to shorten those odds!

I am hoping to raise funds for Brain Tumour Research, to support research to find cures for all brain tumours, not just mine. In April 2024, I will be taking on the London Marathon (subject to health) and I would be incredibly grateful for any donation that you can make, with all donations going to Brain Tumour Research.

Thank you!

Long Story 

After a six week period of getting daily pins and needles down the right hand side of my body, I stopped trying to self diagnose and took myself to a GP.  With the unusual symptoms I was experiencing, I was referred first to the cardiology department. All ok on that front, so next stop was neurology. 

Following an initial, inconclusive neurological assessment - I was put forward for an MRI. Assuming everything would be fine and it being a week day, I went along to this on my own. After the scan, I was immediately called in to see my neurologist, who explained to me in detail what was happening. It was a lot of information to take in, and would be information that would normally be received with the support of a partner / family member / friend. However, given the seriousness of the tumour, my neurologist decided to act immediately and prescribed my medication to take in order to get ready for urgent surgery. I am hugely grateful for this no nonsense approach, as this type of tumour grows so fast.

I required a few more scans pre-surgery, and on the 16th July it was lights out. I was lucky to have one of the best (I'd say THE best) neurosurgeons in the country carve out part of my skull and then get to work on my tumour. Given the proximity of the tumour’s location to my speech and memory centres, an important factor for the surgery
was that I was awake for part it. So after about six hours of surgery, I was woken up. With part of my skull resting in a nearby petri dish, my surgeon continued to poke around my brain with my speech and language therapist engaging me in conversation to map out my speech centres. An exhausting process but worth the energy, with the surgeon removing most of the higher grade parts of the tumour and around 50% of the lower grade.

The quality of the treatment and care at Charing Cross Hospital pre, during and post surgery was wonderful. Daily sticky toffee pudding was the perfect fuel for recovery. Thank you.

The surgery was like crossing the start line  of a marathon. A rush of excitement followed by grinding out a gruelling 26 miles.

Following four weeks of recovery from surgery I was lined up for my first day of radiotherapy and the spooky face mask. This commenced a 6.5 week programme of radiotherapy Monday to Friday, combined with a daily dose of chemotherapy. I found this the toughest part of the treatment, energy being zapped daily and the side effects creating the underrated ‘carrot top’ hairstyle. I was relieved when I got to the end of this and a huge thank you to friends, family and Kirsty for lifts to hospital and for feeding me. 

Four weeks after I finished radiotherapy I was lined up for a 6x6 week programme of chemotherapy. Temozolomide (TMZ) for 5 days and 1 day of Lomustine (mustard gas). The anti-nausea tablets were essential for me to deal with this. Not only preventing sickness, but also allow me to continue with recovery from radiotherapy. Thank you to my brilliant Oncologist and the support team at Charing Cross.

As I write this, I have completed the ‘traditional’ treatment and I’m now on to quarterly MRIs to keep an eye on any aggressive growth. Given the incurable status, I am keen to support Brain Tumour Research to help support the research into ways of curing this cancer - not solely for my benefit, but for the many others who may have to fight this battle. 

So, to hopefully raise some funds, I will be taking on the London Marathon in April 2024. I would be incredibly grateful for any donation that you can make, with all donations going to Brain Tumour Research to invest in finding a cure for all brain tumours. 

Finally, the level of support I’ve had from Kirsty and my family is incredible, and from a number of close friends. I’ve also had messages from people I haven’t spoken to in years and it has been lovely to reconnect. Finally, I’m really grateful to the partners and my colleagues at Related Argent who have been hugely supportive throughout this process and removed any pressure on me to take on more work than I can cope with. 

All this has made it much easier to get through treatment, push myself back toward a normal life and to stay positive! X