In November 2015 I was diagnosed with a rare, incurable primary bone cancer called Chordoma. This form of cancer arises out of the bone and can occur anywhere from the base of the skull to the base of the spine. My Chordoma is at the base of my skull and at the time of diagnosis was compromising my spinal cord (although I was not symptomatic) and had eroded vertebrae on the left side of my neck. Without surgery my tumour would've eventually broken through my spinal cord, resulting in paralysis.

When I was referred to the Neurology Department at St George's Hospital (SGH) I had no idea how rare Chordoma was, your chances of having it are 1 in a million. Nor did I realise how many patients often struggle to find surgeons and clinicians experienced enough to deal with this type of cancer. At present treatment options for Chordoma are limited to just surgery and proton beam radiation therapy. There is growing evidence to suggest that a first round of aggressive surgery leads to the best prognosis for many patients.

My Chordoma was an incidental finding and was at a stage where I needed emergency surgery to remove as much of the tumour as possible along with the insertion of metalwork to stabilise my neck. I have some tumour remaining which is yet to be operated on and it's likely my tumour will grow so further surgery at some point is a possibility. 

As a mother to small children (at the time of diagnosis they were 6 months, 6 and 8 years), knowing my tumour was compromising my spinal cord and that surgery would involve working in this area was overwhelmingly frightening. I was anxious how our family unit would function if I couldn't continue to care for my children in the same way and how my relationship with my children would change. The thought of all the experiences I'd miss out on directly sharing with them if I were paralysed was totally heartbreaking. The fear of what sort of quality of life I'd have if I was paralysed played on my mind a great deal. For me the risks of surgery were as hard to deal with as my Chordoma diagnosis, they felt like a huge hurdle to overcome before getting on and living with the disease.

Since having surgery I've discovered that a machine, known as an MEP,  was used throughout my nine hour operation. By monitoring the patients spinal cord and nerve roots the MEP alerts surgeons of any unseen injury to the spinal cord enabling them to respond accordingly. For me, this machine enabled my neurosurgeon, Matthew Crocker, to work within the very limits of safety, maximising tumour removal - resulting in an optimal surgical outcome.

The MEP machine is very clever, important kit I think you'll agree and it's used on a plethora of patients not just ones with spinal tumours. Unfortunately it's not yet standard equipment at SGH, however the Neuro Appeal which was launched last October is raising money so that one can be purchased along with a number of other pieces of equipment that are considered 'over and above' normal provision. All of this equipment  will enable the fabulous medics and nurses at the hospital help a wide variety of patients, both young and old.

My time spent on the Brodie Ward at SGH opened my eyes to a world I'd never experienced before. I was struck by many of the patients resilience, courage and optimism. I'm supporting and fundraising for the Neuro Appeal because if funded this equipment will change lives in a hugely positive way. 

These days I don't take my physical mobility for granted, every run I complete I'm grateful for. I'm looking forward to running The Malden Fortnight 5k Fun Run, which is supporting the Neuro Appeal, with many of my running buddies and friends. My goal is to get a 5k personal best on the day. 

Any donations whether big or small will be greatly appreciated and make a huge difference. Thank you!