News and events

06/04/17

Emma Holloway and "Team Chordoma" raises some £9,000 for Chordoma UK in Hampton Court 1/2 marathon. -19th March 2017

  Here is Emma's story..

Last November I was diagnosed with Chordoma, a very rare (1 in a million) primary bone cancer that grows out of the spine and skull. My daughter was just six months old and my boys were six and eight. Being told I had an incurable cancer was totally devastating. The initial fear of not being around to look after my children and them having very little memory of me was overwhelmingly sad. 

In some ways I've been very lucky as my tumour was a purely incidental finding. Had I not been a total hypochondriac, raiding the bank of Mum and Dad to pay for a MRI scan, it would've gone unnoticed. The tumour had compromised my spine to such an extent my spinal cord was bending and if left it would of resulted in paralysis. After nine long hours of surgery my fantastic neurosurgeon and his team managed to ensure that, at present, my spinal cord is no longer compromised and a lot of the tumour has been removed.

The tumour eroded vertebrae on the left side of my neck so I now have a great deal of metalwork, leading to very limited movement. Surgery didn't remove all of my tumour, I still have some near to my brain so for now it's a watch and wait game with regular MRI scans. The best case scenario is that my tumour can be controlled and managed and remains stable for some time. At some point in the future I will certainly need further surgery and proton beam radiation therapy.

Walking around knowing there is still some tumour left in my neck and the likelihood that it will grow back does sometimes feel like a heavy burden to live with, there is a constant hum of anxiety. I know I'm not dying but the fear of the tumour growing in a way that compromises my faculties is unnerving. As a family we're slowly learning to accept what has happened and try not to play the 'what if' game too often. We're also trying to appreciate and see the positives and live in the now. I see one of those positives as still being able to run.

In April 2016, Team Chordoma (as we have now become) were, in the main, non runners. This team has come together in an extraordinary way and I've been truly touched and overwhelmed by their commitment to training for this event; overcoming the dark evenings training with headlights and torches, waking up at the crack of dawn to fit in a 'bootcamp' all this done before the school run, before work and at times, before both. Every single one of them totally rocks. What they probably don't realise is how much they've saved my sanity over the last six months. 

I decided to enter the Hampton Court Half Marathon because I want to raise awareness for this form of cancer. Together as a team we'll be running for the Chordoma charity. Chordoma is rare, therefore it gets little awareness and low funding. Chordoma UK is a fantastic charity and with our help they can use any donations to fund vital research. Through recent fundraising Chordoma UK has just been able to employ two researchers at UCL who work solely on understanding this rare type of cancer and also researching possible new treatments and a cure. This is great progress as at present options for treating Chordoma are limited to just surgery and proton beam therapy.

One of the huge positives I've taken from my diagnosis is the overwhelming support I've received from truly wonderful friends and my local community. The running is part of the journey - and it's an important part. I'm training with just as much determination as I have towards not letting Chordoma rule my life. I'm not going to say the training is easy. There are mornings when my 16 month old daughter has been up most the night, I'm exhausted and the last thing I want to do is drag myself to the park. I'm running to raise money in the hope that one day when someone just like me faces a Chordoma diagnosis they won't be told it's incurable. They'll be given options.

It would mean so much if you could spare some dosh, a little or a lot, it's all greatly appreciated. Thank you!


Archive

“Hoping to keep well and carry on with life as long as possible and enjoy the grandkids.”

Read Mrs S' story

“I feel like I'm learning to walk all over again...”

Read Mr P' story

Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

Donate now

Join our Mailing List

Please sign up to follow our ongoing story and events.

How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Find out more

Get in touch

If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

Contact us

Community

We all support each other

To share experiences, ask questions or vent your emotions and find others who understand.

Join us here