Chronic Mum Club – Chordoma – My Dream, to Walk Again.

Guest post by Katie sharing her experience of Chordoma.

Hey there! My name is Katie Edwards. I am a mother to three beautiful children. Charley, Hunter and Matilda (hence my username). I am 23 years old, married and I work from home. It’s so important for me to have quality time with my family and earn money because when life is put into perspective, you realise life is so god damn precious.  I have a rare bone cancer called Chordoma and it affects just 1 in a million people. It usually affects the spine, meaning it can grow anywhere along it. Sadly, mine is at the top of my spine and therefore has grown up into the base of my skull, resulting in a brain tumour.

After giving birth to my daughter Matilda in May 2016, I started getting symptoms that gradually got worse over time. My family became worried, but I just soldiered on at home with the children and my husband. I was getting headaches, dizziness, right side numbness, sickness and balance problems. My speech also sounded nasal like, I struggled to keep my breathing normal and my eyesight was also affected. These symptoms came over time, so I actually got used to it and it just became normal day to day life for me. In November my mum told me she was taking me to A&E because I couldn’t walk. I looked like a drunken mess as I was so unbalanced and fragile. I’d lost so much weight, it was worrying. I was admitted to hospital straight away.
After having MRI’s and CT scans, the results showed that I have an extensive tumour compressing my brain stem, causing all of the symptoms. It also came to light that my head wasn’t being supported because the tumour had eroded two vertebrae in my spine. HOW FLAMING SCARY. I had two biopsies, which I waited ages for the results. It came back that it was Chordoma, which had presented itself as a brain tumour in my case. I spent 5 long months in the Queen Elizabeth Hospital in Birmingham, had 3 extensive, dangerous brain surgeries, reconstruction surgery on my neck vertebrae and I had to learn to walk again.
n some ways, I count myself as lucky. It doesn’t usually affect my day to day life, considering I have bone cancer of the skull. I get tired, but that’s three kids for you. My body aches because the cancer is in my bones, but hey ho, I’m here to tell the tale. I have to restrict what I do, where I go and what I lift due to my neck being half titanium. Other than that my day to day life is relatively normal. I have quality of life and that is the greatest thing about it.

Positivity is something I strive for and something I work on every day. It isn’t easy but once you have that attitude you can overcome anything. I have 3 small children who need me and I need myself to be strong for what the future holds. It is a life-limiting cancer, but I have to live each day as it comes. Bad times don’t last, strong people do.


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