Ed's Cancer Journey

On Tuesday I was diagnosed with a spinal Chordoma tumour, a rare and difficult to treat 'one in a million' type of bone cancer. The tumour has likely been growing undetected for many years and is currently the size of a large grapefruit.

On Monday I will be moved to John Radcliff Hospital in Oxford to start a long and gruelling surgery process. Over the next 6 weeks a spinal surgeon, vascular surgeon and plastic surgeon will remove the tumour along with at least one of my lumbar vertebrae and rebuild my spine using metal, carbon, plastic, bone from my left leg and donor bone. The surgeons will need to open me up from both the back, front and sides, and between surgeries I will be looked after in ICU. I've got some of the best surgeons in their field so I'm optimistic that they're going to do a great job.

The surgery is high risk, because of the closeness of the tumour to my major nerves and arteries. They will definitely need to cut some of the nerves to my lower body and I will be left with permanent disabilities. It may be that my mobility is impaired, I suffer nervous system dysfunction, or I may lose function below the waist completely, including bladder and bowel function. There is no way of knowing the extent of my future disabilities until after surgery.

It's highly likely that I will need radiation or proton beam therapy either after surgery or in the future.

Zowie and I have already relied heavily on family and friends to get us through the last 7 weeks of hospital stay, and we're so greatful. As many of you know Zowie had to give up work because of her own disability and relies on benefits, now my wages and sick pay are rapidly dropping too. Being in hospital away from home is expensive and we are reaching the end of our resources. I need Zowie nearby, not just for comfort and emotional support, but to advocate for me when I need it, do hospital and life admin, coordinate me & my belongings and generally keep life ticking over. This isn't a journey I can do alone.

We are aiming to raise £6000 which will cover expenses for the next 6 weeks, hopefully enough time to get through surgery and see clearer what my outlook is.

This would bridge the gap in our finances while we apply to cancer charities for grants etc. A large portion of it would go towards Zowie's accommodation near the hospital in Oxford, transport and buying extras that help me which aren't supplied by the hospital (so far we've had to buy things like cooling mats, fans, mobility aids). Anything left over will be put towards my ongoing treatment and recovery.

We know this is a big thing to ask when everyone is struggling with the cost of living. If you can afford to help us we'd be so greatful, if not no judgement but please share our page. We are so greatful for any help we can get x

Update 1- Monday 25th September

Ed's first surgery went really well and he's currently recovering in the critical care unit.