Below she tells her story.


In December 2018 I started to experience a bad back. I went to the GP and was given painkillers, which helped for a few months.

Around April 2019 the back pain began to get progressively worse, and I started to lose the power in my legs. I was unable to lift my leg to walk up the stairs.

I felt unable to stand even for short periods of time and got fatigued quickly.

I went back to my GP surgery and saw a locum GP who suspected I had a slipped disc. They told me I could be prescribed more painkillers or be sent for an MRI scan, to try to pin down the underlying issue. I opted for the MRI scan, which was carried out in June 2019.

Saying yes to that scan saved my life!

The scan was on the Saturday and on the following Monday the GP phoned to tell me I was being referred to a specialist clinic as they had found something in my spine. Cancer wasn't mentioned, just that they needed to check that the lesion in my spine was nothing sinister.

It was only when I saw my referral letter for a fast-track referral to the Oxford Sarcoma Service that I realised cancer was a possibility.

Ever the optimist, I stayed positive, thinking just because I've been referred that doesn't mean it is cancer. In fact, the specialists couldn't tell from the scan alone, and I was told I needed more tests to determine what the lesion was.

I was booked in for my CT-guided bone biopsy in July 2019. Although nervous about this I told myself - maybe naively - that everything would be fine as I would be given a local anaesthetic.

Anyone who has had a bone biopsy knows how wrong I was. It really hurts, but at least it was done and I could get some answers. Unfortunately for me, the results were inconclusive, and I was told I needed another biopsy.

This time I was called back for my results and advised that they were 90% sure I had chordoma, a form of primary bone cancer. The diagnosis was only confirmed several weeks after my surgery.

I don't remember much of the rest of the appointment, but I knew that things were about to change.

I was suddenly swept into a world of scans, waiting, tests and appointments, with more waiting. I started to find out more about chordoma and I found the Bone Cancer Research Trust's resources so helpful.

I was advised that chordoma is resistant to chemotherapy and my best option was surgery, along with a new type of radiotherapy called proton beam therapy (PBT). Due to the complex nature of my surgery, it was due to take place over two weeks.

Surgery number one took place in November 2019, which lasted 11 hours and they managed to complete phase one of the process by inserting the support structure. From this I went straight into intensive care, where I stayed for a few days before being moved to a ward to recover my strength.


A week later I underwent surgery number two, after another 11 hours they completed phase two of the process and successfully removed part of my spine (my L5 vertebra) and replaced it with a carbon fibre cage and connected the support system.

This was the first fully customised carbon fibre construction used for this type of surgery.

The days following surgery were difficult, I struggled with pain in my legs and feet, but I made it into a wheelchair and within a week I was well enough to be moved from the John Radcliffe Hospital in Oxford to the Nuffield Orthopaedic Centre for recovery.

I made it home just before Christmas and with no nurses, no routine, and no time to myself to think, my mental health suffered. With the support of my husband, and some medication from my GP, I was slowly able to get myself back on track.

I began physiotherapy and worked on getting stronger, progressing from a frame to a wheeled walker. Around this time, I received confirmation that I had been accepted for PBT at The Christie in Manchester.

In April 2020 I began my treatment. I stayed in Manchester for eight weeks with approximately one hour of treatment every day.

My experience at The Christie was amazing because of the holistic approach they took to my treatment. Whilst I was at The Christie I received not only PBT, but also counselling, physiotherapy, and needle phobia desensitisation, all of which were outstanding.

Fortunately my surgery had clear margins, and I remain NED (no evidence of disease) following my PBT radiation therapy.

Once I had recovered, I had to build up strength and stamina both physically and mentally. It took me longer to recover than anticipated and due to nerve disruption during surgery I have been left with foot drop in my right foot/ankle. This is managed with an ankle foot orthotic. I often manage without my orthotic around the house, but get told off by my husband for doing so!

My friends and family have all helped me enormously. I also found understanding chordoma and how it is treated, including advances made recently, was helpful. It was also reassuring that my surgeon had previous experience of chordoma and my type of surgery.

A cancer diagnosis is not the end. You need to keep living your life and take everything one step at a time or you will overwhelmed by the rollercoaster journey you've been thrown into. There will be bad days. There will be good days. Find the positives and the things that you enjoy and make you happy.

Cancer may change your life, but I've made good friends and experienced things others haven't. It has made me more resilient.

Awareness is so important. My chordoma was in my L5 vertebrae but had started to make its way towards heading out of the bone structure. Had it not been caught at this early stage my story could've been very different. I have heard of others who haven't been as lucky as me.

Despite having a whole vertebra removed, being zapped in Manchester for many weeks, and taking a while to recover this morning, as every morning, I walked my dogs, made my coffee, and went to work. As my husband puts it, I had the best possible hand in the worst possible game. The trick is to just keep swimming.

You can watch Lori's presentation at the Bone Cancer Conference by clicking the video below:

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