She tells her story to help raise awareness of chordoma.

I first started experiencing problems in 2015. I felt dizzy and my legs kept giving way. I felt like I was drunk all the time. I was so unsteady on my legs, I had to get a frame to help me walk.

I was told that I had fluid on the brain, and this was causing my symptoms. I was also told my GP that I was suffering from anxiety and was prescribed some anxiety medication to help with this.

I carried on as best I could and, in 2021, I managed to have an MRI scan which showed a lesion on my spine. I was transferred to Leeds General Infirmary (LGI) and the lesion was biopsied. When the results of the biopsies came through, I was told the lesion was nothing to worry about.

In July 2022 I had an ETV (endoscopic third ventriculostomy) where the fluid on my brain was drained. After the procedure I felt fantastic, and was able to walk without my frame. That lasted for around four weeks, when I suddenly developed terrible back pain. It was so bad I went to the A&E department of my local hospital, where I had another MRI scan.

I used to work in the NHS, and I knew that you don't usually get an MRI scan for backache in A&E, so I was worried at this stage that something was seriously wrong.

After the MRI I was told I was being transferred to the LGI. I had been at the A&E department since lunchtime and was still waiting to be transported at 3am, so I was told that I could go home.

The next day I went to the LGI first thing in the morning where I was admitted. I spent a day and a half at the LGI before I was taken by patient transport to the Royal Victoria Infirmary in Newcastle-Upon-Tyne. At this point I knew that something had been found on the MRI scan, but no-one told me anything more. Luckily, the driver of the patient transport was really friendly and chatty otherwise it would have been a very difficult and anxious journey.

I was admitted to the Royal Victoria Infirmary where I had more scans. A nurse then came to tell me I had cancer. I knew there was something wrong, but never suspected cancer. It just came out of the blue.

The consultant surgeon came to see me and told me they would need to operate, but that they could no do it straight away and I would need to go home. I didn't need another biopsy as they knew what the cancer was, a chordoma on my spine (T12 vertebrae).

I then went home for an anxious two weeks whilst I waited for my surgery, which took place on 29th September 2022. I had two 8-hour surgeries over two days. The first surgery was to remove the tumour and the second to reconstruct my spine using a bone graft from my left leg (fibula) and metal work.

I was in hospital for four weeks before I was allowed to come home. At this point I felt like I had been abandoned. I had no visits from the district nurse, and no physiotherapy until January 2023.

I found out soon after coming home that I would be having proton beam therapy (PBT) at the Christie in Manchester. This started at the beginning of 2023 and went on for nine weeks as the machinery required maintenance during my stay. I had 36 sessions in total. I found that I could tolerate PBT, even though I had to lay on my back with my arm above my head for 60 minutes.

I always liked to listen to Oasis and sing along whilst I was having my treatment, which made everyone laugh.

At one point, a junior doctor overprescribed morphine, and I overdosed and had to be admitted to hospital. Despite this, the staff at the PBT centre were amazing.

I am now back at home but I'm still in a lot of pain. I had to leave work as I am unable to walk far, stand for long periods of time, or go out by myself. I am still taking Oramorph, a liquid form of morphine, and I am on six-monthly check ups with an oncologist and have follow-up appointments at the LGI. Thankfully, I have been told I am in remission.

My husband has been absolutely amazing throughout everything and took over all the cooking, cleaning etc. when I was unable to do it. I can manage to help with cleaning and washing now, but he still does all the cooking as I can't stand long enough to make a meal. He was also by my side for the whole nine weeks when I was at the PBT centre.

The financial grants I received from the Bone Cancer Research Trust were also a real help as they paid for the parking whilst we were in Manchester.

I appreciate that my diagnosis was complicated as I also had fluid on my brain which may have caused some of the symptoms, but awareness is so important to make sure patients are diagnosed faster.

My advice to others who have just been diagnosed is don't be surprised that you don't fall to pieces. You are much stronger than you think, and you will find the inner strength needed to get through it. Just keep looking straight ahead with tunnel vision and you will come out the other end.

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