Below she tells her story to help raise awareness and help others feel less alone.
On 13th September 2018 I woke up in the night in the most unbelievable pain. I was taken by ambulance to my local A&E, was given morphine (and a number of painkillers) and sent home.
The terrible pain continued and I had to borrow a wheelchair from my neighbour as I lost use of my left leg.
I visited A&E a further three times over the next three months (twice via ambulance and the other time my husband took me) and each time I was just prescribed more pain medication. I was never given a scan. It was dismissed as a bad back or slipped disc. I did have a home visit from the GP who said I could have a tumour, but they never did anything about it because the chances were so slim.
I also saw a couple of physiotherapists who told me I was
suffering with a bad back. I asked the physiotherapist for a scan, and I was
told it was not necessary and was a waste of time.
A week after this (just under two months since the excruciating pain began) a lump appeared in the middle of my back. Through seeing my GP I had an X-ray at my local walk-in clinic and this lead to an appointment with my now-consultant, who initially thought it was a bony spur and nothing to worry about.
I finally had an MRI and CT scan two weeks after (roughly three months since it all started) at the Freeman Hospital in Newcastle Upon Tyne, which showed the tumour. I was taken immediately to the Royal Victoria Infirmary (RVI) in Newcastle for an emergency biopsy. I was diagnosed with an osteosarcoma of the spine, which was the size of a grapefruit, and had twisted around my spinal cord.
Another few days would have left me paralysed.
I had the MRI and CT scans on Monday 10th December 2018, the biopsy the next day, diagnosis on the Wednesday and on the Thursday I had a 13-hour surgery to remove the osteosarcoma. The surgery was very risky, and my family were told that I may not survive or could be permanently paralysed if I did survive. Three weeks later I had another 5-hour surgery to remove some cancerous cells which had been seen during my earlier surgery.
My surgeon was wonderful and saved my life.
I was in the RVI until February 2019 when I was transferred back to the Freeman Hospital to start chemotherapy. The plan was to have six cycles of Cisplatin and Doxorubicin. The chemotherapy was far worse than I ever imagined. I suffered from repeated infections, severe mouth ulcers, and blood clots in my lungs to name a few. I was given three cycles until the decision was made to stop the chemotherapy as it was killing me.
After the chemotherapy was stopped, I developed sepsis and was rushed to the intensive care unit for five days. My husband was told I was so unwell they wasn't sure I was going to survive.
Fortunately I did recover enough to go home in May 2019, but found it very difficult to adjust to being back home after being in hospital for six months.
At my next oncology appointment, I expected to be arranging for radiotherapy treatment, but was told it was not strong enough and I was put forward for proton beam therapy at The Christie in Manchester. I finally heard in August 2019 that I had been accepted for proton beam therapy.
I found the thought of leaving home again to go to Manchester difficult, but I knew I just had to get on with it.
At the start of October 2019, I started proton beam therapy and had 37 sessions over two and a half months. I finished proton beam therapy two weeks before Christmas and headed home. It had been a whole year out of my life. I now have a yearly MRI scan and chest x-ray and I am doing well.
My whole life has changed. My job had to go. I can walk in the house with sticks but must be looked after, and I used a wheelchair when I am outside of the house. I am finding it hard to adjust and live in a lot of pain from the surgery and neuropathy from chemotherapy.
My family and my dog have given me strength but there have been days where I wonder what has kept me going. I had six months in hospital following my surgery and during chemotherapy. It was horrific but I am still here. Having a sense of humour also helps.
I knew something was very wrong but had to fight to get help as early as I was able to. If you think something is wrong, go and see about it right away. But learn to fight hard to get the help and scans that you need. Don't give up, it could save your life. I was turned down several times in A&E for a scan, and when I was finally diagnosed, I was just days off paralysis and weeks from dying.
I wish I had been seen earlier but I am so thankful to everyone involved in making me well.
There needs to be more awareness of bone sarcoma (primary bone cancer). My GP and the physiotherapists did not know what it was or did not even consider bone sarcoma as a diagnosis as it is so rare. I kept being told it was a slipped disc or a bad back. I want to do all I can to change this for other people.
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