By Janet on 24th April 2023

Research on any cancer is utterly important, but more so on cancers that are rarely found. It’s not fair on those patients with rare cancer to tell them that money is not available to spend on their research because there are not many people that get them.

In September 2018, I woke with excruciating pain, unlike any pain ever and the first of three ambulances was called. I was taken to A&E and after consultation was given morphine for back pain. I knew there was something more. This went on for three months, 3 ambulances to A&E and more painkillers given. They wouldn’t give me a scan which I should have had.

During this time I was in a wheelchair as one of my legs was not working. My husband was off work looking after me and my family were screaming at my Drs for help. By October a hard lump appeared in my spine which called for an emergency appointment with my GP, who sent me for an X ray the next day.

My GP contacted me and gave me an appointment to see a Consultant at the hospital. Even the Consultant didn’t think it was an emergency, even though he deals with Sarcomas on a daily basis. He sent me for an MRI and CT scans two weeks later.

I was immediately sent to the Ward for Orthopaedic spinal surgery and admitted. This was Monday 10th Dec and was prepped for a biopsy but unfortunately an emergency came in but on Tuesday morning I had what turned into emergency surgery to remove some of the tumour off my spinal cord.

On Wednesday my family were told it was a huge cancerous Osteosarcoma on my spine and tomorrow would be a long surgery. It was nearly thirteen hrs. Three weeks later I had another five hr surgery to remove the last of the cells.

By Feb 2019 I was taken to The Freeman Hospital for my chemotherapy. I had three rounds of the worst chemo, Cisplatin/Doxorubin which made me so ill it nearly killed me. I was so unwell, I couldn’t have any more. I’d had infection after infection and ended up in ICU with Sepsis for a further five days, which again they didn’t expect me to survive.

Janet's osteosarcoma story

In May, after nearly six months, I got home but returning was terrible and I could not adjust to normal life. I had to finish with work on ill health and I was left unable to walk at first with a walker, then sticks indoors but outside I am wheelchair bound.

Physiotherapy and Counselling for PTSD followed.

The house was adjusted for me to sleep downstairs with an en suite/disabled shower room. Next came the radiotherapy, but when I went for the appointment, I was told it would not be strong enough and they were sending me and my family for Proton Beam Treatment to Manchester, The Christie Hospital.

After the shock sank in and we had to wait right through the summer to see if I would be accepted, then in Sept we went for five days of examinations, tests and scans in which I had a body suit made of my shape for the treatment. I had to practice for six weeks lying flat on my stomach for up to an hour so I could have the treatment.

At the end of October we moved down to Manchester and stayed in a CityStay Apt for seven and a half weeks, 37 treatments, five days a week. It was gruelling and I was cancer free when I had it. They said it was because the type of tumour was so aggressive, as I later learned. Every Consultant, Dr I saw were the lead ones in their fields and I got the best treatment but we were continually told how ‘rare’ a tumour it was and rarer still because I was a 54 yr old lady, small in height with no reference to any family genetics. I have since found out how rare all this was and it being in my spine.

Now I try to partake in getting my story out to help other people and GPs who I want to be able to recognise symptoms and not dismiss people as having a bad back – I should have been scanned sooner. A few days later I would have been completely paralysed and after that – well I wouldn’t be here.

Now I have to make a new life for myself, which is extremely hard.

I accidentally found RareCan whilst looking for information about Rare cancers online. After reading about it and realising my specific Cancer was not on the list I filled in the relevant info to join. It’s great that RareCan is pushing the awareness of rare cancers into the public domain to help patients lead the way in research .