Sept 2018 I wake,unable to move the pain was excruciating.An ambulance arrives and
forty mins later after getting down stairs, with two paramedics and gas and air my journey to A & E begins. I’m taken into a room with a Dr and given Morphine and sent home. As time went on the pain increased, my family were all looking after me full time. I couldn’t walk and had borrowed a wheelchair from neighbours. My left leg was useless and I was carried upstairs every night. I lived from one painkiller to the next in between the screams, it was really that bad. Three ambulances later to A & E and more morphine, they refused to put me on a scanner and insisted it was a spasm in my back.

By late October a hard obvious lump appeared in the middle of my spine. An emergency apt with my GP led to an Xray at my local walkin, and after the weekend my GP called me in and said I had to see a Spinal Consultant at the hospital. He said it was something, maybe calcified bone and I needed scans.He was a top Sarcoma Surgeon but did not think it was anything too serious. Two weeks into Dec ‘18 the CT and MRI scans were done and I was told to go immediately to the Royal Victoria Infirmary to the spinal ward.
It was now the afternoon of the 10th Dec, my Consultant came and said he was going to do a biopsy that night. I was prepared to go to Theatre but another emergency had come in so I had my biopsy the following morning. It turned out to be an emergency operation instead and on the Wed afternoon the following day, a family meeting was called and the worst news you do not ever want to hear, it was a huge tumour called an Osteosarcoma and it was cancerous. We were told he was going to operate the next day, and it would be a long day. He said if he didn’t I would be, firstly paralysed and then I would die, very quickly. The tumour was the size of a grapefruit and had been growing around my spinal cord.

Nearly thirteen hours I was in surgery and he had never seen anyone with this type of tumour in their spine before. We were told it was unbelievably rare and especially in a 54 year old female.

Three weeks recovery and I was in surgery again, for five hours to extract a few cancer cells which had been left.The top plastic surgeon spoke to me about maybe doing a skin graft from my upper thigh, but actually managed to pull skin around my back, albeit very, very tightly.

Weeks later and with daily physio to get me walking with frames, I was moved to the Freeman Hospital for my Chemo. I managed three out of six, originally expected courses and numerous infections, it was decided enough was enough as the Chemotherapies toxicity was killing me.

Next came five days in ICU with Sepsis, which I was not expected to survive.

By May I was home after nearly six months in hospital, right from the Monday I went for the scans.

Adjusting was terrible and another trauma, but a few weeks on and an apt with my Oncologist for my Radiotherapy and again the news blew myself and my husband away. I could not have the Radiotherapy as it was not powerful enough for the type of tumour I had, had.So preparations were made for my family and me to go to The Christie, Manchester to have Proton Beam Therapy.
It was a long wait over the Summer to see if my case would be accepted for P. Beam Treatment. Then another three weeks of an issue with trying to get the beam inbetween my metal work to target where the cancer had been, and the call finally came.
Sept 2019 and in Manchester for five days to have tests, my tattoos put on my back and lying on my front for numerous scans and a body suit made exactly to fit for my treatment. I had previously been practising at home with a physio advice, how to lie on my front for over an hour so I was prepared for my treatment when we got the call. The pain was unbearable, but if I was unable to do it my treatment would be cancelled.

A month later, I had to organise my own ambulance for transport back down to Manchester, my family following behind with suitcases for a long stay, we arrived at our three bed, disabled apartment and settled in.
Everything was extremely well organised, transport to the hospital daily, our apartment was paid for and we only had to pay for our food. The treatment at the Christie was five days a week with the weekends off, although the fatigue every Sat meant being bed bound all day, with my family physically lifting me to the toilet and feeding me everytime I opened my eyes, it was awful. Thirty seven Proton Beam cycles was my target, and ninety nine percent of patients were children or young adults, again I was in the rarity section but also realised how lucky I had been to be voted in to get the treatment. But it hit me hard how aggressive my tumour was. Unfortunately during that time my immune system was rock bottom and I got shingles whilst there, but with tablets had to continue through. The final straw was the Proton Beam broke and after maintenance people flew from America to repair
it, in a week. Everyone else had gone back to having radiotherapy, but because I couldn’t have it we had to wait till it was fixed.
Dec 2019 and two weeks till Xmas we were finally home.

Over the next three years and lots of scans, X rays on my lungs, counselling and physio, I faced everyday. The reality that I could walk with my sticks round the house but outside I would always now be in a wheelchair has been unrelenting trauma. My job was gone on ill health. I have Neuropathy, caused by the Chemotherapy and the operations in both legs and feet. The tips of my fingers are also affected and I am now a disabled person unable to ever work again.
In Nov 2021 I faced another operation which my surgeon said, ‘would be a walk in the park’ for me, after my scan showed the screws at the bottom of my spine were loose. A disc was removed, this time operating through my front to my spine, and a cage and four new screws were put in.

Now March 2023, I, struggle physically, pain and mobility, and mentally but have joined a Community Garden Group which gives me therapy through planting, fresh air and meeting new people. I have continuing counselling and physio. My daughter is my carer and I have sought out Sarcoma UK, Rarecan, Cancer Research UK and now Northern Cancer Voices with whom I hope to continue to get,’ My Story’ out there to help others like myself.’

Janet Rebair