Below she shares her story of optimism and to remind people that they are not alone no matter how rare their tumour is.
I first started experiencing pain in my left knee at the end of Summer 2019 and at first I thought I must have slept awkwardly. Three weeks later the pain was becoming progressively worse, so I made an appointment at my GP surgery.
I was sent for an X-ray, which came back NAD (nothing abnormally discovered). My GP thought it might be tendonitis of the patella and advised that it could take 6-8 weeks to resolve. By the end of six weeks the pain was considerably worse, and I was limping so badly that I tripped in the kitchen, which jarred my leg and caused excruciating pain. I knew then that I had to go to the Accident & Emergency Department of my local hospital.
At the hospital I had another X-ray and was told I might have a meniscus tear to my left knee. I was given crutches and an appointment at the fracture clinic the following week. This was in November 2019. It was at the fracture clinic that I heard the words:
your X-ray is showing something that really shouldn't be there.
This was really devastating as I had lost my sister to ovarian cancer that summer.
Three days later I had an MRI scan at hospital, the results for which indicated Giant Cell Tumour of the Bone. I was referred to the Royal National Orthopaedic Hospital (RNOH) at Stanmore for specialist care.
In December 2019 I had a biopsy under general anaesthetic at RNOH, which confirmed the diagnosis of Giant Cell Tumour of the Bone. I was given this news in early January 2020 and surgery was scheduled for 24th February 2020.
I had radical surgery to my left proximal tibia which included a total knee replacement and gastrocnemius muscle flap. Thirty months on from my surgery I still walk with a pronounced limp and experience discomfort.
I was unlucky to have my surgery just before the first lockdown of the COVID-19 pandemic, which meant I received no meaningful physiotherapy and follow-up consultations were by telephone only. I have found the last three years of my life very isolating.
Having reduced mobility means I have discovered online shopping! It's fair to say I've embraced this with gusto. I have also found enjoyment in crafting - everything from knitting to cross-stitch. I have two little dogs who have kept me sane and furnished with comforting licks and cuddles. I now need a dog walker to walk them, and I really do miss the camaraderie of the local dog walk fraternity.
My husband has been AMAZING! A real supportive rock. Like a lot of people following the COVID-19 pandemic I have lost all my confidence and now find it nearly impossible to get out and about due to extreme anxiety. I guess I'm an optimist at heart and believe things will get better. I think discovering the Bone Cancer Research Trust's support service has already lifted my spirits! I now know that I'm not the only one going through this, so thank you!
My advice to others would be to remember that you are not alone. It doesn't matter how rare the tumour is there will be someone out there who is experiencing it too. Humans are incredibly good at adapting and pleasure can be found even during difficult times, often when you least expect it.
Early diagnosis is particularly vital in the case of a Giant Cell Tumour of the Bone because, although benign, they are very aggressive and quickly destroy not just the bone but soft tissue too, requiring more radical surgery and on-going aftercare.