In late 2018, I became aware of a persistent pain in my hip though I couldn't pinpoint the exact area to start with. Over the course of 18 months, I went to the doctors eight times before I finally got my shock diagnosis of Chondrosarcoma in my acetabulum (the socket of the hip bone) in May 2020.
I was called to an immediate appointment at the Nuffield Orthopaedic Centre (NOC) in Oxford and told that I had a sarcoma that required immediate removal.
I was advised that the tumour was not responsive to chemotherapy or radiotherapy, so the only option was limb salvage surgery to completely remove it. It was the size of my fist.
It was very tough going through this experience during lockdown - 2.5 weeks in hospital without visitors. That was really hard on my children, aged 12 and 14 at the time.
It was also incredibly difficult getting the diagnosis over the phone when all along I was told that it would be 'nothing sinister' and 'nothing to worry about'.
My tumour was fully removed with a clear margin during major surgery, removing and reconstructing my right hip and half my pelvis.
The recovery from this surgery is incredibly tough and challenging. I was a very active person prior to the operation, when my pain allowed, and I don't know what my mobility will be like in the future. The care that I received whilst in hospital from all my healthcare workers was second to none - they made an incredibly tough experience manageable and brought joy to me each day. I can't thank them enough for the care that I received, they even celebrated my birthday with me and made cards etc! I also received amazing onsite support and counselling from Maggie's Charity during my time in hospital and recovery and that really helped me through some dark moments.
My life has altered dramatically since my operation. I am now 8 months post-surgery and am able to walk short distances with a walking stick. However, to start with, I had to live downstairs for a few months as I was unable to climb stairs and change the set up of the house to accommodate this. My family have been an incredible help - my parents moved in to care for me. I am struggling with my lack of mobility but am incredibly grateful that I was able to keep my leg. I am under 3 monthly pelvis and lung scans.
My family and friends have been wonderful and helped the children and I get through a massively challenging time. My children have been brilliant at cheering me up and supporting me. My friends have delivered homemade meals, books and walked my dog who was only a 5 month puppy when I went into hospital. My parents have been an incredible support - both emotionally and practically. I didn't think that they would still need to look after me age 45!
My advice to others is very clear - if you feel that something is wrong, persist! Early diagnosis is SO important and I feel that my journey would have been very different with an earlier diagnosis. I wish that I had seen the same doctor, rather than 5 different ones and that I hadn't felt so embarrassed going back again and again.
As above, the earlier the diagnosis, the better. I believe that there is a huge amount of awareness to build with healthcare professionals so that they know the signs to look for.
Sadly, with hindsight, my symptoms were clear - terrible pain, worse at night, limping, night sweats etc but it was missed for 18 months and thought to be sciatica or damage from exercise.