June 2017, just weeks after celebrating her 30th birthday, Sarah was diagnosed with Giant Cell Tumour of the talus Bone and has shared her story.
My journey started back in November of 2016 when I went over on my ankle. For weeks I put it down to a bad sprain and blamed a new pair of shoes. After a month of pain and swelling I finally took myself to A & E where they x-rayed it and said there wasn’t any sign of a break. The pain then persisted but this time got worse so I went to see my GP in January 2017 and she requested another x-ray, which again was apparently clear so she sent a referral to the podiatrist.
Finally a month later my appointment came for the podiatrist but I had to wait a few months until April to be seen. The pain persisted and got worse, especially when I started my new job. At the time I put this down to being on my feet a lot more. However now we know this was due to the tumour rapidly increasing in size and putting my talus at risk of collapsing due to a Giant Cell Tumour of the Bone.
The podiatrist was unhappy with a part of my X-ray so I was referred for an MRI. This happened in May 2017 and within 2 weeks I was invited for anothrt MRI. 3 days later, I had a phone call to say I had a tumour and I was being referred to the tumour team. A day later I had a phone call from Robert Jones and Agnes Hunt Hospital in Oswestry, 70 miles away from home. They booked me an appointment and biopsy for 18th June.
10 days later, I got the result. It was a Giant Cell Tumour of the Bone or possibly an aneurysmal bone tumour. I was booked in for surgery 5 days later where they used cutterage and confirmed it was a Giant Cell Tumour and it had destroyed the whole of my talus.
After my operation in June 2017, I was put into a cast boot. I then had a recurrence in November 2017. I had cutterage followed by radiofrequency ablation for the recurrence because it was only small. The doctors expected my talus to regenerate but it never did. In March 2019 I received a bone graft from the hip to fill in the talus.
In October 2017, after four months of not driving, I had to purchase a new car with hand controls to give me some independence back. I have had to loosen the reigns on the housework and had to realise that everything cannot be perfect all the time.
Life is very different now. Going from being a full-time teaching assistant as well as having a husband and three children of my own, to becoming someone who must rely on others is hard.
I have experienced a lot of anxiety when going out in my wheelchair. A gentleman swung his shopping basket over my head to get to where he wanted to be, luckily just missing my head but it was distressing. It is almost like you are invisible. I have found it extremely hard to cope mentally and financially.
It is OK to cry. Take each day and each appointment as it comes and try not to set your heart on deadlines as they may not always happen when you expect them to. Just know there is light at the end of the tunnel, you just haven't reached it yet.
The care I have received at Robert Jones and Agnes Hunt Hospital in Oswestry has been amazing. The staff go above and beyond to make sure I have a comfortable stay. However, being 75 miles away from home and my children is hard. My husband, children and people close to me, have been my biggest strength and I couldn't have got through this ordeal without them as well as my fellow tumour warriors that I have got in touch with via Instagram.