A 39-year-old Liverpool mum had to endure nine years of pain before being diagnosed with a rare sarcoma bone cancer, which measured a staggering 15cm when it was removed earlier this year.
Sue Taylor has spoken about the major surgery and gruelling chemotherapy she endured after the late diagnosis. However, she is turning her harrowing experience into a force for good, launching a unique ‘wigathon’ fundraiser for Sarcoma UK.
It was nine years ago that Sue first started experiencing hip pain. She went to the hospital which then gave her an MRI. Medics at the hospital told her the MRI had shown some tumours on her hips but these were benign and nothing to worry about. They said she could just take paracetamol and other painkillers to deal with the pain. Sue was referred to a physiotherapist and was prescribed painkillers, but as the years went by, the pain got worse, sometimes keeping her awake at night. Typically, she would feel shooting ‘electric shock’ pains down her shin.
Little did Sue know that this was a result of a slow-growing tumour pressing on one of her nerves. ’The pain never went away, but I learned to live with it. I had four different physios during all this time, but nobody mentioned cancer,’ she said. Matters came to a head at the end of last year.
In November, she was in so much pain she went to her local A&E department, where she had an X-ray of her shin but heard no more. By Christmas, when she returned from a holiday abroad with her husband Dave, the pain was constant, and a locum GP sent Sue for another MRI scan. In January this year, nine years after she first went for the initial MRI scan, she was sent for a new MRI which then revealed that she had a 15cm tumour in her hip area.
Sue was referred to The Royal Orthopaedic Hospital in Birmingham where, in March, she had a four-and-a-half-hour operation to remove the tumour with her hip and femur replaced by metal. Sue has been left with a 40cm scar along the side of her leg. Biopsies found she had osteosarcoma, a bone cancer.
But Sue’s struggles weren’t over yet; she was devastated to be told the tumour she had was high grade, meaning there was a risk it could have spread. In May, she started a gruelling programme of chemotherapy, which she says has ‘battered her body’.
Sue is coming to terms with the fact her cancer was missed for so many years. ‘If I had been diagnosed earlier, the tumour would have been smaller, and the surgery would not have been as severe. As it is, I can’t walk very far, I can’t do much on my own, and I certainly can’t go to my beloved Liverpool matches. I can no longer wear heels, I am left with a limp, and it really does embarrass me.’ She added: ‘Not once were my tumours checked up on, and I was told they didn’t need to be because they were benign. Medical professionals must listen to what the patient is telling them. Nobody knows my body better than me, but I don’t think I was taken seriously enough.’
Yet Sue remains philosophical about her situation. ‘I’ve been very positive during this journey and took everything thrown at me with a smile on my face, but it has, hands down, been the hardest time of my life. The outcome could have been a lot worse, so I try not to let all this get to me. If people read this and the symptoms and my story help at least one person, I know I’ve served my purpose. I would also like to thank the sarcoma team at Clatterbridge, Liverpool; they have been unbelievable; I could not have done any of this without them.’
Sue is now using her experience to raise money for Sarcoma UK with a unique challenge – a ‘wigathon’. ‘I wanted to do something fun and happy, so I wear different wigs every day for 30 days and try to jazz up my outfits and make-up. I wouldn’t wish what has happened to me on my worst enemy, which is why I want to raise as much money as possible for Sarcoma UK – this charity needs so much more funding and research available to help others.’
Sue has been posting pictures and videos of herself wearing different wigs on her Instagram page @suetaylor85. There has been a great reaction, with £4,500 pledged during the first 24 hours of her appeal.
Sarcoma UK’s Support Line Manager, Helen Stradling, said: ‘Sarcoma UK is looking to improve outcomes for sarcoma patients. We’re investing over £670,000 in seven research projects to develop better and more effective treatments for osteosarcoma. Our Support Line is always available for those who need guidance or simply someone to talk to about their sarcoma journey, whether they’re dealing with diagnostic challenges or navigating treatment options.’ The Sarcoma UK Support Line is free and confidential, call 0808 801 0401 (Monday-Friday, 10am-3pm), email supportline@sarcoma.org.uk or text 07860 058830 to speak with a specialist adviser.
You can donate to Sue at https://www.justgiving.com/page/sue-taylor-1727255671593
