A Weston-super-Mare woman whose incurable blood cancer caused her to shrink an inch has joined the race to find others living with undiagnosed myeloma. Sarah O’Fee, from West Wick, had four broken ribs when she was diagnosed with myeloma, an incurable blood cancer that kills 3,000 people in England each year, in February 2010.
He is only 48 years old. Over the years, Sarah’s cancer has returned six times and she is now out of all avenues of treatment. The cancer, which can eat away at bone, also caused two of his spine to collapse, causing him to lose an inch in height as a result.
Sarah has teamed up with the charity Myeloma UK to #FIND 851 patients currently living with undiagnosed myeloma in the UK. As part of her campaign, she’s urging the public to learn about the symptoms, put themselves aside and spread the word about myeloma.
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“It’s so important to get diagnosed as early as possible – I didn’t know I had myeloma for a while because I thought I had a really bad cold,” said the 62-year-old. “I was in so much pain, didn’t realize I had several broken ribs. I just feel really bad.
“You know your body. If something doesn’t go away after a few weeks, you really and really need to go see your GP.
“You don’t want to be there five months later thinking, it’s still not gone. If it’s not myeloma, brilliant. But you won’t know until you’re gone.”
She added: “I’m not someone who goes to a GP unless I really feel the need to, but people at work keep telling me to go. It took some time, but my GP knew something was wrong when things didn’t improve.
“He did some tests and found I had a blood clot. I got a call at 5pm the same day from the GP. He said, ‘I need you to go to the hospital now.’
“When I found out it was myeloma, I didn’t handle it very well.
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“It wasn’t great at first. But after the initial shock, I thought, I’ll keep fighting him.”
Around 5,900 people are diagnosed with myeloma in the UK each year. But during the pandemic, myeloma has seen a decline in diagnoses, with confirmed cases dropping by 851 compared to pre-COVID estimates.
Although it is the third most common type of blood cancer, myeloma is often overlooked, because its symptoms, including back pain, fragile bones, fatigue and recurrent infections, are vague and often associated with general aging or mild conditions. One in four patients wait more than 10 months for a diagnosis.
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These are some of the longest delays of any cancer in the UK, however, a simple blood test can, in most cases, detect signs of myeloma. Although it cannot be cured, myeloma is treatable in the vast majority of cases.
Treatment is aimed at controlling the disease, eliminating complications and the symptoms they cause, and prolonging and improving the patient’s quality of life. Myeloma UK Chief Executive Sophie Castell said: “We know that during the pandemic fewer people have been diagnosed with myeloma than expected.
This means that around 851 people may not be aware that they are living with blood cancer. Common symptoms are back pain, fatigue, recurrent infections or easy fractures.
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“The most important thing people can do is rule themselves out by checking their symptoms and, if something doesn’t look right, see their GP. It may take more than one appointment for your doctor to put the pieces of the puzzle together. So please keep pushing or ask for a second opinion. Together we will find the missing 851.”
Sarah was working at Bristol Airport in the fall of 2009 when she started experiencing flu-like symptoms and felt very tired. On the advice of her colleagues, she went to a general practitioner’s practice, but her doctor was unable to pinpoint what might be wrong.
Everything came to a head when Sarah went to Dartmouth for a short break and felt out of breath every time she walked up the hill. He knew then something was not right.
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“My ribs are killing me. The road by the beach is very hilly and I could barely walk to the lodge. I was out of breath and I was in so much pain.”
When he returned to his GP, it turned out he had four broken ribs. He was hospitalized but doctors couldn’t find what might have caused his broken ribs and he was sent home again.
Finally the GP ordered some tests and he was diagnosed with myeloma. He has been treated at Weston General Hospital since then.
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“When I was diagnosed, my doctor said, ‘Anything that’s in store for us, we’ll do it for you and it’s been like that ever since. It is your life that you have put in their hands and they are honest and honest.
“They didn’t cover it up because I didn’t want that, I wanted the truth. I trusted them implicitly. At Weston you get honest conversations and it’s invaluable.”
Cancer has taken its toll both emotionally and physically over the past 13 years. Sarah underwent two separate surgeries to inject cement into her broken bones in 2017 and 2019.
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He now suffers from nerve damage in his hands and feet and has limited mobility. But he was determined to live as fully as possible.
“If I walk far, I need a cane,” he added. “I can’t stand it for long, I have a hunch. I used to be 5ft 4in and I’m only 5ft 3in now. Getting out of my car may be difficult, but I’m still alive.
“I have my days where I worry, I get really sad, like everyone, you get these moments. But I continue.
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“I’ve had it for quite a while and if it throws a wrench I’m going to keep going. I’m not going to let it catch up with me.
“When I was first diagnosed, I didn’t think I would reach my 60s – it never crossed my mind. I thought, I’m going to live each day as it is and if I can keep going, I will keep going. Now I am 62 years old. I am still here. I will keep fighting until the last day.”
People can take part in Help Find 851 by visiting www.myeloma.org.uk/Find-The-851 . Myeloma UK operates an Infoline on 0800 980 3332.
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