Woman with rare condition scared to sneeze in case brain 'pops out'
A woman terrified her brain would “pop out” her head if she sneezed after being shown a scan of her head is praying a cure can be found for her cancer.
Doctors were stumped when Dorothy Williams, from St Michael's, suffered a number of infections in her chest and urinary tract, as well as back and bone aches.
Eventually a doctor suggested a specialist blood test at Royal Liverpool Hospital and after a bone marrow sample was taken she was told she had multiple myeloma.
Fewer than a third of people live longer than 10 years after diagnosis of the bone marrow cancer which is usually picked up through routine blood and urine tests.
Dorothy thought she had beaten the disease before it returned a decade later in 2014.
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Dorothy had a number of scans and procedures at Royal Liverpool Hospital (Andrew Teebay Liverpool Echo)And when her doctor showed a scan with specks of shadow on her skull, with another shadow at the top of her neck, Dorothy worried her brain would "pop out through the holes".
She told the Liverpool Echo: “It sounds absolutely stupid, but you do wonder if you've got holes in your skull, what happens to your brain, what happens to the fluid? Does it come out?
"When they discovered how badly the bone had been affected, I had to wear a neck brace to hold my head in the right position for a few months. My spinal surgeon told me to be careful how I move my head.
"I was terrified of needing to sneeze or blow my nose or tie my shoe laces. Fortunately it was only for a very short time because they were able to do an operation, which was absolutely amazing.
"But one of my biggest fears was going to bed because what if I turned over in the night?
“I was scared to get a shower because I had to take the neck brace off, and as soon as I got out, I'd put it back on.
“I didn't want to leave my head free to wobble."
The cancer had eroded 70 per cent of two bones in Dorothy's neck, leaving a high risk it could damage her spinal cord and leave her paralysed.
A surgical team placed "scaffolding" around Dorothy's fractured bones and injected crushed bone to help repair the damage in a pioneering, nine-hour surgery never carried out in Liverpool before. A team in Nottingham assisted via video link.
After more chemotherapy and another stem cell transplant, Dorothy's cancer stayed away for another seven years until it was found again in her hip and pelvis.
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This time she needed her Covid-19 vaccines before starting treatment because of how weakened her immune system was, and how much weaker treatment with a range of drugs would make it.
Dorothy, who still goes for check-ups at Clatterbridge Cancer Centre, said: "I've now been having treatment for so long that I've known my current consultant since he was a junior doctor.
“The team at The Clatterbridge Cancer Centre have been fantastic and treatments have changed so much over the years.
“Myeloma doesn't get the publicity of things like breast cancer or ovarian cancer because it is a complicated cancer. It's not easy to diagnose, it's not curable at the moment, and I just want to raise the awareness that you can live with myeloma.
“There's so much research happening at the moment, I am hoping and praying that a cure will be found in the very near future.”
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