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A mum-of-four who found out “by accident” that she has a rare, incurable cancer is now urging other people living with the illness to seek support.
Janice Johnston suffered headaches and blurry vision before being diagnosed with polycythaemia vera (PV) – a disease of the bone marrow which causes the overproduction of red blood cells.
“My illness first emerged in 2008,” said the 50-year-old, from Whitstable.
“I had been feeling very under the weather, and after tests I was diagnosed with what I was told was a blood disorder.
“But in late 2016, I became really ill. My vision was blurry, and my blood pressure was sky high.
“I was given a venesection in Canterbury and during it a nurse said, almost casually, ‘ah yes, you have blood cancer’. I was very shocked.”
After receiving this news, Janice searched online for other people living with the cancer, which is estimated to affect two people per 100,000.
“There was very little information, and certainly no support groups for it,” she said.
“I felt like I was the only one in the world to have it.”
Eventually, she turned to Facebook where she met a group of PV survivors from across the world.
“It’s very helpful,” she said.
“You know you’re not the only one. It’s nice to be able to relate to other people.
“I know what they’re going through – we talk about things like blood levels, and how people are feeling.
“I know there’s no cure, but at least I don’t feel so alone.
“It’s hard, when you haven’t got cancer, to try to understand.
“You don’t look like you’ve got cancer. But one day you’ll feel fine, and the next day you can’t get out of bed.”
Janice will take oral chemotherapy daily for the rest of her life, to manage her illness. Still suffering from bone pain, she has had to leave her job with St John Ambulance and give her much-loved horses to one of her four daughters, Odette.
“I know there’s no cure, but at least I don’t feel so alone" - Janice Johnston
“Having cancer has changed my life,” she said. “However, I do still have my daughters, my dogs and my friends.”
Now, Janice and her family are getting involved with Cancer Research UK’s Race for Life, and are calling on other women to join the fight against the cancer by signing up.
“I’m honoured to be part of Race for Life,” she said. “I’d like to raise awareness of some of the more rare cancers and support anyone who is going through any kind of cancer experience.”
Janice will be guest of honour at the event in Margate on Sunday, July 15.