A Birmingham mother has revealed how severe migraines masked her incurable blood cancer, a diagnosis she calls an “accidental find” after one headache caused stroke-like symptoms.
Simone Williamson, 42, had suffered migraines since her teens.
She claimed doctors often “fobbed off” her pain, saying she had “the highest pain medication” they could offer.
In March 2018, Ms Williamson was rushed to A&E after a severe migraine caused stroke-like symptoms, including slurred speech and paralysis on her right side.
Doctors initially suspected sarcoidosis, an inflammatory condition, but further testing in April 2018 confirmed myeloma – an incurable blood cancer.
By the time her cancer was identified, Ms Williamson said she had holes, known as lesions, in her ribs, pelvis and spine, and soft spots in her skull, necessitating immediate chemotherapy.
The cancer has severely weakened her bones over the last seven years, leading to her breaking her neck twice.
Although she relapsed in August 2023, she is now in remission for a second time.
This Blood Cancer Awareness Month, Ms Williamson is fronting the “Knowledge is Power” campaign. Co-produced by black people affected by myeloma, it aims to dispel taboos around cancer in her community.
Ms Williamson, who lives with her 41-year-old husband Aaron, said: “When I was first diagnosed seven years ago, it was literally elderly people on leaflets who were smiling.
“Nothing was spoken about in the Afro-Caribbean community, but now there’s a hard push for more representation.
“I want people to realise that having cancer isn’t something to be ashamed of.”
According to Myeloma UK, there are more than 33,000 people living with the condition in the UK at any one time.
The charity says myeloma is frequently missed because the symptoms, including back pain, easily broken bones, fatigue, recurring infection and pins and needles, are vague and often linked to general ageing or minor conditions.
Ms Williamson said she had suffered with migraines since the age of 16 and, other than a late-onset epilepsy diagnosis, aged 30, she was otherwise “reasonably healthy”.
It was not until she experienced a particularly severe migraine in March 2018, which caused stroke-like symptoms, that everything changed.
“I was being fobbed off with the migraines, [with doctors saying], ‘There’s nothing we can do’… but then I presented as having a stroke,” she explained.
“I had paralysis on my right side, slurred speech – to be fair, migraines do cause slurred speech – and I had an incredibly sharp pain in my head that I just couldn’t shake.”
Ms Williamson, who previously worked as a teaching assistant but is currently unemployed, was taken to A&E by ambulance, where she underwent scans and further testing.
Doctors firstly said she might have sarcoidosis, but after a bone marrow biopsy and blood tests, she was called back to the oncology department where it was confirmed she had myeloma in April 2018.
Myeloma UK says it is the most common blood cancer affecting black people.
“I was scared,” she said.
“I almost went into autopilot and I thought, ‘I don’t want my daughter to be alone’.
“I’d Googled everything and it said something like two years’ life expectancy or two and a half years, so in my head, I was going to die in two years.
“I started searching for life insurance policies. I had to get my ducks in a row just to make sure my daughter was OK.”
She started chemotherapy in July 2018, then had a stem cell transplant in February 2019.
At this point, she was told she was in remission, but in August 2023 was informed that she had relapsed.
She started chemotherapy again in early 2024 and took steroids, and her treatment finished in July this year, when she was told she was in remission for a second time.
She said she will soon start maintenance chemotherapy and have another stem cell transplant in October.
“Those 18 months of chemotherapy felt like groundhog day,” she said.
“But I was relieved to have reached remission.”
Ms Williamson is having regular check-ups and said she is “grateful to be alive”.
In support of the Knowledge is Power campaign, a joint initiative between Myeloma UK and the Race Equality Foundation, she hopes to dispel taboos around cancer in the black community.
She wants to encourage others to listen to their bodies, advocate for themselves and to donate blood or bone marrow, if they are able to.
“At the end of the day, you know your body best,” she said.
“If you feel something is different and it hasn’t been addressed by the doctor, or you feel like not enough investigations are being done, it is very important to self-advocate.”
She added: “My diagnosis was an accidental find.
“I think that migraine that day was my saviour… and now I’m grateful for the smallest things, just being alive.
“Spending time with my family, making memories, is so important to me. That’s always been important, but it’s extra important now.”
To find out more about the Knowledge is Power campaign, visit: myeloma.org.uk/ref.
