A MUM’s severe migraines were “fobbed off” by doctors until she ended up in hospital – where testing showed she had holes in her ribs, pelvis, spine and skull.
Simone Williamson, 42, from Birmingham, had suffered migraines since her teenage years but claims she was often dismissed by doctors, who said they couldn’t offer her stronger painkillers.
Simone Williamson, 42, suffered migraines since her teenage years but was often fobbed off by doctors[/caption]
She was diagnosed with blood cancer than had caused her bones to weaken, leading to lesions[/caption]
However, in March 2018, Simone got a migraine so severe she started displaying symptoms of a stroke – including slurred speech and paralysis on the right side of her body.
The mum was rushed to A&E, where doctors initially told her she might have sarcoidosis, an inflammatory condition.
But in April 2018, testing confirmed she in fact had myeloma, an incurable blood cancer.
By the time Simone’s cancer was diagnosed, she said she had holes – known as lesions – in her ribs, pelvis and spine, and soft spots in her skull, and she needed to undergo chemotherapy as soon as possible.
The cancer severely weakened Simone’s bones over the last seven years, causing her to break her neck twice.
In honour of Blood Cancer Awareness Month, Simone is fronting a campaign called Knowledge is Power, to dispel myths around black people being affected by myeloma.
Simone, 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.”
Before her diagnosis, Simone had never heard of myeloma, but 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.
Simone suffered from 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.
My diagnosis was an accidental find. I think that migraine that day was my saviour
Simone Williamson
“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.”
Simone, who previously worked as a teaching assistant, was taken to A&E by ambulance, where she underwent scans and further testing.
Doctors initially 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.
Simone and her husband Aaron[/caption]
Simone using a Zimmer frame to walk in hospital, after suffering side effects from chemo[/caption]
Simone having the stem cell transplant[/caption]
“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.”
Simone said she found out that, by the time she was diagnosed, she had lesions and soft spots throughout her body, with her daughter joking that she was “a crumpet”.
The subtle signs of myeloma
THERE are over 33,000 people with myeloma in the UK.
Despite being the third most common type of blood cancer, myeloma is frequently missed, as its symptoms are vague and often linked to general ageing or minor conditions.
Symptoms of myeloma may include:
- Back pain
- Other bone pain (often in your hips, shoulders or ribs)
- Easily broken bones (fractures)
- Feeling very tired for no reason
- Recurring infection
- Muscle weakness
- Shortness of breath
- Headaches
- Feeling very thirsty and needing to pee more often than usual
- Losing weight without trying
- Confusion or drowsiness
Sometimes myeloma does not cause symptoms at first. You may find out you have it after a blood test for another reason.
She started chemotherapy in July 2018, which caused side effects of peeling skin, swelling and nerve damage, known as peripheral neuropathy, and she needed a walking frame to move around in hospital.
“I had the worst case of peripheral neuropathy that the hospital had seen,” she said.
“I had pins and needles from my toes to my knees and from my fingertips to my elbows, and I couldn’t detect heat or cold.”
Simone later had a higher dose of chemotherapy, which caused her to lose her hair, eyelashes and eyebrows, before having a stem cell transplant, which replaces damaged stem cells in February 2019.
At this point, she was told she was in remission, with no evidence of disease, but Simone said it took her “ages to recover” and her two brothers had to carry her up the stairs because she was “so weak”.
‘Rock bottom’
Over the following years, Simone said she started to process her “traumatic” diagnosis and experienced severe anxiety, but on New Year’s Day 2020, she wanted to get “back on track”.
“Cancer had taken my 2018 and my 2019 and then we were locked in due to Covid,” she said.
“So in January 2020, I thought, ‘Right, Happy New Year everyone. This is my year, the year I get my life back on track’.”
However, in summer 2023, Simone noticed she had back ache, pain in her ribs and she felt “extra tired”.
Her doctor requested blood samples and in August 2023 she was told the cancer had come back.
Simone was told she had relapsed in 2023[/caption]
Simone with her late brother Evan, her mother Beverley and her baby brother Kristian[/caption]
She went into remission for the second time this year[/caption]
“I felt like I’d hit rock bottom,” she explained.
“I thought, ‘Not again, I’m not ready for this again’.”
Simone started chemotherapy again in early 2024 and took steroids.
Her treatment finished in July this year and she was told she was in remission for a second time.
The mum 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.”
Simone is having regular check-ups and said she is “grateful to be alive”.
She is looking forward to her brother’s wedding next summer and hopes she is strong enough to “walk down the aisle”.
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.”
You can find out more about the Knowledge is Power campaign here.
Simone is fronting a campaign called Knowledge is Power[/caption]
