A single mother who feared she would miss her son’s 13th birthday after suspected diabetes symptoms turned out to be incurable cancer continues to defy the odds nearly four years post-diagnosis. Jodie Hill, 46, was diagnosed with multiple myeloma, an incurable blood cancer, which the NHS says claims the lives of 3,000 people in the UK each year, in March 2021.
She said her symptoms were initially thought to be a pulled muscle and then diabetes, and by the time she received her diagnosis, she had holes, known as lesions, in both her spine and skull. In August 2023, having undergone several unsuccessful treatments, including five types of chemotherapy, Jodie said she was told that she had two to three months to live, but she was “not ready to die”.
After being offered a new “miracle” treatment, which only gave her a “one in three chance” of survival, she decided to take a leap of faith and try it, and she has been in remission since October 2023. Jodie, from Wolverhampton, whose son Alfie will turn 14 in February, is currently having immunotherapy and still struggles with the side effects of her treatments, but her focus is making as many memories as possible.
“I just thought, I’m not ready to die,” Jodie said. “I remember them telling me, ‘We’ve got no more options’… but after taking this new drug, the next month I was in remission – and I’ve been in remission since October 31 2023. I genuinely do think it’s a miracle.”
Jodie, a former sales administrator, said it all started when she woke up one morning in October 2020 with such excruciating chest pains she thought she was having a heart attack. She called NHS 111 and was advised to go to A&E, where she underwent an ECG, a test that records the electrical activity of the heart, and chest X-rays.
She said: “Everything was clear, but it looked like I had pulled a muscle in my chest.”
Jodie said blood tests and further examinations revealed she was “severely anaemic” and had symptoms of diabetes – but she knew that, with some diet and lifestyle alterations, she could manage this. During this time, however, she noticed that her right shoulder pain, which had been ongoing for several months, had moved to the centre of her back and became “unbearable”.
“By the Christmas Eve, I couldn’t drive because of the pain in my back,” Jodie explained. “I was so tired, I was literally waking up on a morning, seeing to my son, getting on the settee and sleeping, that was my life.”
The “constant niggle” in her back worsened, to the point where she could not walk up and down the stairs and she relied on family members to carry her and help wash her. By early 2021, Jodie said she had lost around four stone, dropping from a size 20 to 12, and she knew “something was wrong”.
When her left eye started bulging, she sought medical advice again and was told to have a CT scan of her brain, followed by more blood tests and eventually, Jodie was told she had cancer in March 2021.
“The consultant said, ‘You’ve got five lesions on your skull and you’ve got a 2.1cm lesion behind your eye, in your eye socket, so that’s why it’s pushing your eye out’,” Jodie explained. “They said, ‘We think it’s an organ cancer and it has spread and is very aggressive, and we need to get treatment into you now, however we don’t know what it is’.
“I just burst into tears, hysterical, and then stopped and said, ‘OK, I’ve got a 10-year-old. I’m a single mum, I’m not leaving my son without a mum, how do we beat it?’”
Jodie said she then underwent a bone marrow biopsy and an MRI scan on her spine and, on March 10 2021, it was confirmed she had multiple myeloma. “All I heard was incurable cancer, I didn’t hear anything else,” Jodie explained.
According to the charity Myeloma UK, myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK. The charity said it is a relapsing-remitting cancer, meaning that although many patients will experience periods of remission following treatment, the disease will inevitably return.
Jodie said she received five different types of chemotherapy over the next two years, along with a stem cell transplant, but her cancer was too aggressive to fully respond to treatment. During this time, she said her hair started “coming out in clumps”, so she “took control” and shaved her head, and she experienced “horrendous” fatigue.
By 2023, Jodie said the myeloma had started weakening her bones and caused one of her vertebrae to collapse – and she was told by her consultant that they were “running out of options”. “They wanted me to have another stem cell transplant, but in August, I was told we couldn’t go forward with this because they couldn’t guarantee remission,” Jodie said.
“I was sat there, thinking, I’ve come here to discuss a transplant and now we’re discussing me dying. My sister was with me and she asked, ‘How long will we have with her?’ And I expected them to say 12 to 18 months, but they said, ‘Two to three months’.”
Fearing she would not make it to Christmas that year or see her son’s 13th birthday in February 2024, Jodie said she started making plans to have these celebrations early. Jodie said she was then told she had only one option left to try, a new treatment known as belantamab mafodotin, which had a “one in three chance” of working.
Jodie decided to go ahead in September 2023 and, thankfully, this treatment worked and she reached remission the following month in October. “They told me that if the belantamab didn’t work I would have two to three months left, but it’s more than 12 months down the line and I’ve proven them wrong,” she said.
Jodie said it has been a “rollercoaster” since her diagnosis, but with her strength and support from loved ones and Myeloma UK, she has been able to overcome the challenges she has faced. Although she continues to receive immunotherapy treatment and often struggles with fatigue and brain fog, Jodie said she is excited for the year ahead.
Along with spending time with her son Alfie, who is her “driving force”, she said she is looking forward to her niece’s 18th birthday in March and her best friend’s wedding in June. “I have my bad days, but I don’t get down very often because it’s not worth it,” she said.
“You either sink or swim, and if I sink, everyone loses. Alfie often asks me, ‘Are you going to die?’ And I can’t tell him no because I don’t know, but all I say is, ‘I’m doing everything I can not to’.”
She added: “We need more money for research, I need a new treatment. This one’s going to last for years, but when it doesn’t, we need something else and that’s why donations to Myeloma UK are vital.”
For more information and support, visit Myeloma UK’s website at myeloma.org.uk or call its infoline on 0800 980 3332.