My shoulder pain and ‘diabetes symptoms’ were silent killer – I was given 3 months to live before my son’s 13th birthday

A SINGLE mum’s suspected diabetes symptoms turned out to be incurable cancer.

Jodie Hill, 46, was told she had three months to live just before her son Alfie’s 13th birthday.

It all started when she woke up one morning in October 2020 with excruciating chest pains.

Jodie, a former sales administrator from Wolverhampton, West Midlands, suspected she was having a heart attack.

After a visit to A&E, where she had chest X-rays and an ECG, a test that records the electrical activity of the heart, everything turned out to be clear and it looked like she’d just pulled a muscle in her chest.

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”.

When the shoulder and back pain she’d been experiencing began to get worse and her left eye started bulging, she sought medical advice again.

“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.

“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.

All I heard was incurable cancer, I didn’t hear anything else

Jodie Hill

“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 had more tests and eventually was told in March 2021 that she had multiple myeloma, an incurable blood cancer which the NHS says claims the lives of 3,000 people in the UK each year.

By the time she received her diagnosis, she had holes, known as lesions, in both her spine and skull.

“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 says it’s a relapsing-remitting cancer, meaning that although many patients will experience periods of remission following treatment, the disease will inevitably return.

‘Miracle’ treatment

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.

In August 2023, having undergone several unsuccessful treatments, Jodie said she was told she had two to three months to live – but she was “not ready to die”.

Fearing she would not make it to Christmas that year or see her son Alfie’s 13th birthday in February 2024, Jodie said she started making plans to have these celebrations early.

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.

She decided to go ahead in September 2023 and, thankfully, this treatment worked and she reached remission the following month.

Jodie, 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,” said Jodie.

“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.”

Alfie often asks me, ‘Are you going to die?’

Jodie Hill

Jodie said it’s 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.