An Essex mum whose “brain fog” turned out to be caused by incurable blood cancer has joined the race to get people diagnosed before it’s too late.
Julie Jones, from West Hanningfield, had been experiencing what she assumed were tell-tale signs of the menopause, including fuzzy memory and fatigue, for months when blood tests flagged something far more sinister.
She was diagnosed with the incurable blood cancer myeloma in 2022.
She was 55 years old.
Julie is now backing charity Myeloma UK’s Spring Appeal to help rewrite the future for people with myeloma.
By sharing her story, the mother-of-two hopes to empower the public to spot the signs and speak to their GP as soon as possible if something doesn’t feel right.
“I thought I was in menopause because my symptoms were mainly fatigue and brain fog,” recalled Julie, now 58. “It got to the point where I literally had trouble remembering things I had done the day before. I would send an email asking my colleagues to action something and then the next day I would make the same request again, at which point I would be met with a puzzled expression.
“I had a high pressured and very busy job in an investment bank and trying to balance that with family took a lot of my time. Like a lot of women I didn’t focus on myself that much. But I remember having to take to my bed, at times, something I’d rarely had to do before.
“In hindsight I’d probably had more colds that had reached flu levels, whereas before I was never a sickly person. But it didn’t ring alarm bells, and you don’t generally rush to the doctor with these types of symptoms. That’s why I really think we need to raise awareness of myeloma and educate the public as well as GPs about the symptoms.”
According to Myeloma UK, myeloma occurs in the bone marrow and currently affects over 35,000 people in the UK.
Despite being the third most common type of blood cancer, myeloma is frequently missed, as its symptoms, including back pain, easily broken bones, fatigue and recurring infection, are vague and often linked to general ageing or minor conditions.
1 in 4 people wait more than 10 months for a diagnosis.
Yet, a simple blood test can, in most cases, pick up signs of myeloma.
While it is incurable, myeloma is treatable in the majority of cases. Treatment can lead to periods of remission but the cancer will inevitably come back.
Looking back, Julie had had unusual symptoms, including lingering colds and fatigue for some time. But it’s only when the brain fog started setting in, making her forget what she’d done at work from one day to the next, that she booked an appointment with her GP.
She assumed she was in early menopause and would get prescribed HRT.
Her doctor ordered a blood test. Two days later she received a call from the surgery asking her to come in the next day.
“In hindsight I was quite fortunate to be diagnosed when I was,” she went on. “I went to the doctor thinking it was the menopause and that I would be put onto HRT. When they called and asked me to come in the next day my first thought was that they were overreacting. I went in and they said they were 95% certain that I had myeloma. The delivery was quite blunt. They weren’t messing about. I remember the words blood cancer and not curable but I can’t remember much about what was said after that. The information certainly needed to be digested. It turns out the lab had done the requested blood tests and then called the surgery saying some of the results weren’t normal and did they want the lab to run further tests.
“The doctor did say, ‘You probably don’t feel like it right now but you’re very lucky it was found’. It was quite a difficult time. My daughter was at university and she was just about to do her year-end exams and my son had started a new job so we decided not to tell the kids for a little while.”
Julie started chemotherapy, known as DVTD, straightaway followed by a stem cell transplant in February 2023. She has thankfully been in remission for the last three years.
She is still on maintenance treatment to keep her cancer at bay for as long as possible.
While she is doing well, the treatment and side effects have taken a toll over the years, both physically and emotionally. Julie has had to make peace with the fact that life as she knew it will never be quite the same.
“Once I had completed the last two cycles of DVTD, I suddenly started to consider what I’d been through,” she said. “I’ve never been a ‘Why me?’ type of person but you do start to think about what the ongoing impact might be and how life may change going forward. I took on the services of a counsellor. I was a bit sceptical at first but it was the best thing I did. She really helped me to figure out what my priorities had been and how far down that list I had been. She encouraged me to change my approach and mindset toward different things.
“The biggest lesson I’ve probably had to learn is that things weren’t just going to revert back to what they had been. Life post-diagnosis and treatment is not the same as it was before. It’s been a learning curve in terms of understanding my new normal, what my limits are now. The fatigue is a big thing and my maintenance drug has side effects so I have gastric issues and cramping. I’ve not been able to return to work. Life is different but I’ve set my expectations quite well, to make it manageable.”
Sarah Secombes, Head of Public Fundraising at blood cancer charity Myeloma UK, said: “A myeloma diagnosis turns people’s lives upside down and changes everything. But at Myeloma UK we’re determined to create a future where it doesn’t. We are here so no one faces myeloma alone. We raise awareness of the symptoms of myeloma so people are diagnosed as early as possible. And since 1997, Myeloma UK has driven every single treatment approval for myeloma so people like Julie can look forward to a brighter future, free from side effects and all the complications that make living with this cancer such an uphill struggle. We’ve delivered huge progress over the last few years, but we need your support to go further, faster for patients. With your help, we can give people more time, better lives and new ways to a cure.”
In a bid to support others, speed up diagnosis and build a brighter future for people with myeloma, in 2024, Julie joined Myeloma UK’s patient advocacy panel.
Over the last 18 months, she has met with MPs urging them to put the needs of patients at the top of their agenda and been invited to represent the myeloma community at the House of Lords.
“It’s really important to get people diagnosed early and for people to have many treatments available to them, because we don’t know what the future will hold,” she said. “Since I was diagnosed new treatments have been approved – Myeloma UK have done an amazing job driving these initiatives forward to approval. Supporting Myeloma UK’s work has given me a strong sense of purpose. It’s a way for me to thank the charity for all they do for patients and to enable this work to carry on.
“We, as patients, are so grateful. And I know that, should I relapse, it’s opening up more opportunities to follow different lines of treatment. Things keep changing and there are many reasons to be hopeful and positive.”
Julie is determined to focus on the positives, make the most out of the time she’s been given and create memories with her family. She welcomed her first grandchild in 2024 and is looking forward to celebrating her daughter’s wedding in August.
“We’re a very close family,” she said. “You have points in the early stages where it’s very hard to be positive. You wonder if you’ll get to be there for all these golden moments, these important events in your children’s lives. My daughter is getting married this year so it’s an exciting time and we were blessed with a granddaughter. She’s a year old now and she’s absolutely gorgeous and suitably spoiled. It’s nice to have this new lease of life.”
To make a donation to Myeloma UK’s Spring Appeal go to: myeloma.org.uk/future
