‘My multiple sclerosis was masking incurable blood cancer symptoms – I was given between three and seven years to live’

A content creator whose multiple sclerosis was masking the symptoms of incurable blood cancer has outlived her prognosis of three to seven years, reaching remission for the first time in nearly a decade.

Simone Boothe, 47, who lives in Catford, south-east London, was diagnosed with myeloma in January 2017 after collapsing four times, including while in the shower, in the space of two months.

She said it took several weeks of testing and four blood transfusions before doctors realised her crashing haemoglobin levels, which led to the collapses, were caused by the incurable blood cancer.

Moreover, having been previously diagnosed with multiple sclerosis (MS) – a currently incurable condition which affects the brain and spinal cord – Simone believed her symptoms were purely MS-related.

She was initially given three to seven years to live and underwent 41 rounds of chemotherapies, alongside other treatments, but after being offered a new treatment in 2025, she has finally reached remission.

She has since launched a YouTube channel @GildedCloud10, documenting her MS and myeloma to showcase the realities of living with two incurable conditions and to highlight: “Every cloud has a silver lining.”

“It was a lightbulb moment because it wasn’t until that point when I thought, ‘Oh, you’ve been having these symptoms and blaming your MS’,” Simone told PA Real Life.

“So, if I didn’t have MS, I would have gone to the doctors way sooner.

“Bone pain, muscle pain, fatigue, they are common MS side effects and symptoms, so you’re not going to pick them up for myeloma if you have them on a daily basis anyway. It just seemed normal to me.

“There’s no way anyone would have realised that I had cancer without the blood test.”

Simone said she had been experiencing the symptoms of MS, which can include fatigue, blurred vision, numbness in the body and muscle cramps, for more than a decade before her official diagnosis in 2014.

After taking time to process this and adjusting to treatment, she said she had hopes of launching her own “dream” craft business after reducing her usual working hours at a local charity.

However, in October 2016, Simone collapsed in the street while walking to work one morning.

“I was in a great place, living my best life,” she said.

“That morning, I literally got up and I remember coming out the shower and thinking, ‘It’s going to be a good day today’, because I didn’t have many of the aches and pains I can have with MS when I wake up.

“I headed out the house, I got halfway, maybe three, four minutes, and collapsed in the street.”

Simone said she was blue-lighted to hospital, where it was discovered her haemoglobin levels were extremely low, and she was told she needed a blood transfusion as doctors feared she had internal bleeding.

After eight days in hospital, with doctors questioning whether Simone had suffered a “major accident” and requesting further tests, she was able to return home – but no-one had any answers.

She then collapsed again around two weeks later and said it continued to happen approximately every fortnight, four times in total.

“Wherever I was, I’d just be out cold, and I’d get maybe only 30 seconds’ heads up to be able to get myself in a safe position or try and call someone to alert them that it’s about to go down,” she said.

At one point, Simone said she blacked out in the shower and her flatmate had to break down the door to get to her.

However, having booked a non-refundable family holiday to Jamaica for the December, Simone was determined to go on the trip, and she was able to receive another blood transfusion from her doctors before flying.

She believed the acute muscle pain, fatigue and dizzy spells were MS-related, but when she returned to the UK for another consultation in January 2017, she received “heartbreaking” news.

“I’ll never forget, January 4 2017, I’d been back in the country two days, I didn’t even have milk, eggs or bread,” she said.

“I went to the clinic and the consultant said, ‘You have multiple myeloma’, which I’d never heard of, and she explained it is incurable but there is treatment.

“But after her saying, ‘it’s incurable’, the rest was a blur.”

According to Myeloma UK, myeloma mainly affects those over the age of 65, and the most common symptoms include bone pain, recurring infection, kidney damage and fatigue.

The charity says, at any one time, there are more than 33,000 people living with myeloma in the UK, and the condition is two to three times more common in black people.

Being 38 at the time, Simone said even her consultant was shocked to deliver her diagnosis – and knowing she now had a second incurable condition was “devastating”.

“I ended up bursting into tears at the checkout in Iceland – I just started weeping,” Simone said.

“I just had to pull myself together enough to get the bus back up the hill and, as I shut the front door at home, I just broke down in floods of tears.”

After further testing, Simone was told a few weeks later she had a second cancer called myelodysplastic syndrome (MDS) – but it later turned out to be a misdiagnosis.

She said she was initially given between three and seven years to live, but with her unwavering positivity, she thought: “Nope, I’m going to be here much longer than that, that’s not happening.”

She continued: “I couldn’t tell people if I’m going to be here next week, never mind next year… but people underestimate the power that (having a positive mindset) can have.”

Over the following years, she went through four treatments, including chemotherapies and G-CSF injections to “boost (her) immune system”, but none managed to keep her myeloma at bay for long.

She continued to receive fortnightly blood transfusions to prevent collapses, but her mobility severely deteriorated and she ended up requiring the use of a mobility scooter for five-and-a-half years.

“I couldn’t get from the car park in the hospital to my clinic without collapsing in the corridor,” she explained.

By 2024, Simone said she was fast running out of treatment options, until she was offered the newly-approved drug elranatamab in February 2025 – and by May, she was in remission for the first time in nearly 10 years.

Simone’s medical team at King’s College Hospital NHS Foundation Trust has now scooped a national award for its commitment to patients with myeloma.

Staff were presented with the Myeloma UK Clinical Service Excellence Programme (CSEP) Award in recognition of their outstanding care and dedication.

Simone said: “(The new treatment) has been absolutely, mind-blowingly, unbelievably successful. I feel like it saved my life.

“I was running out of treatment options and, overall, I was having chemo almost back-to-back for five-and-a-half years… but I had complete faith in my team. They have been absolutely remarkable from day one.”

Simone is determined to make up for lost time and, now that she can walk again, she is focused on regaining muscle strength and slowly building an exercise routine.

While she still has check-ups, she is already planning holidays to Albania and the Dominican Republic and she is enjoying posting content on her YouTube channel, where she hopes to raise vital awareness.

She said humour and positivity, along with the support of friends, family, other patients and the charity Myeloma UK, have helped her through her darkest times, and now she feels there is “so much to live for”.

“It does feel like a rebirth… and I just can’t stop planning,” she said.

“The dreams I had and the things I wanted to do that suddenly felt like they’d been taken away, or that I wouldn’t be around long enough to achieve them, now they’re back on the table.

“Until it happened, I had not realised I had given up on the idea of walking again or ever being in remission. I’ve been on cloud nine since… I can’t stop smiling.”

For more information and support, visit Myeloma UK’s website at myeloma.org.uk.

Visit Simone’s YouTube channel at www.youtube.com/@GildedCloud10.