‘I didn’t think I’d see my kids grow up after my sore throat led to incurable cancer – I’m lucky to be here 16 years on’

A mother-of-two who did not think she would see her children grow up after a sore throat led to an incurable blood cancer diagnosis has said she feels “lucky” to be here 16 years on.

Deb Gascoyne, 50, from Hagley, West Midlands, said a precautionary blood test detected her smouldering myeloma – an early form of the blood cancer – in July 2009, aged 34, after she visited the GP for a sore throat.

Deb, who lives with her 50-year-old husband Nick and two children, Rebecca, now 21, and Sam, 19, said the nurse’s last-minute decision to take bloods that day led to an early diagnosis and even possibly saved her life.

While she has relapsed twice from cancer over the years, she has been able to witness many important milestones and has thrown herself into fundraising, with the aim of reaching £250,000 to help fund research into treatments and a cure.

So far, she has raised £248,100 for the charity Myeloma UK – although this figure is likely to be higher as the system is only updated every month – and she is preparing for her final fundraising challenge in May, a cycle from London to Paris, to reach her target.

While Deb has experienced survivor’s guilt and even felt like a “fraud” for outliving the typical prognosis, she said she feels “lucky that (she’s) had 16 years” and wants to give “hope” to others.

“If I think about the friends I’ve lost along the way, and what their families have missed out on, I am remarkably lucky to have a slower and less aggressive form of myeloma,” Deb told PA Real Life.

“I’ve seen my kids hit their major birthdays, I’ve watched my son with his girlfriend and my daughter becoming a paramedic, and you just think, those were things I could only have dreamt of when I first got that diagnosis.

“I am really lucky and really blessed to have seen them through all of that.”

Prior to her diagnosis, in 2009, Deb was an active mother-of-two who worked in Human Resources (HR) – and with her children being two and four at the time, she was ready to “kickstart (her) family”.

It was only when she started experiencing a persistent sore throat that everything changed.

“It felt like a golf ball in my throat and I was wiped out from it every month, so I went to the GP,” Deb said.

“The nurse said, ‘We’ll do a throat swab and if that comes back negative and you’re still having the sore throats, we’ll send for bloods’.

“Then, just before I left, she said, ‘Actually, do you know what? We’ll just send your bloods off now anyway’.”

Deb said this split-second decision to take bloods that day led to an “early diagnosis that (she) might not have had otherwise”.

After further testing, including scans and a bone marrow biopsy, it was confirmed in July 2009 that Deb had smouldering myeloma – an early form of the blood cancer – aged 34.

Feeling “totally shellshocked”, as doctors initially told her she was “too young” to be diagnosed with the condition, she started doing her own research and came across life expectancy statistics.

“At the time, there wasn’t much information from the UK, most of it was from the US, but it was saying two to five years’ life expectancy,” she said.

“So, then there was that whole fear and emotion of not seeing your children grow up, not getting old with Nick – all the things that we had plans for and were a no-brainer in our heads were suddenly up in the air.”

About a year later, Deb’s myeloma progressed to active cancer and she was put on the Myeloma XI trial in 2010, which included chemotherapy.

However, during that year, Deb said she threw herself into fundraising as she “needed to take control of something”, and she first completed the Yorkshire Three Peaks with her family and friends.

She said she did feel “morbid” at times, playing sad songs and even choosing her funeral list, but when she connected with other patients via Myeloma UK’s support network, this helped change her perspective.

“There were two women in particular who, sadly, aren’t with us anymore,” Deb said.

“But at the time, they were really instrumental in helping me realise that I could still have a life and have myeloma, that I could still have a number of years ahead of me.”

Deb received her first stem cell transplant in July 2011 and was then placed on maintenance chemotherapy, which she said kept her in “partial remission” for eight years.

While there was the “fear in the back of (her) head” about relapsing, Deb continued to focus on fundraising, organising events such as a “glitz and glamour ball” that raised more than £30,000.

Speaking about other fundraisers, Deb said: “I then did 40 challenges before I was 40, including reading 40 books, doing a pub crawl around 40 pubs in 40 hours and eating 40 Brussels sprouts in four minutes.

“Then I did £50,000 before I was 50, but in the middle, I did other things like a food and wine tasting event which raised about £11,000 and silent discos and auctions.”

According to Myeloma UK, myeloma follows a relapsing-remitting pattern, where successful treatment can bring the myeloma into remission, but it is likely it will come back again.

For Deb, she said she relapsed in 2019 and underwent her second stem cell transplant in September 2020, before relapsing again in November 2024.

She was given a new maintenance treatment in December 2024, which she is still receiving, and while she has had some “blips” and hospital admissions along the way, she is still continuing with fundraising.

She is currently preparing for her second London to Paris cycling challenge in May, where she will be joined by family, her consultant, two of her clinical research nurses, the wife of a patient who recently died and other patients and friends.

During this time, she is also hoping to step away from work to enjoy quality time with her family.

“My husband’s about to take some time out so that we can make some memories and not wait until it’s too late,” she said.

“I think we would like to see a bit of Europe, and for Nick’s 50th birthday, we’ve got a few gifts of meals out or afternoon tea.

“It will be nice to have time as well to support the kids without trying to split time between work and treatment, so we can make the priorities the right ones.”

Deb said she has had lots of time to “reflect” since her diagnosis, and she often wonders what might have happened if that blood test did not take place.

However, as she approaches 17 years since her diagnosis in July, she feels “grateful” as she did not think she would “have this much time”.

She wants to continue raising awareness of myeloma and to encourage others to “listen to (their) body and be their own advocate”.

“The whole journey with myeloma has been a rollercoaster for everyone, but what’s nice is there is a community out there… and they help you remember that you’re not alone,” she said.

“I’d say to others, try and think positively where you can, because no matter what you read, I like to think that stories like mine show that there is always hope.”

To find out more or to donate, visit Deb’s latest fundraising page at ride.myeloma.org.uk/deb-gascoyne or visit Myeloma UK’s website at www.myeloma.org.uk.