Royal Sussex County Hospital has scooped a national award for its commitment to patients living with incurable blood cancer.
The hospital was presented last Thursday with the Myeloma UK Clinical Service Excellence Programme (CSEP) Award in recognition of its outstanding care and dedication to people with myeloma, an incurable blood cancer which claims the lives of 3,000 people in the UK each year.
Staff were praised for their efforts to improve patients’ quality of life and eagerness to listen to their needs.
The accolade, awarded by blood cancer charity Myeloma UK, recognises hospitals’ commitment to raising the bar for treatment and providing compassionate care.
Nicola Bateup, Myeloma Nurse Specialist at Royal Sussex County Hospital, said: “We are delighted to receive this award and are very grateful to Myeloma Uk for their recognition. As a hard-working team we strive to offer personalised care and support to an incredible group of patients and navigate the complexities of their myeloma journey.”
Myeloma is especially hard to spot as the symptoms are often vague and dismissed as ageing or other minor conditions.
By the time many patients are diagnosed their cancer has often advanced and they require urgent treatment. This can significantly impact their chances of survival and quality of life.
Monica Morris, Clinical Practice Programme Manager at Myeloma UK, said: “Myeloma is a challenging cancer which keeps coming back and can be difficult to cope with both physically and mentally, so we were really impressed with the hospital’s efforts to ease patients’ burden and make their treatment that little bit easier.
“The team is dedicated to picking up myeloma early, which is why they introduced a clinic for urgent cancer referrals where they can see patients promptly, order any tests needed on the same day and diagnosed them sooner – before too much damage has been done.
“Seeing staff go the extra mile day after day for people with myeloma is truly inspiring.”
John McEvoy, from Haywards Heath, was diagnosed with myeloma in September 2013 after months of excruciating back pain. His cancer had initially been dismissed as a pulled muscle.
He was 59 years old.
By the time his cancer was caught his back was broken in seven places.
John has lost four and a half inches in height as a result.
More than a decade on, the 70-year-old continues to defy the odds and he has now thanked the team at Royal Sussex County Hospital for supporting him through the rollercoaster of treatment and giving him the chance to meet his grandson.
“If not for my team and my wife I would not be here,” said the father-of-two. “When I was diagnosed, they told me that the average life expectancy was six to eight years. I said to the team, if you get me to 70 that will do me and, sure enough, they got me to 70. I have been extremely lucky. Dr Corbett has told me I have years to go yet.”
Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.
It is a relapsing-remitting cancer, meaning that although many patients will experience periods of remission following treatment, the disease will inevitably return.
More than half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through A&E.
While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.
Everything changed for John in May 2013, when he stubbed his toe on the edge of a raised dancefloor at a wedding. “Excruciating pain” instantly shot through his back. Far from easing up though, over the next few weeks, the pain worsened.
“From then on, I had major issues with my back,” John recalled. “I was in agony.”
He consulted his GP who chalked the pain up to a pulled muscle. John also saw an osteopath to no avail. Before long, he was a shadow of his former self.
“I couldn’t sleep in my own bed – I had to sleep in an armchair with my feet up on a stool,” added John, who had to retire as a result of his diagnosis. “I said to the doctor, I’ve got to have an X-ray.”
The scan showed he had seven fractures across his back.
John was quickly diagnosed with myeloma.
“After they told us, my wife and I came back home,” he said. “We had a walk around the garden, we sat down on our swing seat and we both started crying – that lasted about five seconds. Just five seconds and that was it. My wife said, ‘We’ve got to deal with it’. And we did. My favourite saying is, ‘It is what it is’. I wanted to see my daughter get married and have children. I wanted to see my son get married. We just got on with it.”
John had to have cement injected into two of his fractures to stabilise his back.
Sadly, his cancer has returned twice over the past 11 years and John is now about to start a new treatment to try and keep his myeloma at bay for as long as possible.
While the cancer, and intensive rounds of treatment, have taken a toll over the years, John is determined to focus on the positives and all the memories he’s yet to make with his three-and-a-half-year-old grandson George.
“When I was diagnosed, I didn’t expect to get to a stage where I got a grandchild. But my daughter got married and I have a grandson now. I cried when I became a granddad. Our grandson is three and a half and he is absolute joy. We worship him.
“Yes, there are things I can’t do anymore. I can’t play golf or any sports at all and I can’t run anymore, it’s impossible, but my team are very positive which makes me feel positive. You have to be – there’s always new treatments now. I’m just trying to live my life.”