Nottingham man's battle living with incurable blood cancer

A Nottingham man, who is one of 24,000 people nationwide suffering from an incurable blood cancer, says that he is extremely grateful to staff in the Nottingham City Hospital for their commitment and care, especially when he also was one of the first people to catch coronavirus in the city. The hospital's dedication has seen it given an award for its care for people with myeloma.

Paul Caulfield, of Mapperley Park, was 53 when he was diagnosed with myeloma back in 2020, weeks before the start of the pandemic. Myeloma occurs in the bone marrow and 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 departments. 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.

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Mr Caulfield, who was former head of executive education at Nottingham Trent University, said: "I had never heard of myeloma when I was diagnosed and had limited experience of cancer in close friends. The worst thing about myeloma is that it does come back and it comes back hard. I never know how it will go. You can feel great today and be in the ICU tomorrow.

"But I've always felt incredibly supported by all of the hospital staff I've had. What works especially well is the specialist nurses team. I can call them up if I'm worried about anything. I know that they're there if I need them and they have such depth of experience. The other thing I think has been brilliant has been the non-traditional support that's offered at the hospital, like reflexology.

"I've also been very impressed with all levels of doctors in training. They have really got very solid knowledge of myeloma. They work fabulously with the nurses and I look forward to their calls."

Looking back, Mr Caulfield had had symptoms since 2018, but he brushed off his constant exhaustion as part and parcel of a busy and demanding job. Until, in 2019, he bumped into his GP while running a leadership programme for the NHS. His doctor immediately noticed how unwell he looked and booked him in for an appointment the following day.

Mr Caulfield said: "I was very tired for months and I couldn't break that tiredness pattern. I thought it was just stress through work. I had always been quite reluctant to access healthcare in the classic male sense. And until that point, I’d never really needed to.

"By November 2019, things had got worse and worse, but I just carried on. I saw my doctor again on a course I was running and he said I didn't look well and the following day I went to hospital straight from his office. They found some kidney damage, I also had type 2 diabetes and high-blood pressure. It was not until January 2020, after doing some blood tests, that I was sent to haematology. They gave me the diagnosis of myeloma."

He started treatment in early 2020 and immediately began experiencing severe side effects, including fluid retention, which caused him to gain 20kg. He was hospitalised to try and get the fluid retention under control and, unfortunately, was one of the first patients to catch Covid in Nottingham.

Mr Caulfield added: “I was Covid patient 48 in Nottingham. I was told that I wouldn't survive the night and I should start ringing people. Not one to surrender without a fight, I was put on oxygen and I spent six weeks in and out of a coma. I woke at home in a different season with limited memory and severe muscle wastage."

The past four years have taken a huge toll. Mr Caulfield has had to contend with side effects, complications and Covid. His first three rounds of treatment did not go as well as expected and his cancer has returned three times. He said: "I decided to do a Master’s in public health to keep me busy. I’m now a trustee of Nottinghamshire Hospice, I’m a member of the National Institute for Health and Care Research panel, I do patient research for Myeloma UK, and I'm on NICE’s technical appraisal committee. I’m absolutely loving my new immersion in healthcare. I’m still trying to do what I can. For me, it's important to be making an active contribution and not be passive."

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He also married to his long-term partner Greg last year and they’ve been enjoying new experiences and quality time together. He said: "We got married in September last year and actually made our wedding rings after doing a jewellery class, For our wedding list, we asked guests for experiences, so we’ve been working through the surprises that people have gifted us. We had a seven-course lunch at a Michelin-star restaurant on Saturday, we’ve been to Scotland several times and had stays at various hotels. We had massages, all sorts of things. Going through that process helps me, it gets me from day to day."

The help that Mr Caulfield, and others, have been receiving from Nottingham City Hospital has led to it scooping a national award for its commitment to patients living with incurable blood cancer. The hospital’s haematology team was presented today with the Myeloma UK Clinical Service Excellence Programme (CSEP) Award in recognition of its outstanding care and dedication to patients with myeloma, which claims the lives of 3,000 people in the UK each year.

This is the second time Nottingham City Hospital has received the award, which is only handed to a select few hospitals every four years. Staff were praised for their efforts to improve patients’ quality of life and eagerness to adapt and listen to their needs.

Dr Dean Smith, consultant at Nottingham University Hospitals Trust, said: "The myeloma team at NUH strives to provide the optimum care and outcomes for our patients and this award is a reflection of the hard work, dedication and compassion shown by all those involved in the myeloma service. We thank Myeloma UK for this recognition and their ongoing support.”

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.

Pippa Foster, director of lived experience & clinical practice at charity Myeloma UK, said: "Myeloma is a challenging cancer which keeps coming back and can be really difficult to cope with both physically and mentally, so we were hugely impressed with the hospital’s efforts to ease patients’ burden.

"Thanks to the outreach service patients can receive chemotherapy from the comfort of their own home, sparing those further afield from exhausting back-and-forth trips to hospital. Crucially, it allows patients to regain a much-needed sense of control and autonomy they may feel they’ve lost since their diagnosis.

"To see the team going the extra mile day after day to give those affected by myeloma a fighting chance to live well for as long as possible is truly inspiring."

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