Introducing Nic Neale – our specialist nurse for young people with cancer

It takes an incredible person to support young people with cancer through all their ups and downs…and an incredible person is exactly how we’d describe Nic, our clinical nurse specialist for teenage and young adult cancer.

Over the last few years, Nic has supported many young people through cancer, like 20-year-old Emily from Taunton, who was given a terminal diagnosis by her doctor. We will revisit how Nic has been helping Emily later in the article, but for now, let us give you some background into how Nic came to be in her role.

Nic completed her nurse training in Leicester back in 2000, and in the same year she moved down to the south west to work at Musgrove Park Hospital.

“My first role at the hospital was in orthopaedics on Sheppard ward, where I had a great two years,” she said. “My passion as a nursing student was always in haematology though, so I moved to Ward 9 where I stayed for about 17 years.”

It was in 2017 when Nic moved into her current job as a specialist nurse for teenagers and young adults with cancer – a role funded by the Teenage Cancer Trust that involves supporting local 16 to 24 year olds with cancer.

“I had no hesitation in applying for this job when it came up,” said Nic. “I see my role as not just providing nursing care, but also getting to know and finding out more about each individual patient I see, and discovering their needs and interests beyond their cancer.

“I support patients from diagnosis, through to living well and beyond cancer, but also the patients that need palliative and end of life care.

“Research acknowledges that brain development doesn’t stop until someone reaches their mid-20s, so I feel it’s important for me to support patients of this age range, as we know this is a crucial stage of social and emotional development.

“The people I support varies from school leavers, those off to college or university, to those who are married or living with their parents, or are even parents themselves.

“While many have that glimpse of freedom and independence when reaching adulthood, there’s always that conflict for some, of needing to come back home for support during their treatment, a time for social regression and isolation, often leading to chaos in their normal routine.

“It can be frustrating for young people to accept these limitations. Part of my role involves supporting them through this stage, exploring with them their thoughts and feelings and managing their expectations, while empowering them to try to keep as much independence as possible.

“It’s often their first experience of healthcare while managing a life-limiting illness diagnosis, and navigating the system that goes with that is so tough for them. I’m here to advocate for them and always remind them that it’s so important that they remember who they are as a person beyond their diagnosis.

“Sadly, many young people tend to regress or become isolated from their friends once they’re given a difficult cancer diagnosis. It may be that their friends have gone off to university or are still out having fun, playing sport, drinking, going to the shops and socialising, which can be frustrating as they aren’t always well enough to go off and lead that sort of life anymore.

“For someone being cared for in hospitals like Yeovil (non-designated) or Musgrove Park (designated), it can be even more isolating, as the make up of our demography inevitably means we have a predominantly more elderly population on our wards.”

Nic says she prefers to start seeing a person from the moment they are diagnosed, which helps to build up trust and that all-important relationship with them.

“While a young person may see many different healthcare professionals, I can be that one consistent face by their side throughout their treatment,” she continued.

“I very much walk their path through their diagnosis, building trust, and I see them while they are in our day unit, or if they’re an inpatient.

“I even visit them out in the community, and right up until two years beyond their end of treatment, which is actually when I feel my role really comes into its own, as I can encourage and help them to regain their confidence and really get back into doing the things they love.”

Earlier we introduced Emily, who is one of the young people who Nic has supported. Emily was just 12 when she was first diagnosed with Medulloblastoma – a brain tumour – and was 14 by the time she finished chemotherapy treatment.

Sadly, Emily relapsed at the age of 17, when the tumour developed in her spinal cord.

“A routine MRI scan picked up two small lumps at the bottom of my spine and a bigger lump in the middle," Emily explains. "I needed an operation to remove the tumour in the middle, but the two tumours at the bottom were deemed too risky to operate on.

“I had started getting my life back together, and it hit home that I’d have to go through it all again – it felt like my life was falling apart.

“What hurt me the most was that I had lost friends along the way. I was really upset that I’d have to have chemo again as I’d had really bad side effects the first-time round.

“I had my operation in September 2020 at Bristol Royal Hospital for Children to remove the tumour in the middle, and a meeting was scheduled for a few days later - I thought this was just to discuss what they did in the operation and what treatment I needed.

“I was in a wheelchair and still recovering from the operation, so initially my mum went to the appointment alone as we thought that was easier. They told her that I needed to be present too, and that worried me.

“I went into the meeting thinking: ‘I’ve fought cancer before; I can do it again’. But then I got told that my cancer was terminal and that I only had two years to live. It was the worst appointment ever.

“I went through a lot of emotions. I was initially shocked to hear the news, then I broke down in tears and felt like my world was falling apart. I was so heartbroken.

“I was also very scared as I knew someone who had died of cancer, and I kept thinking about her passing away. My mum was angry and in disbelief.

“I was still restricted to having one parent there due to COVID regulations, and my mum had to break the news to my dad over the phone. She went into another room to do it as I didn’t want to hear it again. They also had to break the news to my little sister, who was only 10 at the time.

“My family and I are very open about the fact that my cancer is terminal. We find it easy to talk to each other about it and it has definitely helped me to cope with the fact that I will end up dying of cancer.

“It has also helped me embrace it and not be so sad, as it’s allowed us to start conversations about things like my bucket list. If I didn’t have those conversations with them, then we wouldn’t have been able to plan out all of the things I want to do before I die.”

Around a month after she was given the terminal diagnosis, Emily met Nic.

“It has been incredible to have the support of Nic, and my mental health would have been in a very different place without her,” said Emily.

“We meet once a month for a coffee and I feel like I can talk to her about anything. She’s happy to listen and she understands - she helps me look at the positive side of things rather than just focusing on the negative.

“If I have any questions that she can’t answer straight away, she goes away and finds out the answers for me. She’s also helped me ensure that my chemo stays on track. I know that I can also ring or text her if I need her at any point between our meetings.

“I’ve had open chats with Nic about my diagnosis. Part of my bucket list is going to lots of theme parks and Nic has helped me by writing a letter which I can present to them to get a fast pass as I can’t stand around in queues.

“Nic also told me about a charity that helps you make jewellery to leave behind as gifts. I’m going to make something for my parents, my sister and my grandparents. I always wear a necklace, so I plan to leave my sister the chain from that and then make a pendant with my fingerprint on. It will be nice to give her something so personal and special to remember me by.

“Nic also helped me get a grant to decorate my bedroom and has told me about family holidays which we can get for free. Things like that help alleviate the financial impacts of cancer.

“I’ve also had support from Jax, Teenage Cancer Trust’s Clinical Nurse Specialist in Bristol. Nic can’t travel up to Bristol for my appointments, so Jax is there for me. She was there when I received the results from my scan in January 2023 to say the cancer had spread. She comforted me and let me know that she was there in case I needed her support. I really appreciated that.

“She can also help me organise appointments when Nic is off. It’s great to have a second person who I can contact when I need them.”

Amy Harding, Director of Services and Impact at Teenage Cancer Trust, said: "The work that Nic and many others like her do is vital to young people.

“Teenage Cancer Trust is the only UK charity dedicated to providing specialised nursing care and support for young people with cancer.

“Colleagues like Nic provide teenagers and young adults with the very best care and support, while being a consistent, reassuring, go-to person for them and their families. Thanks to Nic and all her colleagues for putting young people, like Emily, first."

Every day, seven young people aged 13-24 hear the words “you have cancer”, and they will each need specialised nursing care and support to get them through it. Teenage Cancer Trust is the only UK charity dedicated to meeting this vital need – so no young person faces cancer alone.

Emily’s family have started a GoFund me page to help her fulfil her last wishes: https://www.gofundme.com/f/d2425-making-memories