A HUGE ‘cheers’ to everyone who supported Basildon Hospital’s Macmillan team by helping to raise more than Â£5,200 at the World’s Biggest Coffee Morning last week.
The money raised helps support Macmillan services, including the first fully dedicated Macmillan nurse for cancer of unknown primary in Essex, who is celebrating one year in the job.
Basildon University Hospital is the first in Essex to have appointed a dedicated cancer of unknown primary (CUP) clinical nurse specialist, and Macmillan recognising the importance of her role, has adopted Katy as a Macmillan professional.
Katy Low was appointed in October 2013, following national guidance from NICE.
Katy’s patients are a unique group, who find themselves in the unfortunate situation of learning they have advanced cancer, but that the exact type cannot be identified. Cancer of unknown primary is the fourth most common cause of cancer death.
She said: “The best bit of my job is definitely my patients. They are so resilient and approach their journey with admirable resolve and positivity.
“A lot of patients liken it to living with a ticking timebomb. They don’t know what they are dealing with. It is a very small patient group but they have very complex needs.
“Patients are referred to the CUP service once all investigations are complete and a formal diagnosis has been reached, and often they are understandably devastated. I offer a different type of support because it’s mainly about managing their expectations.”
There is a lot of behind the scenes co-ordination, multi-disciplinary team meetings, meetings between hospitals, scans and so on, which patients are not aware of.
There is a team of seven at Basildon Hospital dealing with CUP diagnoses, but Katy is the only one in a full time CUP dedicated role. She provides a link between the clinicians and the patient, keeping the patient up to date with their care and providing them with a better experience.
Katy added: “It was all happening before my appointment, but now it’s more structured and the patients know they can call me at any time to find out what is happening. It’s a really good job.
“In three to four years’ time I can see there being a large productive service, if for a small number of patients. It’s very exciting to be part of that process and to be making a difference to these patients.”
There have been 50 patients since the service began, and a quarter of those have had their primary cancer diagnosed. This means their active treatment can be more targeted.
Katy said: “Chemotherapy will always be chemotherapy. It’s hell on the mind, body and soul. But it can be more targeted and hopefully give the patient more time.”
A former staff nurse and ward sister on Orsett Ward, Katy is used to looking after those with life- limiting and terminal illnesses. Although she recognises that as CUP nurse, she is a lot more emotionally invested.
“I’m a lot more involved,” she explains. “On Orsett Ward you make them feel better so they can go home or you ensure they’re as comfortable as possible if they can’t. In my new role however, I meet and speak with the patients regularly, so I build a relationship with each and every one of them. I can picture their daily lives so when that life ends, it’s harder to deal with.”
Katy has already made a good impression on her patients. The daughter of one, who wished to remain anonymous, said:
“My mum was diagnosed with cancer of unknown primary last year. As soon as we received the diagnosis, we were put in touch with Katy. Having her there to answer our questions has been hugely reassuring.
“With an unknown primary it’s easy to feel like you don’t belong to any groups of cancer patients. You don’t necessarily have the same care plan as patients who have a cancer like lung or breast, and you can feel quite alone.
“We looked up cancer of the unknown primary online when my mum was diagnosed. There wasn’t as much information as there is for other cancer types and some of what you read is quite scary. That’s why we were so grateful to have
Katy on hand to answer our questions and give us accurate information.
“She has been able to advise my mum on things like finances, medication and side effects of treatment. It’s so reassuring to have that one point of contact who knows your case and can answer any questions you have.
Katy has been something of a ‘light in the storm’, helping us to navigate what could have been a very scary journey with a bit more ease.”