‘It’s not just the patients who are affected, it’s often the entire family’

A Trim-based Clinical Nurse Specialist is urging carers of brain tumour patients to seek support and care for themselves as well as their loved ones.

Each year, approximately 800 people are diagnosed with a brain or other central nervous system tumour in Ireland, including around 60 children and young people.

That’s 800 families who each year have to come to terms with news that inevitably turns their lives upside down.

On Tuesday, October 22, as part of National Brain Tumour Awareness Week, Brain Tumour Ireland will host an evening webinar ‘Who cares for me? Challenging the carer to care for themselves too’.

According to Kelsey Waters who works as a nurse in the Acute Oncology Service and also in education in Beaumont Hospital, supporting family members is just as important as supporting the patient themselves:

"Not enough people know how they can support family members of people with brain tumours,” said Kelsey

"Sometimes it could be just as simple as sitting down and having a cup of tea and just letting someone vent and just listening to them," she added.

"It could be encouraging them to bring the dog for a walk and getting a bit of fresh air.

"For the wider public, just be conscious that if people are a little slower in the shops, there could be a reason for it, it is about being kind and being mindful."

Kelsey says receiving a brain tumour diagnosis is devastating not just for the patient but for the whole family. It her role to educate loved ones on the disease and how they can best support their loved one while coming to terms with the news themselves.

"One of the roles I have is educating patients and family members, treating them with chemotherapy or immuno-therapies or hormonal therapies and supporting them throughout their treatments in the Oncology Department in Beaumont," said the Trim-based nurse.

"It’s not just the patients who are affected, it is often the entire family," she added.

"When they come in, you can see that their whole lives have been turned upside down so it’s important in my role to see them quite early on after they are diagnosed and along their journey.

"We educate them and support them throughout their treatment and we link them in early with the full multidisciplinary team, OT, the physio, social worker. In-house we have the Psychology Department and we link in heavily with the Irish Cancer Society who give great support to patient with brain tumours or brain cancer.

"Sometimes it can be the family members who are more impacted by the diagnosis because sometimes the patients can’t see the effects the illness is having on them."

The Acute Oncology Service is a national tool that is rolled out in hospitals providing a dedicated phone line for patients with a diagnosis of cancer.

"It is keeping patients out of the hospital, they call us and look for advice on their symptoms and it reduces them needing to go into hospital so often," explains Kelsey.

"When they are calling us looking for advice it might be something as simple as their headaches have increased and they don't need to come in and spend sometimes over 20 hours in the emergency department," she added.

"With that tool we are working in conjunction with the public health nurses, GPs and whatever community supports we can utilise.

"We don’t want to be bringing them into the hospital environment and taking away from what time some patients have left with their families. It is so precious so it is so important to keep them at home and make sure that anything we can do to allow them to live their best lives and not let the diagnosis take over."

Kelsey says the simplest of things you can do for a patient can brighten up their whole day, something she and team at Beaumont Hospital strive to do.

"The most rewarding part is meeting the patients on the day ward and seeing them through their treatments and knowing that you are there for them whether that be for advice on the phone or bending an ear.

"Sometimes you are like a counsellor, patients become familiar with you, they know your face, they know your voice. You build up relationships, it’s rewarding at the end of the day, knowing you have made a small difference."

As well as a being rewarding role, there are challenges according to the Clinical Nurse Specialist who said:

"You are seeing patients that you have built up that relationship with deteriorating and you are trying so hard to keep them out of hospital and link them in with community supports but some things just are out of our hands.

"You know their story, their families, their children and you see them breaking down but the best thing you can do in that situation is to be there for them. They appreciate you just smiling sometimes and being a light in their dark day."