Brain Cancer Care Co-ordinators
One person every 5 hours is diagnosed with Brain Cancer and Brain Cancer kills more children than any other disease. Brain Cancer does not discriminate. Brain Cancer can be a lonely journey for patients and their families. To date, MHF have funded three full time Brain Cancer Coordinators. These nurses are with patients every step of the way, delivering personalised nursing care tailored for each individual patient and their families. Every patient is also provided with a patient pack, including information on the disease, a patient diary and our famous MHF beanie – which is a symbol of hope.
Continued support will enable us to continue our support of patients and their families, and expand our program across Australia by providing all patients diagnosed with brain cancer a patient care pack, regardless of location. No patient or family should have to go through a brain cancer diagnosis alone.
My name is Elise Greedy and I have joined the Mark Hughes Foundation in the role of Brain Cancer Care Coordinator as our beautiful Alisha goes on maternity leave.
Since starting my neuroscience nursing at John Hunter Hospital in 2017, I have admired the work of the Brain Cancer Nurses funded by the wonderful Mark Hughes Foundation. In this role, it’s a privilege to meet people, their friends and their family from day one, getting to know them and support them. It’s my job to be a point of contact who can work across different health sites and with different teams to bridge the gap between people and their medical team. Essentially, to do anything possible to make life a little easier.
A bit about me – I grew up on a farm in Paterson and now live in beautiful Port Stephens where I’m fortunate enough to enjoy our pristine beaches and bushland. My favourite way to spend my downtime is bushwalking and camping, locally and throughout wider Australia.
I’m passionate about people receiving the highest standard of care without having to leave their regional community. The Mark Hughes Foundation has played an enormous role in facilitating this for people with a brain tumour; providing Brain Cancer Care Coordinators in Newcastle, Port Macquarie and Tamworth, and funding exciting new research here in Newcastle. I have a lot of hope for the future of brain cancer care and am privileged and excited to be a part of it.
My name is Nicole, but I’m mostly known as Nic, and I’m the Brain Cancer Care Coordinator for the Mid North Coast. The Mark Hughes Foundation funded this positon for three years and it has been an amazing ride already. The position commenced in late July 2020 and the initial phase of the role was aimed at setting up the service, introducing the role and service delivery to key stakeholders and identifying and developing contacts across the region. The next stage was to identify and introduce myself to the current brain cancer patients and their families.
The position covers an extensive geographical region of more than 11,000 square kilometres from Port Macquarie-Hastings Local Government Area in the south to Coffs Harbour Local Government Area in the north, incorporating seven public hospitals. Our traditional custodians of the land covered within the District are the Gumbaynggirr, Dunghutti, Birpai and Nganyaywana nations.
I feel that the funding for this role has had a huge impact on our patients’ lives. With a dedicated role such as this, our focus is solely on the patient and their family and doing what we can, when we can, to help support them through their journey. It’s great to hear the appreciation from patients and their families on those occasions when they mention something of concern or something that needs doing and I tell them I can help with that. It’s one less thing on their list to do or worry about. Being a single point of contact, when they have so many specialities involved in their care, is essential. It makes it that little bit easier not having to worry about who’s who, they know to ‘just call Nic’.
Not only have I found this role rewarding though patient care and support, it has raised local awareness of brain cancer and the statistics and impacts it has on families. I provide in-house education across the District, and many staff are surprised at the incidence and impacts brain cancer has on families. The greater the awareness of this disease, the more opportunity there will be for increased fund raising and further support for research activities.
My name is Natasha Malcolm and I am the Mark Hughes Foundation Brain Cancer Care Coordinator for the North West area. I commenced the role in late June 2020, and I work 3 days a week. I am based at the North West Cancer Centre in Tamworth, however I also cover Armidale and all surrounding areas.
This position is to support any adults who gets diagnosed with a primary brain tumour. The main purpose of my role is to support and assist both the patients and their families through this life altering diagnosis, which is an extremely difficult time in their lives.
Brain Cancer is such a devastating diagnosis and does not discriminate age or gender. Life can literally change overnight, both physically and mentally and in many circumstances the person they once were prior to diagnosis has been changed forever. Having a dedicated brain cancer specialist nurse for patients and families during this unbelievably difficult time has proven such a valuable service to have to brain cancer patients in our area.
The aim of this role is varying, from patient advocate, education, clinical advice, emotional support for both patient and families. I accompany majority of patients in there Oncologists consults here at the North West Cancer Centre and arrange and book treatment schedules, as well as arranging for follow-up investigations and assisting with referrals for any financial assistance that they may require. Assessing patient’s needs, referring to appropriate services when required and working with other multidisciplinary teams to ensure all patients and family’s needs are met. And often, just being that person on the other side of the phone to listen when people just need to chat can be just as valuable and any physical assistance you provide. Brain cancer patients often have very complex needs, so acting as that contact person between patients and specialists can help them better understand and comprehend things that are taking place.
I have taken great pride in starting the Brain Cancer Coordinator position for the North West area. The multiple kind words and thanks that I receive from patients and their families is endless and they always are so appreciative of any assistance they receive, even if it is just a person to listen when times get emotionally tough. I have been a Registered Nurse since 2003 and have held multiple positions throughout my career, but without a doubt this position has given me the most work satisfaction and enjoyment than any previous. I feel so privileged to be a part of my patient’s lives and always go to the absolute most to guide and help them thought this most devastating diagnosis. None of this would be possible if it wasn’t for the generosity of the Mark Hughes Foundation in funding this position and giving me the opportunity to help the people of the North West.