Helen Conlon, 56, has been a McGrath Metastatic Breast Care Nurse for three years and is based at the Royal Hospital for Women and Prince of Wales Hospital, Randwick, Sydney.

Helen is one of those people who always knew what she wanted to do.

“I was admitted to hospital when I was eight, that’s when I decided to become a nurse,” she says.

“The nurses who were looking after me were just wonderful. This was back in the days when your parents couldn’t stay in hospital with you and the nurses really looked after me and made me feel cared for. I wanted to make the same kind of difference to people’s lives.”

Helen has been a nurse for 35 years. She initially went into midwifery but was drawn to oncology and palliative care and spent the majority of her career, over 30 years, specialising in that area.

“In early 2008, the early breast care nurse and the oncology team at the Royal Hospital for Women and Prince of Wales Hospital identified that patients with metastatic patients weren’t getting the support they needed. Funding was obtained from the NSW Cancer Institute to instigate a research project to set up and evaluate a metastatic breast care nurse service for patients with metastatic breast cancer.” Helen was employed in 2009 to set up this service and work in the position. A clinical psychologist collected data from patients and health professionals to evaluate the service provided. The project was overwhelming successful and a paper was published,” Helen says.

Helen has been a metastatic breast care nurse for eleven years, three years with the McGrath Foundation.

A breast care nurse looks after patients with early diagnosed breast cancer which is curable. A metastatic breast care nurse look after patients with breast cancer that is not curable. Metastatic breast cancer is defined as cancer that has spread from its origin, in the breast, to other organs or tissue

“The big difference of being part of the McGrath Foundation is that you have external support. It’s not just the hospital system, there’s always someone there you can talk to for support and advice. You are kept up to date with information and research pertaining to breast cancer, there are learning opportunities and also most importantly being able to network with other nurses who are doing the same job.”

“Having a profile with the McGrath Foundation has been really important. The McGrath Foundation have now funded over 20 metastatic nurses and they have identified the need for more specialised care and support for women with metastatic breast cancer.

“The role of a metastatic breast care nurse is different to that of an early breast cancer nurse. An early breast care nurse will see a patient for the duration of their diagnosis and treatment, which is usually 1 year. A metastatic breast care nurse is there to support and comfort the patient though their metastatic breast cancer journey which can be many years.”

“Although you’re still providing the same physical, psychological and social support to patients, you’re in it for the long haul. “People are living longer with this disease and they need support for longer.” The most important thing I do is to establish a trusting, supportive relationship with the patient as this is crucial for their ongoing care, disease trajectory and end of life,” Helen says. “With some patients it can take years to build that relationship with people, but it’s important because it will make a difference in the end and they will turn to you eventually “

“It’s a holistic approach to care, you need to understand their home life, their work life and the challenges they face. There’s a small minority that don’t want the support of a breast care nurse. I have had some patients that have declined initially, but may be open to you a few years later. If patients do not want your support you have to respect their wishes, you cannot harass them and you have to back off.”

“It is also equally important to build a relationship with the patient’s partner or family. When someone is dying, they’re often not well enough to talk to you, so your focus and support switches to the partner or family. After a patient has died I do bereavement phone calls or a support visit with those closest to the patient. Offering this support afterwards is really important, it’s closure for them and myself. “

For some people, the term metastatic is too confronting because it is a terminal diagnosis. But Helen wants to bust the myth that a metastatic diagnosis is an immediate death sentence.

“Patients when first diagnosed – and the general public as well – don’t understand it. It’s not a death sentence now. Metastatic doesn’t mean you’ll die tomorrow, it’s not like that at all for the majority. It depends on what type of breast cancer it is, where the cancer has spread to and how a patient responds to treatment. We have so many treatments for metastatic breast cancer nowadays and they are always evolving,” Helen says. “Our philosophy for our patients is we want them to live as well as possible for as long as possible.”

COVID-19 presented unique challenges to metastatic patients.

“I got so many phone calls from stressed, anxious and frightened patients, especially during March and April. People were scared about their immunity being low or coming into hospital for appointments and blood tests,” Helen says.

“I found that I have had an increase in referrals to our oncology psychologist as well. COVID 19 added an extra layer of anxiety to a metastatic cancer diagnosis and uncertainty of treatments working.”

Helen’s role as a McGrath Metastatic Breast Care Nurse means she plays an important role in people’s lives, but she’s also learnt when to step back.

“McGrath breast care nurses are experienced and highly skilled nurses. We know how important it is to put boundaries in place and what are our professional limitations. There’s that balance of being the right person at the right time for the right problem, but being able to step back and refer to other health professionals .If we don’t have professional boundaries we lessen the benefit of care to the patient and their carers,can cause harm and cause self-detriment”

“That’s not to say I don’t get to know people very well and it’s not difficult. Some patients get closer to you than others but you have to think about what’s best for that person. If you get too involved with someone, it’s not benefiting them. You have to step back.” “It’s not your experience or journey.”

It’s not an easy job, but Helen wouldn’t swap it for the world.

“I love what I do, I truly believe it does make a difference to people’s lives. I hear it from patients, their carers, the oncologists and multi-disciplinary team. I can’t change the patients diagnosis, situation or that they will die from breast cancer but I know the input from a metastatic breast care nurse does makes a difference, it might be only small, but it is crucial,” she says. “It is rewarding to be in such a privileged position at such a difficult time in a persons life”