Marie: a mesothelioma nurse-leader

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Today’s post is by Marie Jennings. Marie recently took part in the Lung Foundation’s pilot program of nurse education around mesothelioma and asbestos-related disease and is now a nurse-leader in pleural mesothelioma. Here’s Marie’s story.

Growing up in Ireland, I was familiar with the word ‘asbestos’ and aware it was used in building materials and insulation in homes, but didn’t give it much more thought. In more recent times I’d heard the warnings about asbestos use, however had no personal experience of working with asbestos. Like many people, it never concerned me. It wasn’t until I started working as a nurse in Australia that I realised the true extent of asbestos use and its harmful effects.

In 2010, I began working on a cardiothoracic ward in Strathfield Private Hospital in Sydney’s inner west. It’s a busy unit, receiving patient referrals from the greater Sydney area and across rural NSW. Initially I expected it would be a short-term position between holidays, but as the weeks went on I really enjoyed the challenges and learning opportunities the position presented.

Marie graduates from the asbestos/mesothelioma nurse education program in November 2013, with Lung Foundation Australia CEO William Darbishire.

One of the first patients I cared for was Tom, a 61-year-old who had undergone a left pleuro-pneumonectomy for malignant mesothelioma (cancer in the lining of the lung). This was the first time I’d heard the word ‘mesothelioma’.

Tom had worked with asbestos for over 20 years in a manufacturing plant and was never warned of the dangers. Initially he was told he had six months to live and was offered chemotherapy. He persisted for a second opinion and was referred for a surgical opinion at a specialist centre. His recovery was slow and he found the transition to breathing with one lung difficult. Following a lot of physiotherapy and hard work, he was discharged home to continue with his recovery.

Caring for Tom was a positive experience for me and his courage and determination really struck me. I learned a lot from the senior staff on the ward and saw how much he benefited from the experience of knowledgeable staff.

In July 2013, I was one of 10 nurses across Australia chosen to participate in the Asbestos Related Disease/Malignant Pleural Mesothelioma Pilot National Nurse Education Program, designed and organised by Lung Foundation Australia. This was a fantastic opportunity for me to meet other nurses who were working in the same area and develop my knowledge and skills to become one of the leaders and mentors in the field. It has familiarised me with the treatment options available and reinforced the need for early referral to palliative care services.

Marie is fourth from left in this photo of the National Mesothelioma Nurse Special Interest Group.

The course consisted of a four day face-to-face workshop in Sydney and a three-month online course followed by assessments. The course really highlighted the importance of the nurse’s role in the care of patients diagnosed with mesothelioma. Nurses play a significant part in the support and coordination of these patients and their carers during their cancer journey.

Following graduation from the program, I am now part of the National Mesothelioma Nurse Special Interest Group (SIG), which helps other nurses in caring for patients affected by this disease. Lung Foundation Australia has also launched a new patient and carers resource package, which includes a DVD and information for patients with pleural mesothelioma. It’s important for patients to have access to accurate and current information to ensure they are educated.

This year the national guidelines for the diagnosis and treatment of malignant pleural mesothelioma were launched, aiming to help ensure a standardised approach to care and treatment for all patients in Australia.

Initially when researching mesothelioma, results are quite grim, prognosis is limited and there is currently no medical cure available. Since working in our unit, I have seen patients with positive outcomes post-surgery. Despite being diagnosed with an incurable disease, they are managing to live with mesothelioma symptom-free. One man has returned to work part-time and recently completed a trip to Antarctica.

Australia has the highest incidence of mesothelioma per capita in the world. There were almost 700 new cases documented in Australia in 2008, with an expected increase of 79 percent by 2020. Malignant mesothelioma is an aggressive cancer that occurs in the lining of thoracic and abdominal cavities. Ninety percent of reported cases occur in the pleura. Mesothelioma is caused by exposure to asbestos fibres. The inhaled asbestos fibres cause inflammation and thickening of the pleural lining leading to the production of fluid (pleural effusion). Symptoms may occur 20 to 60 years after exposure. There is no safe level of exposure to asbestos.

Patients diagnosed with mesothelioma must be given hope – hope that their symptoms can be controlled and that there is life after a diagnosis with mesothelioma.

Lung Foundation Australia

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