‘The main thing is to be understood’
That’s the message from Anne Marks, who knows better than anyone the importance of communication. Diagnosed with adenoid cystic carcinoma in the salivary glands in 2011 Anne has had a long history of surgery and radiation to control her cancer. In 2018 she required laryngectomy surgery – a large operation to remove her voice box. No longer able to speak, Anne was faced with the prospect of re-learning how to communicate without her voice. She is one of 1.2 million Australians living with a communication difficulty that impacts their daily life.
Anne has been working with Lifehouse Speech Pathologist, Claire Pelham, for over 18 months. They have formed a close working relationship, which has allowed Anne to try out new methods of communication. Speech pathologists work with patients who are having difficulty with swallowing or communication.
At Chris O’Brien Lifehouse, Claire and her colleagues work largely with head and neck cancer patients. The location of the tumour, the surgery required to remove it or other associated treatments can affect many of the important functions that we take for granted, like eating, drinking and speaking. Patients can find it challenging to communicate with their loved ones or enjoy food and drink comfortably and safely.
Working in oncology presents its own unique challenges, but Claire says being part of a multidisciplinary team that is striving towards improving the quality of life for patients makes the tough days worthwhile. “One of the things I love about my job is that I never work with a patient just once. With our laryngectomy patients we have quite a unique working relationship, where you really get to know the patients and their families. We can be an advocate for our patients while involving them as active participants in their own care.”
Each case is complex and unique, a challenge which Claire loves because it requires working with other clinicians and doctors to determine what is best for the individual patient. “It’s that level of thoughtfulness that runs through everything at Lifehouse that makes it such a wonderful place,” says Anne. “Everything I am able to do is underpinned by you and the other people at Lifehouse. The ethos there is quite unlike anywhere else. The feeling that I have a whole team of people who have my best interests at heart is crucial to everything for me,” Anne recently wrote in an email to Claire.
Anne continues to work with Claire to optimise her communication and work around different challenges that arise. Anne currently uses a boogie board, an LCD tablet that allows her to write on a thin screen and communicate with others with ease. A quick click of a button and the screen is erased. As technology has advanced, patients who have difficulty communicating now have an array of options to assist them.
“We like to say there is life after laryngectomy. It looks different for everybody, as we are all different, but we make it work. With a team approach to problem solving we can find something for everyone when it comes to their communication goals,” Claire says.
For Anne, she hasn’t let her cancer or laryngectomy restrict her everyday life, and she certainly embodies this year’s national Speech Pathology week theme Communicating with Confidence. Unable to swallow food herself, she loves to cook for her family and friends, regularly attends book club, is independent and has no hesitation in taking part in normal daily life. When asked how others respond to her and her boogie board, she had a heart-warming response.
“You throw yourself on the kindness of strangers, and they are great.”
Speech Pathology Week is 25-31st August. You can read more about Speech Pathology at Lifehouse here.