“To any deaf patients, we are a strong-minded people – we have had to be. Cancer is just another battle that we can beat if we stay strong and find support.”
The shock of a lifetime – staying strong through breast and ovarian cancer
Belinda shares her experience as a deaf cancer patient and how she found support through two cancer diagnoses
For 54-year-old Ipswich local Belinda Mace, receiving not just one but two cancer diagnoses in early 2020 came as a shock. She had been suffering from a cyst on her ovaries for 12 years and when a node was found in December 2019, Belinda was told that at last she was eligible for a hysterectomy – having previously been knocked back as she hasn’t had children.
After undergoing the operation in March 2020, Belinda, who was born deaf, was delighted to find out she was cancer-free and the node wasn’t of concern during an appointment using an interpreter. It was when she received a letter from the oncology department at her hospital that Belinda realised she not only had not received a full hysterectomy, but they had also found signs of ovarian cancer known as serous tubal intraepithelial carcinoma (STIC). Belinda says the news was very confronting.
“My mum had died from ovarian cancer very suddenly. It was extremely depressing finding out I had cancer; I thought first I am born deaf, then my mum dies, and now I have cancer and am experiencing what my mum went through. I feel so lucky that my sisters rallied around me to protect me and help me get up and fight. I say to myself every day – f**k off cancer!”
During this difficult time, Belinda noticed a large red welt appear on her breast. Her family reassured her it was just a skin reaction, but when she found a lump in her left breast they immediately jumped into action. A biopsy confirmed the worst – Belinda also had breast cancer.
Now with two cancer diagnoses weighing heavily, the fear of cancer spreading to her bones and brain began to take hold. Belinda’s sister Karen helped her to keep positive until a body scan confirmed the rest of her body was clear from cancer. With her breast and gynaecological oncology teams working on a plan of attack together, Belinda went on to have a full hysterectomy and breast lumpectomy in the space of two weeks and was then referred to Icon Cancer Centre Springfield for 20 sessions of radiation therapy treatment, which she completed in September of this year.
For many deaf people, accessing healthcare services can be particularly challenging. Belinda attributes difficulties in communication for her delay in diagnosis, and was thankful to have her sister Karen with her at every appointment and treatment session to support her alongside interpreter services and her dedicated care team at Icon.
Throughout Belinda’s treatment Icon Cancer Centre Springfield were committed to ensuring she could still access the latest in radiation therapy as a deaf patient, including the Deep Inspiration Breath Hold (DIBH) technique. Typically, left-sided breast cancer patients such as Belinda are able to use the DIBH technique which reduces the potential impact on the heart from radiation during treatment.
The process involves the patient holding their breath for short bursts during treatment, allowing the heart to move further away from the radiation, with instructions previously communicated verbally using the intercom system. To support Belinda in receiving DIBH, the team at Icon Springfield collaborated together to develop a screen and light system that visually indicated when to breathe in and out.
She says being able to receive DIBH through the support of her care team made a big difference.
“I was very frightened of radiation at first, and with the COVID-19 pandemic it was even more terrifying, but the staff at Icon were so wonderful. They helped me to understand what to do and when to breathe to make sure I protected my heart. Everyone was always very patient. If necessary they would get my sister Karen to come in and talk sign to me, telling me to just relax. The screen was also easy for me to read, although at first it was a bit difficult learning to breathe correctly. After two weeks, my doctor told me I was doing great and the radiation was away from my heart!”
Icon Springfield was only a short drive from Belinda’s home in Ipswich, which meant she could avoid travelling to Brisbane for her treatment.
“It was great to have this available in Springfield as it would have been horrible to travel to Brisbane from Ipswich every day. It’s so hard in Brisbane trying to find car parks! Although I was worried at first about going every day for treatment, it went quickly and got me into a new routine. I enjoyed seeing the lovely team at Icon Springfield; they made me feel happy.”
Reflecting on her life before cancer, Belinda says her experiences this year have changed her outlook for the future.
“I now realise what a gift life is and how important it is to be healthy. I have gained weight during treatment due to comfort eating and look forward to getting this off with diet and exercise. My plans are now to get fit and be happy.”
She urges fellow cancer patients, especially those who are deaf, to hold onto hope and take everything one step at a time.
“My advice is to take small steps and don’t overthink cancer. Remember to stay positive even on your down days.”
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