Wearing a mask in public spaces during COVID has been a challenge for so many of us. But for Cathy, who reads lips to communicate with others, it’s muted the world around her.
Cathy, who lost her much of hearing at the age of 18 months because of spinal meningitis, has learned to overcome her hearing loss. When she started public school and was in grade two, a school teacher taught her to speak. She wore elaborate hearing aids when she was a child, the kind that involved a bulky vest with a wire attaching it to her ear. She gradually learned to read lips, and sometimes, when she tells someone that she has a hard time hearing, they respond by overcompensating to the point of yelling. “When people start yelling at me, I become shy and withdraw quickly,” Cathy says. Fortunately, in today’s world, there are powerful headsets that she can wear when she’s talking on the phone.
Cathy was diagnosed with bladder cancer in September 2019, at the age of 62. Like many Canadians, she continues with her cancer treatment during the pandemic. She had a cystoscopy in the spring and has also started BCG treatments. But for Cathy, COVID has created an extra layer of complexity in her cancer journey. Going for treatment in the hospital has had its challenges. The nurses and doctors are supposed to wear their masks, but when Cathy explains her situation, some will step back the required 2 metres, and at a safe, social distance, will briefly remove their masks to speak to her. Others will write things down for her.
Cathy, like many bladder cancer patients, remembers well the time when she first received her cancer diagnosis. She of course couldn’t physically hear the words that the urologist was speaking – and for many cancer patients, this will resonate with you. It’s an overwhelming moment and the words go in one ear and out the other. Like many other bladder cancer patients, she left the doctor’s office with a Bladder Cancer Canada (BCC) pamphlet in her hand, not knowing that this piece of information would eventually become her lifeline.
When Cathy leaves an appointment at the hospital, second guessing herself and wondering if she properly understood everything that was said to her during her appointment, she will often reach out to her “bladder buddy” – a BCC peer support volunteer that she met shortly after receiving her diagnosis. She will also post any questions she has on BCC’s online forum, where she is known as “Tana”. There, she has found a community of individuals who have experienced a similar diagnosis or treatment plan. The online community loves Cathy – “She stands out as one of our most active and positive posters on the forum. We all adore her!” says Jack Moon, BCC founder and forum moderator.
For Cathy, who has spent much of her life struggling to fit in and communicate with others, the online forum has created a new world for her, a safe space where she can express her concerns, fears, hopes and successes. “The people are so kind and supportive,” says Cathy, “but more than that, I feel like I have finally found a place where I belong.”
If you are in need of support during your bladder cancer journey, especially as we navigate the new normal that the pandemic has created, we encourage you to visit our online forum here. You might also consider connecting with a peer support volunteer who can share their own experiences with you. As well, a number of our online support groups across Canada are meeting virtually and would welcome you to join them. You can connect to both resources on the “Get Help” section of our website here.