For many patients with cancer, platinum-based chemotherapy agents like cisplatin and the less-common carboplatin can be literal lifesavers. However, a significant number of survivors (estimates range from about half up to nearly two-thirds) experience permanent hearing deficits.

While survival trumps hearing in cancer treatment, chemo-induced hearing loss is by no means getting a free pass. Scientists are making advances in efforts to quell the ototoxic effects of chemo while preserving its tumour-fighting power. Hearing professionals, meanwhile, are advising patients and other health care providers on how, in the wake of chemo-caused hearing deficits, to maintain as much function as possible.

“These patients may have had a fairly sudden onset of their hearing loss as opposed to somebody whose hearing loss happens gradually over time, and there’s an emotional impact to that,” said Erica Williams, PhD, a clinical associate professor in the department of speech and hearing science at Arizona State University, Tempe. “It’s important to keep in mind the cause of their hearing loss and what they’re dealing with medically. They may have some pretty high communication needs in terms of dealing with multiple physicians and family members about everything going on with their care.”

Don’t underestimate the importance of advising patients to speak up when others fail to meet their communication needs, Williams advised. To the physician who might be looking down at her notes while she speaks, to the spouse who might be addressing his comments to the sink of dirty dishes he’s tackling, to the staff at a restaurant where the music is too loud and obstructing communication, people with hearing loss should feel empowered to advocate for themselves—to remind people to face them when talking, for instance, or to request a more quiet table at a noisy restaurant.

“Advocating for yourself doesn’t come as naturally as people might think, even with patients who have had hearing loss for a good amount of time,” Williams said. “Many people tend to hide things like hearing loss instead of seeking help for it.”

Does this seem familiar? It feels like we talk about it all the time. “Please face me so I can hear you,” or “Can you repeat that slower,” but I sometimes wonder if it is sinking in. Objectively, I think my family knows what they need to do to help me hear, but it often slips their mind, or seems unimportant since in many cases, I function quite well. It’s not obvious that I need help, so when I do, they are not always there for me. Until recently. We had a formal family meeting about my hearing loss. It seemed to make a difference. My fingers are crossed that this momentum will continue.

Hearing loss takes a toll on a family and a marriage. While my family supports me many times, there are other instances where I feel left out to dry with no support and no assistance. That is probably the case for many of us with hearing loss. Since our disability is invisible and variable — we hear well in certain environments, but not in others — it is easily misunderstood, discounted or ignored.

One Saturday morning, my husband called the family together. “We need to talk about your mother’s hearing loss,” he said, “and how we can do a better job to help her hear.” At first, my kids were annoyed with this. “We talk about this all the time,” they said, “we know what to do.”

“But we need to do better,” he declared. “She is an important part of this family and we love her. It is our responsibility to help her hear.” I was blinking back tears for that part.

We spent some time brainstorming communication best practices to use with people with hearing loss. Things like:

• Get the person’s attention first before speaking.
• Make sure your mouth is visible to aid with lipreading.
• State the subject of the conversation if the topic has shifted.
• Talk clearly and at a moderate pace.
• Watch the person for clues as to whether she is hearing you or not. If she doesn’t seem to be understanding, speak louder, slower or rephrase.
• Keep your volume up, even in quiet places.

Truth be told, it was a little bit repetitive of things we have discussed before, but the formality of the conversation made it different. Made it more serious and more memorable. I have noticed a difference already in my family’s behavior, especially in monitoring me to see if I’m understanding in the moment. Let’s hope it sticks.

Reader, is your family on your hearing loss team?

Stephen Gurney

Primary source: “Chemo-induced Hearing Loss: Helping Patients Cope with the Aural Effects of Cancer Treatment: Self-advocacy”
Tumolo, Jolynn. From The Hearing Journal: Volume 71 – Issue 1 – p 26,27,28