How We Took Control of Cancer Hearing Loss.
Can you imagine, going through something as terrifying as cancer hearing loss? And not being able to hear anything?
When my dad was diagnosed with Lung Cancer he was also diagnosed with a rare syndrome that caused him to become hard of hearing and then lose his hearing altogether.
Suddenly our cancer situation became MUCH more complicated because we had to figure out (quickly) how he could participate in conversations and how to make sure he was getting the right information.
One of our biggest challenges was doctor appointments. There was a ton of information flying at us, multiple people were talking and decisions needed to be made right there and then.
It was incredibly difficult at first to make sure he was getting the correct information.
But eventually, we figured out what worked…
How We Overcame Cancer Hearing Loss
Notebooks
We started with notebooks as our primary method of communication. We carried and wrote to each other constantly in notebooks. This method took longer, but he could ask questions and we could clarify further on any details or conversations.
As a bonus, we kept all of these conversations. I have about 30 notebooks that I read frequently since his passing.
I never thought I would be thankful for cancer hearing loss, but suddenly I was.
Caption Phone
These phones have a screen where you can read the text of the entire conversation. There is an operator (an actual person) who listens to the conversation and translates the words onto a screen.
It’s pretty amazing and the service is free.
I remember the first time I was able to actually talk to my dad using this method… It had been months since I could do that. It was a pretty big moment for us.
Be aware, this does take some getting used too. There is a significant delay between the time you finish talking and the time it takes for the message to be typed and read, so you’ll have to be patient throughout the conversation.
The caption phone also gives you the option to turn off the captions, so if a hearing person needed to take over the conversation, they could.
You can grab the caption phone we used here…
iPhone
We talked constantly on our iPhone’s.
Simply pull up a text message or the notes app, hit the little microphone button at the bottom of the screen, and start talking. It translates everything you say into text which is easy to read.
The problem is, it’s not very accurate.
The phone will attempt to repeat what it thinks you said (including curse words!) but often times it changes the words. So, you may have to try a few times to get your point across.
Still, it does work and you can usually get the gist of what’s being said so that you can keep up with the conversation.
Ava App
Ava Is Amazing!!
Hands down the BEST way to converse when someone is experiencing cancer hearing loss or is hearing impaired!! This app is simple to use, super powerful and EVERYONE can follow the conversation!
My parents, my sister, and I all had 4-person conversations from 3 different households and 2 different states… at the same time.
As each person talks into the app, it loads into a readable conversation and it is INSANE how accurately it transcribes your words.
They’ll let you try it for free and then it’s about $10 a month. For what you can do with this, it’s totally worth it.
It’s a hit at doctor appointments as well. This app makes it easy for your loved one to have real and meaningful conversations with their medical staff.
Can you imagine being able to “hear” all of the information that is being exchanged during the appointments? This app can make that happen for you.
You can find more information about AVA here…
Debrief Any Important Conversations
Our final and most important tip for cancer hearing loss is…
Once you have a system in place to help with the conversation part, end each dr appointment or important conversation with a debriefing.
A debriefing will save you a lot of stress! Seriously.
Details and information can be confusing and there is SO MUCH OF it that it’s hard to make sure things are heard correctly.
Start by asking what was heard during the conversation so you can fill in any blanks, or additional information that might have been missed.
After we started debriefing, we eliminated a lot of the confusion and gave my dad back the ability to make informed decisions about his treatment and care.
Cancer hearing loss was just one more challenge in our cancer journey. Thankfully, we found a few tools that helped us have those meaningful and important conversations.
Cancer hearing loss was just one more challenge in our cancer journey. Thankfully, we found a few tools that helped us have those meaningful and important conversations.
Share this if you know someone going through cancer hearing loss…
P.S. If you’re struggling to get all of this information organized we can help! The Cancer Binder pack gives you step by step instructions to figure out what’s important and create a space to organize it so you always have what you need when you need it, and the best part is it’s free.
You can grab The Cancer Binder Pack here…
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