(Note: In 2020, the writer was diagnosed with stage 4 throat cancer in June, had two surgeries - in July and August - to remove the tumor, and completed radiation and chemotherapy in late October. Below is another excerpt of her experience.)
In April 2021, I embarked on a campaign to become proficient using the hands-free device and I still have yet to perfect it. Admittedly, it’s taking much longer than expected, yet (as a character says in the movie, “The Outlaw Josie Wells”) I shall endeavor to persevere.
All credit goes to my Dr. Brenda Villegas, my speech therapist, that I even reached the point of transitioning to hands-free. Her encouragement and confidence that I could use it persuaded me to give it the “good old college try.”
Another influencing factor was my desire to resume pre-laryngectomy activities like emceeing social programs, delivering poems and readings before audiences and interviewing people for the L.A. Sentinel, the weekly newspaper that I work for. As a “drama queen,” I fling my hands around when doing the aforementioned deeds and I believed that using the hands-free device would greatly enhance my actions in these areas.
Some may read this and say, “Gosh, she is really vain!” And to those people, I reply, “You are right and I’m working to change.” But until then, I’m striving to master my use of the hands-free device and I’m making progress – slow and incremental, but progress nevertheless.
Initially, my biggest challenge was learning to speak from my diaphragm and coordinating the sounds with my breathing. It sounds hard, but with practice, it can be achieved and soon becomes natural to you. Dr. Brenda gave me great exercises to practice, and my favorite consisted of speaking or producing the “A” sound or “O” sound for as long as I could.
At first, I could only do it for less than 5 seconds. But gradually, I could hold it for extended periods, like 18 seconds, then 27 seconds and even 36 seconds. The technique helped me to string together longer sentences. It took me about four months, but I became adept at conversation using the hands-free device.
As with anything, the more you talk with the hands-free device, the better you become. With that in mind, I urge anyone using it to seek out conversations with others and when no one is available, read aloud to yourself or sing in front of the mirror. Also, practicing in front of the mirror is a great technique to help match your facial expressions to your words. Pretty soon, you’ll become a master communicator!
Even though I’m making progress with hands-free, there are a few hurdles that continue to plague me. My biggest stumbling block has been obtaining a good seal of the adhesive base plate, which makes talking so much smoother and easier.
I use the Provox Life product line and when I apply their standard baseplate, it only sticks securely around my stoma for three hours at the most and then it begins to detach from my skin. I’ve tried using both Skin Prep and Skin Tac wipes before applying the baseplate, but it still only sticks for the same amount of time.
After explaining my dilemma to Dr. Villegas, she suggested that I try the Provox Life Stability Adhesive, which was an excellent recommendation because it stays on much longer. In fact, it stays on all day and of course, I’m delighted about the result.
A drawback for me is that Medicare doesn’t cover the Stability Adhesive, so I must pay for them in advance and then Atos (the supplier) submits a reimbursement request on my behalf. To date, Medicare has approved all of my reimbursement requests and refunded half of the amount that I spent for the Stability Adhesive.
One more hindrance I experience is the negative effect of the adhesive on my skin. I can only wear the base plate for up to three consecutive days. By the fourth day, my skin is red, irritated and a bit painful around the stoma. When that occurs, I use the hands-free device with a neckband and LaryTube until my skin feels better.
Because I have a vanity issue (as mentioned earlier), I dress up the neckband. I purchased fabrics in various colors and hired my seamstress friend to make what I call CCCs – Cora’s Collar Covers. They are just bright, colorful, washable strips of cloth with elastic on each end that fit neatly over the Dale® neckband. Also, scarves can be used to cover the neckband.
Overall, transitioning to the hands-free device has been a positive process for me. I’m still working on sharpening my skills, but I’m optimistic that I will reach an acceptable level of competence or at least I’ll have lots of fun trying!