Radiation treatment was damaging my voice box. The tumour had started at the base of my neck in my throat, and had made it’s way up to the voice box by the time treatment had started, and so my voice box was directly in the radiation’s path. I knew where this was heading, and I knew that sooner or later I’d have to communicate without my voice.
For the first few weeks of treatments you couldn’t hear any difference in how I sounded, but by the third week there were definitely audible signs that I was losing my ability to talk. How would I be able to ask for tea?
My voice became raspy and it was painful to talk. From there it rapidly deteriorated so that I was croaking out little more than a whisper. I had to forward all of my phone calls to my husband’s cell, and eventually the Oncologist ordered me not to talk at all for fear that my voice box would be permanently damaged. My husband and I had to figure out how to communicate when I couldn’t speak.
We first tried an erasable message board that one sister had lent me. It worked great, but we soon realized that if my husband was out of the room then we were back to the communication problem. I couldn’t call him, nor could he read what I had written on the board.
We also tried sign language. Seaghan researched some common phrases that I could use, such as asking for tea. In sign language, it seems as though you actually sign “Tea I want”. If needed to specify hot or cold, you’d say “Tea hot I want.” We didn’t have a professional teaching us and we were learning from a book, so we hoped that we were doing it correctly. We didn’t want to accidentally offend anyone. Anyhow, sign language worked great and it was fun learning it, but we still had the problem when Seaghan left the room: he couldn’t see that I was asking for tea and I had no way of calling him.
Since I knew I would be off for an extended period of time on disability, I had brought my work computer home with me so that I could still take care of server issues, troubleshoot, etc. It was an Apple Macbook that had a simple text editing application that would actually speak what you’ve typed. I could actually have a conversation with Seaghan although I sounded, well, like a computer.
Click to hear: tea please
It solved many of our communication issues but Seaghan couldn’t hear it from the other room, and I certainly wasn’t going to lug that thing to bed with me. We needed another solution.
Cue the bells.
We had been given a set of his and her personalized bells with a lovely poem as a wedding gift from one sister. Perfect. The solution was simple: one ring for no, two for yes, as long as I was asked a yes/no question. If I couldn’t hear the question or if I was asked in a way that couldn’t be answered with a simple yes or no, then no bells. This also solved the problem of trying to call Seaghan we were in different rooms. I’d ring the bell and he’d come. I made sure to bring one with me to bed.
So now we had a variety of solutions that worked, and we interchanged them depending on the situation.
The most awful part of not being able to speak is that I couldn’t talk to my parents, at least not directly. Some times you just need the comfort of talking to your mom to bolster your spirits. The only solution we could come up with was speaker phone. My husband would put mom on speaker phone so that I could hear her, and Seaghan would relay my answer back to her ; she would tell me she loved me but I couldn’t tell her I loved her back myself.
We had no idea how long my voice would remain AWOL, nor did we know if it would even return at all. I would remain hopeful, and soon learned to enjoy the power of the bell that kept Seaghan at my beck and call. I might have jokingly abused the privilege a little too much, however — I think he was secretly plotting to melt them down!
—Sandi
Next time: radiation treatments didn’t always go as planned