[Editor’s note. This Patient Story is the second of a two part series written by a member of the NFOSD team from a written interview with patient Angelica Hunsucker. Click here for part 1. All content stems directly from responses to documented interview questions and has been approved in written form by Angelica.]
One of the hardest challenges I had to face with my diagnosis was losing my voice at age sixteen. The laryngectomy was one of those “world coming to an end” moments for me, I couldn’t stop thinking about all of the things that I wouldn’t be able to do anymore. The procedure not only removed my voice box but also changed the way I breathe from my mouth to a hole in my neck. Talking on the phone was gone. Swimming was gone – hell if I even fell in a pool I would die! Even things that I could still do, like breathing on my own, somehow became more complicated because of the hole in my neck. I have to be careful with aerosol sprays, dusty areas, and any cologne or strong smells. These set me off and I start coughing badly. I also have tobe careful playing with my girls. I can’t wrestle and play around the way I would like to be able to!
The stares I get from the hole in my neck aren’t fun, but I’m used to them. I don’t pay staring strangers any attention anymore, but my family and friends are still overprotective of me and confront adults every now and then when we’re out together and someone is obviously staring. I like to combat these challenges with humor; I know it isn’t really funny but it makes me laugh to think a bug could fly into the hole!
Changes to Daily Life
Things have certainly changed in the ten years since my diagnosis and my battle with radiation therapy, chemotherapy, and with my total laryngectomy. I usually text message or email to communicate because in person, whoever I’m talking to has to look at me so they can read my lips. Most people don’t have the patience for this. Thankfully, my daughters have learned to read lips very well. Communicating can still be a challenge for new people and it was certainly one of the hardest things to cope with at first, but now my family and friends are used to it.
The biggest adjustment I had to make was my diet. I now pour one or two 8oz. cans of Ensure into a syringe that connects to a feeding tube in my stomach. I always need to have a syringe and a connector in order to eat. At home, I benefit from my family’s patience as they bear with me when we’re in a hurry but I need to finish my Ensure. When we’re out to eat, they understand that I can’t eat in front of everyone. My brother has been especially supportive in this respect – he’s even ordered his food to go so that I’m not the only person sitting at the table without eating.
Communicating and eating weren’t the only things that changed for me. A lot of daily activities that can be taken for granted now require a lot more thoughtfulness. I can’t stand directly under the water when I’m showering because of the stoma, or hole in my neck, I’m often interrupted by strangers staring or stopping me to ask what happened when I’m running errands, and exercise makes me more tired and faster than the average person. I find myself overall less independent than I once was, but I’m fortunate for my family and friends who lend a hand when I need it.
Despite my setbacks, my family role hasn’t changed due to the swallowing disorder. My family supports itself the same way any other family does. That’s important to keep in mind – my swallowing disorder is a hurdle but one that my family has come to accept and one we now navigate naturally. They know that it’s the result of cancer and they’re used to it now.
Ironically, I’m an amazing cook and I still cook for my family. I still attend social invitations, but I won’t eat and I may duck out to the bathroom for an Ensure. I wouldn’t say that I socialize less; I was more of a homebody even before my diagnosis. I am less independent now because I can’t make a simple phone call to make a doctor appointment for my girls or for myself, but my mom and boyfriend help me with the phone calls. The two of them are the most helpful people to talk to about my swallowing disorder.
Navigating a swallowing disorder with your family can be difficult, but if I had one piece of advice it would be to not be embarrassed to ask your family for help or for their patience – they are probably willing and waiting to help.
Angelica is currently fundraising to travel from her home in North Carolina to Sacramento, California for multiple trips for a procedure that may allow Angelica to swallow again. Please visit her fundraising page in order to support her efforts.
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Food for Thought:
1. Angelica mentions several methods of coping with her swallowing disorder. What coping mechanisms do you use?
2. Do you have additional advice for gaining family support? If you are a family member, what is one thing you do to support your loved one with a swallowing disorder?
3. Angelica mentions some changes to her daily routine. What are some tricks that you have to help with the changes to daily routine?