Every HNC patient’s battle is unique as is their journey after HNC adapting to a new normal of daily life.
For me, my first year of new normal was the epitome of bittersweet. It was a year filled with small, but profound milestones. I was wholeheartedly grateful to be able to speak, but with a significant speech impediment. I was delighted to be able to eat solid foods even though it was difficult, and I choked. I was incredibly proud of my new scars but missed eye contact when interviewing for jobs or simply meeting new people.
I recognize and remind myself daily how fortunate I am to be alive. Many HNC patients die from this dreadful disease and many survivors are unable to speak, eat or even swallow liquids. Knowing this, I never complain. I am grateful for every new normal I have been gifted. It took me one year to relearn, adapt and then truly thrive.
My beloved friend and our second HNC Fund Patient of the Year, Camille Ingle, and I have spoken at length about all things life and HNC. Fortunately, Camille is one year cancer-free, and I’m delighted she was graciously willing to answer a few questions. I believe her insights and tips will help other HNC patients navigate their new normal.
What are the most frustrating and/ or most difficult aspects of life after battling HNC?
“Initially it was eating, talking, and having low energy, but now it’s mainly eating and talking that can still be a problem. I take the longest time to eat now and have problems swallowing certain things. Sometimes I’m a little self-conscious about how I eat in front of others, but mostly I just dig right in. I find myself frustrated when having to repeat myself if someone doesn’t understand me, but it really doesn’t happen all that often. Most of the people close to me don’t even notice my speech anymore.”
What are the most surprising or positive aspects of your cancer battle?
“I thought the cosmetic outcomes of my surgery would bother me more, but they really don’t. I don’t mind my scars; they are battle wounds that I’ve become quite proud of. They tell a story of my body and my life, and I wouldn’t be me without them. I was also surprised by how supportive people in my life, in my family’s life, and complete strangers could be. People not only inquired about my well-being but also about how my family was doing.
I had so much more support than I realized, whether financial, physical, or emotional. People would inquire about how my mother was doing, a lovely lady volunteered to help me with physical therapy and massage after my surgery, I received inspiring messages and gifts from people I didn’t even know, I received donations during a difficult financial period, and numerous emails and texts when I couldn’t talk to people. It really did make all the difference, to know I and my family weren’t alone in this.
To sound somewhat cliche, I also have a greater appreciation for the important things in life. Family, friends, humanity, health, and the little things. I remember the first time after my surgery and treatments that I we had a warm day and I was able to sit with my face in the sun and feel normal and blessed. I remember taking, this is no exaggeration, 10 minutes to eat a simple shrimp and piece of softened broccoli because my tongue and mouth were so sore, but I enjoyed every bite and I am still so thankful I am able to eat and drink and taste, even if it is somewhat altered.”
What would you share with anyone battling HNC now?
“To those in the battle: Allow yourself to “feel the feels.” My sister and mom would let me cry my eyes out on the way to treatments and tell me that it’s ok, I am allowed to feel any way I want, to get it out. They didn’t make me feel bad for feeling hopeless or negative or miserable, they allowed me to be. Allow yourself your emotions and acknowledge them. I know firsthand it’s hard to be positive in the moment, but I just kept clinging to the knowledge that I would one day be healthy and happy again. Everyone kept telling me, “it will get better,” and it did. IT WILL GET BETTER!!”
Also, allow yourself time to heal. Allow others to help you. Focus on what you’ve overcome to get to this point, don’t dwell on uncertainty of the future, live in the moment. Know that you are stronger than you think. Try to talk to someone who’s gone through this, it gives you hope and makes you feel not so alone. Your family and friends can only understand so much, talk to another survivor!!”
Has hope or a positive mindset played a role in your battle with HNC and/ or did anyone provide you hope?
“Yes, hope and positive thinking played a huge role! I was lucky to have some very positive people in my life who would remind me that I’m going to be alright. My husband, parents, siblings, friends, and YOU Alyssa – I couldn’t have done it without you! My body was sick, broken, poisoned, radiated, and then allowed to heal, and during all of this and after my capacity for hope and positive thinking was empty.
I consider myself a positive and easygoing person, but in the thick of things, I was depressed, sick, and hopeless. I needed people to tell me I was going to be all right and that I would get my life back, I would feel “normal” once again. And I do! It’s a new normal, but it’s a good one. I was able to talk to a few survivors as well, though mainly you Alyssa, and just to hear these happy, healthy, positive people living their lives after cancer gave me hope!”
Camille’s strength, determination, and hope helped her heal and transform her life after HNC. To anyone navigating life after HNC do not lose hope, a new normal does transform.