Re-Learning to Talk, Swallow, and Eat: A Caregiver’s Perspective
By the time my husband, Sean, was diagnosed with tongue cancer, he had already lived through a bone marrow transplant. While it was terrifying to now have a diagnosis with “cancer” in the title, he had been brought right up to death’s door during the transplant process and lived to tell the tale, which left me naively thinking that we could handle whatever else was thrown at us.
A week before the surgery, in which they planned to remove half of his tongue and all of the lymph nodes on one side, create a free flap from his arm to repair his tongue, move an artery from his arm to his neck, and take a piece of his leg to patch up his arm, we sat in the exam room at the ENT’s office as a parade of specialists rotated in and out.
One showed photos of what his arm would look like right after surgery, one month later, and six months down the road. Another showed diagrams of what the tracheostomy he would wake from surgery with would look like and how it would function. While both of these encounters made my strong stomach lurch and my cheeks lose their color, it was the Speech-Language Pathologist’s visit that woke me to the reality of what we were about to experience.
In her time with us, she explained that after surgery, my 37-year-old husband would need therapy to re-learn how to talk, swallow, and eat. He would no longer be able to do three of the most basic life functions – functions that connect us to each other, provide us with nourishment, keep us alive. It was then that I realized I had underestimated what was about to happen. I left that appointment and requested a leave of absence from my job, explaining that I could not possibly work if my husband could no longer eat, swallow, or talk.
As we had been warned, in the days following the surgery, the trach prevented him from being able to speak at all. I was a veteran caregiver by that time and had been married to him for fifteen years, but suddenly needed to understand and advocate for him in a whole new way. I kept a whiteboard and paper near the bed and he did his best through the haze of pain meds to communicate his needs through writing, but the bandage on one arm and the tubes in the other made this difficult. More than once I found myself in tears, trying hard to decipher what he’d written and to glean just from staring into his face what it might be that he was trying to say. I created picture boards that enabled him to point to what he needed and came to understand what different looks in his eyes were trying to tell me. It was excruciating to leave the hospital each night to go home to our daughter, knowing that he had no voice to make his needs known while I was gone.
Without me, he was unable to communicate.
Once home from his hospital stay, he was unable to take medications by mouth and was not yet able to use the arm from which the flap had been taken. I lined our bedroom dresser with bottles of pills, medical supplies, charts, and sanitizers. Multiple times throughout the day and night, I would grind pills, dissolve medications, measure out liquids, and administer them through his feeding tube, keeping track of each on an elaborate chart I’d created.
Without me, he was unable to take the medications that managed his pain and kept infections at bay.
For weeks, he was unable to eat or drink by mouth. Every few hours during that time, I mixed liquid nutrition with water, measured and poured them into a bag that I then attached to his feeding tube. I documented his food and water intake and adjusted as necessary.
Without me, he was unable to eat or drink.
As I write this years later, I am happy to report that my husband has made a full recovery from that surgery. His speech is completely unaffected. He can eat anything he chooses. He takes all medications by mouth. In the years since, other diagnoses have led to further procedures and treatments. Each of them have added to my caregiver resume, but nothing listed there will ever feel as arduous or as vitally important as helping him in the days when he was unable to talk, swallow, and eat.
I do not tell this story or make these statements with a voice of arrogance, but instead to say to my fellow Head and Neck Cancer caregivers – I see all that you do.
I see how you are needed in order for the most basic functions of your loved one to be fulfilled.
I see that you, without medical training or pay, are thrown into being a Speech-Language Pathologist, a Pharmacist, a Nutritionist.
I see that you do these things on top of caring for your home, your other family members, your job.
I see that in being needed in this most essential way, the opportunity to be in the moment, to grieve, to rest, to process, to heal is taken from you.
Caregivers, I see you and though I am so glad your person has you in their hardest and most vulnerable moments, I wish that you didn’t have to be needed quite so much.
Allison will be a highlighted panelist in the Head and Neck Cancer Alliance and American Head & Neck Society collaborated free webinar, Caregiver Needs, scheduled for May 4th from 5 PM to 6 PM ET. Register now to attend tomorrow’s webinar!
Caregiver to Husband Sean, a Fanconi Anemia, tongue, bladder, and throat cancer survivor,
Writer, Speaker, and Caregiver Advocate at The Negative Space,
Director of PreK Reading Corps, Reading and Math, Inc;
St. Paul, MN
To learn more about Sean and Allison’s story, go to www.thenegativespace.life or follow her @negspacelife
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