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Hi, my name is tropicofsparrow. I'm here because I have active cancer and I'm scared. I'm meeting some great new people, though!
October 2020, my husband was diagnosed with squamous cell carcinoma cancer of the tongue with bilateral lymph node invasion.
The tongue is a muscular, sensory organ in the mouth that plays a vital role in chewing, swallowing, speech, and articulation. The nerve endings sense pain, temperature, and touch. Whereas the sensory receptors are for taste perception. As we chew, the tongue positions food between our teeth and mixes with naturally occurring salvia. Swallowing is a complex process which involves skeletal muscle movements of the tongue and natural reflexes by our autonomic nervous system. The tongue executes thirty different movements and must work properly in cooperation with the lips, teeth, and jaw to execute speech and articulate language sounds properly and clearly.
Tongue cancer patients typically have all or part of the tongue removed in a procedure known as a Glossectomy. My husband had endured a 12-hour surgery which removed two-thirds of his anterior tongue and had his tongue reconstructed with a ‘free flap’ from his forearm. A free flap is a piece of tissue removed and reattached to the blood supply at the alternative location within the body.
The free flap does not have volitional movement; the movements are only influenced by the residual tongue. So, the post-operative tongue cannot be used in a meaningful way to restore motor function. There is also no taste perception or sensory experiences within the region the free flap. This is secondary to the sensory input loss due to damage to the lingual nerve during the glossectomy and neck dissection which caused permanent numbness and altered sensations to the tongue.
Lymphedema is fluid buildup due to numerous lymph nodes being removed. Lymphedema interferes with odd neck sensations and tightness, given him a limited range of motion of his neck – even with weekly PT and custom neck compression.
The loss of muscle that shapes and positions the tongue has impaired speech and eating. Proper tongue motions needed for letter-formation of clear, articulated speech has been altered with limited range of motion and constriction of the tongue.
Damage to the salvia glands during radiation has severely decreased salvia production which causes extreme soreness within him mouth. This causes more discomfort during the eating process or short duration of walking.
Frequent choaking occurs while trying to swallow food if not enough moisture is within the food. My husband must take a sip of his drink after chewing but prior to swallowing to avoid choaking. His loss of sensation and lack of mobility to move the food in his mouth now requires a finger swipe to adjust the food in his mouth to properly chew and position for swallowing.
To further increase the challenges induced by having a tongue reconstructed with a forearm free flap; Joe needed to have all his teeth removed prior to beginning radiation treatment - which tremendously increased his struggles but even more so - his despair.
Before tongue cancer, we both had hectic 6-day work weeks that were inconsistent and changing one day to the next. We would not know when we would be home each day. But whether it was 4:00p or 8:00p, we were dedicated to making our family dinner time our special family time. It was the guaranteed time that our son had both his parents calm and present while being fully engaged with him and with each other.
Our family dinners are now a hectic, chaotic – an overall miserable family time. For obvious reasons, the process of eating has been extremely painful and time-consuming ordeal that causes Joe extreme struggle, aggravation, and frustration. My husband can no longer engage in conversations over dinner, as he needs to have full awareness on his processes of chewing and swallowing. The sounds of slurping or choaking along with the visual sights of finger swiping food around in the mouth or spitting out choaked on food; has led our son losing his appetite during dinner and will engage momentarily and only eats his dinner after his father is finished. My evening time restraints do not allow me to just sit at the dinner table for over an hour to keep my husband company. With eating being a primal function of survival; Joe has no way to avoid it and is now forced to fully focus on what is causing him the most pain and agony – alone.
This was only a tiny peek into the daily challenges my husband endures and impact on our family.