Head and Neck Cancers

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    What I Learned About The Tongue When My Husband Lost His...

    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.


    #TongueCancer #OralAndOropharyngealCancer #SquamousCellCarcinoma #Cancer #HeadAndNeckCancers

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    Hero rock-heroes of oncology

    Edit-I said I would share some of my rainbow rocks for keyworkers on here so here's the next big one alongside the article .

    This one is a big one again guys. I am choosing carefully what to use these few large concrete bits on and oncology teams definitely deserve one. In your life you have a 38.4% chance of ever getting cancer, that's high so yes covid is a big deal but ignoring cancer could become a biggier one.
    On this rock I have big ribbons for all the core types of cancer, there's more, the rainbow smaller ribbons, they are leave for people who have passed away due to cancer and for those still fighting.
    The staff that work in oncology work as doctors, nurses, HCAs, pain speacilists, phsios, Macmillan nurses, palliative care teams, hospice staff, care workers and this list goes on so please know if you work in this area this rock is for you . They trully care, they are they for the patient and families.
    Covid has caused alot of problems for this service. They had periods in the beginning where they had to cancel treatment so they could safely have patients come in especially since they were at high risk of getting covid.
    They are in some areas using buses to do chemo, some separate buildings but they put they work in to get there.
    The other worry was in patients spirits, they were alone. We actually sent some comfort rocks to some including children to help here. Then people haven't gone to screening due to fear of going out, these are so important, it's not just the screenings it's believed they are ignored Lumps, headaches and so forth all for fear of Covid.
    Right now yes covid is bad but follow the guidelines and be sensible, don't let it stop you getting vital health care otherwise we give covid a different victory. Right now our waiting list for cancer care has rocketed to 2 million people. We need this not to be our story so get checked and attend screenings.
    Thanks to the staff for your professionalism, compassion and understanding. Xxx #Art #ArtTherapy #Cancer #COVID19 #BreastCancer #ChildhoodCancers #Leukemia #braintumors #BrainCancers #HeadAndNeckCancers #ThroatCancer #CervicalCancer #TesticularCancer #ColonCancer #CervicalCancer #NonHodgkinsLymphoma #Hodgkinslymphoma #EsophagealCancer #SkinCancer #BoneCancers #LiverCancer #KidneyCancer

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    I believe in miracles!

    Monday I entered the hospital to have major surgery for head and neck cancer. The already terrifying situation was even more terrifying as no one could enter with me or visit. My precious sons had a wait. It was a 6 hour surgery planned. I was told when I came home I would be on a ventilator and feeding tube. We were prepared for the worst. My son had asked for prayers on Facebook and many people began to pray. I was so surprised and inspired. When I entered the surgery prep area , my Reverend from my church called and we prayed. He wasn't allowed to visit like others due to the virus. I knew nothing for a while but in recovery my son called and was crying saying God had given me a miracle...the surgeon could not believe it...no cancer. I still had things removed but surgery was only about an hour. I am home recovering. I can't speak. I'm in pain. But nothing matters. I will survive! I will look forward! I am so blessed and grateful! I believe! Believe in miracles Mighties! They are real!

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    life saving tools

    #Disability, My favorite thing in this world is my blender! I am a head and neck cancer survivor and my treatments has caused me to lose my swallow and develop dysphagia the inability to eat or drink by mouth. So I depend on my feeding tube for all nutrician and hydration needs. Many folks like me choose to use processed formula for their food, but I choose a blended diet. That way I can choose healthy foods to blend and put in my tube via my bolus syringe. While I cannot tast food anymore I do get enjoyment out of putting together differnt foods to blend and seeing how my body reacts, some foods leave me full and bloated, others make me feel comfortable, while other give me energy. So i have found new ways to enjoy food other than gluttony!