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Primary Squamous Cell Carcinoma of the Oropharynx and level 11 LN
Head & Neck Cancer | Last Active: Oct 19, 2025 | Replies (16)Comment receiving replies
Hello @scottmcf1431. All of us who have survived head and neck radiation can understand how worn out and sick that you feel right now. This is the worst time but as Wm said, you must measure your healing progress from week to week so you can see some progress. It does take months to slowly regain your taste buds and begin to enjoy food again. I survived on smoothies with added protein, cream of wheat, and mashed potatoes. I did not have a feeding tube but probably would not have lost so much weight if I had. Don't forget about swallowing ice chips and an ice pack to your neck for comfort before eating/drinking. Above all, you must remain positive! Find some small thing every day that you are grateful for. Maybe it's just seeing another sunrise, or petting the dog, or spending a few minutes outside appreciating nature. Finding these moments of gratitude will help your attitude each day.
I am 13 years post surgery, radiation, and chemo for SCC and despite metastatic disease and a guarded prognosis, my new normal life is pretty darn good. You can do this too. Just know in your heart that you are healing and, however slowly, you will get better. I like to share a favorite book written by a Mayo Clinic palliative care physician Edward Creagan MD: How Not to Be My Patient. It gave me direction and hope and you might enjoy it as well.
Replies to "Hello @scottmcf1431. All of us who have survived head and neck radiation can understand how worn..."
@sepdvm
Your reply is really wonderful to read. It's real life experience- very appreciated!
@sepdvm Hello. I am 19 months from my treatment of 35 radiation and weekly displaying infusions. I stopped the displaying after the 4th treatment because my hemoglobin nosedived. At that halfway point I too required a feeding tube. My tube was a gravity feed using a syringe. The keys for me preventing blockage and infection were to start with water, insert the food extremely slowly and followup with a thorough cleaning of water. Also i made sure to have a minmum of 40 oz of water daily. My feed site did get infected it was important to leave the site open - free of dressing so it didnt get moist.
I was on the tube for 6 months. I slowly incorporated very thin smoothies and broths by mouth. I became transfusion dependent for awhile so I used the tube to take my liquid vitamins because I couldn't take anything by mouth - not even water.
To get through the ordeal look for the victories even the really tiny ones.
Getting taste back has been a long process and while I can taste it is completely different. I add sea salt and a Sazon spice to everything - including my coffee.
Water will help the sputum but the biggest difference for me was lymph node massage and head wrap while sleeping. If you haven't had this PT yet talk to your doctor. After getting off the tube, the massage and head gear gave me the beginnings of a feeling of normalcy.
Hope this info helps.
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@sepdvm
Thank you for your support. I greatly appreciate it.