It was a year ago today that I found a lump on the left side of my neck. I had been having ear aches and trouble swallowing for about a year. It took months before it was discovered that I had Squamous Cell Carcinoma HPV16+ on the base of my tongue which had metastasized to the lymph node in my neck. It was stage 3 Oropharyngeal cancer.
It's been a rough year starting with surgery to remove my left tonsil and biopsy of my tongue. Then two more biopsies before it showed cancer. Then had surgery to place PEG tube in my stomach.
The fitting for my face mask was terrifying as well as the 35 times I had to wear it and be strapped down on the table to receive radiation treatments for 7 weeks.
I am 5 months out of treatment and I have many terrible side effects of radiation therapy that I will have to live with the rest of my life. Also lost a lot of hair at the base of my neck that is slowly growing back even as I continue to lose more hair all over my head.
Mucus that chokes me sometimes has yet to go away. Lymphedema in my neck that I massage daily to help drain. I have a little Fibrosis on the left side of my neck that causes some discomfort when touched or when I sleep on my side. I still get thrush in my mouth now and then and use Nystatin swishes to get rid of it. My voice is still hoarse as there is still inflammation in my throat.
I have developed some enlarged taste buds called Circumvallate Papilla on the left side of my tongue that rubs on the side and roof of my mouth. This is not painful but is a very aggravating sensation. There is nothing that can be done to reduce them.
My throat is still red and sore when I swallow. I have to drink a liquid with every bite of food. I have no saliva so don't have the needed enzymes to break down foods like meat, potatoes, cheese, pasta, rice, etc. My sense of smell is improving but some things still stink. My taste is returning but really slow. It takes me a long time to eat a small portion of food and have to spit out often.
My PEG tube stoma has never healed completely and is red. It bleeds every time I clean it. It has been in my stomach for 8 months now.
Every night for 5 minutes, I have to use dental trays with a solution to prevent my teeth from breaking apart. Also have to brush with a special toothpaste after every meal or snack.
They call this the "new normal". I call it misery. However, my latest PET scan was clear of cancer. I am thankful to still be here but live with the fact that science prolonged my life but did not save my life. I still have the HPV virus. I belong to the 1% of the population that can't fight it off. Medical Science does not know why. So it still lurks hidden inside me... laying low... till the next time it sees a door open in my immune system where it can rear its ugly head and cause cancer once again.
... So this is my life.
... So this is my life.
P.S. I'm extremely happy that I have lost 30 pounds.
Oh, Linda, these side effects sound just awful. I hope that at least some of them diminish and you can enjoy life. Thanks for sharing your experience; you are very brave to tell your truth.
ReplyDeleteThank you Barbara. I feel the need to document my experiences as it helps me to cope. I must remember that I've come a long way this past year and hope to see more improvement in 2018.
DeleteI thought I'd had a bad year, but yours seems to have been even worse. I am glad to hear that you are still alive, but I am under no illusion that sometimes you might wish that you weren't. Dealing with serious and chronic illness is not exactly "fun", is it? I hope we both have a better year this year. If you ever feel the need to unload then please feel free to contact me. My only proviso is that we intersperse the "it was awful when ..." with "it was nice when ...".
ReplyDeleteIt was nice when I didn't have cancer. How's that?
DeleteI guess I hadn't realized that yours was squamous cell carcinoma.
ReplyDeleteWe got the confirmation call on Thursday that Gary's tumor had not invaded any additional area, and that he was cleared of needing any additional surgery. For the next year, however, there will be follow-up visits at six-week intervals.
Hope you will be eating more normally soon.
Virtual hugs,
Judie
Happy to hear your good news about Gary.
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