Never ends

Drivingdaisy

Hi everyone, My name is Lisa & I had Ssc of tissue where left tonsil was.  Tiny, had for 3 yrs all Drs I asked said it's nothing, irratition  from allergies & a couple colds?   Was sent to ENT for meds to control 365 environmental & 7 food allergies.  Nothing was helping even steroid Sprays always coughing, sneezing, runny nose, alll day everyday.  Live in very tropical Area of Florida so rain, humidity = mold.  Even allergic to roaches which are Buick's down here.  Well ENT didn't like tiny red spot tho I felt other than allergies great, full of energy, walked 6-8 miles often a day.  Traveled to Europe a lot & loved life.  Ate anything & everything was 140 from bout of pneumonia after a surgery with a month of full ton steroids.  So he took biopsy, my first mistake, was Cancer took second was HPV 16 when ENT unleashed the beast.  Took 1/2 of spot than was sent for PET when they claimed in lungs and base of tongue but false neg.  Lungs knew from lung Dr watching them 3 yrs only scar tissue, & that is the same to this day.  ENT saw NO base of tongue either.  But Staged a 2-3 due to different spots.  No lymp, no tumor just skin.  So Cancer Chemo & Rad decided to blast it.  This was 2016.  They pushed that I HAD to start immediately since was there 3 yrs but Docs never changed feel fine.  Good labs no problems but allergies.  So decided full blasting 70 gs on old, old machine, broke down 3 times in the 7 weeks/ 5 days a week of treatments.  2 Chemo drugs Taxol & Cispliatian ( know to cause low sodium issues) 7 weeks/ 1 a week.  Needless to say was Not as We we're told targeted burnt crispy from nose to collar bones, both sides.  Ends with No saliva but Chemo saliva, no taste bud, fried thyroid, 5 not good stomach issues I did not have before treatment, low sodium to point of life threatening if goes to long.  1st hospital stays beginning of 2017, 1 yrs later and been going down hill yrly.  Now told my inability to blow nose, cough up, sneeze, cry, ears damaged, eyes damaged all treatmen related & all side effects permanentl.  5'5" , 99 lbs can't gain weight, cold & heat intolerant so No beach, boating, walking in sunshine, life so limited.  Cancer Dr won't talk to Me cause tried to say I had low sodium before Cancer.  Your tests you gave Me before I started my Sodium was 140 far from low, he now won't talk to Me cause won't help with side effects he caused & Rad, sodium drops very low been hospitalized at least 10 times or more in 4 yrs.  seeing new ENT since old one moved away and he didn't scope Me.  Asked why " cause I can see discolored area where it was & no Cancer so why should I scope & put you through that, your throat so raw.".  Mouth always extremely dry full of that mucus, ropy, gunky tasting Chemo saliva makes it more sore.  That too permanen.  Will never change to normal.  When he looked up my nose said you are terribly congested told him can't feel it, clean 2-3 x daily with saline & Zicam allergy nasal swap.  I try to stick too no prescription only natural drug free food & products but said might help sleep with Flonase or nasocort to clear it.  Doesn't do a thing.  As long as I wear a Breathrite all day I'm fine, can't feel allergies anymore.  Can't tell by symptoms if I have allergies, cold, flu, nothing show nothing since doesn't function.  Why all this is to please any newbies do NOT stay in little hometown go to big Center, get 2-3 opinions.  Went to Mayo, nothing they could do for Me but would never ever do what My Drs did.  They actually took my life now just live like an invalid.  Please, Please, Please don't rush if not major get all the info you can didn't even know Excellent Center in Tampa hr away but 1st ENT never told Me they just referred to each other in this town.  So don't do what I did, I can barely eat, drink much, going out to dinner ( husbands & families favorite) forget cant eat a thing on menu.  No spices, no pepper, no lactose, no fish, I'm wasting away & cant stop it due to thyroid T3 Drug.  Is FT again on My menu?  If I could cry I would but can't.   They took My fun filled life at 58.  They could have finished cutting it out & watched it.   My body had been fighting it for 3 yrs doing just find.  Please always weight opinions, knowledge is power, research, get 2-3 opinions else where, this is a miserable Cancer why suffer more than you need cause Drs want their positive numbers.   But We all know there are never any guarantees with Cancer possibly coming back after many, many yrs.  I want quality NOT quantity but they never listened did what they wanted.   Good luck to everyone warrior in this horrific Cancer it can take & take & take, I'm proof, every yr add more problems.   Love & hugs to all be strong.   Lisa (drivingdaisy or just Daisy).   Oh forgot the stroke in 2017 from treatment.  Go big or stay home, best Clinic or Hospital or die slowly.  Rather just go but doesn't seem in My cards.  Just live on & on in misery & pain.

wbcgaruss

Daisy Thanks For Putting Advice Out There

Get a second opinion and go to a major hospital if possible especially if you have the slightest doubt about the diagnosis as it can change your life forever with the long lasting effects of some cancer treatments-take Care-God Bless

Drivingdaisy

wbcgaruss said:

Daisy Thanks For Putting Advice Out There

Get a second opinion and go to a major hospital if possible especially if you have the slightest doubt about the diagnosis as it can change your life forever with the long lasting effects of some cancer treatments-take Care-God Bless

Russ

I commented but they didn't send it, tired of being Censored.  Will text later.