What’s left after my cure for nasopharyngeal cancer

Chemo and radiation: the *gifts* that keep on giving. Hang in there.

good morning caffinated1, lilyann here. they wanted to radiate me too, but, the radiologist said i had to have any loose teeth removed. i was seriously going to do the radiation as my oncologist said: 2 weeks at low dose, so i thought well maybe that wouldn't be too bad. thing is...they wanted to do it a week after i had 3 teeth pulled and here i am over 4 weeks because when i went back to the oral surgeon, he said to give it another 2 weeks because of some bone and cartiledge in the #28 pulled tooth. then it feels like this bridge in the upper front feels funny. if i remember correctly after i had the radioactive iodine, i read where down the road lots of things happen. everything after the fact. hinesight and foresight. ok. i too, am still having the swallowing, coughing, talking(not), some nights i wake up feeling like i can't breathe after a coughing spell, which is every nite. now back in may of 2023, i took the high dose of radioactive iodine. so that was suppose to kill off any remaining cancer from the 2 surgeries i had. well, (not) so now my lymph nodes are enlarging on both side of the thyroid that i had taken out in january and march of 2023. also too when after these surgeries they were also going to do the radiation but then said to where it was not amendable at that time. so whatever that means. so here i am, an octogenerian, wondering if i should or shouldn't take the radiation?? thing is, i still have some other teeth on the left side of the mouth. the other thing is........i was hoping to get those lymph nodes shrunk some in the hopes of swallowing and less coughing. i do have to say this too as i am so puzzled by it to begin with....i said to the dr. i just don't know what is causing these "coughing spells" we are talking, 2020. i mean: i was coughing on the operating table for heavens sake, the second operation they really had to hold down on that thing over my mouth to put me out but i can still remember fighting them. so long story short. i had to read your story 3 times, sounds like you are a fighter and i wish you the best. please keep in touch, as it seems like the dental work hits close to home for me too. onward, forward, upward.

lilyann here, i forgot to mention that they gave me 6 months to live. have a great day everyone.

🙏🏻

Hi @caffinated1 Welcome to the Head and Neck Cancer group although I am sure you would rather belong to practically any other group than this. But life is what happens when you are making other plans, so here we are.
I hope you can crawl back up out of the unhealthy valley you are in so you can get a handle on simply dealing with the daily battles you are used to. Sometimes some of us have just surrendered to a recovery facility, costing us practically everything just for a chance at survival. There are no simple answers or simple solutions.
I myself at one point said to my physician, "Doc. Are we going to wait for the autopsy or are we going to figure this out and get me back to healthy?"
A doctor shouldn't tell you "Sorry". Sorry doesn't feed the bulldog. They should or really must either help you or make your last days comfortable. Ignoring you is not an option for a licensed physician and perhaps you should remind them of that fact.
I wish you well in the long run. Many patients here on this forum can help you dealing with issues that may come up. Don't hesitate to ask. Even if you just want to vent or chat, someone is here. Courage.

Thank you, I’m trying my best to put weight back on but I have to do it slowly because after hydrating and feeding my stomach just gets woozy and I get neck cramps….yay….still not as bad as the first bite syndrome I had initially (nothing better than lower jaw and tongue spasms….and the really odd part was it was only the right side of my tongue that would cramp up….even more nuts is they’d always last for five minutes) but it still isn’t close to fun. One of my big issues other than health is with social security. I applied after going on disability and have been denied twice, now the possible 18 month wait for a hearing. All they need to do is actually look at my doctors records and better yet, see me, listen to me.

I would do anything if I could wake up tomorrow and be healthy and back to work. I’ve never wanted to be sidelined, I’ve always been a very active person and I loved working the job I had.

Many times with social security disability people find an attorney who handles just these cases. The office is usually very close to the social security office in most cities. They usually get quick results but they pocket the back pay from when you first applied. To me in many ways it sounds like a scam but it works. You end up with disability SS plus Medicare part A, and B if you want it.
Or simply find a friend in the social security office and be a pest. A two year wait seems to be normal but it can be less.
I know you would rather work if you could. I know others in the same boat and they all wish to pull their weight sincerely. This wait and not knowing can eat a person up sometimes. There are people and organizations likely close to you that likely can help you out in the meantime. It’s OK to ask for help.
I survived this cancer for a reason and I know what it’s like to find your strong self helpless and fighting. In a forum similar to this years ago someone helped me through a very difficult surgery. I doubt I would have a life without that help. And we pass it on or pay it forward as folks now say. And I don’t mind doing this just as others near you don’t mind helping you out if you just ask.
You can do this, one week at a time.

Dear Lilyann
So very very sorry for all of your complications. As someone said, live your best life! My husband too is suffering greatly right now as a result of the radiation. After having four liters of fluid removed from his lung (pleural effusion) he can breathe a little better, but has a constant irritating cough. And the fluid removed shows cancer cells. An upcoming Petscan will show what and where. He, and I concur, have already decided not to fight it this time. More radiation and chemo is just not in the picture. He will let the cancer take him, hopefully with palliative care and many many pain relieving drugs. He will likely be given a time frame as you received, Lilyann. Such sadness all around. We have one loving daughter who is devastated by this. We send you our best wishes …

I see you feel hopeless, but you can’t give up. That’s when cancer wins! Please don’t think for a minute that you won’t find a Dr. to help you. They are out there, but if you quit looking you never will. Also God works miracles. Not being a religious zealot-just give prayers a try too. Can’t hurt. Sending hugs your way.

dear 7881188, lilyann here. so sorry to hear about your husband and can fully understand your devastation for all of you. so glad that he can get the fluid removed in order to breathe better, that is a lot of fluid. the showing of cancer cells however is not something none of you expected after going through all that radiation i'm sure. yes, i believe that is how my oncologist put it that i am on palliative care. living your best life sounds appropriate, however, when you are in such pain its hard to think about the things you would like to do. i just hate the fact of taking any pills. know that you all will be in my prayers as i feel a lot of sadness for all of you and i'm guessing your husband is not up in age as i am. just the thought, the word, the big "C" as they use to call it is mind-blowing enough. it is so hard to think about anything else. could you please keep in touch and let me know how the pet scan turns out. my sister tells me to fight lily, fight. she is an r.n. and works in a top hospital in philly, however, she is a neuro nurse, use to be in cardio-thoracic. so she is not familiar with thyroid cancers as she says. she just turned 71 and plans on retiring in 2025 . so know that my heart is hurting for all of you.