Oncocytic Cell Carcinoma with angioinvasion

@ejjb
Hi Erin!

Just want to wish you all the best for your surgery today and a speedy recovery. 🦋

@samjdp Thank you! The first surgery was a breeze; this one, not so much.

Long rant below LOL, more about me just needing to vent, so please feel free not to read! < 3

I ended up getting a staph infection in the neck wound immediately after surgery. They lanced it open (while I was awake, so that was a joy) and drained it, but the infection was bad enough that I had to go in for surgery #3 on 11/25 to reopen everything, clean it out, and install a drain.

I was in the hospital for 4 days after that on heavy antibiotics. The nurses were literally terrible. I kept asking for water and never got it, and I couldn't go get my own because I was hooked up to a 3 line IV and couldn't leave my room. I have hypoglycemia, and they kept missing meal time, resulting in me having blood sugar issues. They woke me up every 45 minutes for vitals, and I went 48 full hours with no sleep. I legit thought I was going to have a mental breakdown from sleep deprivation!

They told me on Friday 11/28 that my kidneys were having a hard time, I told them yeah because no one will get me water to drink! So they hooked me up to a fluid line along with all the antibiotics. They wanted to keep me longer, and I asked "ok can you forego the vitals every hour so I can sleep?" They said that was hospital policy and they couldn't. I told them I was checking myself out then, and they needed to advise me on home care.

They finally caved and sent me home Friday night with lots of antibiotics to take and a flush/drain regimen for the neck wound that I do 3 times a day. And today I finally feel like I'm going to make it! 😀

If you made it to the end, thank you for coming to my Ted Talk! lololol

@ejjb Hi Erin!

Oh my gosh - what an absolute nightmare surgery you had! I am terribly sorry to hear that you had so many issues. I am also deeply annoyed for your sake that the nurses were as awful as they were.
Nursing personnel make all the difference in the way a patient recovers.

Have you been advised on the RAI going forward?

My scan has been postponed to the 14th January now - very annoyed by that as I have had blood works done now, and judging by those it seems the RAI wasn’t as effective as hoped and I just really want to know “what next”

Please take care of yourself and take time to rest and recover - it’s you first now!

Reach out any time… always available for a Ted Talk…😜🤣

Hugs to you.
Samantha. 🦋

Yeah, they said that they will do a 6 month scan to re-evaluate due to the blood works not looking as they hoped, and then potentially having another round of RAI. I sincerely hope that won’t be the case as I am not looking forward to coming off my Eltroxin again!

Initially they were going to do a 3 month scan then 6 months and follow ups/treatment accordingly.

The only certainty with all of this is the uncertainty…🤣

I am in South Africa, so I don’t know how our treatment protocols differ, but I imagine it can’t be too different.

I personally think the sooner you have the RAI the better.

I hope you aren’t in too much discomfort still and that you are healing well.

Feel better soon! 🦋

@ejjb Hi Erin!

Oh my gosh - what an absolute nightmare surgery you had! I am terribly sorry to hear that you had so many issues. I am also deeply annoyed for your sake that the nurses were as awful as they were.
Nursing personnel make all the difference in the way a patient recovers.

Have you been advised on the RAI going forward?

My scan has been postponed to the 14th January now - very annoyed by that as I have had blood works done now, and judging by those it seems the RAI wasn’t as effective as hoped and I just really want to know “what next”

Please take care of yourself and take time to rest and recover - it’s you first now!

Reach out any time… always available for a Ted Talk…😜🤣

Hugs to you.
Samantha. 🦋

@samjdp
How did your scan go? If you need to vent, I'm here.

@ejjb

Hey! Good to hear from you.
Still no scan. I’m due for full blood works again on the 01/03, then seeing the Dr on the 11/03 to book the scan. Very frustrating. The hospital didn’t have the iodine capsules for the scan 😡

How have you been keeping and where are you at with treatments now?

Huge hugs to you. 🤗

@samjdp
They didn't have the iodine capsules!?!??! Wow, that is frustrating!!!! Kinda want to scream at them "then go find some and bring them here!"

I just finished RAI therapy, 2 weeks out from it. They said I'd get a 30mci dose, but I ended up getting 155mci based on the body scan they did. The side effects were harder than I expected, but thankfully, most of them have subsided now. I do have lingering taste loss. Looking at other posts some say that lasts up to 6 months--which isn't fun, but just looking on the bright side that it isn't permanent.

My body scan did come back clear with no metastasis anywhere! I'll keep you in my thoughts, hoping your scan in March comes back clear too!

@samjdp
They didn't have the iodine capsules!?!??! Wow, that is frustrating!!!! Kinda want to scream at them "then go find some and bring them here!"

I just finished RAI therapy, 2 weeks out from it. They said I'd get a 30mci dose, but I ended up getting 155mci based on the body scan they did. The side effects were harder than I expected, but thankfully, most of them have subsided now. I do have lingering taste loss. Looking at other posts some say that lasts up to 6 months--which isn't fun, but just looking on the bright side that it isn't permanent.

My body scan did come back clear with no metastasis anywhere! I'll keep you in my thoughts, hoping your scan in March comes back clear too!