tips please for TORS & neck surgery.

jim108

Greetings.

I'm having TORS on the base of the tonque and regular surgery on the top lymph node(s), just under the jaw bone - both on the right side on 8/24/21. They have yet to confirm the primary and are going exploring on the base of the tongue. Squamous Cell + HPV. This will be in Seattle at Swedish and then any Radiation / Chemo will be in Bellingham.

I've been to PT who has given me exercises to strenthen mouth & neck muscles in anticipation of Radiation. I've been told that the pain (from the mouth area) normally lasts 1-4 weeks where I'll need pain meds by the nurse; that I won't be allowed to bend over for 2 weeks or so to keep blood from rushing to the site and that there will be a 15 lb lift limit for 2 weeks - although she didn't know if it was 2 hands or one. I'm sure I'll get more instructions post suregery. They say I'll be in the hosptial 1-2 nights.

I have a ton of protein powder and shakes etc. things for dry mouth.

Any suggestions to get ready in terms of pre planning, managing expections etc and what I might be able to expect would be appreciated!

Thanks,

Jim

 

wbcgaruss

Jim I Am

praying a smooth successful operation and procedure and of course the same for your recovery, certainly wishing you the best.
I can't comment on the operation and recovery physical aspects as I have no experience there.
I would like to say though plan ahead as best you can to have things caught up in your life for the expected time period and maybe a little ahead.
Things around the house you usually do and outside, etc especially things only you can do.
Or make plans to have someone else to do them and train them if necessary.
And things such as lawn mowing or other things that need to be done you could make sure you contract it out ahead for that period of time if you don't have someone to take over for a bit.
Allow a little extra if possible because my last stint in the hospital for a lymph node operation got a bit extended with complications.
I am not saying you will have any complications or problems but planning just in case is good.
Wishing You The Best-Take Care-God Bless-Russ

big G

TORS

Jim, they will give you some pain medicine for soreness take what you need. Get plenty of rest and eat soft foods, eggs, mash potatoes and gravy, shakes,etc. In 2 weeks you should be improved. Sounds like you are planning which is good. You can do this prayers your way.

Remington25

My tip is to just realize the

My tip is to just realize the recovery is harder than you think and when you are at a mental breaking point, it gets a little better the next day.  I am a tough person but I found myself scared thinking it wasn't going as planned and it actually did.  The surgeons are so skilled and the body is amazing that it heals from these things but just give it the little time it needs.  Do the excercises/stretches they give you.  Set an alarm to do them and recovery will go as good as it can!  Good luck! 

jim108

thanks everyone! i had bypass

thanks everyone! i had bypass surgery a few years ago and everytime i sneezed it felt like i was being stabbed in the chest (that's why the give you these heart pillows to hold). i also remember being told that you can feel great and then suddenly you are exhausted and then it takes a while to build up your engery again. they really talked about conserving one's energy.

i've made arrangements for someone to cut my lawn and have plenty of shakes etc.

i plan to do everything i can do and then i just have to let go and surrender to the process. 

BeagleDad

TORS experience

Hi Jim .... first off, each of us are different and each surgery is unique.  I had TORS for left tonsil removal and then followed up with manual surgery to remove 4 lymph nodes on 11-24-20.

What I remember most about the post op time is the feeding tube and the difficulty swallowing.  Good that you are doing pre-op exercises, but that is only the beginning.  It was DAYS before I could even consider sending somethng down my throat, and that was just 5 ml of chicken broth in 1-2 ml "shots" from the syringe. Which, by the way, tasted AMAZING.  It is not just about the muscle trauma, but at least in my case, it was the risk of aspirating foods or liquids into my lungs and they had to do a little esophagus work as well.  

I was devasted after the first week when tey removed the staples to find that I was not going to be eating any time soon ... I had thought I would "be ok" for Christmas dinners.  Uh-uh.  I had to deal with that nasal tube for several weeks until they got the NG tube installed.    

I know this will not make you happy, but I also know you want the truith so you can prepare ..... the blood and mucous in my throat made me want to "hawker" .... since my throat is where the surgery was, the LAST thing I wanted to do was "hawker" ... but I HAD to.  It was gross and painful.  I carried a plastic baggie around with me and made sure a small trash can was always close at thand.  So I was constantly aggravating the very center of the pain.  They gave me some liquid pain killer, but only enough for 2-3 days.  I remember longing for that 4th hour every day until I could get another 5ml of pain killer.  But after the 3rd day all Ihad was crushed up tylenol delviered though that HORRIBLE nasal tube.  I HIGHLY recommend you make sure (or your caregiver makes sure) you get 7-10 days of pain killer supplied to you.  

I had a very difficult time sleeping...with the nasal tube and mucous I could not lay my head down.  Best I could do was tilt it or rest my head on my hand until the had gave way or fell asleep.  I can clearly remember counting not the hours, but the minutes at night as I heard every tick of the clock in our kitchen.  Oh, if I had only had more pain med.  

On the upside, after a week it started to get better, after 2 most of what I descriebd above was long gone (replaced by other things, but that is another post).  

"Feeding" was another issue.  The nasal tube took SO LONG to get a bottle of ensure in me.  But it was also a real pain in the butt since I could neither sniffle nor "snot rocket" and my nose dripped a lot.  I found that Qtips were my best friend; use your imagination.  I also had to moisturize the area right under my nose due to discharge.  Nothing serious, but when in all that pain, every little discomfort is amplified.

There were MANY times I asked myself if the surgery was worth it.  After all, I STILL had to do (low dose) radiation and 7 sets of Cisplatin chemo.  But ya know what?  I had my first post treatment CT scan about 2 weeks ago and I was ALL CLEAR.  I have now been in recovery longer than I was in treatment.  I also get to help folks like yourself brace and prepare for what is headed your way.  

Jim, I remember prior to treatment how scared I was from all the stuff I was reading..how HARD it sounded, how PAINFUL.  I kept thinking I was on a train tracks with the locomotive headed right at me and there was nothing I could do.  We all deal wtih it in our own way.  I kept Cancer UPdates on Facebook and interacted with my friends and contacts throughout it.  

I will leave you with this ... given all the "bad" stuff I told you about ... over these past 5 months of recovery I have got to enjoy TONS of "little" victories.  Getting taste back, hell, just getting to swallow (I still have some swallowing issues), being able to eat bread again like a hamburger bun or chili dog bun.  Getting my energy back and fgeeling stronger every day.  Sure, man, there is a LOT of bad and icky ahead of you ... but you have dates for those things; you know when they will end.  And when they do, the victories start coming.  

One thing is for sure, stay here.  Read our experiences.  Yes, we are ALL different, our cancers are ALL different.  Take what works and leave what does not.  You cannot escape this train.  But with the help of family, friends, and us here, you will get past it.  There is A LOT of experience on these pages.  SCary, to be sure, but also very very helpful.  And know that in 4-5 months, you wil be RIGHT HERE watching for someone else fixing to go through this and offering YOUR advice, councel and wisdom.  Make the most of a bad situation by using your time in this hellish prison to help those that come after us.  Sadly, this train has no caboose.  

Don AKA Beagledad