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just some questions on what I can expect

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

Hi guys now that I'm less then week away from surgey am wondering what I should expect.As in pain mangement after surgey.Have already been told 7-10 days in hospital and will have the peg tube put in.Do they teach you just how to use it and where to get the supplies I'll need.Will I beable to take liquid though the mouth with the peg in.Any time table as when I'll beable to talk.On weds before surgey my doctor wants me to meet his partner so everyone knows eachother.I'm from cleveland and from what I hear at the hospital I'm in good hands as my doctor is very respected which I's thankful for.Sure some of these questions has gone though others heads as well guess it's better to go though the known then the unkown..

Hondo's picture
Hondo
Posts: 5636
Joined: Apr 2009

Well all I remember is walking up and seeing this long tube pocking out of my belly, then a nurse poring a can of stuff in me. After that I took over and did it all myself, but had a lot of problems with the milk in the cans. It was just too strong for me so I learned to cut it with other liquids. When I got home I talk to Denny who lived on the PET for years and he showed me I could eat anything through the PET, I just needed to blend it up good. So now 2 years later I can eat everything anyone else can eat. I just blend it up first and into the PEG it goes.   

The PEG is not all that bad, just something you get use too after a while.

 

Will keep you in pray through your surgery

Tim Hondo

KB56's picture
KB56
Posts: 237
Joined: Apr 2013

I don't recall what type of surgery you are having but since you'll be in the hospital for a number of days it's much different than my tonsillectomy.   Good luck with that and to a speedy recovery from the surgery.

If you're having radiation (i couldn't see much from your profile) on your head or neck after surgery, go get a flouride tray from your dentist as the radiation is very hard on your teeth/saliva glands and the extra flouride will really help.  I've used it every night since I started the treatments and still do today 7 months post treatment, and probably will the rest of my life.  It's a pretty easy process as you just put flouride in the tray and put it in for 5 - 10 minutes and take it out... pretty simple.

I had a PEG tube as well and they should set you up with a nutritionist (sp?) to help you understand what you need from calories, protein, vitamins, etc.  I didn't blend up my food but chose the box route and I had Jevity (an Abbot Labs product I think) that was high calorie/protein, but no fiber which I later found out was REALLY important.  You can also hydrate and take your meds through the PEG as I couldn't swallow the smallest pill so what medicines I couldn't get in liquid I would crush up the pills and mix with water and take it via my tube.   I couldn't handle the volume from the tube gravity fed so I had to get a pump to slow the delivery into my stomach as with the gravity I felt nauseous all the time as the gravity method came in so fast.  The pump helped but it took me about 10 hours to do 5 boxes of food so it took forever but I could handle it better.   I didn't like the PEG but lost 30 pounds with it so I can't imagine how much I would have lost had I not had it.   It was a life saver for me and being able to stay hydrated through it is huge as I got dehyradted twice and had to go get fluids via IV so i cranked up the amount of fluids through the PEG which helped.  If you get dehydrated you can't imagine how bad it makes you feel so if you can avoid it by taking fluids through the tube it will really help.

As far as drinking fluids, it's very important that you always continue to sip or drink as much water through you mouth as you can or else you can actually "forget" how to swallow and that is a REAL problem.   As long as you continually sip or drink you should be fine there.

Good luck as you start your journey.    Most, if not all of us, have been down a similar road so stay as positive as you can and you will get through this.

Best of luck,

Keith

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

I will be going over everything weds as far as I know.But so far as he has told me they will be taking out part of the tounge underneath guess it's call base of tounge.Then they are going to take muscle from my thigh and grah it in where they took away.He told me I would go though radiation then after my explortory he mention to my brother about cemmo The 7-10 days is to make sure the grah takes and no infections set in

MarineE5
Posts: 745
Joined: Dec 2005

Hi 61,

After reading your 1st post on Jan 9th, I see that you are having some surgery similar to what I had a bit over 9 yrs ago. I had Base of Tongue cancer and had over 1/3 of my tongue removed. Like you, I also had a neck disection, but on my right side. I also had a trach, and PEG tube for feeding. So, I will try to answer some of your questions.

I was able to talk the next day, but was instructed by my Surgeon to wait a few days to talk as he wanted my Tongue to heal up a bit. I had 3 drains from the incisions along my neck from the disection. The Nurses measured the fluid draining and the color. I had to do this at home also as I was released after 3 1/2 days because I learned how to do everythng that they were showing me quickly. Cleaning the Trach, and using the PEG Tube with the tree on wheels.

I was given Nutrin 1.5 thru my insurance co. and it was delivered to our home the day I got home, 10 cases and I needed to take in 7-8 cans a day. I used the feeding bag on the tree on wheels that drains in to the PEG, but it restricted me to a chair for roughly 1 1/2 hours. So, I removed the plunger from the syringe that we are given to flush the tube before and after feeding. I used what is known as the gravity method and many here have used it. You can get 1 can into the PEG/stomach within 10-15 minutes, so I usually was done with 2 cans in 20 minutes. Room temperature is best so as to not get stomach cramps.

While I had the Trach, I was told by my Surgeon not to drink or eat anything until he told me to. I had the Trach for roughly 6-7 weeks, once removed, I did a sip test in his office and he told me to go ahead and drink fluids and eat soft foods to start with until I felt comfortable to try other foods. The Trach was down sized at each office visit and that was usually every 2 weeks or less until the trach was removed. The staples on the neck disection were removed roughly 12 days after the surgery. I hope this gives you some help in the time frame of events.

My Best to You and Everyone Here

 

 

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

for a punctured lung (they did that putting in the Port) when I got my feeding tube.  They sent me home without instructions or equipment....I kept looking at it wondering how the hell does food get down there??  It ended up that I didn't use my tube till after radiation, so yes....you can drink and eat even with it in....actually, using your mouth and throat everyday is advised.  You don't want to lose your swallowing abilities. 

When it came time to use my tube, a home health nurse came and brought supplies and taught me how to do it.....and, I asked folks on here how this was done.  I ordered the gauze things that fit around the stoma of the tube, the saline, and the tape for the gauze off the internet, but I'm sure they can be found at a drug store. 

Maybe before you leave the hospital, have a nurse show you how to do it.....and ask for a couple of their syringes to take home....I mean, since you're already there, and they probably throw them out after every use (you can use the same one over and over at home).

p

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

do they manage the pain pretty well also?

jackflash22's picture
jackflash22
Posts: 222
Joined: Aug 2013

PS from my other posting.  I was given a morphine device that I could press if I got any pain. A bit like childbirth you forget the pain after the event and this isn't anywhere near as painful as that. I can honestly say that now I can't remember any pain, a bit of discomfort only. 

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Be sure and have someone with you who can help you keep track of the pain medications and tell you when you need to use the pump if you fall asleep.  Also they can give you a liquid in the feeding tube to prevent nausea from the pain medication.  It is called an anti emetic and is usually zofran, phenergan, or others.  I think it is best to start out with a stonger pain medicine for all you are having done and then gradually move to lesser medications.  

They gave me Vicodin (hydrocodone) Q 4 hours PRN (as needed), for my base of tongue surgery (which I did not have any grafting for), and for the selective Left neck dissestion.  I had not trach but did have an NG feeding tube.  The hydrocodone only lasted about 3 hours and only just took the edge off of the pain and was woefully inadequate.  After suffering for 3 days they offered me the morphine and I declined it as I was getting ready to be dicharged the next day, so that did not make sense to me.  

They sent me home with hydrocodone pills to swallow which was very painful.  Ask for liquid pain perscriptions when you go home as swallowing will be difficult.  You can put Roxycodone in a feeding tube.  It is very hard to locate in pharmacies where I live so ask where you can find the pain medications they send you home with.

You will do well if you know what to ask for.  I knew what to ask for but trusted my team would know what I needed for pain and they did not!  Sometimes the nurses know more about pain management than the doctors.  Best to have a pain management plan in place before surgery!

PJ

jackflash22's picture
jackflash22
Posts: 222
Joined: Aug 2013

I had  back of tongue surgery. They did it via neck dissection with a sidewayT cut from  below my ear and across the throat from mid neck to my collar bone. they then carefully worked the way through till they reached my tongue,, removing 29 lymph nodes as they went. I had 3cancerous nodes. then my tongue was mended with a small part of the inside of my cheek including some muscle and vein. the cheek was then pulled through my tongue and stitched leaving it still attached to the cheek at the back. there's hardly any pain after as the side of operation is numb months after the op. I woke up with a trache in my throat and a food drip via my nose. I remember having the trache suctioned out several times of the day to remove mucous. I was in hospital 2 weeks until I could eat after the trache was removed. they gave me swallowing lessons. I'm in UK and went to the Oxford John Radcliffe University hospital where they try new procedures. The surgeons were Mr potter and mr silva they have written a paper on my procedure I think for the Lancet. Repairing from the inside of the mouth was pretty new. I recovered quickly and was able to talk and swallow. I had no skin graphs or cuts from my arm to worry about. now I can't remember any pain after the op. the scars on my neck have disappeared I rubbed my scars with bio oil (bio-oil.com) . I hope this answers the questions newbies ask.

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

Thennnies61,

They will more than likely give you medicine for pain.  Don’t be a tough guy, if it starts to hurt take the pain meds.  You will have bigger battles to fight; pain should not be one of them.  For me, bot surgery & jugular vein dissection, discomfort, but little pain (cross your fingers)

PEG tube should be explained to you, it is like riding a bike once you get the hang of it.  For me it was gravity drip two cans of Jevity and flush with giant syringe (easy stuff).  Your method of suspending the tube will be more interesting.

I was able to talk the same day, just some discomfort.  The rads had a more pronounced effect on my voice, but the degree varies wildly amongst H&N members.

I started drinking lots of water in January 2012 and have never let up.  For me the best advice I received from the H&N forum is drink water and swallow, swallow, swallow.

It is a scary (unknown) place you are in right now. We have each been there and have gone through the door.  It is not fun, but you will manage and fun will be waiting for you in a few months.

Matt

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

Thanks everyone..When younger was taught to work though the pain you know football wreastling the military but at 61 maybe not so much.Figuring that discomfort can be managed and can't be to much worse then it now with tounge slighly swollen and all that goes with it.The hospital I'm going to is suppose to be one best around for cancer treatment as every step so far has been very though.I have always kept my glass half full and gonna try to keep it that and with all your help can will be able to say ok this is how it's suppose to be and not panic.But am getting alittle antsy as thurs morning closes in.If you have any other thoughts or can remeber your first few days love to hear about them..

donfoo's picture
donfoo
Posts: 1157
Joined: Dec 2012

You will be in good hands while in the hospital. Once you leave there are only three things you need to satisfy and you WILL get through it.

HYDRATIOJN -- NUTRITION  -- PAIN MANAGEMENT.

So simple yet so essential. Toughing pain out in this situation does not help, it hinders your recovery so be easy with the narcs and take as much as you need to put the pain down. You won't become a drug addict and your body will heal better. You will be able to consume orally faster and be well faster so don't fight it.  Good luck, Don

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

If you enjoy relaxing music bring it and earphones/earbuds.  It can help you sleep, relax and block out noise while in the hospital.  I also brought a comfy blanket throw from home (did not use while in ICU), lavendar oil, etc.  

I think you said earlier you will be meeting with your team the day before and that will be the time to get your pain management in place and ask all of the questions so you may go into surgery letting go of concerns.  

I prepared a prayer for the surgical team and they read it before they put me to sleep and it helped me relax before the surgery.  I did not require the Vicodin they offered. 

The time after surgery will go by quickly and you will get through it.

Best wishes to you next week.

PJ

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

the same surgery as you are having, I had a cancerous mass on my epiglottis, and it, along with the epiglottis, was removed by di vinci robot. I can only speak from my experience, but the pain was not severe at all, and I was given liquid oxycotin as needed... I was in the hospital 8 days and had the medication refilled 3 times..that was 2 years,3 months ago.

Best of luck to you, My surgery was at The James in Columbus, Oh. Cleveland is a highly rated hospital, also. Not lying, you're gonna feel like crap for a while, but, there is a light at the end of the tunnel. Please keep us posted

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

My cancer was of the lower jaw. It was replaced with my fibula. A skin graft of my upper thigh was used to cover where they removed the fibula. Since our surgeries differ, I can only speak to the skin graft from the thigh. I was warned that it would be one of the most painful parts but it wasn't. Yes, it certainly hurt the first few times that they changed the dressing but it healed quickly. My surgery was 19 hours and I was intentionally kept in an induced coma for a couple of days then hospitalized 2 weeks. My pain was extremely well managed. Just so you aren't surpised, the skin graft could result in hair growth inside of your mouth. Don't be alarmed as the radiation permanently takes care of that issue. I recall walking in the hospital the morning of the surgery but don't recall anything past the sign-in desk. I really only recall about 2 days before my release, so obviously, their pain meds worked. I had a g-tube rather than a PEG. So far as I know, you couldn't put food in it, just Ensure or the like. You want to make certain you try your best to continue to swallow whatever you can (ex. water). I had a temporary trach in the hospital because they did not know how much swelling there might be. I did not do too well with it but it was removed before I went home and healed up in a day or two.

Prayers are being sent your way 

Candi

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

A big Thanks for all the input.Have an appointment weds with my surgen's partner as they like to get to know eachother between patient and doctor.And hopefully the game plan is in place.Being confortable I can handle but one thing that always drove me though the wall was alot pain in my mouth ie teeth gums ect.Pretty sure I have most things covered as far as making myself comfy with pj's sweats have a few books and word puzzle books which sounds like I'll need more after the hospital stay.Cemmo hasn't been mentioned yet and hopefullly won't be but radation has as the doctor has said it will be 2-3 months before I can go back to work.Have been getting use to ensure and instead breastfast because the last two weeks it has just been easier to eat along with pudding and quaker oats.But the oats has been pretty much been blocking me up.Tounge seems to stinging alittle more and more was given some meds for thrush which helps some.Just found out the hospital I'll be in University hospital in cleveland has internet so can give a blow by blow account.lol Again thanks for all the input sure will make it easier knowing about what to expect

Terry

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

It goes down the throat better.  

Good thoughts to you for your surgery and recovery,

PJ

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

Had to watch the oatmel to much fiber and binded me up will have to try the cream of wheat after the operation and allowed to eat thanks for the tip..

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

terry, praying for surgery to go well and for a quick and easy recovery.  when you are up and able, let us know how you're feeling.  we'll be thinking of you.

God bless you,

dj

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

Are you able to shave or brush teeth after surgery??

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

thennies61,

If you go through radiation treatments, then shaving with a razor is heavily frowned apon.  To the point where they tell you DON’T.

I confess, I got caught and got a “dirty eye” and scolding from my doctor and nurse.

What the heck, I did not want to look like a scrounge, but in all fairness they did tell me to use an electric razor.

Matt

thennies61's picture
thennies61
Posts: 169
Joined: Jan 2014

Thanks Matt I thought I seen here somewhere about an electric razor and always wanted one so what the heck went and got one.I did just find out that at the hospital each tv is hooked up to the internet and they give you a wireless keyboard so guess I'l be able to ouch-ouch and vent..I was thinking about how much energy I'll lose after the operation plus using the peg.Is there a way to put vitiams in the bag knwoing I most likely won't be abe to swallow much?

KB56's picture
KB56
Posts: 237
Joined: Apr 2013

I took vitamins, water, medicine and the occasional box of food through my PEG for several weeks.  No issue and it will really make life easier when you need it.

 

Good luck and stay in touch,

Keith

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

Ensure served me well when I quit taking my vitamins

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