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game plan

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Just talked with my doctor's partner and he gave me the game plan.The tumor is in front and the bottom of tounge.He said most likely will have to split my jaw to get at it and replace maybe half of tounge with muscle from thigh.They will also remove the lymph node on the left side.Since I will have radation and would be easier they will also remove teeth in front.Asked about the pain and he said I'll surprized there really isn't that much.They will put drain tubes on side of neck.But he said I may have to go to a nursing home that part I don't get and not sure if I will.

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

Maybe the reason they're thinking nursing home for a bit is because of the drain tubes (tho some folks have gone home with them)....they don't keep them in very long.

Sounds like a long complicated surgery, tho....did he give any estimates in how long you will be in the operating room?

p

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

He said it takes about 4-6hrs.It kind of though me for a loop when he said that.Then when I settled down think your right they want to keep an eye on the drainage.He did also say it sounds more complicated then it actually is.He still said 7-10 days in hospital and not to worry the have done it many times like this as it makes it easier to work.But as he said throat and jaw are clear everything done with micro-lazer which cuts way down on pain.Gonna have to learn to get away from the saying it's ok it will go away at least thats what I thought last July

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

When you feel you need help you know for sure we are all here for you. I agree with P I think the nursing home is just a temporary thing until you fully heal.

 

Will keep you in prayer my friend

Tim

CivilMatt's picture
CivilMatt
Posts: 2964
Joined: May 2012

thennies61,

I went through base of tongue and Jugular vein dissection and healed nicely.  Even though your situation is different, I would expect you to recover quickly.  You will have plenty of meds to keep you comfortable, so use them as needed.

The care facility is a stop gap which all depends on your ability to recover to the point of self-care.  It sounds weird to a healthy person, but think of it as “hospital light”.

These are your early steps to rid you of this invader.  You will do fine.  There may be some rough roads ahead, but know each of us travel a similar path.  

Remember to work with your body and figure out what works for you.  Keep your caregiver, doctors and nurses up to speed on ALL your conditions.  Be proactive in pain management.  Read through the Superthread for “must haves”, a week-end can last a long time when you are in need.

Enough said, good luck! 

Matt

MarineE5
Posts: 754
Joined: Dec 2005

61,

I can see the Nursing home in a sense. I was lucky as my wife had allot of vacation time on the books, so she took 3 weeks off to be here at home with me. You will need to sleep in an inclined position as you more then likely will have a Trach, along with the Drain tubes, and the PEG Tube. I did most everything myself. My wife did hold the Drain tubes over the sliding shower doors when I showered.

A small suggestion if I may. Find some pajama tops that have two breast pockets so you can place the Drain tube bottles in them so they are not bouncing around and tugging on your neck. It worked well for me.

After the 3 weeks, my wife returned to work as I was fine by then and there was a Home visiting Nurse that came here twice a week.

My Best to You and Everyone Here

sabriene
Posts: 27
Joined: Aug 2006

Not on this site as much as I would like to be for lots of good advise and good people.  Sorry to hear one of the warriors is now freezing his butt off the last two days in Lafayette.  He just lost his best friend his dog.  Moral of the story is like he has told us many times we are all in this together for support. Many of you no him as Hondo's and both of us had advanced stage 4 somewhat similat to the rest on the head & neck site.  At the onset I think he will agree the prognosis for both of us didn't look very good.  He has hung in there just a little longer than myself but think he will back me up the road hasn't been easy but with the grace of god we are still here.  I happen to see he just gave you a message, and a few good words of wisdom.

You said your game plan so maybe they discussed it with you and maybe they didn't.  The doctor may be a 100% right on your needed surgery.  However, if I were now in your situation would I take just his opinion and the answer is definetly not.  If you haven't gotten a second opinion I would certainly check into robatic laser surgery for seems to me if it would work is sure a much better way in your situation.  They were considering that in my situation then came to the conclusion that rad. & chemo would shrink the tumor which it did and thank god.  Now this one was all new to me back in 07.  My oldest daugher flew back with me to Philadelphia where at that time was about the only place doing this type of surgery.  I would have been they said like nunber 52 to ever have that done in U.S.  Daugher ask the doctor about the hole in tongue and his comment was it basically will mend again or grow back very well. That part did surprise. 

All of us on this site want to wish you the best in your decision.  Myself at the time was one of the hardest I had made in life and I am no spring chicken.  However, with good doctors and modern techology along with god still breathing. 

Do give us an up date how it all plays out.  I assure you I will try to check back.

 

Roger

katenorwood
Posts: 1829
Joined: May 2012

That's alot to process.  And I understand you questioning the nursing home option.  But I use to work  in one, and do know alot of people that used it as a swing bed.  Just to get back on their feet and strong enough to get back home.  Don't rule it out, but get more information.  I wish you the best outcome with everything, and we are here for you always.  Katie

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Yes it sounds like alot in the process but as he explained it to me it will the operation easier for everyone.They will be doing the  lazer surgery and he said will surprize me with alot less pain.And the more I think about the nursing home maybe the better off as another tool to heal and watch for anyinfection.There thinking is that since it's just me and my dog it might be a better route.Hopefully Ever doctor so far has been very though with thier tests and coming up with a game so no sence in being bullheaded and to be as though in doing whatever it takes to heal the right way.

sabriene
Posts: 27
Joined: Aug 2006

I happen to check and see some of the other warriors have given some good advise.

Just wondering about your teeth for hopefully it won't but they can become another issue if you still have them all?  Long story in my situation but the ongologist wanted them all removed before any rad. & chemo.  I sure didn't want to loose my teeth which I didn't but sure paid the price out of banking account since.  They have been nothing but a pain in the ass for I had very good teeth going into treatment. 

I presume you will also be getting some type of feeding tube.  We hope eating or getting the proper amount of calories a day by mouth is not a problem but from the surgery your talking about could make one tend to wonder.  They can be also a pain in the ass getting use to but think a few of will tell you we wouldn't have been here today w/out it. 

Agee with everything Don just mentioned to you.  I notice another person just ask where are you living?  Myself in Branson, Mo.

Roger

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Hello,

I've not had any experience with sugery being done within the oral cavity assisted by robotics but seems like an option in your case, at least worth a discussion and maybe a second opinion. I believe the reason they do the cut in jawbone is to gain better access and that is where newer techniques are developed that enable the robot to get into places where human hands can not. Either way, best wishes. Don

lorig01
Posts: 69
Joined: Jul 2012

Sounds like a good plan.  I wish you good luck and a speedy recovery. When are you planning on having surgery?  Also,  what part of the country are you in?

 

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

you have a great team of Drs and they are being totally upfront with you. There was talk of me going into a nursing home, but, my husband took 2 weeks off work and I had a home health nurse, once a week. They kept me in the hospital until the drainage tubes were removed and once I got home, it really wasn't that bad. Since you've stated it's just you and your dog, I believe the Drs are giving you good advice, it's hard to take care of yourself when you're not up to par. I doubt if you'll be there too long, and you'll learn how to feed yourself and take your meds. Best of luck to you, I know you're in safe hands and may your God guide your surgeons hands and put you on the road to recovery

 

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

but there must be a good reason for that.  As other have indicated, the TORS transoral robotic surgery is often used now as well as the laser for a more minimally invasive approach, but we do not know the extent of your tumor.  If you live alone with your dog that is most likely why they suggested a temporary nursing home stay.  It will depend on how quickly you heal and get back on your feet as to how long you would need that.  The suggestion to have PJs with pockets for the drain is a good one.  My drain had clips on it so I could clip it to my PJs.  I think I recall you were scheduled to have surgery today, so if so then my hope is that you came through it well.  Write when you are able and let us know how you are doing,

PJ

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

Mine was at the base of my tongue and epilglottis and at first he planned the robotic surgery but after he went down my throat for a biopsy he was unsure wether he could get it all with robotic so he slit me from ear to ear. I'm not sure why he plans to splity your jaw but my guess would be because of the tongue reconstruction. I only had a small section of my tongue removed at the base. He also told me it was a 4 - 6 hour sugery but it took much longer. I had four drainage tubes coming out of my neck which stayed in for 10 days. You will have to document how much drainage 2 to 3 times a day. But if you go to a nursing home they will do that for you. I was in the hospital four days and they originally told me five. Pain??? I would call it more discomfort than pain but our surgeries are different. I can say I had more pain with the first wife than the surgery (Ok......OK thats my joke for the day). I would also say that your after care may be more extensive than mine which is more than likely the reason for the nursing home. I know my wife was overwhelmed with the instructions for my care when I was sent home. To this day I tell her how she messed up and it all could have been made to look like an accident and an unfortunate overdose. I had four teeth removed three years after surgery because of the radiation and knowing the possibilities now, I may have elected to have them yanked before radiation. Because after radiation means 30 hyperbaric treatments so your jaw will heal after they pull them

It's always nice to have a game plan and it sounds like your doctor is on top of things. It also sounds like he has the experience I would look for if I was in your shoes. I very much looked forward to my surgery and wanted to rid myself of cancer.

Fight with confidence and a positive attitude, it is a very big part of your road ahead.

      Jeff

jim and i's picture
jim and i
Posts: 1630
Joined: May 2011

Just my 2 cents worth about the nursing home. Since you live alone, other than the four legged person, I wpuld opt for the nursing home too. Praying all goes well in surgery and smooth sailing during treatment.

 

Debbie

jackflash22's picture
jackflash22
Posts: 262
Joined: Aug 2013

hope your operation is all over now? Speedy recovery and hope to here about your experience soon

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

I know it's way too soon for you to be on your computer, in fact, right about now, you're probably wondering where that train, that hit you, came from.Hope you're being well cared for, it will get better

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