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Newbie #195872
03-12-2018 04:35 PM
03-12-2018 04:35 PM
Joined: Mar 2018
Posts: 1
Pattyperson Offline OP
Pattyperson  Offline OP

Joined: Mar 2018
Posts: 1
Hello. I am 64 years old and diagnosed with ssc of the tongue. I knowI left it go too long, thinking it was just my lichen planus. It is very painful to eat and swallow. Lon story short, I have to have at least half my tongue removed and they will make a flap out of my left arm skin and artery. I am terrified but there is no other choice. I will have a tracheotomy and feeding tube. They say 3 days in icu and total of 10 days to 2 weeks in hospital. I have 2 very good doctors and this will be done at Allegheny General Hospital in Pissburgh Pa. I live about 60-70 miles north of the city. I am hoping for some support from anyone who has been through this surgery. Is the recovery really hard or painful? Are you better and able to eat eventually? Bless each of you on this journey. Patty

Re: Newbie [Re: Pattyperson] #195873
03-12-2018 06:57 PM
03-12-2018 06:57 PM
Joined: Jun 2007
Posts: 10,185
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,185
Welcome to OCF, Patty! You are in the right place to get info and support to get you thru the upcoming surgery and recovery.

Its perfectly normal to be afraid of what you are about to go thru. Its a big surgery and its not easy but it is doable. Stick with us, we'll get you thru it. To be honest, yes you probably will be in some pain. The worst of the pain for most is usually the day after the surgery and first few days after. Ask your doctor to assign 2 different pain meds for after the surgery. This way you wont have to wait for the right time to get pain meds if you are in pain. Switching off and on will help keep you more comfortable. Having someone there with you to help will make it so much easier to manage your pain and pain meds.

Heres some pointers to help you get prepared ....

Try to focus on what you have control over.
Staying busy doing positive things will help pass the time til your surgery. Start a hobby, clean closets, do your spring cleaning, reading a book that keeps your interest, etc are all excellent ways to stay busy.
Read thru posts here and also on the main OCF site to learn about your illness. Knowledge makes for a strong advocate.
Anyone you tell about your illness that offers their assistance, write it down with all their contact info. Tell them when the time comes you will let them know what they can do to help. Theres all kinds of little things friends and relatives can do down the road. Dont be surprised if some people you are close to head for the hills when they are told of your cancer while others you dont know as well will step up and support you.
Ive found Its usually easiest to have one person you give your info to and they can be everyone's point of contact. This will make it so you arent bombarded with questions from well-meaning friends and relatives. When you arent feeling the best, you can become overwhelmed with questions.
Start eating all your favorite foods now, desserts too. Dont worry about gaining a few pounds. If you are on the slim side a few extra pounds put on would be a good plan. Your upcoming surgery will have a big impact on your ability to eat. Make sure you have all your favorites so you dont go into this with any cravings.
Ask your doc about having a speech therapist involved. You will need them to help teach you how to easily maneuver your new tongue and tips for clearer speech.
Try to line up a few people to stay around the clock with you while you're hospitalized. These people will need to step up and be your advocate during your hospital stay. Even if the facility says no overnight guests, they can ask to stay with you most nurses will welcome the extra hand. Even if you are asleep you still should have someone with you.
If you use an ipad there is an app called Speak It that will say whatever you type. A dry erase board and cell phone texting are also ways you can communicate during your recovery until you are able to speak clearly. We are all our own worst enemies and critic. You may think your speech is horrible but others will not notice it as much as you will think.
If you feel you are having trouble mentally dealing with everything, ask your doctor about a therapist at your treatment facility. It can be difficult to manage all the things that come with getting a cancer diagnosis. Depression affects OC patients and some caregivers too.

I hope I havent overwhelmed you with posting too many things. Hang in there, wishing you all the best with everything!!

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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