| | Joined: Jan 2013 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2013 Posts: 27 | All,
I am scheduled for surgery this Wednesday and just getting a little nervous as the date gets closer.
My doctor said that I will be in the hospital for at least 48 hours, maybe more.
I figured I would pack a bag with some clothes and books - and a charged phone. Any other suggestions?
Also, for anyone that has gone through this before - what is it like to wake up from the surgery? I imagine that I might be really frustrated as my tongue will be very swollen and I won't be able to communicate. I'm also worried about the pain. If anyone has had a similar procedure, I'd welcome your advice.
Thanks!
Female, age 35
SCC Stage IV, left oral tongue, 2.8 cm
T2N2bM0, HPV+, Former Smoker
Dx 12/31/12
1/23/13: Hemiglossectomy (1/3 of tongue) & SND
Cancer found in 4 lymph nodes, 1 with ECE post surgery
1 tx Cisplatin, 30x iMRT (6 wks)
TX ended 4/15/13
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | A laptop is a good way to communicate. You can type in really big letters so anyone nearby can see it. Also don't forget your phone charger.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | iPad, iPhone, probably android too, have Apps that speak for you by typing in the text. I just saw one, "speak for me", and plenty others you can draw or write on. I thought I heard of something else geared for this situation, good luck with everything.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there... for me I was okay.. the frustrating part was they put in a trache that prevented me from speaking for the first 2 days and you would think in a hospital where they see people in that state ALL THE TIME the would learn to ask questions intelligently the kind with yes and no anwers... or give you a pen. I did bring a note pad, and an ipad but didn't have access to it for 24 hrs as i was in ICU. And the nurse there clearly didn't get that I couldn't speak though it was obvious to anyone who saw me.
She was a ditz... that experience aside it was okay. I was numb from the dissection so there was little or no pain. But it was awkward sleeping because I had drains and an IV and no feeling and I had to lay on my side as I was drooling and a mess. Frankly I looked brutal but felt fine except for my head! er... and numb neck. Don't be surprised if you shoulder doesn't work all that well as they cut the muscles. etc...
best of luck - you will be fine. hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Take your chargers for laptop and cell phone with you. You could also have someone bring your bag to you after you are taken to your room. If you have a kindle that would be a great thing to help keep you occupied. Dont forget to take the charger for that too. Its better to have the chargers and not need them to get stuck running out of juice when you need your electronics.
A dry erase board is a great help too. If possible have someone there with you as much as possible. People can take turns. Its always better to have an advocate be your voice while you are in the hospital.
Good luck with your surgery!!! Hope it goes smoothly and you have a speedy recovery.
ChristineSCC 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  | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Speakit App works very well for the Ipad.
You will be fine. It is really fear of the unknown.
Hoping and knowing all will go well,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jan 2013 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2013 Posts: 27 | Thanks, everyone! I do have Speak It on my iPhone - it works really well! I also have a dry erase board too. I appreciate the well wishes. If I feel up to it, and there's wi-fi I'll post as soon as I feel up to it.
Female, age 35
SCC Stage IV, left oral tongue, 2.8 cm
T2N2bM0, HPV+, Former Smoker
Dx 12/31/12
1/23/13: Hemiglossectomy (1/3 of tongue) & SND
Cancer found in 4 lymph nodes, 1 with ECE post surgery
1 tx Cisplatin, 30x iMRT (6 wks)
TX ended 4/15/13
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Sunshine - thinking of you today.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes hope everything went well. The best thing to hear at the end of it all was... I think we got it all. It makes whatever you face after that that much easier to bear. hugs and prayers for a speedy recovery.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2012 Posts: 14 Member | | Member
Joined: Dec 2012 Posts: 14 | The first few days are such a blurr. Hubby had 10 hour surgery, then ICU for another day. I took EVERYTHING home, since he didn't need to loose anything during the moves from room to room, plus he really didn't need anything. The check in nurse was great about reviewing the meditation channel on the TV. Otherwise, no need for electronics. I did bring up iPad on day 3, but he still wasn't interested.. just wanted to get home.
Good luck and God bless
Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13
"The most important thing is to keep the most important thing, the most important thing."
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