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Joined: Jul 2010
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Having a partial glossectomy with wrist flap and neck dissection on 8/3...need someone to tell me what it is like when you wake up...I am so freaked and need support from anyone I can get it from... what is like aftre, how long does it take to be normal again...yikes and yikes...thank you..

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Hi Susie. Glad you found this site. My sisters surgery was on June 2. After surgery she was sedated for about a day. She did not look pretty to us but started recovering very fast. She was out of ICU in a day. I know as a patient this is very scary and I am sure for the first few days after surgery it is scary. She was home in 8 days because she had alittle set back. She was trying to speak so much that she popped out a stitch in her tongue. Just alittle advice have someone bring a ez erase board and marker so you can write. They don't want you talking to much. My sister swelled a lot during surgery and needed to be trached and had a feeding tube. They covered her trach in 2 days and took it out in 6. Just tell your family your not going look to pretty to them but you will in a few days. My sister is now 7 weeks out. Talking about 85% eating whatever she wants. Her arm has healed nicely and her leg is completly healed. She starts radiation next week. Any questions you may have you could PM me anytime. Good luck to soon being cancer free!!


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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Susie, glad you have found OCF to help you with your concerns. There are several members who have undergone what you have coming up. They will be able to give you good advice. You want to hear from those who have walked the path before you so you get the real info. Im sorry but I have not had this type of procedure. I want to welcome you and wish you well with the surgery.


Christine
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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Hi Susie, and welcome, having just gone through the same surgery when you wake up you feel like you have been hit by a truck. You cant talk so take that writing board! like we had when kids. You will feel like your drowning in your own flem that you cough up. It is scary. I say this not to scare you but you will know its normal to feel all these things. It takes 10-14 days to get out of hospital and each day a drain or tube is removed. The worsed for me was the coughing and flem I could not get of my chest, maybe everyone is different but that was hard along with not being able to talk. I also would recomend limiting visitors to 1-2ish for the first week as with me it upset me and made me cough more and choke up really bad. All of this is normal, I hope I have helped not hurt. Good luck, thought are with you!
Tony


lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10

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Welcome Susie, I just want to wish you all the best with your surgery on 8/3/10. I only received radiation & chemo.
Again, good luck!


BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"

*** Admin update --- Dianne has passed away on August 25, 2015 ***
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Hi Susie,

I had the procedures you are going to have. They kept me under for a day or so after surgery so that was easy - I don't remember a thing! The next three days in ICU - I don't recall much of due to pain meds - I was able to talk right away but as soon as they knew I could talk, they told me not to - so I wouldn't rip stitches out or anything. Take the dry erase board/markers - or pen and paper - to communicate. I didn't swell much so didn't need a trach. Had an nose feeding tube for first four days. Didn't need a PEG through surgery or radiation. The only problem was with the nose feeding tube - they filled it too fast and it backed up and I didn't enjoy the strawberry taste smirk I didn't have any problems with coughing. Make sure and do the breathing machine thingie they give you - that'll help reduce the potential for coughing. My healing progressed nicely from surgery in all areas-tongue, wrist and leg. You'll do great. It's hard, very hard to relax, but as much as you can, breath deeply, and take note of positive things around you each day to help ease the burden of worry and fear. We're all here for you.

hugs from the midwest,
Kim



08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
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Hi Susie

I had the same operation 9 months ago. I believe that most people have a tracheotomy so that means no food and no talking for a while. This means you need to eat up now and enjoy what you are eating:) A patient opposite me was a doctor and he was very well organised. He held a large notebook on his chest and seemed to clutch a pen in his hand all the time. I was always losing my pen and had random bits of paper everywhere. A whiteboard would be good. It would also help to ask or read about the trach. I was puzzled by the suctioning (to clear the mucous).

I was a terrible patient because I seem to go crazy on morphine but I noticed a lot of other patients seem to doze in a morphine haze through the first few days. I was fine after a couple of weeks and haven't looked back. This surgery is unpleasant but it works.

I wish you all the best.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Susie, welcome to our community. I'm so sorry to read of what you're about to go through, but you've come to the right place for support and information. Although I didn't have a glossectomy I did have a radical neck dissection and a trache. No question, it's unpleasant. But with good support and docs and nurses around you you'll get through it fine. Where in Florida are you being treated?

Please keep us posted, and ask any questions, no matter how trivial or strange they may seem. And if you're in pain, either in the hospital or afterward, don't hesitate to ask for medication to take care of it.

Courage!
David 2


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Susie - So glad you found this site. I was a caregiver to my son who did not have your type of surgery, but he did have a section of his tongue removed. The only thing I might add to the excellent comments above would be to suggest that for communication, you take a laptop computer with you to write messages or make comments. My son typed in BIG letters on the laptop and that seemed to work out just fine when he was just out of surgery. Later, he used it again when the radiation made his throat sore. Do let us know how you are doing.


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.)



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Thinking of you today. Praying your surgery went great!!


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
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