| Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Christine,
I wish I had some words of wisdome for you but I know I don't. I just wish you didn't have to go through this and I'm scared for you. Did I read that correctly, that your surgery will be about 16 hours?!? I'm pretty sure that anyone here would feel the way you do and just wish they could sleep their way thourgh this and get to the recovery side of the journey. Sometimes life just isn't fair and I feel like now is one of those times.
I guess all I can do is be there for you and I fully intend to be. You will be in my prayers everyday. I know I have told you this before but I will tell you again in case you are the type that doesn't ask for help:) If I can do anything for you please let me know. Maybe, you can send me your address in a PM and I can get some things together for you and mail them.
You say you are not strong, but you are. It's ok and good to be scared...that means you are feeling the feelings that are normal. You will get through this and we will be here for you every step of the way.
xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | We are all praying for you and if there's one person who can do this, it's you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I have met many people who have had the flap rom the inner forearm and most of them went very well, so we'll pray that you are on that side of the ledger - you deserve some good luck at some point!
My first surgery was 15 hours. I remember the groups of doctors talking about taking a "lunch break" - which immediately gave me visions of lying there alone in the operating room while they leave to eat their tuna sandwiches! Of course they take breaks - but they overlap between teams. I still get a chuckle out of the first visual tho!
Whether the surgery is 5 hours or 15 - you won't know the difference, and if you are like me you will be very happy when they finally start that anesthesia countdown. I think you are at the place where you are ready to say "Let's git 'er dun".
You aren't walking this path alone Christine. Your Angels walk every step with you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | christine
good luck. The flap from my forearm took perfectly, and they also had to use microscopes and "tag team" me. So I hope you flap takes also. The aftermath of surgery is such a shocker and I feel lucky to have survived the hospital. If you can bring a wireless laptop with you or have someone drop one off, it is a godsend during those long long days and nights. Almost all hospitals have wireless connections for their patients now and you can pick up one suitable for your purposes for under $300 Or consider one of the new "net books" which are very compact and can be gotten for about $200. Just bring your AC adaptor and you won't have to worry about battery life which is what drives the cost up on any laptop. Mine only has about an hour and half but came with everything including a web cam. I had fun taking pictures of the "good nurses" plus the picture you referenced of my flap was taken with this laptop webcam. That way you can keep in touch with OCF. Drink a chocolate milkshake for me too today. Finally, I hear you so clearly about the PEG. It is so tiresome and time intensive. Still as you know better than anyone, we do what we got to do, Best wishes Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 109 | I had a forearm free flap too, and it took well. It was an 11-hr surgery altogether between the ENT and the plastic surgeon. One of the blood vessels was too tight, and the plastic surgeon had to take me back in the following day to loosen up the vessel and put a few new ones in, just in case, but the rest was fine. I was reading surgical notes, and was blown away by what the doctors can do.
The aftermath of the surgery is physically draining. The flap is usually several times the size it needs to be, and eventually it will shrink down to the normal size, but in the meantime, you will be unable to speak and probably even close your mouth. So be ready with notepads and pencils or some sort of a PDA or laptop where you can type up whatever you need to say. The good news that it heals well and you'll be amazed at how much progress you'll make in just a few weeks.
It's hard. But we've all been through so much, it feels like there's very little we cannot handle. I just wish that you didn't have to go through it.
We're all pulling for you.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 26 | Christine,
I also had the forearm free flap, microscope, tag team stuff in a 12 hour surgery and the free flap has done great. They have a little device with a pencil type attachment that they use to frequently check the pulse/bloodflow in the transplanted vein that's part of the free flap to insure it's working and healing as expected. The free flap felt huge to me for a while, like marshmallows stuffing my mouth full, but it did shrink down in time.
Sending you prayers and good wishes, 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 !!
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Christine, I too wished that I could say something.. anything that could help. Thinking of you and wishing you well!
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | This is the big one girl......its a toughie but so are you.Scared witless is ok Christine its normal and human and i wish my arms were big enough to reach across the miles and hold you close,but my heart is big enough and you are held in it.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Christine, I wish I could take some of this ordeal away for you. May you haave speedy and complete recovery with a maximum of dignity and a minimum of pain and be forever well after this. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
The device that Kim mentioned is called a Doppler <sp?> they regularly use to check the blood flow.
Unfortunately, you will be requiring assistance from the nursing staff for washing/bathroom for a short time, BUT it is only temporary. With drains, drips, trache suctioning and PEG - it can be really full on.
I had a sheet of paper that read "PAN PLEASE" next to my bed so I could just hold that up when I needed it. I know how much it SUCKS- words do not describe.
Once you are able to get up to the shower you will probably be given a plastic neck collar - it is intended to cover the trache so as no water, soap, shampoo etc gets in. It justs sits around your neck over the trache and is held together by velcro.
Like so many others, I am thinking of you and will be wishing you a super speedy recovery.
Karen xx
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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