#44313 12-12-2004 01:50 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Good evening, all. It is Sunday - I'm trying to decompress after a stressful weekend; my friends plied me with wine (and I'm NOT a drinker!)so I've mellowed out a bit. Can't seem to get rid of the tears, however. Tom's surgery on Friday took 6 hours, and they kept him in recovery for 5 - - by the time I saw him at 8 PM, I was a wreck - - no fingernails left at all! Not being familiar with the effects of surgery, I was not (again) prepared for seeing him all swollen - - he looked like he had gained 50 pounds!! The bandage around his neck was also more than I expected, but I am supposing it was done like that to keep his neck in a proper position. He was way out of it, but I think he knew I was there. Luckily, they put him in a private room, because once the nurses left, and my brother-in-law said 'good-bye,' and I had him all to myself, it seemed that all the anxieties and worries and fears of the last few months came crashing down and the floodgates opened in me. Maybe it was seeing him looking so beaten up that did it - - maybe it was the idea that the 'last step' had been taken in fighting this cancer - - maybe it was the fact that I just plain love him so much that did it. Guess it doesn't matter, huh? I think I worried the doctors that came to check on him....one went out to get me tissues and he hugged me (which, as you probably know, only makes things worse at a time like that)! The staff was great, however, and they got me a cot so I could spend the night with him. Thank goodness, as I was sooo exhausted but knew I couldn't drive the 90 minutes home, and didn't really want to stay in a hotel room. It was good to wake up and have him right there. Some of the puffiness was down on Saturday, but his voice is really out of whack. One of the doctors said it could be the swelling, but we'd have to watch as it may be an indication that something was cut during surgery(!?) that would affect his voice. Oh, dear..... I did not see him today but spoke to him this evening and the voice hasn't improved. He said he was up to walk today and is feeling better. Don't know when they'll let him come home, but the drainage situation looks pretty good, so maybe tomorrow? My dearest friends, how can I thank you for being here? Brian, you are a blessing. I talk about this foundation to anyone willing to lend an ear; today I ran into a bank client who now has two dental offices. She was unaware of Tom's cancer, and thrilled to have me bring her the printed material I received from Brian. I will take them to her on Monday. If you can tell me anything about the voice issue, I'd appreciate it. I suppose I'm being my usual nervous self in thinking "he's lost his beard, his muscle and now his voice." Not that any of that will matter as long as he is with me for many, many more years. Love to all of you. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#44314 12-12-2004 03:31 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Nicky, I had 2 neck dissections, and looked like heck after each time. I look at the photos of myself day after surgery and even scare myself just looking at them. Remember my voice sounding strange for a couple of days, mostly because of post op swelling. As it is I looked way worse than I felt.
Not sure of the policy on hospital stays in U.S., in H.K. they kept me for about 7 days post-op the first surgery, which included the partial glossectomy and neck dissection, and about 6 days for the second time which was just a second neck dissection on opposite side as first.
Second time I still had the staples in when I left the hospital, they just covered the wound with clear plastic bandage to keep it from getting wet and removed the staples the following week Mostly I had just a stiff neck from the bandage. Stopped in the office on the way home from the hospital just to see what was going on, mostl grossing folks out.
But, everyone is a little different, results vary.
Glad Thomas is doing ok though, best wishes on his recovery. Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#44315 12-12-2004 04:11 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Nicki, Your post brought back very vivid memories! Dan's first surgery he had 1/3 tongue removal, mod. neck dissections both sides and a skin graft from upper leg. It was quite the sad and scary site...my older son (24) just ran back out of the room as he could not deal with what he saw. Dan had been in surgery for 8.5 hours and it was very swollen with drainage tubes both sides and a block in his mouth to prop it open and a trach. The trach was the worse to get used to for him and us. He was in the hospital for 6 days. When he had his radical neck dissection last Christmas eve...he was up and walking 6 hours later and the doc let him come home Christmas day (which doc admitted was a record for the Guiness!). Anyway, Dan had a trach so couldn't talk for the week and voice got better in a week or two after hole started to close up. Needless to say as the days went by, he improved greatly. We were fortunate - I stayed in the room with him and slept on a chair...couldn't bare to leave him in their care especially with a trach not able to talk at all. It will get better! This is a hard time as you see him so swollen and going thru so much. Talk about floodgates...I cried almost the whole time when I could hide it from Dan. It broke my heart and for my boys to see their dad sick...it was the first time as he had never been sick before besides a cold or back pain, etc. Take care, prayers and thoughts are with you both! Deb
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#44316 12-13-2004 06:09 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | Hi Nicki. The breathing tube they have to put down his throat prior to surgery can rough up the voice box a bit but should bounce back ok. I remember my wife being pretty freaked out about the huge swelling around face & neck. My kids say my head was as big as a basketball! The swelling does go down! Keep yer chin up! Erik
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#44317 12-13-2004 06:44 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Nicki I looked like a chipmonk in a peanut factory, 14 weeks later almost all gone, most had gone after two weeks, I'm so pleased that it's all gone well and he should be home for chistmas... Sunshine...love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44318 12-13-2004 06:58 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hi Nikki Oh my goodness..the stress of it all! You are doing great hang in there. sending lots of positive vibes and best wishes your way. Take care of yourself. Love Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#44319 12-13-2004 07:32 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2004 Posts: 104 | Nicki,
Being the one who was on the other side of the coin, I cannot tell you how much it meant to me to wake up after surgery and see the face of the person who meant the most to me. I remember (vaguely from that drug induced memory) waking up at least half a dozen times and asking the same question. "What does my neck look like?"(and I always thought that vanity was for the female of our species) before going right back out again. When I finally came around enough to really appreciate the fact that I was still around, I was able to realize that my beautiful daughter was also in the room. She had flown in from Tenn. that morning.
I also had the swelling and voice raspiness, but they went away within a week.
I consider Tom a lucky man to have YOU with him, with your obvious deep love for him and how you care for him. You who are the caregivers are so important.
Take care of Tom AND Yourself,
Peace Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#44320 12-13-2004 09:20 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Nicki,
I am so sorry for all you have been through but especially having to see the love of your life after such a rough surgery. It just makes my heart ache to see anyone going through what everyone has had to endure with this horrible disease. Tom is so fortunate to have you. I am praying for a quick recovery and every opportunity to edge Dan out of the Guiness World Record!
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#44321 12-13-2004 03:56 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Dear Nicki Guess what, from here on it is recovery and every day will be positive. Tom's overall recovery may be slower than he'd like, mine was, but my surgery healed remarkably quickly and well. Take care Nicki, you have been wonderful. Love and light to you both from Helen
RHTonsil SCC Stage IV tx completed May 03
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#44322 12-14-2004 11:29 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hi, all! I love you! We are HOME He is a mess, but better than before, and with a voice that sounds a bit like a sick Jimmy Stewart A friend has stopped over so I'm taking a minute to thank you all for your support (again!! ) I can't get enough of you! His scar runs from one ear to the other, with a dip below the Adam's apple. Most distressing to see at this point, but MUCH BETTER than a friend of ours (we met him during radiation) who had a single-side dissection the day after Tom. His scar runs seems much more drastic, and he was closed with those staples and I can see what a (good) difference having the stitches will be. Tom is numb from the right ear to the right shoulder and all across the incision. He is on NO pain meds but does need a sleeping pill (nothing new!) His attitude now is that every step forward in recovery is one that will not be taken back as it seemed to be with each subsequent chemo/rad treatment. I crashed on the sofa when we got home - and could easily be sleeping now. I think I'll plan on sleeping in with him tomorrow, amd make just a quick show at the office tomorrow. He doesn't like being without me, and I'm happy to hand around! We go back on Tuesday to have stitches removed and hear the pathology results. They have said he has a 95% chance of being here another 2 years, but I'm not paying attention to statistics....we have many years to spend finding out what God wants of us! We know there is a reason all this was brought to our door, and we intend to find what it is ! Love to all! Get those brochures out to the public! It is so much easier than I expected and people (even smokers!) seem truly interested. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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