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

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

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

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

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

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

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

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

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

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

Hi Nicki,

Glad the surgery is over and Tom is home. I warned you that he would look like they had run him halfway through a guillotine, but with a good surgeon, the scars should heal quite nicely. Ask the doctor about using a deep wound cream like Biafine on the scars and get him or a PT to show him how to massage the scar so that it does not tighten up. He should also be scheduled to start PT for his neck and arms within a week or two after surgery. Make certain that he does not lift anything over a few ounces for the first sevral weeks until the shoulder gets it stength back. As to the Dr. comment about living another 2 years, are you certain you heard that correctly? Or did he say that there was a 95% chance that he would not have a reoccurence in two years? A reoccurence is not necessarily a death sentence as some of us can attest to.

To a speedy recovery but don't push to hard and remember to take time for youself. You deserve and need it. It's been a rough road for all.

Take care,
Eileen

A 95% chance of 2 year survival is as good as it gets! (95% of recurrences occur within the first 2 years) Be happy! Not that you should pay any attention to the statistics.

I am glad that Tom is finally home.

My wife is an esthetician and occasionally sees people with facelifts which can involve a lot of surgery. Swelling is quite common in facial surgery and in some instances it can take almost a year to completely resolve. I saw a lot of people at the OCF convention who had radical neck disections and the surgeries really weren't very obvious - it just takes a little time.

Hi Nicki,
I'm happy for you and Tom. The biggest issue I had with the neck surgery was the tightness. Make sure that's tended to. I got very depressed about it when I began to feel better after my surgery and noticed how stiff my neck was. Take care and keep us posted.
Minnie

Every day IS better Just the idea that treatment is OVER has brightened the outlook.

We took the bandages off today. (Big Sigh). He's pretty swollen, and I think I am already seeing the 'lumpiness' in several areas that I'llhave to research on this site. I believe I recall reading that we'll have to massage those areas to move the fluid.....he's a bit gun shy about having me touch anything right now....

Minnie, the stiffness is already in his arms, esp. the right one. So far he says he can't feel a thing in his neck except for a bit of tingling.....
He got back on the treadmill this morning and did a mile and we have our sights set on Tuesday's meeting with the surgeon.

I'm keeping a keen eye out for the depression - I know it is lurking. I try to alleviate his anxiety - and tell him often how 'good' he is looking. That may well be stretching a point, but to me he is still the most handsome guy I know
I'll let you all know the pathology report next week..
My best to all of you..
Nicki

Nicki, how good can it get? Bless the both of you for what you have been through. It all is just better and better from here on out. Give it time as healing is something that only time can help. But it just gets better from here on out. I am so happy for you both. You must be very excited to start the upward path from where you have been. Just think of it getting better day after day and pretty soon, you'll look back and hardly remember the difficulty. God bless you both.