Back home from the second surgery, the radical neck dissection on the right side this time, compared to the left side and partial tongue glossectomy the first time. Still have the staples in, and this clear plastic dressing that's gonna hurt like heck when they pull that off on Tuesday to remove the staples. Still have decent range of motion on right arm, but shoulder and neck muscles seem much more stiff and sore. Either way, I look more gruesome than I feel.

But then I have to remember this is only 6 days post surgery, and I wasn't even released from the hospital until 7 days post surgery last time.

Do have a question. This time my jaw on the right side seems stiff, I can open my mouth pretty wide but get some pain in what I think is the muscle ahead of the point where the lower jaw joins the skull. I know there's a technical term for this place, but you know what I mean. Read the "jaw pain" thread, seemed most folks had problems after radiation. This is only after surgery. Been practicing opening my mouth wide, just in case.

Head back next Tues to get the staples out, new RT mask made, then start RT (twice a day for 5 weeks) and Chemo (once a week for 5 weeks.)

I had been lucky so far, still had a good amount of saliva thanks to the IMRT, and the fact I still had pretty much all the salivary glands on the right side of my face intact. But, surgery removed the gland beneath my jaw this time, and while they are going to try to shield the gland that's remaining, I suspect after this round I'll be in dry mouth land big time. Another member of this board who lives in this part of the world and I have had private discussions, we think they just don't "do" PEG tubes here for some reason.

I hoping this is the last round of this nonsense, and the cancer beaten back after this. In the meantime, doc's are going to start looking for a possible second hidden primary, since they aren't sure why, after the first surgery that left "clean margins" and the radiotherapy on the left side, there's a recurrence on the right side.

I was pretty positive after the first surgery, nervous but positive after the first go around on the RT and Chemo. This time, I'm haveing a harder time keeping positive. I'm pretty sure that I won't have the same amount of problems with the RT, not doing the tongue and only 5 weeks worth, last time I didn't get real bad until week 6, and that was because of the pain on the tongue. Chemo didn't bother me too bad, I tolerated that well last time.

I'm just not thoroughly convinced that this is the last I've heard of this. Doc's aren't saying anything, excpept there was only one node fully involved, one partially involved out of 25 taken out, and the cancer cells were fully encapsulated in the nodes infected. No strays.

I've been cautously optimistic, things like purchasing an apartment, but only taking out a 5 year note, getting married, but making sure all the insurance, wills are updated. My company has been very supportive thus far, but of the last 9 months I'll have only been working 4 of them, counting the next month and a half I'll be off for RT. Might get work done part time, Monday morning, Friday afternoon and maybe Saturday morning. In my case the treatment is in a whole different country, much less town.

I know this post is pretty disjointed, didn't mean to start out this way, but just needed to vent.

Anyway, thanks for listining. Need all the encouragement for this next battle I can get.
Bob

Bob, it is so good to hear from you, and know you are out of the hospital and on the mend. I feel so bad about your having to do it all again as far as the rad/chemo, but at least you do know what to expect, and know you can tolerate it, so you won't be dealing with fear of the unknown. I hope the visa problems have been straightened out and your wife is with you. That should make a big difference in how you feel. Not a good time to be alone. As always, you know you can vent or even rant and rave here, and there isn't one of us who doesn't understand. I feel comfortable speaking for everyone on this forum when I say that we wish you well and will be thinking about you, and anxious to read your updates. Take care!
Joanna

Bob,
Keep us posted. This is the place to vent and we can all learn a lot from your saga. I hope that things keep improving for you. I have the dry mouth, and while it is a nuisance it's not all that bad.

Danny

Dear Bob,
You are a strong soul. I can feel it in your email. Please stay that way and look forward to all your tomorrows. Thank goodness surgery and radiation were an option. I honestly feel that you've beaten this once only to make you stronger this go round.
Our prayers are with you,
Mandi

Thanks for your encouragement all. Will keep you posted on progress, tomorrow is back to the ENTs to get this clear dressing off, staples off. I hope they've figured out a way to get this dressing off, because if it's just a pull off deal, youre gonna hear me screamin all the way from Hong Kong.

As it is, today not feeling too bad, back to work, (this time last week I was in surgery) although not working too hard. Side of my head feels like they let Jackie Chan practice on it at times, rather tender.

Definately need to ask the doc about the jaw pain, tried to eat a McDonalds fish sandwich (a rarity for me anyway, Sorry Ronald) almost couldn't open wide enough to chomp it. Can still do the 3 fingers thing, but I have small fingers. Hurts after 2 and a half fingers wide though.

Good job Bob!

Keep up the good work!

Kim & Dave

We're trying anyway.

Got the staples out today,(ouch), then the ENT wanted to do an endoscopy (I think that's what it's called), basically run a tube up my nose to look down my throat. This was suggested by the oncologist to make double sure there's not another primary that hasn't shown up on the 2 pet/ct scans I've had in the past month.

I just bloomin' panicked. Anxiety attack big time. I mean BIG time. The sight of the forceps, nasal spreader thingy, and the cotton tape he was goign to shove up there just put me in panick attack. Got him to postphone for a couple of weeks. The staple removal job (about 50) plus haveing to get the radiaion mask re-done was enough for one day. The ENT doc doesn't really think there's anything going on there anyway.

Now, am I making a big deal out of nothing aned just being a big baby? I've been medically violated in every other bodily opening the past few months, and I do mean EVERY other opening, and I couldn't deal a tube up my schnozz today.

Asked the doc about the jaw thing, he said it will get better, had to move some things like jaw muscles about during surgery. Then hollered at me for going back to work yesterday. Said I should have taken at least a week or 10 days off at least.

Thanks for your support everybody. I'll probably add some little stories here and there on this "second time around" experience. May bore the heck out of you all, but it's theraputic for me.
Thanks
Bob

I let my follow-up doc put the tube in my nose each 3-month visit. First, I want him to see what there is...after all, survival of any cancer is an issue of early detection and early diagnosis. But more than that, after the first time he did it, I realized that it was no big deal to go through. The tube is really small and extremely flexible like wet spaghetti; it isn't some huge piece of plumbing pipe.... They have an atomizer spray bottle with a little nozzle on it that mists way back into your nose with lidocaine to numb everything up so you really don't feel anything as it goes in. Then after he looks around in the nasopharnyx to his hearts content, he asks me to swallow a couple of times and the tube, without any pain or effort sides down close to my larynx in my throat, where he can get up close and personal with my vocal cords and all the walls of my throat which he would only see in a very minor way with the tiny mouth mirror they hold in the back of your throat. One-minute max, and he has pulled the tube out and it's over.... This is definitely not one of the things you need to concern yourself with. Any doctor that has done a bunch of these will be painless and quick. Plus you get to walk out with the knowledge that he has THOUROLY looked at every nook and cranny in the most intimate detail. But I do relate to the idea of having one more thing stuck in me. However given all the really awful things that have been done to me in the last few years, this procedure doesn

Great Brian, now I really DO fell like a wuss. But Doc wasn't mentioning lidocane or anything like that. First he wanted to stuff gauze tape up my nose, then proceed from there. Guess I just had enough for one day, and he did say it wasn't going to be a particularly comfortable experience.

You're right though.. the comfort of knowing there's nothing going on down there would have been more comforting. Back again in a couple of weeks, so will get it done then.
Bob

I've never heard of anyone doing this without a spritz of lidocane, and no gauze was involved. Being where you are, I cannot speak to what this guy intends to do....so maybe you are not such a wus afterall.