Well today is Wednesday this time last week I was very happy I was up flipping out I couldn't breathe. Well as we know we can with the trake,lol. Got passed most of that. Had lower right jaw removed not sure on number of lymph nodes in neck. The surgeon removed little more then needed all bio. Came back clear. Great news for me.. Then I didn't pass the die test so going to short term living for a week ,just to much to handle with trake feeding tube blood drains and walking boot with walker. That apple juice was so good.. Hope to pass next week

Sounds like you are doing well. give yourself time to heal... hugs.

Glad you're through all that, you sound like a very courageous and upbeat person. We're all pulling for you.

Sending every good vibe your way!

Hang in there. You sound good considering going through all the surgery and such. Let's get past this week and push onward!

Week 2 after I got out of hospital,I went to a short term living home for a little help. I go back to the Dr. In 2 days,hope to get walking boot off. And feeding tube but not sure about that. They put a strap with a button over the hole in my neck. Does that mean another step closer to that glass of water. Plus really hoping to go home!

Well went to Dr. Appointment today. No more trake tube,removed all drains I had left,no more walking boot. So that leaves me with feeding tube,cause I failed swallowing test,I'm about 14 days out of surgery. Still have a good nit of swelling in mouth. She made another appointment 3 weeks from now. Looking at about 5 weeks post surgery then. Was wondering is this normal? They say everything looks good healing good,just kinda down I guess. If you don't mind me asking how long did it take some of you guys to pass swallow test,thanks

Wasamason

I remember my mother failing the swallow test before she left the hospital. I had to bring her back to the hospital at about 6 weeks post surgery and another test was done. She then past it.

Don't worry just give your self time to heal and you will do fine in a couple of weeks.

Good luck with your recovery
Heidi

It sounds like you are recovering amazingly fast for the major surgery you just had. Congrats on all the tubes and drains being removed! In 3 more weeks the swelling will have gone down much more and hopefully you can pass the swallow test.

Best wishes!

Thanks. They say everything is going great then I fail swallow test. Is 14 days post surgery soon to past. Just wondering where I fall with others who had this done

I failed two of them. Never passed. Gained all my weight back then lost a tad to where I felt best. When I choke it's when I've done something stupid.

Well I'm home now what a fight that was to get home. Been home about 5 days now,really think I'm feeling better moving around alot more. Even started lifting lite weights wears me out. Met with radiation Dr last week he said we have a little time before we start. I have a little hole on my face they want it healed before hand,so I got some kind of suck vac to heal faster. My pain level went up a bit in my jaw,but I think its cause I'm home and taking more. I'll try to keep everyone posted more Dr appointment on Wednesday. You sure do see a lot of Dr while going thru this

Wasamason

Glad to see your home and doing fine considering all you've been through.
Just be careful and take it easy on yourself.

Good luck with your upcoming treatments.

Heidi

Glad you're home and doing well. Take it easy and prepare for the next steps. Your good attitude will go very far in how well you do. Keep it up.

Wasamason, my main social life last year was going to hospital, seeing doctors, dentists, speech therapists and psychologists!

You seem to be doing very well in spite of the big surgery you've had. I hope you can enjoy the respite at home before the treatment starts.

Have another question. I had lymph nodes removed from right side of neck and the removed some from left just to check. So here's my question its been almost 4 weeks post surgery and neck still swollen. I know everyone is different,but for those who had this done how long it take for swelling to go down. Kinda guessing that's why I can't pass swallow text. Thanks for your help!

This sound like lymphoedema to me. Once the Lymph nodes are removed it is difficult for the lymph fluid to drain and this shows up as swelling. Initially this area is quite firm and hard, but over time it becomes a sort of baggy oedema.
Kris still has this 3 years post surgery. Some days it is hardly noticeable, others days it is more pronounced.
Some people see a specially trained Lymphoedema massage therapist to help. I think you are still in the early stages of recuperation and recovery and this will improve given time.
Tammy

Thank you Tammy. My neck has been mostly wrapped couldn't really see and with all this new found time I have I seen it. Was wondering if just needed more time to heal or something else. Have a Dr appointment coming up should be able to find out more!

Wasamason

I ditto what Tammy said. It's Lymphoedema and this could last a very long time. My moms almost a year post surgery from having half her lower right jaw removed. She still suffers with the swelling. Ask your doctor to refer you to therapy. There are certain massages to help the lymp fluid get moving. My mom said it was very helpful . I learned a little from watching and now I massage my mom at home.

Good Luck
Heidi

Thanks sweetpe1. Have a Dr appointment in the morning I'll ask ,but I'm guessing probably have to wait till after radiation and chemo?

wasamason,
Heidi nailed it. Massage therapy helps this a lot! My pathologist showed me and my wife the best strategies and massages to use eight years ago, and again this trip around. Her suggestions and demonstrations have worked well for me. Eventually things got better eight years ago, not sure what will happen with the other side being dissected now.

Thanks all my neck has gone down a good bit.but now got little hole on jaw line had a wound vac on it,it pulled the tissue out to front of hole and filled in. But plastic surgeon thinks don't have enough time before radiation for hole to heal. So Wednesday I'll find out if another surgery or not. Guessing yes just some skin grafts,moving around skin on my face. He makes it sound so easy lol. Well I'll let you know how it turned out

Depending on when you start radiation (ideally NOW) and I'm not being facetious - I do mean NOW - 6 weeks is optimal for healing post surgery and based on your dates you should have already started - so - they should get on the rads and chemo asap - anyway depending on when you start it - he's right. It sounds like you have a bit of a fissure of some sort, (did they get clear margins?) these are prone to infection and take time to heal and often need a lot of help - ideally they will do it right away, ask them how long this will delay rads and chemo. It's a tough situation because you don't want to wait for rads and chemo, but at the same time it will be even harder to heal once rads hits it. And not to scare you sometimes the area doesn't heal because there is still cancer present. Push push push. Make noise and tell them enough humming and hawwing. This has to be dealt with now. and a decision needs to be made. Delays can be deadly with this cancer.

Hugs and best of luck.

Yes all margins are clear,see after hospital I went to short term living home. When they was cleaning staples they'd was using cotton wash cloth pulled staple that started hole. I have no infection the hole is healing. I'm just out of time. Plastic surgeon wanted to try wound vac first cause we had little time. Plus being so fresh out of surgery he didn't want to go right back in. If I had more time it would heal,the hole us slowly closing every day. I see him tomorrow I'm betting i gave surgery by end of week. He says I'll be home that night,plus he wants to pad the area up some.looking to start radiation and chemo probably next week

Hope the hole closes soon and that your rads and chemo start on time. What a pity the staple was pulled out.

Wishing you well!

Yay... keep bugging them!! ;o)

Doing my best all new to me. I'm trying only to go thru one time. Don't really like this dance!!!!. But I'm not giving in I just don't want many problems when I start radiation and chemo. Going to be hard enough. What's the old saying patch me up and put me in. I'll find out in a few hrs

Wasamason

Doing your best is all you can do. Good luck with your treatments . The days will fly by and hopefully all this will be in your past.

Best of Luck
Heidi

Ty Heidi. Well I go Monday for ct scan and get fitted for that mask that I read so many great thing about. Won't be long now,few deep breaths and dive in,not ready but will I ever be? Wish me luck I'll try to check in once in a while. With questions lol.

Looks like you are on your way finally! Good luck and hope everything goes exceptionally well with the Tx. Get all your questions ready. When my son started Rad Tx, they allowed me to go with him to show us the room and explained the whole process. They told him he could bring his own music to listen to or they had some they could play, to make the time go by faster. Here is a picture of my son being fitted for the mask:
http://webpages.charter.net/xila/paulrad.jpg