hi jennie. good luck with surgery. i sent an email to you. i think your husband and i have quite similar situations.

Jennie
As soon as you can, let us know what is happening..
May your God walk with you..
Sunshine.. love and hugs
Helen

Hey everyone, three days down!!! Erik had surgery on Wed and it was supposed to be 3-4 hrs and turned into 6. But overall it was very successful. He ended up with 40% of his tongue removed with clear margins!!! (Hooray) and they did a radical neck dissection and we havent gotten the full pathology report yet. The doc did find another tumor lurking within, and behind the lymph nodes that was undetected on the MRI, which she removed. Erik is 6'4" and weighs almost 300 pounds, the doctor had a very hard time getting all the nodes, and that was why the surgery lasted so long. He woke in a lot of pain, and it took almost 8 hours to get it under control. He went to ICU and only spent 1 day there. Yesterday was good and he rested well, Today was really good in the A.M. he walked and talked (slurry) and then he was taken to get his PEG tube and well that put the whole day down the tube.(pardon the pun-Im exhausted) He hurt so much afterward, and then began to get nauseous, finally the nurse gave him some fenergan(sp) and he fell asleep, for about 2 hours, but meanwhile he didnt give himself any pain meds and well..got behind on the pain again. When I left tonight he was starting to get comfortable again. This truly seems to be a nightmare, I know it is bad right now, but does it get better? I hate that he is in pain, and plus so many people are trying to visit, its overwhelming to me just having to talk and keep them out of his room. Im kindof complaining, Im kindof just tired and I know Im rambling. I so appreciate those who have e-mailed me encouraging words, and tidbits of advice it sure is helpful to me. God bless all of you
Jennie

Jennie,
I can't sugar coat this for you - yes it will get better for a little while as recovery from surgery is fairly quick (unless there are infections and other complications). Just about the time he he feeling a little better then they will slam him with the radiation and chemo part of the treatment and that is far worse than the surgery part. He'll have a few weeks before the radiation effects set in then the real nightmare will begin.

Surgical recovery - about 3 weeks.

Radiation and chemo recovery - about 6 months.

I would keep the visitors to a minimum and DEMAND better pain mamagement - it is a PATIENT RIGHT! He should be getting oxycontin, demerol or morphine at this stage. Probably a drip that he can self administer as needed with a push button (PCA). The pain scale is 0-10 with 10 being totally unbearable - use those terms with the nurses and doctors they understand that.

see:

http://www.cancer.gov/cancertopics/paincontrol/page2

See page 9 in the link below

http://www.cancer.org/downloads/CRI/NCCN_pain.pdf

Jennie,

I had a lot of pain too immediately following the PEG insertion but the good news about this pain is it decreases quickly. For me, anything that involved any stomach miscle at all was agony for the first 12 hours, the next day was better (I could at least stand up wihtout being in agony), then there were a few days where it hurt to laugh or cough but I was lots better, a week later there was hardly any pain at all. My tongue surgery (which sounds similar to Erik's)and neck dissection was also surgery I healed from relatively quickly. Give it a few more days (and be sure he keeps up on the pain meds) and he'll be much better.

One practical suggestion about the people trying to visit his room (or even call). Make a phone list and/or email list of the people who are closest to him and will want to know how he's doing or to visit and then delegate one person in that group (not you--you have enough on your plate) to call or email the rest of those folks with updates about his health *including* whether visits are a good idea at the moment.

If you do this, its also a good idea to make clear to everyone in the group that you are doing this not because he and you don't want direct contact with them but because calls and visits can be overhwleming when someone is sick (I realized this when my brother was talking about having "been put on some sort of B list" with a friend fighting cancer--because he was getting updates from a friend of the friend isntead of the friend herself. I suggested to him that maybe *everyone* was on that "B list" right now simply so she wouldn't be overwhelmed and saw the lightbulb go on).

Hang in there Jennie. There are parts of this that do seem nightmarish--but the good news is that lots of us have been through that same nightmare and are holding you in our thoughts and here to give you and Erik support.

Nelie

HI JENNIE ,SORRY TO HEAR YOUR BAD NEWS WE HAVE ALL BEEN THERE .PLEASE TAKE CARE YOU NEED YOU HEALTH AND STRENGH TO GO FORWARD THIS ILLNESS IS A BEAST I THINK MOST PEOPLE WOULD AGREE .YOU WILL GET THERE WITH THE HELP OF GOD ASK ALL THE QUESTIONS YOU NEED TO KNOW STAY POSATIVE YOU BOTH WILL BEAT THE BEAST...ALL MY THOUGHTS ARE WITH YOU ...GOD BLESS..MAZ

Jennie,

You've gotten lots of good advice above. Please remember you'll always get plenty of support and suggestions here, so feel free to come back any time with your concerns.

There can be a range of reactions to the treatment for tongue cancer, so it's hard to predict how your husband will respond. However, I think most of us who had both surgery and radiation will tell you that the surgery was a piece of cake compared with radiation (or chemo with radiation). I was 39 when I was diagnosed, and my symptoms had been virtually ignored by two doctors -- even though I made a point of asking about them and they were very clearly visible -- because they said I didn't fit the "risk profile" for oral cancer. I had a truly miserable time with radiation, like many others here, but over time my mouth has healed remarkably well. It's important to remember that there is usually an extended recovery time from radiation (one rule of thumb is that it takes a month of recovery for each week of radiation), so be prepared.

I don't know if you've had a chance to look elsewhere on the OCF site (beyond this forum), but if you haven't, please be sure to check it out. There's a ton of very useful information there and the news section is updated continuously.

Cathy

Jennie- I'm sorry to hear you have become one of us (caregivers of people with oral cancer) but I'm really glad you found the OCF so quickly. I can't tell you how valuable it was, and continues to be, when we were going through the treatment stages. Everyone here has given you such wonderful advise. The only additional thing I can say is to ALWAYS feel free to "vent" here. This can be very overwhelming and often everyone is focused on the patient, you get pushed to the sidelines. YOU are just as important, your kids know that, and you will have just as many ups and downs emotionally and physically as your husband will. I remember most times I felt like I was being petty complaining about what I had to do and go through...your problems and fears are just as important! So...if you feel like you can't complain or vent to anyone else...do it here! We all care, will NEVER judge and we have all been there. I must tell you that I had to go on Lexapro during this entire ordeal...there is no shame in getting the help you need for yourself.

One last note. During the radiation/chemo treatments my husband's sense of smell was very sensative. He couldn't handle having me cook anything at the house...it either made him nauseous or made him sad cause he couldn't eat anything except via his PEG. So, you might want to start enlisting your family, friends and church members to make meals for your family. It will take a great burden off you and really help your husband.

Keep us updated. You are in my prayers.

Lorie

Jennie,

In answer to your question, I did not have to have a trach, but before surgery I was warned that I might wake up with one, it really depended on how swollen my neck got, how far back they went with the tongue tumor, and who knows what else. I gues I just got lucky about that (there were plenty of other things I didn't get lucky about, I'd forgotten that was one where I did so thanks for the reminder).

I was stage II so I did not know immediately after the surgery, at least not until the pathology report came back and actually not until I got a second openion form a CCC, that I would definitely have to have radiation and chemo, So I had to go back to the hospital for the PEG operation. Much better to get it done all at once though. He should be totally healed from both of those by the time he starts rad and chemo.

This is a long ordeal of a treatment, there is no question. So come here and vent whenever you need to adn if he feels up to it, encourage him to come and vent too. There's such reassurance in knowing that whatever difficult thing you are facing, there's probably someone here who's been through it too.

Nelie

Jennie,

When I had my surgery to remove 25 percent of my tongue, I knew from my biopsy that it would swell up tremendously. The doctor kept the vent in from surgery and kept me under in the ICU until the swelling went down, no trach needed. I think I was in ICU for 2 days, 1 because of the swelling, the 2nd because there were no beds close enough to the nursing station to satisfy my doctor. I went home on day 6 with the drain still in from my neck dissection of levels I, II and III on the right. Tumor was under the right side of my oral tongue.

Best of luck to Erik, keep us informed!

Sincerely,
Lisa