Well, I had my surgery done Wednesday. It was very stressful as the anesthesiologist came to the bedside pre-op and was very nasty to the nurse and went storming off in anger. I told the nurse that I was a bit uncomfortable with my life in this guys hands. So this starts a bunch of BS of the nurse manager coming over and asking me if I would like to take him "off my case." Seems they were trying to get rid of this guy even though he was the attending. I was so stressed out I burst into tears and told them to just do the F-ing surgery, I want to get this over with. The surgeon and CCC are great, I believe it was this one fart. Thank goodness the surgery is done.
I went to my room after recovery and frankly, I was in so much pain. I have bladder issues and felt like I had to pee but nothing would come out. I was just a bumbling heep. Thank goodness my friend Bonnie was with me. And my nurse that nurse was amazing. She was such a young woman but she was so compassionate and supportive. Thank Goodness for her. By the next day, I felt much better. I was yacking away, speech is very mushy but can be understood. I think the morphine helped with my mood. They let me go home that night. And I was glad to go. They took a bit more than 1/4 of right side of tongue and a piece from the floor of the mouth. Also a right neck dissection. They said they did not see anything obvious in the nodes in surgery. They are testing the nodes and the margins they took off in the mouth. I am so scared that I will have to go for radiation. I woke up this morning in alot of pain and my tongue felt it was huge. Once I sat upright, it seemed to improve. I took my Zofran, waited a bit then took my Oxycodone. I don't think it works as well as the Morphine, though supposedly it is stronger. Feeling somewhat better now. But forget eating soft foods. I can't manipulate my tongue well enough, it makes me feel like I am gonna choke. I am sticking with protein smoothies for now.
So, that's the story. Super nervous for results to come back on nodes. Denise

Denise,

Glad this surgery is behind you, and wish you a speedy recovery!

Hi, Denise
Glad to hear your surgery went well. You are very virtuous for not taking a poke at the annoying anesthesiologist (bet his hemorrhoids were acting up!). Give yourself time to heal, and keep up with your fluid and calorie intake!
Maria

Besides the office politics with the anesthesiologist, it seems like everything went smoothly. Sounds to me like you are doing very well. Im surprised you were sent home so quickly. That is a very good friend you have who stayed by your side in the hospital. Hope she is able to check in on you during your recovery.

Best wishes with a speedy recovery!

What a story. I totally understood how you felt at the pre-op. That talk with the anaesthetist is meant to be reassuring.

But you did it! You got through, you're home, you're talking, you're swallowing and the nodes looked good to the surgeon.

The tongue is full of nerves so any surgery to it is painful. I don't think Oxycodone is as strong as morphine although they tell you it is. You sound good, however, so keep up the good work and best wishes.

Good luck and now beat this BEAST!!! Semper-Fi Bob

So glad you got through it - I can't believe they sent you home that quickly!!!!!!! Holy crap. I recovered quickly but they still kept me in for 10 days. Hugs and good luck with everything.

Today I had a follow up with the surgeon. He removed the JP drain which was nice. I have been having a whole lot of pain on my tongue, especially in the morning. It feels real swollen in the morning, so I have been trying to sleep sitting up a bit. It was a little better this morning. Some problems eating, sticking with creamy stuff and protein smoothies for now. I feel like it went really well. So, waiting on pathology reports. I don't know if I will be having radiation, chemo or both or neither. I am anticipating something. Waiting sure is hard. Hope everyone is ok. Denise

Hi Denise,
Just read your entire diagnosis and posts. I'm so glad your surgery went well! Please keep maintaining your calorie intake and keep drinking juices and protein shakes! Stay positive and believe that your tests will come out clear. Dont worry about speech, it will all come back in time. My dad was speaking SO clearly just a month after surgery. Sending prayers your way!
Loves,
Kirti

Thanks for all of the support everyone. Kirti, so sorry about your Dad.
This sure is a rough road. So strange, one day you are planning a trip down to the Smokey Mountains and are checking out cabins online. The next day you are waiting on biopsy results. What a strange life this is sometimes.
Trying to just get used to the idea that there is a good chance I will be going for radiation soon. From what I hear, the side effects can be brutal, very sore throat and pain. I will get through it. Not like I have a choice! My Vitamix should be arriving in the next day or two.
How did you guys get through radiation?? I am trying to prepare by figuring out the juicing/nutrition thing. I am also hoping to have a few visitors. I live alone, so this is where I kinda/sorta wish I had someone I lived with! But I figure it should be okay. I am used to being alone, it really how I feel most relaxed. Maybe have a few people stop by and hang out, watch movies...or will I be too sickly for that? Were you guys abled to eat at all?? Do they automatically give you a PEG? I will have to check out some of the other topics! Denise

Neicy, you probably will need some sort of assistance. Many here were unable to drive or 100% care for themselves during rads and recovery. Anyone who offers their assistance tell them when the time comes you will let them know what they can do. For now take down their contact info. Dont be too proud to take help, we all need a hand from time to time.

Cancer has a strange way of changing who we are closest with. Some close friends and relatives will run for the hills not being able to handle facing your illness. Others who you barely know will step up to the plate and be there for you. Maybe its the fear of facing their own mortality that spooks some? I dont know???

Call the American Cancer Society immediately. They have volunteer drivers who might be able to help you get back and forth to your treatments. Ive gotten this type of help before and I also drive patients to their appointments. This is a great service, I hope you can use it. I suggest you attempt to line up helpers. If you are able to line up 5 people they could each take a day of the week and be your chauffeur to get you back and forth to treatment, maybe occasionally substituting someone from the ACS. Then line up 2 others who will check on you over the weekends. Going thru OC treatments is something that taught me (I was always overly independent) its ok to lean on others sometimes and people really do want to help but arent sure what they can do. The ACS also can help you pay for your transportation to treatments or a voucher at the pharmacy to help cover your prescription co-pays.

Intake is the number 1 priority! This is something I cant stress enough. Starting right now, you need to hit the minimum numbers of 2500 calories and 48-64 oz of water daily. No skimping as it quickly turns into a habit and skimping is NOT ok. If you can take more in (like 3000 or 3500 calories daily) that will only help you get thru this easier. I have a habit of nagging members about their intake. Ive been hospitalized several times for malnutrition and dehydration so PLEASE pay close attention to what Im telling you. I know what Im talking about! As far as fluids go, ask your doc for an open prescription to get extra hydration from the facilities chemo lab. This will instantly help you to feel better when the going gets tough and you struggle with your intake.

A feeding tube is not automatic. I would ask your physician if you require one. I had one and couldnt have gotten thru it without it. Others have done it without and and managed just fine. One big difference in how easily you get thru this is if chemo is given. Those who didnt have chemo usually have a slightly easier time of it. Also speaking of chemo... Ask your doc if you can have the smaller weekly doses as those are usually easier to tolerate than the 3 big doses.

As far as juicing goes, you will probably want to save that for well into your recovery. Most fruits are acidic and will burn your sensitive mouth and throat. Dairy usually has a calming effect on delicate mouth tissue. Smoothies and milkshakes that arent too thick will probably work best for the next few months. When I did rads, I rediscovered the oddest drink that really felt soothing to my sore throat, ice cold Yoohoo. I hadnt drank it since I was a kid but loved it during rads and recovery. Your sense of taste and swallowing will change during rads so be prepared to not always like everything you currently do. Eat as much as you can now so you dont go into this having cravings.

Another common denominator Ive noticed in those patients who had an easier time is they would continue to do light exercise during their treatments. Even a short daily walk was a help to keep them active and feeling better. Always protect your skin from the sun, especially during rads. Wear a hat and sunscreen. Never use lotion or sunscreen before you go to rads as it could interfere with your treatments.

READ, READ, READ and educate yourself. An informed patient is their best advocate. You will learn everything Ive written and tons more by reading the forum posts, its all there to be absorbed. Keep in mind everyone is different and will have a slightly different experience. Im hoping if you can push yourself with your intake that this will be not too difficult for you. We are always here to help. You can lean on us, we will get you thru this and back on the road to good health again.

Good luck!!!!

Thank you Christine for all the information. I am still waiting on pathology results. If I need radiation, I will be calling the ACS right away to set up help with rides. I am going to start walking around my apt complex tomorrow. I am trying to lay off the pain meds so that I can drive myself places. Sometimes just getting out to the market lifts my spirits.
Yes, the intake issue is going to really be the challenge. Well, probably by the time any radiation would start, my tongue will have healed some more. Right now, the surgeon said "advance diet as tolerated". Well, I honestly can't tolerate much. The side of my tongue feels totally raw and the underside where they took a piece of the floor of my mouth feels tender as well. So I am not moving my tongue around a whole lot which makes eating difficult. Today I have only had one Naked Juice protein shake, a Chobani yogurt, a bit of chicken salad, (like less than 1/4 cup), a bit of chicken soup and two 16 oz bottles of water. Not a whole lot. And getting even that down took major effort.
I am afraid of using too many pain pills and then they won't give me more. I am just gonna try to relax and see what happens with the results. Thanks for all of your help. Denise

Recovery from the major surgery you just had takes time. For most patients in their mind, they can never get well faster enough. If you can boost your protein intake it should help with healing faster. Peanut butter is a great source of protein and can be easily added to milkshakes.

Hang in there!!!

Neicy, make every mouthful count. For example, putting peanut butter in your smoothie adds calories but not the amount you have to consume. You may need to figure out the caloric value of what you are consuming but it is worth it.

Pathology results came in today...all is clear! I do not need radiation or chemo. I am so relieved I cannot express how I feel. I will have to be checked every month for the next year.
So, why do I still feel weird and worried? I asked if it could come back (stupid question, I know). He said yes, this is an aggressive type of cancer. So, now I am thinking that what if it comes back and they have to keep taking pieces off my tongue.
I HOPE I AM NOT BEING A TOTAL PAIN IN THE BUTT. I am so grateful and relieved. I feel like I am an ingrate for not feeling totally relieved. Anyone else have these muddy feelings?? Trust me, I know how lucky I am. I guess I am grateful but still kind of scared. Best to all. Denise

Congrats on the great news!!!!

What you are experiencing is completely normal. You arent alone with your feelings, the "what if I have a recurrence" plagues all of us. Its only natural to be afraid of going thru this again down the road after what you have already gone thru.

Try your best to limit your "what if" thinking to maybe 5 minutes at a time and then "change the channel" and force yourself to concentrate on more positive thinking. This isnt easy but with practice you can do it.

Great news Denise. Feeling worried is normal! At least you'll see a doctor frequently so you'll be able to ask questions every month. You are still being well cared for. And they have ways of reconstructing tongues, not that it will come to that.

As a cancer patient it's hard to stay calm at times but the anxiety wanes over time.

Wishing you well.
Maureen

Okay... if he believes it will come back why the hell isn't he sending you for rads and chemo to kill anything else that may be lurking???????!!!!!!!!

Honestly!!!

If this is aggressive the next line of defense is rads and chemo. Likely no chemo - a friend who used to be on here all the time. She had a small - I mean VERY SMALL - tumor. Dr had a feeling it was aggressive. So he did the neck dissection and found a node, then sent her for chemo and rads. She's fine now.

I just don't understand the mind set of some drs.

hugs.