Just had my Partial glossectomy and modified neck dissection on Friday and I feel like crap! How fast does this healing take? I haven't had any treatment besides this so far but at this point I'm feeling like a can't handle anything more. If my nodes are positive for cancer I dont think i can endure radiation. Feeling very discouraged and depressed. My neck makes me think of Frankenstein and my tongue is so swollen and numb it feels like a piece of meat in my mouth.

Any advice?

Amy


Diagnosed with squamous cell on tongue in Feb.2016; clear CT scan showing no visible involvement in nodes or lungs; removed 30% of tongue on March 11th; whole left side of head numb. Non-drinker, non-smoker; very healthy person nut under stress from caring for 2 parents with dementia; Dad died last June and sore started in August.

Hi Amy,

Sorry to hear that you're feeling discouraged. From my perspective & knowing how I felt after my own surgery, I'd say you're doing quite well, if you're already able to log onto a website & type out a coherent post like this. Three days after my surgery, I was still pretty much out of it, with a nasty tracheostomy that needed a lot of attention, oxygen tube, nasal feeding tube, IV, catheter, and heavily bandaged basically immobilizing my wrist, thigh and neck (where the flap, skin graft and neck dissection sites were located).

You've gone through a fairly significant surgery and it's going to take some time to heal. If your team of doctors decide that you'll need some radiation to make sure that there's no sneaky little cancer cells hiding out at the margins of the portion of your tongue that was removed, they'll probably wait a couple of months to begin.

So what can you do in the next few weeks? Well, rest up, let others take care of you for once & try not to worry too much about what may or may not happen. Everyone has a slightly different experience & different difficulties with the healing process. I hope it goes well for you. After I got out of the hospital, I recovered pretty quickly and got back to the new normal in reasonably short order, with minor setbacks when I had the radiation treatments. It didn't keep me down though. Keep fighting!

Welcome to OCF, Amy! I know surgery is horrible and afterwards you feel lousy. It seems like the swelling just doesnt go down. Your surgery was only a few days ago and it was a very involved complicated one. Unfortunately it takes a good couple weeks for it to really subside. Always remember, everyone is different and will recover at their own pace. Best thing you can do is to listen to your doctors and ask them if they have any tips on how to help with the swelling. Maybe cold compresses on your neck/throat areas would help? Make sure your pain is managed as that is just unneeded stress that you definitely do not need right now. There are many members who have undergone similar surgeries. Im sure some will chime in and pass along some tips to help make it easier.

(((HUGS)))

Now I can't keep any pain meds down and vomiting over my swollen sore tongue is terrifying and painful. Haven't eaten anything except two cups of broth in 4 days. Doctor prescribed an anti-nausea drug so hopefully that will help. I'm nearing my breaking point here. If I need another surgery I won't do it. I would rather die.

Amy

Amy - I can't imagine what you're going through. You're already a hero in my estimation, so please hang in there. Everyone here is now part of your family and we're all pulling for you. I hope the anti-nausea stuff works, they have some great drugs for that these days.

Keep coming here for support. We're with you!

Amy, awwww I am so sorry you are having such a difficult time. We will help you as much as possible so please check in often and ask questions or voice concerns. We all understand what you are going thru. We have been there too and its absolutely horrible!!!

Do you have a feeding tube?

Are you still in the hospital?

There are anti-nausea suppositories. I know it sounds yucky but when you are sick and cant keep anything down it will do the trick. Im concerned about throwing up and the stitches in your mouth being disturbed.

Ask your doc for different pain meds. Make sure he understands you are nauseous and having major issues with keeping anything down. Maybe you could get the fentanyl patch. This gets changed every 72 hours and this would help keep you comfortable without worrying about throwing up.

With your intake being next to nothing Im sure this is starting to play a part in how lousy you feel. When malnutrition and dehydration hit together it makes you feel like you are dying. Its happened to me a couple times and I was really scared I was going to pass away.

If you are out of the hospital, maybe get someone to pick up some boost or ensure. If you can drink broth then you probably can handle these things so you can get some vitamins, protein, and calories in. Everything that comes out must get put back or dehydration can quickly sneak up on you. If you find boost or ensure a little too thick then try getting the new juice nutrition drink. Im sorry I cant remember which brand boost or ensure but its a 4 pack and blue that can be found in almost any pharmacy or grocery store. That liquid is thin like broth and has much needed calories.

If you are home and this situation is the same tomorrow you should call your doc and go in to get checked. Or if things continue and you feel horrible, a trip to the ER might be a better option than waiting to get into see your doc. Maybe your doc could prescribe you a few bags of IV fluids to help keep you from getting dehydrated.

Please check in and let us know how you are making out. You're family now and we take care of our own.

Thank you Christine,

I'm home now and just got some anti-nausea meds so maybe that will help (?). Food just tastes terrible as the sensation is coming back into my tongue and it's still so swollen I feel like I'm choking. I can drink maybe a tablespoon at a time and now even water tastes bad. I'm so afraid of getting dehydrated.

I could drink Boost yesterday but today it tastes terrible and it's hard getting down any at all. I'm also nervous about becoming addicted to the Oxycodon.

Having a terrible time but appreciate all of the help offered,

Amy

Amy,

You ned to be made more comfortable in order to heal - now is NOT the time to worry about addiction to pain meds. Do you have someone with you? Between the pain, nausea & anxiety, thinking through what to do for yourself might be too difficult right now. Is there someone to advocate for you and get someone's attention about your situation?

You need to talk/see someone on the medical team today and not wait any longer. It doesn't even have to be your surgeon, if that is a problem. Someone on the team, nurse, nurse practitioner, physician assistant, etc. You need to at least be evaluated for pain, nausea, and certainly dehydration. As Christine has said, if that is not possible, the ER can give fluids and medicine in an IV. Please do not wait any longer at home.

Ok, that explains why you are struggling. Do you have anyone with you that helps you take care of yourself? If not, please try to get a friend or relative to pop in at least 2 times a day to help you. During recovery, when your body isnt getting enough calories and fluids, you can quickly tire and feel exhausted just getting up and down to use the bathroom. Are you able to talk so you can call your doctor? If you can, call and get the doctor to write you a prescription (tell them you need at least 2 bags of IV) to go to the hospital and get hydrated. After 2 or 3 bags of fluids you will feel so much better!

Try picking up some of that ensure juice. I get the blueberry/pomegranate which isnt too acidic and has a surprisingly good flavor. Most pharmacies or grocery store carry this.

Ensure juice


PS... Im sending you a private message (PM). Look towards the top for a tiny flashing envelope to click on to get your message.

Amy,

I've been where you are nearly 11 years ago. Take the pain meds - they will help you with eating and healing. Take a day at a time. Focus on getting liquids and nutrition. I found that frozen ice (such as Rita's) was great for my swollen and painful tongue. Everyone is different, and it's been many years since my surgeries (had 4 on my tongue), but I believe the swelling was down within 1-2 weeks.

Both my parents developed dementia after I was diagnosed with OC, so I know what you are going through. Sorry to hear about your father. Can anyone help care for your mother? It is very difficult to be a caregiver to someone with dementia when you are dealing with your own health issues.

And welcome to OCF! There is a lot of great information on the website and this forum.