Hello everyone- have not been here in a while! On 10/8 I had a wide resection of the left floor of the mouth and modified neck dissection on left. The good news is that there was no cancer in the nodes, no cancer in the periosteum of the jaw, and the margins were clear! I am to meet with a radiation oncologist here on Wed. as radiation is recommended due to recurrence rate of the type of CA I have. At least the radiation will only have to be to the mouth area and not neck.

I was on full liquids until this past Wed., when I was told I could eat whatever does not cause pain. I was also told to chew on both sides of my mouth as I was trying to make everything stay on the right. I have no feeling or taste on the left side of my tongue plus my tongue seems swollen on the left and is now attached to the floor of the mouth on the left side. I find I really have to think when I chew because I keep inadvertently chewing on my tongue to the point where it is raw when I look in the mirror. My surgeon says I will eventually regain both tastebuds and sensation, although I will probably lose taste first due to radiation. I also cannot open my mouth very wide. I keep trying and it just will only open so far. I've even tried pulling it open further with my fingers!

I had asked surgeon about speech therapy but she did not recommend it. However, I am still wondering if it would not be helpful. Also, the left side of my neck is so tight, it makes it hard to turn my head. Is there any excercise to do to help with that? Or does it just take time?

Also wondering if it is normal to get tired so easily still? I feel like I should be able to get up and go but find I run out of steam quickly. I was in fairly good health before all of this!

Hi Ssusan,

I had 1/3 of my tongue removed in March and have just finished radiation and chemo 7 weeks ago. I did not have a neck dissection but i can only put 2 fingers in my mouth. There are excercise you can do to help you open your mouth, highly recomend it as it gets worse apparently if you dont. Look up under "trismus" on this website and there will be plenty of info.

I'm still tired now. Somedays i feel good but other days i could lie in bed all day. All normal apparently. Good luck with your treatment.

Minh

Welcome back Susan! Glad to see that you're hanging in there!

I had went to my nurse practitioner for something else about 3 months after surgery and she sent me to PT and a speech evaluation. I was good with the speech and the PT helped me tremendously. I'm just not sure if it's too soon for PT or is there no such thing as "too soon".

i had the speech therapist seeing me while i was still in hospital after the operation- maybe 10 days .

I think a speech therapist would be helpful for yo especially at first. I had so many different ones because they kept quitting that I got tired of working with new people al the time.

The best speech therapy is getting to talk to different people and also reading and singing outloud. I used to record myself and play it back and try and improve that way. Massage and yoga are great for the neck. I also go to a chiropractor too. It just takes time. Honestly yoga has been the best for the neck.

Hang in there and try and be patient Kate

Thanks guys! I am particularly concerned about the trismus, esp. after reading radiation can make it worse!! I'm wondering if that is something the rad. onc. would order PT for-- I see him Wed. My surgeon is four hours away in Tampa. I can't take a bite out of a sandwich unless I smash it flat to get between my teeth!

Your regular doctor can order PT or Speech therapy. Call them and ask for a referral to be submitted and then check Tricare for the approval.

I really don't think there is a normal for recovery. Maybe in a few areas tho.

[quote=fullofquestions]
Also wondering if it is normal to get tired so easily still? I feel like I should be able to get up and go but find I run out of steam quickly. I was in fairly good health before all of this! [/quote]

If it helps at all, I'm three weeks post not nearly as big a surgery as you've had, and I'm zonked. I find I can do one thing a day, maybe two if I take a nap in between. So I either fold laundry *or* go to the grocery store. I either go have a massage *or* I clean the bathroom.

Things have improved markedly as my intake has improved. I don't know about you, but I lost 20 lbs in the first 20 days after surgery, just because nothing was working very well.

Remember: We're always telling the patients that we transfer out of the ICU that it's going to be a long road, and to be patient. It's our turn to hear that now (darn it). Just keep eating (that's the most important thing) and increasing your activity slowly, like we're always telling other people!

I feel pretty much back to normal except for not being able to feel the left side of my tongue or taste on that side. I keep chewing my tongue up pretty good (guess it is a good thing I can't feel it, cause it would really hurt!). I am actually going back to work in two days! Jumping right back in-- doing 12 hour shifts Friday and Saturday. My radiation oncologist is still developing "the plan"-- I had the simulation last Thursday and then he wanted an MRI today due to artifact from dental work on the CT. Now the plan is to start radiation 11/22. I feel so normal I keep wondering if I really need to go through this. . . not looking forward to it at all!