Hi All,
I've been doing a lot of reading on these boards and am feeling like it is time to introduce myself.

I am a 42 year old mother of 3 (11, 6, and 3 years old), kindergarten teacher, never smoked, drink once a week, if that. In November I was diagnosed with tongue cancer. December 23 I had a hemiglossectomy with free flap reconstruction, radical neck dissection on the left side, and a tracheotomy. I had a peg tube placed 1 week after surgery. I was released from the hospital January 6. I have Stage 4 cancer, only 1 of 42 lymph nodes removed showed very slight involvement.

I am 4 weeks post surgery and while everyone says I am making great progress, it just doesn't feel fast enough to me. I am looking forward to talking with others who have been through this. My husband is truly amazing, but I don't always feel like he completely understands what I am going through. I am trying to stay positive, but it isn't easy!

Thanks for reading...have a sparkly day!

Gayle

I will say Hi, it sounds like you've been through a lot, especially with little kids. I have no diagnosis yet. My assessment and maybe biopsy appointment is tomorrow (see signature block). But maybe a note of cheer from one on the first step will still lift your spirits. Keep on keeping on, Lady. See you around the forums.

Welcome, Gayle!

There are quite a few of us who had partial or total glossectomies, c/w the free flap and neck dissection combo that unfortunately seems to be so popular. What a horrible time you must have had in the hospital, eh? It seems as though recovery time, and extent of the recovery varies a whole lot from person to person.

Not sure if you're going to end up getting radiation and/or chemo once you've had a bit more time to recover from that surgery. In my case, I started radiation maybe six weeks after my surgery. By then, the skin graft site on my thigh had mostly healed and the wrist flap was starting to become more comfortable. The skin on it was easier to scratch for many months, but it got better. Now it feels almost the same as everywhere else, other than the obvious scarring. The neck scar is almost unnoticable, and I have full range of motion for my neck and shoulders. My new tongue works alright, I suppose. Can't stick it out very far, but my school teachers taught me not to do that because it is rude, anyways.

Eating and speaking more clearly also took me quite awhile, but I think I had an easier time than plenty of others. Once they let me out of the hospital, I was almost able to eat as before surgery, until they started zapping me. Then after a few weeks, I was only able to eat liquids again. Lived on soup, milkshakes with protein powder, Boost/Ensure type products, juiced vegetables & fruits, etc. Maybe three weeks after radiation ended, I could eat mostly normally again, although to this day I still have trouble with certain things, like manouvreing a sushi roll in my mouth, or dissolving really sticky things like peanut butter.

Sounds like you had to get the PEG tube. Luckily I didn't have to deal with that bit, so I can't say I know what that's like. I hope you recover more range of motion and can get that thing removed soon.

My energy level was never really a problem, even while undergoing radiation treatments. I'm really lucky that way - some people have a horrible time with it. All I can suggest is to try very hard to keep eating/otherwise comsuming your calories. More calories than what your otherwise normal required calories might be for your physical size, especially if you're going to get some additional treatments in the coming months. Christine posts often about this recommendation, and it is a very helpful one.

I'm not sure if there is something specific you are expecting to recover more quickly from. This is a very significant surgery you have been through. If you have additional treatments coming at you, those also take a while to recover from. If you're like me, all you want is to get back to normal - get back to your routine. It was killing me to walk over the bridge to my radiation treatments and see people out there, paddling on the water. All the while knowing that my wrist wasn't healed yet and splashing some of that water on my wrist could have some serious effects on my recovery. I also just wanted to get back to work, but thankfully there was a nice short term disability program that basically made me stay home and rest up. In retrospect, I needed the time to heal, even though I felt like I could go back to work and be mostly useful.

Welcome to OCF! Being only 4 weeks post surgery seems quite early to be expecting a goal post in your recovery. Many folks use a measuring stick in months and that the new normal often takes a year to become clear.

I had chemo and rads, no surgery, but from what I have read here, surgery only treatment does seem to offer shorter time to being "normal".

Others will chime in but I'm sure they will agree you need to give it more time. Hang in there. Don

Gayle, I was a non-smoker and non-drinker when I contracted tongue cancer. But I did have lichen planus, a usually harmless skin/mucosa condition, for many years before diagnosis. Whatever the cause, it is a very hard surgery to deal with. I had a lot of abdominal surgery when I was younger but nothing prepared me for the multiple tubes of oral surgery and reconstruction. Thank goodness you are past that stage. The wounds on arm and thigh generally take about 6 weeks to heal enough to forget about them if I remember rightly.
Are you eating normally again? Are they giving you radiation in due course?
You are not alone. A lot of us here have been rehabilitated after tongue surgery.
I went back to teaching about six months after my hemiglossectomy. It was doable but I hated reading the notices first thing in the morning because it used to take a long time for my tongue to warm up.
Best wishes
Maureen

Welcome to OCF! You have found a wonderful source to help you with everything you are going thru. We have been in your shoes and understand.

After an going thru such a major surgery your body will need time to heal. I know its a month but you still have a long way to go. You are not alone in wanting to be back to normal quickly. It seems like none of us can ever recover fast enough. Especially for someone like yourself that has a large family to take care of. I imagine it must be quite difficult being down when you have 3 children who need you.

Hang in there and stop in often to read and educate yourself. An informed patient is their own best advocate.

I'll be around to hold your hand. I'm currently in treatments and checking in often. I have a child too and am dealing with that. I was happy to read Vanpaddler post on this thread above. It's posts like that that have me coming here to be inspired. Also, learn some things like the stack tongue depressor trick to stretch out you mouth posted by this sites creator. I'm working on swallowing exercises right now. Sometimes, write and post with those sticks shoved in my mouth.

I had surgery at the end of November and started with rads and chemo Jan 5th, treatment #16 was today so dealing with all quite of bit of pain to. I'm trying to think about how these tough treatments are zapping out the evil and envision the tumor shrinking and disappearing.

How are you kids dealing with it? Those are great ages.

Hi there - I was a year older when I was diagnosed (my kids are much older though as I had them when I was quite young) - same situation, non smoker, non drinker, and a vegetarian/vegan. I had one node involved and the same surgery so I know what you are going through. It takes time. You will heal and you will be fine. You need to be patient.

Are they sending you for radiation? If they suggest it (they probably should because of the node) as scary it is, don't be deterred by this, OC is a devil you do not want to have to dance with again. Even with rads and chemo there are no guarantees, but this cancer can be sneaky and it's recurrence rate is relatively high, so if you can hit it with both barrels now and hopefully the 3 or 4 months of your life it occupies - will be it.

Hugs and feel better.

Thanks everyone for the welcome and support. I feel like I have found my peeps!

I know I sound impatient, but my tongue is still so swollen, it sticks out almost two inches. Obviously I am not eating food yet and my only means of communication is by typing notes on my phone. This is fine, except that my two youngest don't read yet...it has been very difficult on all of us, with Mommy not being able to talk. This is my third week home from the hospital and my little one is just now willing to be close to me.

I will be doing radiation. I have my next appointment with the tumor board next week to decide my course of treatment. I am nervous about radiation but I know that it is a necessary part of this journey.

I guess I'm still reeling at the speed in which my life changed...one day I was my normal, loud, crazy busy self, running from home to work to kid activities, cooking up a storm and seemingly overnight I became this silent shadow of my former self. I have felt a little lost these last few weeks...and patience has never been my virtue, so waiting out this time for the swelling to go down in my tongue is torture!

Thanks for listening!
Gayle

Swollen is normal. Have they told you you could eat? If they said yes then my advice would be to start. Slowly with soft foods. Try swallowing it with a bit of water or better yet something thicker. Milk? Almond milk?
I had almost half my tongue replaced and by day 8 I could eat omelets - mashed potatoes, soft veggies, soups. Everyone is different but actually moving your tongue around will help with the swelling. Move it - it gets the circulation going the swelling should go down. Don't be afraid. It took a long time for it to be "normal" but functionally okay maybe 3-4 weeks. Then they nuked me!!! Rads shrinks tissue so my tongue then got a bit smaller. Now it's Aokay. Move it around get used to it. Hugs...