My dad (63 years old), has Stage 4 tonge cancer. The tumor is 7 cm long x 6 cm wide. They will be removing more than 3/4 of his tonge along with all the lymph nodes as a precautionary measure. They will be reconstructing a flap using thigh tissue. Tomorrow is his surgery date. In my grief this morning I stumbled on this site. Most of our surgery questions have been answered by the doctors and nurses. They have been open with us from day one that speech and swallowing after surgery may never be possible. I am concerned that this reality may still come as a bit of a shock to him when he awakes after surgery and he can't speak. I read in one of the posts that one lady gave her husband a squeaky toy to get her attention - I will be using that idea, thank you!
We have a white board and an iPad for him with the various speech apps. It saddens me to see that so many people are going through this. But I am happy to have found a place to turn for some support.
If I can ask for some positive energy to be sent our way tomorrow to help keep him strong and willing to battle this.
I'll keep you posted - thank you!!
Lea

Hi Lea, welcome to OCF! Glad you have found this great site to help you and your father get thru everything he is facing. Tomorrow is a very big day. Many members have been thru this and have gone on to eat and speak while others wont. I had one good friend who sadly lost her battle last year after several recurrences. She had a major surgery where most of her tongue was removed and she should have been unable to ever speak again. Yet, somehow my friend while only a couple days after the surgery greeted her mother as she walked into her hospital room with "Hi Mom, love you". I hope your father will make a full recovery and go on to lead a happy, healthy life. I know it seems like it may not be possible but please never give up hope. Speech therapists can do wonders, get them involved as soon as the doc says its ok. He may be very swollen for a few weeks so it might have to wait a little while but try to get the ball rolling and his appointment set up while he is still in the hospital.

Best wishes tomorrow!!!!

Hi there. Okay you're in Toronto hopefully your with dr Irish at PMH - if so your dad is in good hands - I lost 1/3-1/2 of my tongue 16 mos ago. Same surgery - I was okay after 10 days and pretty good after 3 weeks - at 5 weeks I started radiation and chemo. And that was a pretty big step backwards. I'm 14 mos out of radiation as of yesterday and doing well. I have been blessed - truly. If he's at TGH on the 6th floor post op - stay with him the first 24-48 hrs as much as you can - I thought they were going to kill me. I used to be a nurse and let me just say for a unit that has high level patients they were pretty lackadaisical.

Good luck tomorrow. and if it is dr. Irish tell him hi from Cheryl de luca.

Hi Lea. Glad you found this wonderful site for information and support. I will be praying for you, your father and the surgeon today for your dad's operation. You have found without a doubt the best place for up to date information and support. From one "caregiver" to another it's not easy. Hang in there and like Cheryl said stay close to your dad the first day or two.

My mom had the "whipple" surgery at Johns Hopkins in Baltimore, MD for pancreatic cancer. She had the top surgeon in the country at one of the best hospitals in the country but once surgery was over they basically left my mom alone. She had so many tubes and drains that she couldn't even move let alone reach for a nurse call button. Luckily they had no problem with one of us staying with her round the clock.

Best wishes and let us know how surgery goes.

Seriously - on day two I though I was going to suffocate to death - it took 45 minutes, three calls to the nursing station to get someone to come - I was having trouble breathing less than 36 hours post op - i had a trache ( couldn't speak), a catheter in placem- an IV in my foot - and two drains, my left arm was out of commission, I had about 60 stitches in the graft site, and weakness thanks to the neck dissection, and I had bandaging on my thigh. I couldn't get up - I pressed the buzzer and they would ask "what?" - here I am I can't speak... I freaked when they finally came in. I could have been dead - I'm still pissed...
My husband and inlaws came that night and I lost it... Told him I thought they were going to kill me (on paper - wrote it down) - rang the call bell to demo, and my husband went off on them. He actually said - you can't be that stupid.... To the ward clerk... Then he said how's she going to answer you? Common sense, a patient has a non fenestrated trache in post op, they ring the bell you get your ass in there immediately - simple as that... to this day it still blows my mind.

Hugs!

I know the fear you felt, I'm sure by now he's through surgery and improving rapidly. It was amazing how quickly Jim started feeling better following his surgery. I'm sure you'll find that your communication will still be strong and probably stronger even if it's totally non verbal. Jim rcvd speech therapy and had an electro larynx...just wouldn't use it. Makes me smile to remember how stubborn he was-thank you for that! Take care!

Cheryl- your post made me chuckle, I had the same scenario once during my 2.5 week hospital stay, I was never under the care of that nurse again!

Lea - I hope your dad is recovering from surgery well! Welcome and I also glad you stumbled upon us!

Cheryl - I just loved your post! And what a great guy your husband is!

Cheryl you described my hospital stay almost word for word! I had a feeding tube and my mom had asked the nurses how often they were feeding me. The nurse says "as needed". My mom (who is a nurse) almost lost it. She had to explain to the nurse how I was taking nothin by mouth and COULD NOT SPEAK. The nurse also didn't know how to o trache care. I not know what would have happened without my mom. I told them that we should get a discount since my mom did most of my tube feelings, wound care, and trache care.

Hi Everyone.

Thank you for the prayers and well wishes. The surgery took 15 hours last Friday. Everything went as expected. They removed 70% of his tongue, all lymph nodes, and reconstructed a flap using the thigh tissue. The swelling and stiches/staples were not a sight I was prepared for. He had some complications with swelling above and below the incision. He was in post recovery for 4 days because they was a shortage of nurse so thankfully, someone was there to monitor the swelling and check the flap hourly. On Tuesday he was transfered to his own room. He was able to get up and walk around the day after surgery. He's been walking 3KM daily since Monday ... doing laps around the floor he's on. The swelling on the right side has subsided, hopefully the left side will follow suit too. They will be removing the drains later today, as they have not been draining much fluids. Today or tomorrow they will be putting the G-Tube in. I watched while the in-turns tried to change his tranchea tube yesterday. It took them 8 times before they could get it alligned. I was ready to smack him!! However, with this new tube, he's finding it easier to bring up the mucus.

Cheryl, yes my dad's doc is Dr. Irish along with Dr. Hoffer (head of plastics who did the reconstruction) from PMH. I truly hope Dr. Irish is as good as people say, because his bedside manner has left me disappointed. We are in TGH and the nurses have been great with the exception of a few.

Question: My dad has always been a health freak. Supplements and vitamins are a part of their lifestyle. I can't seem to convince the doc's to allow for a probiotic to be added to his mealplan. He finished his antibiotic a couple of days ago, and I'd like for him to start supplementing again and rebuilding wellness inside out. I am shocked at the resistance to natural health practices from the doc's and dietitian. Is this the common?

We haven't met with the radialogist yet. Nor has a Speech therapist been by.

I'll keep you posted.
Thanks again,
Lea