Hi we are Al and Carole
We are from Canada
Al my mate (64) just found out he has cancer under the tounge. Heavy drinker/smoker. We see the specialist in the next city next Tues but the Cat scan is on Wed(19th)in our hospital.
Took a few days for everything to sink in and WoW.
Yes we know some things and yes we know other stuff but we don't kown anything really!
We live in a small city so the information is somewhat small town i guess. No other words to say i guess.
I'm scared because i know that TUESDAY will be the start of a very long vovage for us. He just does not want to think about it i guess... Only a snipp snipp and then life is back to normal... Oh ya I bet... Plenty of time for me to be the bad guy in this relationship i guess.
Just scared and i'm a fighter and don't want to go into battle without knowing the fight!!!!
Just Us
Carole & Al

Hi Carole (and Al),
and welcome to the forum. There is a ton of information on the home page and I suggest you start there because there is a lot to learn as you are finding out. Brian has done a great job organizing and finding the latest information.

I don't blame him for not wanting to know - many don't and it seems that we have more caregivers here then patients. It probably better if you are his advocate anyway since it can be very emotional for the patient.

Be sure to take good notes and don't let anything slip by you during the doctor appointments. We are here for you.

If he has to have radiation, consider a month of recovery for every week of treatment - typically 6 months. Recovery from surgery is much faster. For many of us it took a bit longer than 6 months to be fully functional again.

I sure hope that he has quit drinking and smoking at this point - it can have extremely severe consequences during and after treatment. Find a 12 step group for the drinking and get on the patch or the gum for the tobacco.

Hi, Carole [and Al] If Al reacts to this news and the treatment anything like my husband has,[which has been, don't tell me about it-Just fix it] then the burden is going to fall on you to stay on top of what is going on. It won't be easy for you because there is alot to learn and keep track of. Please find time to read the posts on the future "Getting through it" topic on this forum. The suggestions there will get you going in the right direction. Stay with us because you will get alot of help here and GOOD answers to questions. Amy

Thanks for your advice and i'm sure that i will be looking here for more as time goes by.
He has not quit drinking but has slowed down in his smoking. He says that when the do surgery it will be hard to smoke so it will be easier then.

Happy Easter to everyone and again thanks

Welcome to the forum. Take a deep breath, relax and try not to stress yourself. Take life one day at a time.
Darrell

Hi Carole and welcome to the group.

It is very difficult to get someone to quit smoking. It took my wife seeing my father go through this horrible ordeal to quit and even then it was tough.

I quit chewing and my wife quit smoking with the aid of this website www.whyquit.com.

Ask away, there are many answers here.

Scott - Free and Healing for Five Months, One Day, 10 Hours and 34 Minutes, while extending my life expectancy 12 Days and 16 Hours, by avoiding the use of 3659 nicotine delivery devices that would have cost me $828.36.

Hi Carole & Al -
I'm sorry you have a need to be here, but am so glad you found this site. I am sure you will find it a source of information and profound inspiration for you both during this journey.

Welcome.
Carol R.

Carol and Al
Just wanted to add my welcome... nice to meet you.
First advice from me, have him get a PEG. Its a tube which is inserted in his stomach and will be a lifesaver as far as nutrition is concerned.
good luck to you both.
Marica

I 2nd the PEG tube. I talk to a lot of people when they first begin treatment and the 2 most important items are nutrition and attitude. Of course, you need to have confidence in your medical team as well. So many people have a macho attitude and want to go thru it without the tube. Bad idea! Good luck to both of you! I always felt like this was tougher on my wife, the caregiver, than it was on me. I'm 51 and have my whole life ahead of me. Hang in there and get support if you even think you could use it, whether it's here or thru family and friends, or a support group.

Carol - Welcome to the forum. You and Al must be feeling pretty overwhelmed right now. This is a wonderful web site to get good information and lots of support.

It is my observation that the guys (patients) who let their wives do most of the 'work' with the docs and information - don't do as well. It is my belief that the patient must be REALLY involved with learning, asking, reading and advocating. The tough, stoic, passive guys suffer more in my opinion. Getting involved, being proactive helps in many ways - not the least of which is literally less suffering. So don't 'rescue' him - get and keep him involved too. When the stunned wears off, he'll be ready to get in there. Get him on this site - let us talk to him. We can help. There are quite a number of old, tough guys here. Be strong. Tom

Hi everyone
Its been up and down with emotions and such around here. 1st we get a note from Cancer Center to show up May 30th ... surgery and follow up... Ok we are ok with that... At least that is what i thought it said. Wish people would type instead of writting grrr.
Anyways a week later we get a phone call that they want him at hospital on May 16th and that the hospital would call about the information.
Ok Yippy they moved up surgery (we think).
When we 1st spoke to the doctor he said simple operation and Al would be home the same day. Did not think cancer has spread anywhere else ect. But at that time he did not have the results of the CAT SCAN.
OK the hospital calls... Now they are admitting him overnight... they are doing a panendoscopy. I thought that the surgery was called panendoscopy. WRONG!!! I did a internet search on the word. Ok now i get a little scared, so i call the Cancer Center to speak to surgeons nurse. One person i talked to said surgery on the 18th??? but hospital says the 16th.. hmmm Well after playing telephone tag i get to a place where i can leave a message for he to call me back. Hmmm that was on Tuesday.. We are now Thrusday and no call yet. This is getting annoying!! So i guess i spend today my day off on the phone playing telephone tag again.
Naturaly all kinds of thoughts are rushing thru my head. Did they find with the scan that it has spread? Are they doing the surgery?
I was wondering if anyone else has had Panendoscopy and surgery done at the same time? Hospital said it was only going to take 1/2 hr is that enough time?
Thanks for letting me vent in any case.

Hello Carole, I did also have a panendoscopy while in surgery. My case was different because they were looking for a primary tumor of unknown type. The procedure (panendoscopy) is not a big deal to go through. I suspect that his doctors want to be complete in their search for any spread or any other problems related to his smoking history. I would not worry yet that they have found anything beyond the tongue cancer.

You mention that you are in a small town. If you have any access to a larger medical community that has more experience it might be a good time to get additional opinions.

Hi
Thanks Mark we live in a small town but the Cancer Center and doctors are in a much larger city. Its one of the only Oral Cancer Centers in Ontario i've been told. So we have to travel 3hrs or so to get there.
News of the day is now they have cancelled the procedure.. Why???? don't know. I've finaly was able to talk to his primary nurse and she said that maybe there was another case more involved and bla bla bla bla and what the procedure is going to be. So now we sit and wait!!! for hospital to call back with another date. Make arrangement for time off work, travel, and place to stay ect. We shall get tru it i'm sure.
What worries me is that the cancer tounge is getting bigger while we wait.
Hurry up and Wait seems to be the game we are playing now.
I've told him to come into this site and look around i'm not sure if he has or not. He is just starting to get to the angry stage of cancer..and still has not stop smoking completly or drinking his beer. And if he does not stop following me so close thru the day, i'm going to hit him soon. Yesterday i was planting some flowers and step back only to step on his feet LOL he was so close. Yesterday everytime i turned around there he was 2steps away. Drove me nuts but made me laugh also. I know he wants me near but not that close OK... LOL
Thanks for listening folks.
Carole
aka Kountrylady

I would be on the phone daily to more than one person at this center. You have to really be your own advocate here. If you can see that the tongue situation is getting worse and they are screwing around with schedules, you need to get MAD. You need to rattle cages; you need to get things going NOW. Screw their schedules, if it were their life on the line, I bet you they