It has been a week since I saw a doctor at the cancer center and now great timing I know all kinds of questions are flooding my mind. Also reading about survivors of probably worse than I am going to have to go through as far as I know (at least until the cat scan) amazes me at their strength. I am not sure as much as I want to have the strength of the people on this site I just don't know where to draw it from. I probably am not utilizing this site properly cause I am reading about people with "peg tubes" and most people have had to have radiation or other treatments so I am kinda still in the dark as to what to expect from what I am scheduled to have done I don't know what the terms are so not sure if I am reading even pertains to me. It is great support for sure. I am needing information for coming home I know I will be taken care of in the hospital but I am on a limited income where not much is covered and have a month to prepare and gather and not sure what I am going to need when I came home as far as eating, drinking I don't know what to expect after the surgery that is scheduled all I know is about the feeding tube and the breathing tube ...to me that is scary enough we didn't even get into anything else I was just so overwhelmed with the surgery. At this point I would really appreciate some imput. I know I could get the same information from the nurse involved but I fear that would take too long at this point my stomach has been so upset today just can't keep anything down. I have just had a bite of reality with my journey.

Thank you for your help

Dianne

Extremely

Dear Dianne,

What I am reading in your letter sounds like you need INFORMATION from your doctor. It is only fair to know what you are facing and what he is thinking. Our minds are our worst enemies when they are left to imagine the worst!! I can understand your need to try to read as much as you can, but you are going to burn yourself out trying to cover all of the "what if's."

Start with the basics: Where is your cancer located? On your tongue? That's what it sounds like, since you describe a graft from your arm. There are plenty of people here who have undergone that surgery.

Take a deep breath. You can't change anything, and you will wear yourself out.

I take it from your note that your doctor has said something about a feeding tube (the PEG tube) and a breathing tube (the tracheotomy tube.)

Somebody else jump in here......It sounds like maybe your tumor is far back on your tongue (???) and he is wanting to protect you against the possibility of swelling from the surgery, so he will plan to place a breathing tube for a few days. I don't think that most people go home with those. (I am not a doctor, of course....I'm just trying to get some information.) He might be expecting you to have some trouble eating at first because of whatever surgery he has planned, and hence, the feeding tube. Perhaps if he is going to do a graft to your tongue, it will take some time to allow it to heal (maybe he doesn't want it disturbed by eating for a while) and maybe then it will take a bit of time to practice with your "new" tongue.

OR.........Maybe this is not what you are going to have at all! Let us know more of what you know.

You need more information, and I suggest that you call the doctor's office, and tell the nurse that you really need to talk with him, and either have him call you or give you an appointment just to talk.

You can't adjust to what you don't know about!!

Tell us what you do know, so we can start to help you understand and to feel better about it.

XO

Dianne, I agree you need more info. from your doctor about *exactly* what is going to be done and why. If you are getting a feeding tube that will be used to help you feed yourself once you leave the hospital, it is probably what is called a "PEG" tube or sometimes just a "G-tube". You should clarify with your doctor why you are getting that and how long you will need it for, as well as what sort of stuff you should be putting down that tube.

The "flap" means they are going to take tissue from somewhere else (usually your leg) and ue it to replace some of the tissue they will remove in the surgery--this is often done if they have to remove a lot of tongue so that you have what works as a functional tongue to help you swallow after you recover. Again, clarify this with your doctor if you don't understand the details.

I understand you may have gotten so scared as the doctor was talking you missed a lot the first time. That is NORMAL so tell your doc that was what happened and you need to get some clarification. Write out the questions you have ahead of time. If you have a friend who can come with you when you ask the doc questions, bring them and see if they will even take notes. Or ask your doc if you can tape record the questions and his or her answers so you can go back to listen again afterwards.

You should also ask if there is a possibility that this surgery will be followed by radiation. They may not know until they see the results of your neck dissection during the surgery but have them explain what the possibilities could be if you want to know "what next".

And as for people here having strength you don't have: that is what we all thought when we came here newly diagnosed. One of the great secrets about what it is to be human that you do learn in the cancer battle (if life hasn't give you some other reason to learn it already) is that we all have WAY more strength than we know. Even though you sound very scared, you will get through this. I know I was terrified and I did.

Nelie

Breathe deeply and relax. You are at a great place for information. I agree with the others about getting alot more information about your surgery - I am surprised that they didn't explain more to you, and yes, you should contact the doctor or nurse for another appointment to again go over what they are planning. My advice is to take someone with you - family or friend - who - guaranteed - will hear more/different things than you will.

As far as what to expect at home post surgery? If you need it the hospital can arrange for a nurse to visit you - homecare - to deal with dressings and make sure that your tracheotomy is healing as expected. When I was in hospital in Winnipeg, I was also visited by a social worker who enquired as to who would be at home to assist, patient needs, etc. No doubt that will be the case for you as well.

I hear that is a great Cancer Centre in London so I'm sureyou will be in great hands. Keep posting.

From a fellow canuck!

Donna

Thank you for your answers I know I am not very clear it is just they told me they were doing but it was if it was so matter of fact and sorry if I mislead anybody I have been reading about a peg tube but no mine is supposed to be through the nose. The cancer is on the floor of my mouth from what I am understanding they are going to remove the whole floor of the mouth and something about the tongue (base and right side) then removal of lymph nodes from what I understand the doctor doesn't seem to think it has invaded there yet. Most of the cancer is on my right side but they are going to disect both sides of my neck he said to be sure not all of the nodes but some of them. I think the doctor just wants to move on this and I am thankful and if information changes with the cat scan then we go from there at least he has surgery booked. I don't know if this helps clarify things just like mud lol. I have yet to have a cat scan before surgery to determine how far the tumor has travelled. I believe that the doctor set this date with what he knows and if there is a change he still has the date set. I am needing to know more about the disection too. I am trying to wrap my mind about what I am up against personally what kind of mobility after surgery. What kind of pain how is it handled? From what I am reading different people are up and about sooner than others. My daughter is getting married in May 2009 and I wanna be able to help not just be there we have so much to do before then. I also am having a lot of life changes some good (today I quit smoking) and some well they just hurt (like having to give up my dogs). I find myself being angry too very angry.
Because London is a ways away I am going to have to set an appointment with the nurse and or doctor when I go for cat scan. I don't think they will talk over the phone. I also have no family doctor and it will probably be more impossible to get now. I just gotta figure out where to get the strength to do this. You people are all rocks and just amazing people. I know I am a wuss in the worst possible way. They had to take a picture of my throat putting the camera through my nose,I freaked and that was actually nothing except for my extremely high gag reflex. (It is gonna be my worst enemy through this ordeal). This is also what is concerning with the feeding tube through my nose. I have had one before when I had a gastric bypass and they had to remove it early cause it bothered me so much. I know strength comes from within but I don't feel very strong right now. Everyone says its just there and it comes so I am waiting. I am trying very hard to live in the here and now but still gotta plan for things and make arrangements.

Thank you again for all your help
Dianne

Dianne:

Hang in there. Please try to calm down, this isnt going to do you any good being so upset. You are sick and the doctor is going to fix it. You do have the strength too, you just dont realize it yet. Do you have a caregiver or someone who will be helping you? Will your daughter be helping you?

Here's a few things I did to prepare for my treatments. I started cleaning like never before, every room floor to ceiling. I just figured with 2 teenagers in the house the cleaning wasnt going to get too much attention while I was sick. I also stocked the house with groceries that were easy meals for my kids. I bought alot of soft foods for me like applesauce, pudding, soups. Look for low sodium items as salt can burn your mouth. I got all my bills in order and set up direct debit on them so I wouldnt have to bother writing checks. I got the oil changed on my car and got it inspected. I also got my chimney and furnace cleaned. Sorry to hear about your dogs, I did manage to keep mine but it wasnt easy.

I hope these ideas help you. When I would worry, I would decide it wasnt going to get the best of me and I would go clean or do something positive.

Has your doctor(s) said anything about radiation or chemo post surgery? I and I stress the word I would want a second opinion on the neck dissections as it sounds like they are just going to do that surgery just in case and if radiation is planned they can target those areas and in my case I was able to avoid any ND's.

Hi Dianne
Can you tell us when you saw your surgeon, Dr. Fung, was it at his clinic or did you meet the whole Head & Neck team at the Cancer Centre? Did you get a folder filled with information that the Cancer Centre gives to new clients when they register at the Centre? If so you should have lots of contact numbers to call, and yes, they will call you back. I know Dr. Fung has a Nurse Clinician working with him and she always responded promptly to voice mail or pager messages. I know she would be happy to answer all your questions. A well informed patient is a more relaxed patient and in the best position to work with their treatment team.
My husband recovered very quickly from his surgery, with no residual pain and was out of hospital in 1 week. Post surgery you will be in a special 4 bed observation room with 1 nurse per patient for your most acute phase post operatively and then 1 nurse per 2 patients as you are more stable. You will also have a pain pump for the first couple of days i.e. you push the button as you need it and you are admisistered the pain medication through your intravenous line. You will receive excellent care, rest assured.
Make a list of all your questions before you call or see the nurse, and of course ask all the other ones that come to your mind as you are talking to her. Good luck.

The best place to get your go from is deep inside yourself. I was told I would have the flap , the tubes and other things. In reality I ended up with none of that. The Dr is probably letting you know the worst that can happen. Go in with the determination that you won't need all of it. I can't say I came out perfect, but I did come out and am still among the living. You are in my prayers.

David, This case is different from yours, though. They knew from your physical exam and CT scans that you were stage IV and so would have radiation and chemo no matter what. She has said she has no signs of cancer in the nodes based on a physcial exam and it sounds like the doctor will be using the CT scans, and then the results from the neck dissections as well to determine if that is really true when they are looked at more directly. If it is, they won't need to do radiation and chemo most likely. That's why the neck dissection. if the neck dissection is not done, there's a 30% chance they could be wrong about the nodes being cancer free, and she would be undertreated and more vulnerable to a recurrence.IOW, In this case, the doc needs the information from the neck dissection to decide whether she should have raidaiton and chemo. That wasn't true in your case.

Nelie

Thank you all for your responses it is helping somewhat I think I was having a major anxiety attack last night but all the same I go back and forth on all of this. I am wondering what to expect having a the flap inserted and dissections what others have experienced having this proceedure done. I understand you are well taken care of but what about drinking, eating, talking after ward. I am assuming it depends on how much of the tongue will have to be taken. So basicially it is a lot of guessing still. I have experience with my mouth being cut appart as my teeth have been removed already long time ago. Doctors and nurses unless they have experienced it can only go by words. I believe Nelie has hit it right on the nose as far as the dissections go. They are hoping they don't have to do radiation or any further treatment. I saw my doctor at the cancer center in London what a huge place. I am having a further cat scan and we will know more from there. When the oral surgeon did the biopsy part of my tongue was taken with the rest of the leasion. My tongue seems numb but get a lot of sharp pains in in every once in a while. The doctor had the pathology report from our local hospital, a cat scan and an ultra sound to work with teamed together with his knowledge. From what I understand he is one of the best in the area and I know I had luck getting him and his team. I have been told I will have a two week stay in the hospital and home care when I get home. My husband accompanies me to my appointments and he did what he could to ask questions but I believe he was in as much shock as I was. I will ask the nurse more of what to expect post surgery. I was so overwhelmed with the idea of surgery and pictures they were going to have to take inside my throat which again was really nothing but to me it is I felt like I was choking the whole time of the test thought I had broke the poor nurses hand. Which is making me nervous to have a feeding tube through my nose into my stomach. I realize there are people who are or have overcome worse situations. But I feel like I am choking.

Today is my first smoke free day!

I thank you all for your support and understanding I do tend to overreact but this is part of my disability. Anxiety attacks are a huge part of it. I respect all of you and you have my complete admiration and trust. I will trying to post information as I think of it or as it is shown to me. I am waiting patiently for a cat scan date to go back to London.

A little calmer now
Thanks
Dianne

Dianne- My husband had surgery that is quite similar to what you have described. He also had to have half of his bottom right jawbone removed and replace with bone from his leg. He had both sides of his neck dissected also and they found more positive nodes than what showed on the scans so for him that was the right way to go. He woke up with a G-tube and a trach. The trach was removed prior to him coming home and the G-tube was replaced with a PEG through the stomach. He has a bad gag reflex also but due to the meds he was given in the SICU he barely remembers anything. Following his release from the hospital he had chemo and radiation but we knew this going into the surgery. He was in the hospital for 2 weeks but his leg was also healing so you may have less time there.

Hang in there. This is the best place to come for info and reassurance. Please do what the others have suggested and get all this straight with your doctor.

Sue

Thanks for that info Sue. Would anybody know if the peg is a necessity for any tongue surgery or is it just used when you have radiation treatment? I am really not truly sure on what a Peg is either?

Well I would definitely trade a ND for no radiation, that's for sure but I wouldn't want a ND unless it was absolutely necessary IF I was going to get radiation anyway.

Thanks David I think that is also what the next cat scan is supposed to be able to tell as I said I think...but I am definately more informed to talk to the dr before surgery...Again thanx..

Dianne

That's a great benefit of this site.

Dianne - the main web site has answers to much of this, for instance here is a page on PEG feeding http://www.oralcancerfoundation.org/dental/tube_feeding.htm

Thank you for the link. I still am not sure I will need that apparatus. I know it depends on circumstances but at least I know what it looks like and am sure my caregivers will inform me of details should the need present itself.
That site lead me to wander about the sit and I took some time out to read some stories of survivors including Brian's. I am amazed at the journeys all have endured. I guess at this point I have to grab a hold of myself, dig deep and pray that this can be removed without radiation treatments. No matter what directions the results could have taken so far they have alway been in one direction. I am praying really hard that I will not have to travel the road so many of you have. I just cannot say it enough you folks are all amazing and have amazing stories to tell and I do mean amazing. I am curious though this being an american site if there are many Canadian members or links. I really do thank the nurse for this site.

I will wait till my cat scan and continue to pray for the favourable results my doctor believes it is. I am no stranger to surgery but have not had anything this huge before. I don't know if I am just paranoid or not but I have feelings in my body that friends are trying to be supportive and telling me it is sore from muscles being affect by the cancer and same with my jaw and ear ache (which the doctor was aware of at my consult visit) Like how far I am feeling sore and achy. It is going down my neck almost to my collar bone. Anyway I have to wait for the cat scan for definate answers. Fretting at this time won't do any good. (Oops did I type that...that is me talking to myself again to keep me on track) I have to keep telling myself to live in the moment which is so hard to do for me but some of the best advise to me.

First step taken One full day without a cigarette. Wasn't all that bad just moments...Looking forward to day 2!!!

Holding my own (sort of)

It is without a doubt the most difficult mental adjustment that we all had to make and like so many other things, time is the big healer.

Re the Peg and I'm not an expert here since I opted not to get one but remember this...if you do want one or think that you will ever want to fall back on it, you are well advised to get it put in before any treatment that may lower your white blood cells begins. Waiting until the last minute to make the Peg decision may not be prudent so talk about the timing of the Peg as much as whether or not you need or want one.

I have another question so I can look it up...what is it called when the whole bottom of your mouth is removed no bone just down to the bone from one side to the other? I am not sure I am thinking to the gums and over (as I presently have no teeth and wear dentures). It would be helpful for me to know what the medical jargon would be for this proceedure. Then I can try to piece together and familiarize myself with that part of my proceedure.

Thanks

Dianne

Don't want you to think I ignoring you but I can't help you there but I'm sure someone here knows.

Hi David no worries about thinking you are ignoring me you all have a life and are busy and I didn't give it a second thought I was just putting it out there for anyone who could help me it's the termonology that is getting me...like "squamous cell carcinoma" and " mandible" I am having trouble understanding terminology for sure. I talked to my husband's home nurse today (he is diabetic and has sores that will not heal on his toes)and she was commenting on how proceedures in the united states are so much more advanced than here in Canada. I hope this doesn't lower my chances at survival. Anyway I am just plugging along and concentrating on finding info out and not smoking what a curse. Any input will be digested and sorted out and hopefully have positive impact on me. After talking with nurse I again don't wanna wait but I don't want it to happen either. My husband said if I was so upset over this just not to have it done but I don't feel this is an option...see I am so all over the map...just can't seem to stay in one direction. I have read emails, posts, blogs and all point to one very very very scary operation with lots of side effects and possibilities the only common factor is the people are alive to talk about it!!! I really am hating this waiting game and think I will call Monday to see if anything has been set up..I know I have had this monster for at least 8 months and I am afraid if I go much longer it will travel too far...I don't know how much difference four weeks is gonna do...

Still up in the air Actually not a bad view from here :)) just spooky

Dianne

Dianne,

if you consider not doing anything there is only one way this will end. You are not talking about elective procedures here. At the same time do not go nuts with all kinds of scenarios that may or may not happen. Continuing to smoke will drastically lower you chance of survival, if that is a concern. This is a powerful experience to kick the habit once and for all. This I know first hand.
Once you have a battle plan things should settle down.

Best

M

Hi Markus I am truly sorry if I mislead you I know it is not an elective surgery but all I guess I was trying to express is that like everyone else I don't want to do it but I do most emphatically do know where it will lead. I am also going back and forth wanting the surgery quicker and back to thinking waiting for it will be fine too. I think I was just relating that although he is a big support he is thinking of me cause right now it is not visible my illness outwardly. And he is my main support and he has told me up front that should the tables be turned he would not have surgery and let things take their course. In his mind if it is too hard don't do it. This leaves me having to be careful of what I say in terms of not wanting to do this. When I am sure that this is what I want he is behind me one hundred and fifty percent. Unfortunately, I have period of weaknesses where I just try to wish it away or deny it. On the other hand there is my daughter and she has stated firmly that if this is what it takes to keep me here then there is no choice in her mind. God bless her!! There are so many arrangements to make and set up and I am working on my game plan every day something pops in my mind and I have decided to start a book to document everything I want to know as I am reading and learning. Presently on all kinds of little papers all around my computer ...this weekend my goal is to get a bit organized in that matter gather all the little pieces and put them together in question form. I have got some really great ideas and information from some connections made on this site and I am very grateful...but I still need know if there is Canadian link to this site as proceedures may be a bit different here. What concerned me a little was that my pharmacist has had no experience dealing with this surgery but is more than willing to work with me in every way he can and I am sure doing his own research as well.
Thanks again
Dianne
PS Day three smoke free

Dianne, I smoked for at least 50 years and have not touched a cigarette for over 5 months or since I had surgery for implants the end of Feb. If I can do it, I'm sure you can walk away from them too. I even smell better . LOL and so does my house.

Thanks for the encouragement it is a hard battle I myself 35 years of smoking (MY GOD am I that old already)LOL

Everyone around me is very supportive as well. Unfortunately everyone else in the house smokes. They all smoke outside now. Hardest thing for me is socializing and now everyone goes outside to smoke and then sit out and socialize and me have to be anti social. No longer the social butterfly...that's ok I spend most of my time trying learn and organize. one of them is hell bent on quitting with me. He is supported by his work they are going to pay him to go to the dr to get perscription ...pay for zyban and give him a bonus when he quits...talk about spoiled...and me I am resorting to the patch a lot of people don't believe in it say to go cold turkey but with everything going on stress levels I don't wanna take any chances!!!

BTW are there any other diabetics out there insulin dependant who
have gone through this battle? Not sure how this is going to be incorporated into the recovery

Dianne

Dianne - Congrats on quitting smoking, even it is for just a few days - I hope you can keep it up. I quit smoking 13 years ago - and still got oral cancer. Anyway - I help give back by advocacy - I am chairperson of the GREAT AMERICAN SMOKE OUT at my work. I tell my students, I still have part of my tongue because I still have something important to say. I show them my scar and urge them to quit (or never start ... thats the key!)CMB

Wow that sounds like a wonderful way to look at your situation cause you have something important to say...That definately hits home for me!!! I hope many do listen!!! Both my children smoke and I tried to stop it but was unsuccessful. My son is now wants to quit cause he doesn't want cancer. I will help him in any way I can. He is still young although it is never easy to quit. My daughter right now needs it but I have a funty feeling that once my treatments start she may change her mind.

Keep up the great work!!!

Dianne:

You can do it!!!!! If you have your mind made up to quit then you will. It sure isnt an easy thing to do especially if you are surrounded by smokers. Its a matter of changing your whole routine.

I was a smoker too and quit last year cold turkey. I figured that its either going to be the cigarettes or me and Im not ready to die yet. I wasnt able to quit immediately when I was first diagnosed in June, but I did quit about a month after. It took me a while to get over the initial shock of having cancer to be able to think clearly about quitting. I will never smoke again, my children do not smoke but all my work friends do.

Have faith, you can do this

Congratulations on quitting!!! I have my mind set I do miss it and it smells sweet but hey only three days old as a non smoker

Thanks for your support

Dianne

Dianne:

I think years ago I had read some info that after no smoking for 72 hours then its all in your head. The nicotine is out of your system. Im not sure if that really is correct but it did help me to quit. After 3 days I kept tellingmyself it was all in my head I wanted to smoke. Hope that helps alittle. I know its not easy but you can do it.

Thank you I am truly inspired by all the people who are encouraging me. This is really helpful as I am having quite the battle. Nite time and weekends are the worst and the fear of gaining weight. I at one time was up over 400 lbs and had a gastric bypass I am not necessarily thin but am half the size and that was one of the reasons I had refused to quit in the past now the war is on on so many levels.

Thanks again

Dianne

I stoped smoking 32 years ago, It was not easy, I had to stay away from anyone who smoked. when I wanted to smoke I had to get up and do something, anything to get my mind on something else. the 1st. two week where the hardest, But you can do it, If I can anyone can. I could smell better, food tasted better and I felt better, It was the best thing I ever did for myself. Get rid of all ash trays and smokes out of your home, so you have time to think about it on the way to the store. each day will get easier, but the want stays with you for a long time. Hope this is of some help to you. Good luck with it.

Dianne:

Dont worry about your weight. Thats one issue you can forget about for a while. Eat all your favorite foods now! It could be a while before you are able to eat normally again. Things might not taste like they should. Nutrition is a big factor in your healing from cancer. My nutritionist recommended I get 3000 calories per day while recovering from treatments.

Its been one year since I first started treatment and Im still down 65 pounds. I have about 2500-3000 calories per day and still dont gain weight. Everybody reacts differently to their treatments, but this is one thing most have in common, losing weight.

Hi Dianne,
Maybe I have missed something but looking through your post�s it looks like only surgery has been mentioned at this stage?
Just a little about my experience which seems similar to the one of August (Colleen) and maybe what you are looking at.
I did not understand what some of the terms were until around 1 year after my surgery when I discovered this site. Even now I am not 100% sure if what I write is correct as it is from what I remember experiencing and being told or have since learnt.
Not long ago I did get a copy of my pathology reports and brief notes that were written during my operation and that is a whole new language of its own
After a long operation I was in intensive care for 1 week and then another week on the ward. During the operation nodes were sent to pathology and tested and the results given to the surgeons during the operation. A little jaw bone was removed and the pathology on this took around 10 days to come back.
I was fed liquid and liquid food through a tube inserted in my nose down to my stomach. Maybe that is what they are referring to if it is surgery only at this stage.
Also had a tracheotomy (scar now easily hidden if I choose) and both tubes were removed at about the 1 week mark. I was also connected to other tubes as well including ones for body functions, pain medication and monitoring.
I also had the free flap as you can see from my signature.
BTW I only had around 3 weeks from diagnosis by biopsy to surgery. No other test�s were done as I went along with the urgency implied!!!
The time went quickly as I kept working and had the usual blood, X-Rays, ECG, urine tests plus organising finances and after hospital options.
Hope some of this helps and if you have any further questions please feel free to ask.
Wrote this a few hours ago but had it saved before my line dropped out. See there have been a few replies and as you can see am an X-Smoker who had smoked as long as you but not quite as long as Jim
Stopped a couple of days before op. and no way I could smoke for the 2 weeks in hospital. After that I as well and truly over it but like most addicts will not even try 1 as I have a feeling I know where that could lead. Coming up for 2 years now.
Cheers
Gabriele

thanks Wilma and Christine...anything does help!!!! as far as tasting food better from the biopsy I don't have much feeling or taste I am not sure what the oral surgeon actually removed on my tongue. But my sense of smell is really improving. It is kinda funny though people are so used to walking in the appartment with a lit smoke and then run to put it out. but they do still smell sweet. I can't wait till they smell disgusting...I cannot eat everything I would like at this point as I cannot wear my lower dentures and my mouth is still sensitive from the biopsy that was done by my oral surgeon. Still fairly soft foods or foods that melt in my mouth. I am awaiting the day I can eat a ceasar salad again with croutons and bacon bits or nuts walnuts or cashews and one of my weaknesses went to the movies the other week and could not have pop corn or didn't even try cause of the kernels. Anyway I still am enjoying a few sinful foods for a little bit yet chocolate cake cheese cake mmmmmmmm. I have been told to stay away from red meats is that a myth cause I am craving a hamburger? or Would it hurt to have a drink? at this point anyway? I don't need one but you never know right?!

Dianne,

You already show the courage and wisdom to defeat this cancer so don't let anyone stand in your way. Sure it's normal to say "why me" and "I don't want to be sick" and "I don't want to go thru this". We all did that and time will help getting over those feelings.

There are some Canadians that post on this site and hopefully they will reassure you that you will be treated professionally in Canada. We will be with you every step of the way and believe me having this site in your corner is priceless. Remember your doctors have the power to cure your cancer but you can go a long way in treating the mental aspects by yourself. Just don't let this cancer get the best of you mentally. I know you can do that.

Hi I was wondering what happened that you had to have so many surgeries concerning your free flap and is it normal to have to have so many surgeries. I am very concerned about all of it and of course the recoup stage. As yet they are pretty certain I will not need radiation but things can change I am finding with a drop of the hat....will continue later huge storm and gotta to get off pc....

I quit cold turkey for this OC and like Chritine, once in awhile I think about a cigarette but I wouldn't touch one if it cured this OC LOL. I feel better, smell better, my car feels much better, and my house agrees with the car. LOL You will beat this OC aand the nicotine habit.

[quote=darkeyedlady0] Hi I was wondering what happened that you had to have so many surgeries concerning your free flap and is it normal to have to have so many surgeries. I am very concerned about all of it and of course the recoup stage. As yet they are pretty certain I will not need radiation ......[/quote]
Dianne do not worry too much about that comment in my signature After all the reading I have done here I have not seen this before.
Basically the flap may have been a little too large and the first op. was debulking. The rest were a little more of the same and to fixed ragged edges between where the flap and tongue were joined. Some of this could have been caused by chewing (as I was told by the surgeon�s). Not convinced but never mind and as I said have not seen this elsewhere here..so maybe I am unique
Also each operation was day surgery and took around 1 hour or less but under a general nevertheless.
Hope this explains it and hope my signature and post have not caused more concern.
Again please feel free if you would like to know more.

Hi I am a natural worrier just my makeup also so very analytical so I wonder about everything it is truly a curse at times and at other times it has been a benefit. I am just still wondering if getting a flap done causes you much grief from what I am reading and understanding it is really delicate surgery. I am basically having the whole bottom of my mouth removed and reconstructed with wrist skin and a free flap. I am no stranger to work done in my mouth as I have had all my teeth removed ealier in life so have had experience with the messed up mouth but the doctor explained to me that the flap was so my tongue would be useable and not just flop around to one side. I am just curious about the healing process did how long before eating again did you have trouble eating and did you need much speech therapy? Gosh sorry to bombard you but things I have been thinking about

Thanks again for writing

Dianne

Dianne,

I had a free flap done on May 19 and was speaking clearly within a week and drinking by the time I went home 10 days after surgery. From what I can tell, part of what made the difference for me was the surgeon was able to preserve the tip of my tongue so I had very little trouble learning how to use it again. I've been told by many people that they can't tell I've even had surgery.

Wow that is good news and thanxs. That helps me a lot I am slowly thinking as information is sinking in that I can do this one step at a time feel like I am riding a unicycle and am still very shaky on the whole think and I know I won't know all the answers until I am in the moment. It seems it doesn't matter how prepared someone is you can never be prepared enough. I am just concerned cause I already live with chronic pain and sometimes this just seems to add to it. I am also concerned about the eating cause I am diabetic and the lows are very scary especially if I can't eat!! I won't keep you just wanted to say thanks....

Dianne

Hi again Dianne,
My return to what they call the new normal here took a little longer however now I am able to eat most things luckily and other than what sounds like a slight lisp my speech is fine. At least that is what others tell me. I did speech therapy a few times and found it helpful. Now I practice on my cockatiel (of the parrot family). I talk a lot but at 6 months old he/she has not started yet but at least understands most of what I say (like hello, shut up good boy etc.).
After the 2nd week I was eating things like thin porridge, custards and the like and would blend lots of different fruits in season to make smoothies.
It is a good idea to get a stick blender which is very cheap and easy to clean.
One of the things that helped pass the time when I got home other than watching TV was inventing different recipes that I was able to eat. You will find a whole lot of posts here where people have added their recipes. Let me know if you cannot find it and I will send the link. After around 1 month I was up to working from home for part of the day even though I was in contact via email even from the hospital on my Blackberry. Sorry but as you can see from my profile I am in IT and I did have this luxury available to me.
One thing I did do before my operation was buy a small children�s white board to write on and erase for communicating not only with friends and family but nursing staff and doctors. You mention you will have a tracheotomy as I did and this at least will allow you to communicate. Pen and paper will do just as well. Again..let me know if I can add more.
I am happy to give you a call and have a chat if you would like.
Gabriele

Well I guess I am well on my way armed with a lot of information and lots of questions for my doctor. There is still a lot of uncertainties mainly around whether or not I myself have the strength for this. I have gathered quite a bit of information but I am afraid I am a really big wuss. You would think living with all kinds of chronic pain arthritis,deteriorating disks,fibromyalgia, nerve damage, and neuropathy just to name a few off the top of my head) that I could handle this. I just have had enough of doctors and being treated badly by the medical profession now this. This is my worst nightmare me having to deal with needles and wires and pumps and drains and DOCTORS. I just can't seem to wrap my mind around it as that is why I haven't been to a doctor in years. They always blamed everything on my smoking or my weight. I am so tired of that already. I am no stranger to operations or hospitals but for some reason this particular surgery is really affecting me. I should not be so freaked out by it as I have had my teeth removed so the mouth part not used to but have experienced. I have had a gastric bypass which has given me experience with the tubes and such. I think it is about the trach that is making me nervous and the neck part. But still cannot get over this one even though I so many people before me have gone through it fine. I think just plain and simple have accepted this but am truly scared well scared enough to quit smoking.

I am having a bad day today with pain and wanting a smoke really bad but am fighting it with all my strength. I usually don't get much pain from the oc but lately the side of my neck and jaw seem to just ache and sharp pains in my ear. Not sure if they are real or just really bad mind tricks. anyway thanks for your reply and I just might take you up on that chat. I am still organizing my thoughts, information and questions.

Dianne