what to do prior to starting treatment

Welcome to the group and I'm sorry you need to be here. Mine was SSC just above my vocal cords [Supraglottic ] ended up being T3;N0;M0 and total laryngectomy and neck dissesion on both sides, 86 glands total. I didn't have radiation or chemo but others will answer those questions you might have. I agree with everything Kt said and I would write my questions down and hand it to the doctor. He wrote the answers down and gave it back. The first time I had questions he said something that just through me and I went blank. So I write them down.

I would recomend getting a dog cliker at petsmart for about $2.00 so if you can't talk you can get the nurses attention, it works great. Also I used a Dry Board to write on and it is the best to use as it is not expencive and you can write and erase. Now for around $50. there is what is called a Boggy-Board to write on and you get it from amazon or some Borders have them as well. You write and when done you push the button and it is all errased so you can write again.

This can be a very rough road to go down but many have been down befor and do know how you feel and understand. Will add you to my prayer list and we're hear for support. You will get through this.

Bill  2013

Hi and welcome you really have come to right place.As was said before I also had about half of my tounge removed and some nodes also.During surgery they removed all my teeth as my doctor was afraid the radition would destroy them anyway plus medical will help dentures.I didn't gp though chemo but this trail drug.If it worked great if not no harm.Was suppose to highlight anything they didn't get and let the radation zap it.I was just starting to eat alittle but mainly got into power drinks before hand and during my treatments.That lasted around 6 weeks everyday except the weekend.My doctor sent me to a speach and swallowing specialist which worked out great for me.My swolowing has gotten better but still have to chop up alot of the food like meat or the harder veggies and fruit.I guess basically I stay with the comfort food.I did have a peg tube in which I used during the treatment as it was easier to use.And remeber to swallow swallow swallow.Keep those muscles working as much as you can.I also seen a massage person who helped me getting the fluids moving arounf throat.It is very doable but don't get down on yourself this is very new and have to re learn some things along the way.I go at the end of the month to have some bone implanted into my jaw to amke it stronger then in 3 months go back in and will have implants put into the bottoms and dentures on top.Since my tounge is tied down now and don't quite have the movement it once did they are going to make the plate along top of my mouth thicker which will help in swallow alittle solid food and also my speach.Be sure to ask them anything on your mind to learn

Hi CeeCee,

welcome to a place you rather not be! As you can see, there are some great folks here to support you. Come anytime you need to bent, ask questions, deal with emotions, etc.

I agree with what everyone has said. Try to have someone come to you to at least the major appointments. You may not remeber/may feel bad/overwhelmed/etc. so it would be very helpful to have someone with you.

Folks have said to let others help you. I didn't know how to do this until mid treatment for my husband. People would say "let me know if there is anythign I can do to help". It just seemed so broad a statement that I would say okay and that was that. Later on I learned to have a list ready of specific things folks could do for me: cook a meal, help taking Dima to the treatments, babysitting, mow the lawn, etc. Don't feel shy about telling them specifically what you want/need. 

Are you going to continue working? If you are, there might get a point where you will not be able to (too tired, pain issues, etc.). I hope you have a very supportive boss/company. Have a conversation up front about your tentative plan. My husband worked until he could not anymore, came back for a month, and was gone for several months before finally returning full time this April. We were blessed with an amazingly supportive employer. I know it made Dima feel better creating the plan with his boss about his schedule.

I'll be praying for you!

Carolinagal4 said:

I am so thankful to have

I am so thankful to have found this place as I can tell that the resouces (all of you wonderful people) will be a lifesaver!  As an update to my earlier post, I have now had my appointment with the surgeon and I am a good surgical candidate for a hemi-glossectomy with tongue flap from forearm, along with neck dissection.  Radiation will follow and won't know about chemo until pathology comes back after surgery.

I have been reading the superthread and looking at old posts on this site and just trying to absorb all of the info.  In terms of working, I do plan to work up until the surgery.  My company will allow the 3 months off (as required by law) but I am unsure about additional time.  I know there is the possibility that I may be able to work in some capacity during the recovery time after surgery and before radiation--I am just worried about talking as I do a lot of talking in my job.  I am wondering if returning to work for a few weeks during this time might buy me more time (that they would hold my job) after the radiation.  Does anyone have any feedback on whether returning to work a few weeks after surgery (but before radiation) worked out for them and any comments on speaking ability during this time?

 

glad you are a good candidate for the surgery!

Don't know about the recovery time for the surgery. Dima had induction chemo and started radiation (with more chemo almost a month later). He went back to work 3 weeks after induction chemo and worked until the end of week 4 of radiation. Up front the rad onc had told us that most people do okay until week 3 or 4 before all the side effects accumulate. He really wanted to go back to work so that he would have more FML for the last part of the treatment and because it just made him feel good/normal to be back at work. 

hello ceecee and welcome aboard a ship you didnt want on but found there are many very good people aflote here as we all try to help one another first thing first get someone to hepl with child as it will be hard on them as well i had a 12yr old when i was first di and he took it bad was a straight a student down to ds before anyone at school noticed so give the right people a heads up with whats going on and when someone wants to help take it even if you think you dont need it you will find that if you didnt you wish that you have again welcome aboard and if you need anything from any of the wonderful people here just shoot this is a great site with great people wishing you well and you and child are in my prayers paul 

Carolinagal4 said:

How much to tell child

I am worried how my 11 year old will take the news--I haven't told her yet (but plan to do so soon). I want her to know enough about what is happening to feel included without necessarily feeling scared--not sure if that is possible or not. 

 

There must be something online to help with telling your child.  My grandsons were 5 when I had to have my eye removed.  We talked about bad cells in our body called cancer.  They both dealt with it differently (just like my first surgery when they were  2 1/2).  One had no problem looking and would ask questions that mordified their parents (is your eye going to grow back?).  The other would call down the hall that he wass coming to see me and at the door he would say, Grandma, do that (He held his hand up at his eye)  It was still to early for me to patch and he couldn't look at it and I understood.  I would rather they ask questions as we go along rather than think that we don't talk about it.  I just paint my lense with nail polish now and if you are on my side you can see that there is something different.  2nd grandson will say he likes my patch better.  You will have to go with how she handles the news and be ready to talk about what will be going on.  11 is old enough to read and write your notes when you first come home.  She needs to be prepared but as you talk to her you will see if she is following or just lost.  I am sure as the time progresses that she will have more questions.  I will look for the book that we used to start our conversation.  Former teacher, there is a story book for everything!

Carolinagal4 said:

I am so thankful to have

I am so thankful to have found this place as I can tell that the resouces (all of you wonderful people) will be a lifesaver!  As an update to my earlier post, I have now had my appointment with the surgeon and I am a good surgical candidate for a hemi-glossectomy with tongue flap from forearm, along with neck dissection.  Radiation will follow and won't know about chemo until pathology comes back after surgery.

I have been reading the superthread and looking at old posts on this site and just trying to absorb all of the info.  In terms of working, I do plan to work up until the surgery.  My company will allow the 3 months off (as required by law) but I am unsure about additional time.  I know there is the possibility that I may be able to work in some capacity during the recovery time after surgery and before radiation--I am just worried about talking as I do a lot of talking in my job.  I am wondering if returning to work for a few weeks during this time might buy me more time (that they would hold my job) after the radiation.  Does anyone have any feedback on whether returning to work a few weeks after surgery (but before radiation) worked out for them and any comments on speaking ability during this time?

 

It really depends on your job, and how you feel...

I mainly do computer work, I was also able to work from home connecting to my work computers.. So for me working from home was easy. I had few side effects most of the time, amd my office was liberal with me as far as non-standard working hours.

John

Telling your children is hard no matter what the age. As with any topic, it is important that your daughter gets accurate information. Eleven year old girls are social and dramatic  so she will also need to be able to share facts to correct any misinformation her friends tell her. As KTeacher said, books are a great idea. Check with your cancer center social worker and local librarian or bookstore for suggestions. As a teacher myself, I recommend letting your daughter's school know about your situation. Her teacher can be alert to any difficulties your daughter might experience. One thing I told my children is  that unlike years ago, cancer does not mean you will die. Therapy today is still difficult to get through, but it is more successful and cured people are everywhere. 

Welcome to our little corner of the world. I had stage 4 base of tongue so they removed part of my tongue, epiglottis, a few lymph nodes, and my uvula. I did 30 radiation treatments which started 2 months after the surgery. I had a full neck dissection so the lack of mobility in my neck prevented me from driving for a period of time. I was able to work from home and because I am a V.P. for the greatest union in the world FMLA for as long as I needed wasn’t a problem.  Depending on the time frame from surgery to radiation you may be able to get some work time in between the two.  I say this because of the driving issue but if you can use public transportation or a co-worker can help out, this will not be an issue. Talking was a problem for me so I always had a pad and pen. Another guy from the union did my talking and leg work while I worked at home on the computer.   Once you start radiation your time at work may go downhill but keep in mind you can take FMLA in partial days which will extend the time.  Also, we all react to radiation treatment differently meaning , issues for some folks never come about for others.  

I would have a heart to heart with your daughter ASAP, more than likely she will have many questions leading up to the start of treatment and communication will play a big part on her adjusting.

I am a 5 year survivor and was recently told I am officially cured. I am a true believer in positive thinking, and acquiring the mindset that you can beat cancer. Many on here use other terms for cancer, I prefer to call it what it is using no camouflage but that’s just me. I have told many in this room and out on the street…………If I can do it anybody can do it.  

There are many fine people on this site with hearts of gold who can help you throughout your battle.  Don’t be afraid to ask questions, this room is filled with experience.  I don't always have the time I would like to monitor this site but I will check in with hopes in seeing your positive posts.

      Jeff