Hello all...

Finally I found a place where I can settle my fears and ask others in the same situation for advice. I have a wonderful support system here at home but no one can quite understand what I am going through and it frustrates us all.

I am told by all doctors I have consulted with that my cancer is extremely rare. In july 07 had enlarged lymph node removed from right side of neck found to be a low grade mucoepidermoid carcimona. PET SCAN in Oct 07 revealed no cancer anywhere in body. My thorough surgeon eventually found the primary source coming from base of tongue. Dec 11, 07 had surgery to remove mass from base of tongue, also modified neck dissection to remove lymph nodes from area where original cancer found. 1 lymph node found to contain tiny amt of cancer. Unfortunately they needed to split my jaw to get to the tongue area, and they also placed a trache in. Before I was released from hospital they placed a g-peg in stomach and removed trache. Fianlly passed swallow test on jan 10 so now I am eating small amts of soft foods. Can't chew anything because of the jaw break which has a long way to go to heal.

I am very frustrated these days because to me the healing period seems to be taking so long. Tomorrow i am 6 wks past surgery and my neck is still swollen and hard. This week I actually developed an infection in the neck and had to go on antibiotics which actually have eased some of the swelling. Which I was greatful for. I have been able to stop all pain meds but do have trouble sleeping at nite. Even Tylenol PM hasn't helped me get too much sleep. I am just so uncomfortable and being a side sleeper doesn't help.

I am meeting a radiation oncologist this week to prepare for treatments. I am very concerned that if I start radiation with my neck still swollen and hard that it will always stay that even after the treatments are done. Also I have very sensitive skin and am fearful that the side effect of the RT will be difficult to get thru and will be very painful.

If anyone has been or is in the same situation as me I would greatly appreciate any advice. I am not a patient person but I am slowly learning that patience plays a large role in beating this disease.

Christine D,
Welcome to the site!!
You have found the right place to seek information, ask questions and vent if you need to. The people on this site are caring and compassionate and will listen and try to help you whenever they can.
The fact that you are starting to eat is great. It is a long road but from what I read in your post you are progressing well with your recovery so far. Try not to get frustrated and don't expect too much too soon with regard to eating. If you haven't already done so, ask to speak with the hospital's dietician and/or nutritionist. They should be able to help you and offer many food suggestions and preparation methods to help you out.
You may also want to talk to your doctors about a better sleep aid than Tylenol Pm and possibly a muscle relaxant to make you more comfortable when you sleep.
You should mention your concerns about radiation to the RO. It may benefit you to start a Journal where you write down your questions, concerns, and feelings. Bring it with you to your appointments so you can look at it and not forget to ask your doctors any questions. I'm sure your doctors are used to this and will certainly take the time to answer all your concerns.
I hope all continues to go well for you.
Feel free to PM or e-mail me directly if you wish.
My thoughts and prayers are with you.
Cheers,

Mike

One thing I have learned the past few months is to keep frustration at bay. Listen to Dr Mike,, he knows quite a bit about what you are going thru.

Christine,
Hi, and Welcome! I only found this site Saturday nite, the 19th. If only I had found it earlier. I had surgery last August, followed by 6wks radiation beginning Sept. 10 thru Oct. 19... so I'm only about 3 mos. post rad. I've just begun to take soups and things myself, but it has seemed like forever. If you're even half as excited as I was to find this site, I know where you are coming from. Lots of good info and excellent input here... lots of sincere, caring people... and I've only been on here for about two days. Frustration and impatience have been two of my most prevalent weaknesses as well. Impatience makes us want more, and that desire for more causes frustration and more frustration when things don't work the way we expected. Be patient, take it one hour at the time if necessary, but above all, remember there are people out there who know and understand what you are going through. You are not in this alone. Take care, Godspeed, and for heaven's sake... keep in touch!
John

Christine,

I was able to avoid surgery but like everyone that undergoes radiation Tx, I had eating issues. One thing that I found that worked for me was Carnation Instant Breakfast VHC. It has 560 nutritionally balanced calories in a small 8 oz can so you get a lot of bang for the swallow. You can't buy it OVC but must order it through a pharmacy dept like Walgreen's or CVS. It only costs about $31 a case or $1.30 a can.

This site will become your very best friend and it will be a tremendous aid to you in the upcoming treatment and recovery if required. Don't hesitate to ask or share anything.

thank you all for the advice. It's a big help to know that there are others out there who have also suffered through this. i am open to any advice/experience that you all can offer. this is my first experience in the cancer world. I've had acquaintances who have been diagnosed but fortunately no one close to me. SO it looks like I'm it. So if you could all forgive my ignorance at times i think i'll be able to muddle through this. thanks again and I will check in again after my 1st meeting with my rad oncologist on thurs.