Hi, I'm new to this forum so please bear with me. I had my hard palette removed due to squamous (?) cell cancer and was told I had to have radiation. I went through 2 weeks of radiation and wanted to quit I felt so awful. My surgeon forced me to continue (after a week off to rest). I went thru another week of radiation and now told my radiation oncologist I can't continue with this treatment. He pretty much repeated what the surgeon said "You may wind up getting a new mass and we won't be able to treat it." He has now told me to take this week off (again) and call him Monday if I decided either way....I am at a point where I'm not sleeping at night from fear of being trapped on that table. I suffer with vertigo and getting onto the table and off of it is a nightmare, not to mention the mask that hurts it's so tight and being locked to the table is terrifying to me. Am I just being a baby about all this, be honest. I can no longer eat, everything has a horrible taste, my face is burned and hurts/itches, my stomach is a mess from not eating and taking meds.,I have no saliva and I cough, choke and retch all day long. Does anyone know if 15 treatments is enough? The doctor wants me back for another 11 treatments and I dread it. Thanks for your help.

Hi Joan, You have found the best place for support to get you through those 11 treatments. And, yes, you need to complete them. There are standards of care for treatments which is most likely why your doctor is being persistent. He wants you to have the best opportunity to be cancer free. Unfortunately, radiation treatment is the only thing that kills SC oral cancer.

I am sorry you are suffering and that the treatments are difficult for you to get through. It is an awful process, to be sure. But, sometimes it helps to remember that radiation will do an excellent job in ridding your body of cancer. And, please keep in mind that the treatments WILL end. You will recover. You will have a life. I can't say the same about it if you don't go through treatment.

You are on a marathon of sorts. It is a difficult road, but you won't be on it for very long. If you put your mind to it and gather as much support and assistance you can find to handle the treatments, you will reach the finish line. And, as with any other contest, you can't win if you don't get in the race!

Do you have a feeding tube? If you don't, you might want to consider one. It will help you feel better to keep well nourished and hydrated. Many people on this forum have used a feeding tube. It has helped them get through treatment. It isn't a horrible procedure and can make your life much more pleasant while you are going through treatment.

Perhaps there's something your doctor can do to alleviate your anxiety. Please try to let your mind wander to some other place while you are on the table. Sometimes visualizing something pleasant and concentrating on it can help you tame your fears.

Please remember that you are fortunate to be able to have treatment that can save your life. Some people are not as lucky. It's a tough thing to endure. But, think of it as an accomplishment. You are tougher and stronger than you can imagine. You can do it. And, you'll have people here, on the OCF forum, to help you whenever you need it.

Keeping you in my thoughts and prayers,

Sandy

Joan, I can only agree with what Sandy has said. Radiation treatments are awful; I totally agree, but you can and must get through them. I am the biggest coward in the world, and I got through over 35 treatments, plus surgery, plus three bouts of chemo. I know lying on that table is horrible, and you feel so helpless being strapped down with the mask, but as Sandy said, it is killing the cancer. I also had a feeding tube, and I hated it, but was glad that I had it. Please, please, please complete your treatments. I certainly don't think you are being a baby; we have all had those feelings, but I am two years out of treatment and just had another clear scan. Come here as often as you want, there are some terrific people here that will give you great advice and support.

P.S. When I was on the table I listened to music (they let me bring my own CDs) and I used to count the number sof songs, to figure how much time I left on the table.

Hi Joan and welcome. 6 weeks from now when youve completed your treatment you will be able to come back here and offer advice to another newbie. Please finish treatment. It's highly unpleasant - I did 33 plus chemo. Yes it's painful, yes it's uncomfortable but it can also cure you. I too had a sore mouth (though i was blessed that it wasn't as bad as some people) I had the drool, the complete lack of taste - etc...
Try using cream repeatedly on your skin - diligence will pay off - find one that works... And put a little on in the morning, and more on right after treatment, later in the day and right before bed. A water pik with lukewarm water and on the very lowest setting will help you feel a little fresher and get rid of the the guck in your mouth. I also slept with a humidifier nearby, when it came time to eat I would take a pain med - use some magic mouthwash and then chug an ensure (this was towards the end as I was okay for pain up until week 6). It was quick and kept me hydrated and nourished. Prepare and carry around a bottle of flat Luke warm club soda you can rinse and swallow or the recommended baking soda you can swish and spit do this frequently!! You will get rough this - and zengalib is right, maybe ask for anti anxiety meds, take one 30 minutes before treatment. Hen go in, close your yes and tell them to crank the music and go somewhere else mentally - I practic yoga so I said mantras and treated it like a shavasna (meditation) good luck you can do this please persevere. Good luck - and no you're not a wimp - everyone handles this stuff differently. Hugs!

Thank you and God bless you all for the very good advice. I do take an anti-anxiety medication, guess I'll have to up the dosage. All of you, my family members and friends have convince me I really have no choice and must continue on this road to recovery. Many thanks again

Welcome to OCF, Joan! I know its horrible going thru radiation. Ive done it too. I wanted to quit. I even tried to quit but my nurse wouldnt let me. My son said to me "You are going if I have to carry you in there, so either get dressed or you are going in your pajamas". He was only 17 at the time. Im happy to see others have welcomed you and reinforced the fact that the best chance to beat this is to finish the treatments.

You have found a terrific resource for info and guidance. When you need someone to lean on we are always here. Hang in there we will help get you thru this!

I want to clarify and expand some info about using cream on your skin prior to getting radiation treatments. Cheryl is correct about using a good cream to help soothe your skin. There are many over the counter ones available and also some prescription creams that will work even better. When putting cream on, always pat it on. Never rub it in. Apply it several times per day, but NEVER before going to a radiation treatment. It can cause problems if used immediately before having a treatment. I would keep the cream in my purse and pat some on when I finished my treatment. I would reapply it a few more times. After showering, pat your neck and face dry and apply another coat of the cream. Allow the cream to soak in by itself. If you forget and apply creams before your radiation treatment, take a warm wet washcloth and very gently wipe it off before your treatment.

Best wishes with your successful upcoming completion!

Hi Joan. Most of us know what you are going through. I too had 35 rad tx with weekly chemo and it was horrible but I go through and have been cancer free for 3 1/2 years now. My taste and ability to swallow took a long time but it's all back very close to normal now. Go ahead and up your dose of Valium or whatever you're taking for anxiety. I had some issues with claustrophobia and Valium was the only way I got through those tx. You'll get through this and on the road to recovery, may seem like a long time but eventually it will all just be a memory.

Good luck, and God Bless you, Joan. We are all here rooting for you. I am a big wuss and I got through it, and you can, too. (sometimes I can't believe it myself). Please keep us posted on your progress.

Good luck and best wishes. Rads are tough but not taking the treatment ends in the worse possilbe consequences for you and your family. Hang in there and it will soon be over!! Semper-Fi Bob

My MO and RO stated that people not completing their treatment protocol have poor survival rates.

Others have posted great suggestions on how to get through it. I took anti-anxiety meds all through out Tx and that helped immensely - I slept through many of my treatments.

You have to soldier on if you want to survive this.

Joan

You asked [quote]Am I just being a baby about all this, be honest[/quote] I don't sugar coat it but the answer is NO.
However, what you will be if you quit getting radiation TX is a suicide victim. Harsh words, yes, but you will be killing yourself if you stop now.
We of all people know just how hard radiation is and there were times when I wished I would die of a heart attack in my sleep because the pain was so bad, but in the end, life is worth it.
keep the Faith
Charm

Joan - I am so glad you decided to continue with your treatments. I know everyone who has been where you are knows and understands what you are going through. Please stay with us and check back here often - many times every day if you need to. When my son was going through the worst of his Rad TX, this wonderful place is what helped both of us to find the courage, information and help he needed to survive and become cancer free! Do let us know what is happening with you.

Hi Joan. I'll keep it brief.

With my treatment, I was wearing a head restraint that was attached to a table. I had my own fears, which I won't list.

For pain, I asked them to impove the pain control. It is important to stay ahead of this. Don't try to be tough. Get the pain control you need.

For fear, one thing that helped is they played music for me during the treatment. I focused on the music. I actually held onto the the music as a source of comfort.

I had a feeding tube through the wall of my stomach, so eating was not a problem.

This is the kind of skin cream they had me use on the areas that were being hit with radiation. http://uddercream.com/

I also used a very gentle soap to wash. I don't remember which one it was.

Once again I will thank all of you that responded, I truly appreciate your help. Udder cream, going on the hunt right after I get back from treatment today