Tomorrow is the 1/2 way point and its all downhill from there. Baby steps and you will get there.

I feel so badly for all the pain you are having, but glad that they are now on top of it with weekly consultations. Do whatever you need to to get through this treatment.

Post often.

Your courage in fighting through this inspires and encourages us all.

Donna

Almost half way. You can do it!!

Perhaps you could use a cold gel pack (fridge/freezer). This might last a bit longer than a cloth.

M

Sone, this WAR can be won but it will not be easy as everyone has stated. Hang tuff for your family and the next few weeks will pass and then recovery begins!! Defeat this enemy and enjoy life. Semper-Fi Bob

I would like to preface this statement because I have not had radiation but the glossectomy sure does make it hard to eat, especially after the 4th one. This said, I have found some great high calorie foods that you just swallow. My last surgery I lived on lobster bisque soup from Wegmans. Not sure if everyone has a Wegmans, it's a grocery store with a lot of specialty items. Anyway...just a thought I wanted to share. I found I got really tired of the sweet Ensure so this change in flavor seemed like a steak.

Hump Day!! 17 down and 16 to go!!!!!!

You know, last week when I was at the end of my rope, I kept praying to God asking Him to show me the way. Then I found the pain specialist. Then I found this website. Then you all yelled at me. I guess I got my answer. Thank you. I'm really surprised how much your cheering me on is actually helping.

I went back to the pain management doctor today and got my pain meds increased. Yippee, more relief! The doctor told me that I don't have to worry about going back to that awful place of dire pain where I was last week, that I'm entitled to better pain management than that. I thought, that's just what someone on the website told me!

So, regarding the thrush, I'll just keep a close eye on things and request the Diflucan script the second I see evidence of it starting. Thanks for the info.

I'll try the gelpack on my cheek--it probably will last longer than the cold rag that I have to keep getting cold!

I'll ask the nutritionist about the Carnation Instant Breakfast very high calorie drink--it might help to have some on hand for days I can't get down 4 ensure pluses. I don't think I could get down lobster bisque, even at room temp, but I'll keep it in mind for recovery--it sounds good. I am sooooo tired of ensure!

What is this mouth stretching everyone is talking about?? I've never heard of such a thing.

Thanks,
Sone

Hi Sone,

It is so great to feel the different tone in your posts. I'm just so happy you found this site and even more happy you found a doctor to help you with the pain. It's easy to understand why you felt the way you did last week, the pain sounds like it was so awful.

You are on your way to the end of treatment and towards the healing and lobster bisque!! Then, when someone new comes to the site you will be there to offer support and help cheer them on. See how great it is?!?!

I am sincerly thrilled that you went back to treatment and are giving it all you got...good for you!!! By the way, I sent you a personal message. Did you get it? If you see a blinking envelope nexy to "my stuff" someone sent you one:) No worries about a reply, just wanted you to know.

So, tell us about your children. We like to share in each others happiness and fun things too.

Yeah!!! You are more than half way done. John kept a calendar on the refrigerator and crossed off each day, that helped. I'm so glad you found this website and went back to treatments. Treatment affects everyone differently and no one should have to suffer in pain. I'm glad that you have better pain management now. Just take each day as it comes. I'll keep you in my prayers. Wanda

Sone,

On the mouth stretching question...do you have a speech/swallow expert on your team? Sometimes the radiation can cause trismus...which will keep your mouth from opening. A healthy mouth opening should allow you to fit 4 fingers sideways into your mouth. If you can't do that, you will need to do exercises daily.

My husband was given an RX for the Therabite system and did very simple exercises with that. Other folks are given mouth exercises guidelines that do not require any special equipment.

I'm glad you are keeping up with your treatments...we are all so proud of you. From caregivers to patients, we can all relate to how hard it is to walk into the hospital day after day.

Keep on keeping on! We're happy to see you posting daily!!

The simplest solution for keeping trismus at bay is to use wooden tongue depressors from the drug store each day. While your mouth is opening normally (usually before treatment) stack a batch of these between your front teeth. I could hold 15. Then, every day through treatment, and for a couple of months afterwards, keep trying to put that number there. The stretching begins when you can't manage the original number, and you really have to stretch the muscle to do it, holding them in your mouth for at least 10 minutes after each (painful) stretch. If you do this, at the end of it all you should be able to keep your ability to open normally. I ended up at the finish line only able to put 12 in despite all the work, but there are people here who can only open their mouths 1/2 inch at the end of treatment..... and that is a serious problem.

When the muscle gets radiated scar tissue forms in it making the elasticity disappear. (scar tissue is not elastic). The trick is to keep micro tearing the scar tissue to prevent it from become intractable.

All this may be tough for some, since they just don't want to eat, do the exercises, or anything during treatment more than be sick and sleep. While all that is understandable given the inevitable depression that many of us go through, treatment is an active participation process to have the best end result. Participation in knowledge acquisition, asking the right questions, asking for/getting the right treatments and pain meds, and even simple jaw exercises and proper diet and hydration. It all takes effort and work, in addition to what the docs are doing.