Hello to all my fighting Oral Cancer soldiers, their Caregivers and to all the Amazing contributers that help the OCF stay alive. My name is Brandon and I was diagnosed with Stage III SCC of my R Lateral Tongue on 6/17/14. I have completed my Radial Free Flap/ Neck Dissection surgery on 8/11/14 along with surviving the harsh hitting Radiation/Chemo on 11/4/14. Many of you have heard of my story from my caregiving Sister Ashley (AK123), where would I be without her and all of your help? Lol well I decided to join this site to give you guys my insight of my journey and to ask a few more questions in 1st person (no more 3rd person haha :P)

I had a 10 hour surgery performed by a Comprehensive Cancer Center, along with a 10 day hospital day, that is just a blur to me now. I definitely panicked a lot more than I should have. I left the hospital on 8-20, and started my 33x rads, 2x cisplatin and 1x carboplatin on 9-15-14. After the 3rd week I had severe mucositis on my tongue and my inner cheeks/throat. I couldn't keep up with hydrating myself and proper nutrition as RADIATION was BRUTAL on me. I was forced to get a PEG tube on 10-21-14 and recently got it pulled on 1-9-15.

I'm eating a lot of foods by mouth, but having troubles with Hot, Spicy, and Sour foods. I also find myself swishing down dry foods like chips, bread, dry meats, pizza etc. with water as my Salivary Glands are toasted. I hope my Xerostomia gets a little better along with my Lymphedoma.

Thank you all for welcoming me to this very caring Big Family. I will be posting my questions on the General Board forum soon.
-Brandon

Hi Brandon, welcome to the family. It looks like you have already been through a lot, but it also looks like you have a pretty good attitude about it. Keep that up, it really will make a difference in your continued recovery.

I am a year plus into recovery. Even so, I still have some of the same problems you mentioned above. Spicy foods (but not so much hot or sour) I am a little more sensitive too. Some foods fall into a category of on some days they taste good, on other days they taste bad. Milk, either from a glass or from a bowl of cereal is one of those foods. Fried chicken is no where near as good tasting as before cancer and some days it tastes bad. In fact, chicken as a whole is disappointing; from the grill with barbecue sauce seems to be the only it tastes good. Where steak used to taste bad, it now tastes much better, hamburgers from the grill are the same way.

I still have the occasional problem with dry throat when eating. I have to keep water immediately available as I never know when I will need a sip to help swallowing. I swallow, but it won't go down. Small bites (well chewed) help, but not always. I've learned that if a bite of food doesn't go down I can just exhale hard a little and it returns that bite of food to my mouth. It sounds gross, but it's way better than possibly choking. Upon return to mouth I almost always determine that it was adequately chewed, so it must be dry throat caused. Add a sip of water and it goes down.

Since this problem isn't frequent, and since it only applies to the drier food types, I have not yet reached the point where I feel the need to add a sip of water to every swallow. Maybe for dry type foods a supplemental water sip needs to become the routine (maybe I just learned something new).

I have had it happen when I didn't have water immediately available. That's when you depend on the exhale method of returning it to your mouth. It would be easy to panic at that point out of fear and think you were possibly going to choke, but instead staying calm, a little forceful exhale and problem solved. Then you remember to go get that glass of water.

I've rambled on enough about swallowing.

Your recovery will be anything but linear. I thought it would just get a little better every day until all the recovery symptoms just disappeared. That just isn't the case. It's normal to have a few good weeks of noticeable improvement, then a week or two of them seemingly going the other way. But, over time, things do get better.

My dry sinuses aren't nearly as bad as they used to be. If you don't already have one, get yourself a sinus irrigator (NeilMed makes them, available at Walmart). Use the salt packets that come with them or make your own (much cheaper, 3 parts canning or pickling salt to 1 part baking soda). Sinus irrigation works great (helps when you have a cold too).

Enough already, welcome to the family.

Tony

Welcome to OCF, Brandon! Its great to have you here

Congrats on getting your feeding tube removed! That accomplishment shows you must be doing very well with your recovery.

Dry mouth is a problem many of OC patients have after rads. Its sure better than that thick gunky mucous phase! Many OC survivors become life long water bottle carrying club members after rads. This along with everything else can take a long time. A complete recovery can take a full 2 years. Most patients will notice continual slight improvements in their sense of taste and dry mouth up until about 2 years post rads. Being you are young, it will hopefully be an easier road than for someone older.

Best wishes!

Hi Brandon - So wonderful to see you here joining our OCF family! I've thought about you and your sister Ashley so often, and it is really gratifying to see what great progress you continue to make. You're right, radiation is BRUTAL! It was that way for my son, too. But you've come through the worst of it and and there will definitely be better days ahead. Come here often, ask any questions you like and there will always be someone to listen and care and share their experiences and knowledge with you. You did good, Brandon and so did your sister!

Good to hear from you Brandon. Sounds as if you are doing very well. We will all be here to cheer you on!

Thank you n74tg for teaching me the new 'hulk out the un-digested food that didn't get fully swallowed' method I will definitely have to try that, without panic of course! But now that you mention the dry sinuses problem, I am finally starting to notice it haha.. Ughh why'd you have to say something about that side effect that I didn't know I was diagnosed with until NOW! Lol it's probably all in my head, I'll learn to cope with it. You don't know how strong you are, until being strong is the only option. Attitude is KEY to beating your fight, thank you for the compliment and input.

Hello ChristineB, Yes having the PEG tube pulled was a nice turning point in my recovery process, and I hope all that are dealing with it will be able to obtain the same freedom as I. And I agree, I would rather have a desert mouth rather than the thick gunky mucous days haha, glad that came to a hault! I'm looking forward to any slight improvements that come my way. Thank you for the hopefully thoughts and warm welcomings.

And to Anne-Marie, you have helped my family out in more ways than you know. So I would like to tell you that we appreciate all your thoughts and words. My sister truly is one of a kind for all the information she has gathered for me. P.S. I would rather have the re-resection of the tongue with the reconstruction and neck dissection 3 times before I have to deal with Rads just ONCE. So to all that are worried about just the surgery, it's not as bad as you imagine 6 months out and I completely forgot about my 10 day hospital stay.