Noob with floor of mouth cancer

Had some kind of bug over the weekend.  Didn't want to eat or drink and semi-runny and felt dizzy every time I stood up.  Day before yesterday was the first day I was able to do full load of feed and water.  Started adding solid food in which made me feel a lot better.  One over easy egg and a serving of malt o meal yesterday and a sliver of a frittata this morning.  I can drink coffee and sip on iced tea all day now without too much saltiness.  Tiny tiny hints of taste here and there just enough to help me choke something down.

I have a WAG theory about formula vs solid.  Formula probably goes through me too quick to absorb all the nutrients.  Solid food takes longer to break down so stays in me longer, therefore more nutrients hence I feel better.  Makes sense to me.  Anyway, no matter how I feel, it would probably behoove me to GTHO this formula and eat real food ASAP.

So maybe I blend stuff and shotgun it if I feel tired or weak instead of reaching for the no muss no fuss syringe.  The syringe is still pretty danged handy for hydration though when I just can't face swallowing semi salty liquid.

Well, still hanging in there.  Trying to get off the feeding tube but still having a hard time eating.  I just have no enthusiasm because I can't taste it doesn't hardly seem worth it to struggle to eat.  But I suppose it is worth it to keep things moving through my mouth and get rid of the snail breath for a while.

I know I need to eat and drink more I keep getting dizzy and feeling like I'm going to pass out.  I just feel like there's no room in my belly at all.  I bet that feeling will go away once the tube is gone though.  Still thankful to have it because no matter how I try I just can't do enough by mouth.

But I'm doing a little bit better and I can taste a few little things even of it's only a few bites.

We had chicken chow mein tonight, potato soup yesterday, pancakes the day before and a couple frittatas last week.  At least it doesn't  hurt to chew and move things around in my mouth anymore.

I am still taking a little dab of opiate at night just to dry things up because I still have chokeophobia, still doing gabapentin for nerve pain only not nearly as much and added benadryl because I really really really don't want to choke.  These things are taken primarily at bedtime.

I am getting bored senseless but still don't have enough strength for my normal activities.  I was able to cook dinner tonight and I did dishes twice today!  May have to add some lightweight exercise back into my day to build up my strength.  My kids are having to do too much in my opinion!  I did drive the other day though for the first time in weeks because just chilling here at the house doing crosswords and watching METV.

Some spots on my gums still feel like sandpaper.  I imagine when my gums and tongue feel normal again there may be a surge in tasting ability.

I was 164 before I started rads and chemo.  Three weeks after I am down to 148.  I am about 5' 5" and probably don't need to be 185 anymore but right now probably shouldn't be losing any more weight.

Another thing that will probably help is to make sure I follow a schedule and get up no later than 8 am so I don't miss any meds or food.  I really hate trying to eat after six or seven.

wbcgaruss said:

ozy Don't

concentrate on the feeding tube just concentrate on taking care of yourself as per pain management, eating or tubing enough, or anything else to aid in your recovery or comfort.
Your feeding tube is your friend for now.
People are so anxious to get rid of them but if you just continue recovery it will go after a while.
I know I have been there twice and it is something you would rather not have.
I don't think but I don't know that having a feeding tube in would cause you to feel full as it's just another way for food to access your stomach, another pathway for food so to speak.
I remember having real bad bloating in my stomach which caused the same feeling and I felt it was the rads and chemo combination I got.
Hang in there and before you know it your tube will be gone.
The treatment causes a lot of problems with your digestive system and bowels also.

Take Care-God Bless-Russ

 

Thanks for talking me down Russ!  I just wanna be normal again but I guess that's never going to happen, is it?  Taking a short break from trying to eat by mouth only but still going to do it a few times a week just to dip my toe in the water and test taste capability.

Getting up at a decent hour is helping.  Not dizzy and feeling like I'm going to pass out anymore.

Had the busiest day since end of treatment ran errands, including some marketing for about half the day and can't nap so maybe energy is coming back now.  I want to do some light cleaning but don't want to overdo it(that's my story and I'm sticking to it!)

No idea what's for dinner.  I guess seeing eye kid will eat leftover chow mein and I'll have another isosource.  Planning on a big pasta bake for tomorrow and making hummus for my boy.

Still losing hair.  Don't know if it's leftover from rads/chemo or thyroid weakening but I've lost the usual band around the bottom of my neck and around half of what was left.  Not noticeable just thin and hanging there.  Would like to chop off dyed part and just go naturally gray but it's not long enough yet.  Maybe next year...

Weight today was 151.  If I can stay within a few pounds of 150 either way, up and down, I suppose it will be fine.

I didn't do anything by tube today.  Not even pills.  Frittata for brekkie, pasta bake for dinner and plenty of tea and coffee.  The quilt is finished too.  I'll wash and dry it tomorrow and eventually wrap it and mail it.  I didn't think I'd have a tube free day already.  Still can't taste a lot but glad to be tasting a little.