Noob with floor of mouth cancer

ozymandible said:

Well the cherry danish was a

Well the cherry danish was a boom for the seeing eye kid but a bust for me(tasted like cardboard).

Surprised everything doesn't taste like cardboard at this point in your recovery.
If you can have any varying tastes you are lucky.
I remember the cardboard taste and forcing food down just to maintain.
Good News Is It Only Gets Better From Here.
Take Care-God Bless-Russ

ozymandible said:

Had some kind of bug over the

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.

I really appreciate you reporting on your journey. I only had surgery,  same cancer as yours,  but stage 0 .

to 1. I've been scared to death if it comes back about radiation and reading your diary helped. I also had problems 

With my trach in hospital, I didn’t need it but they refused to take it out, and the nurses didn't clean it, not all the nurses,

But enough. I had emergency crew up there a few times because I was coughing up blood, and it was because I couldn't breathe.

Anyway this isn't about me, but I want to thank you. Up until now I seriously thought if the cancer returned I'd rather die from it.

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

The weight is not low.

If you are a female, and I don't know your age but I put in 55---- you are actually considered overweight at 151, given your Height.  Go to a Body Mass Calculator. There are ones at WebMD, for instance.

It said your Ideal healthy weight is 111- 148 pounds.  So, you are at a good weight, it seems, esp. Post treatment.

WebMD would not let me enter my weight -  it required me to start at #80 for my height.  ( that's funny. I've not seen 80 pounds for years. )

Other sites let me enter it, --- tonight I am 71.8 pounds.

Oh god, I thought my tablet was going to blow up!!! It said I am dangerously underweight and that I need immediately medical intervention. Yeah, like this feeding pump I'm hooked up to?

In June, I went down to 68.8 when I got out of the hospital. ( my Low, since my cancer in 2017, was 64 pounds.  Is that death knocking?  I was sleeping on a Simmons beauty rest mattress with Pillow top, and I could not get comfortable because I had Pressure points all over. Hospital made me wear a Sacral Pad, because developing skin breakdown..)

I now have a hospital bed in my bedroom, and I bought a mattress topper for it.

In my June Admission for Bilateral pneumonia, my Nutritionist walked in my hospital room, came to my bed and stuck her index fingers into my TEMPLES.   ( she knows me from years of admissions). The Temporal Wasting that's seen, is directly reflective of the whole body wasting. Its a common test, which Nutritionists do) My Temples are very Concave. Very... Orbits ( eye sockets) then my body.  I am Way Too thin.  I have Cachexia.  They call it Severe Protein- Calorie Malnutrition .  That's the diagnostic ICD code.

But why?  I'm on the feeding pump, right?

Its from multiple reasons. Most recently this permanent lung damage and then Double pneumonia, both lungs, #6 pneumonia. Trouble breathing increases my metabolism further.

If your weight is 151, that's good. The calculators say your weight can go to 111, and you will still he in normal zone. At 151 your BMI # was a 25.8. That's considered overweight.  I'm not judging, I'm just reporting from the Calculators.  So, dont worry !!

Mine BMI  is 14.6... Wednesday night I have to completely Fast for a test Thursday.  It will be fine.  I'm used to it.

You are doing really well it seems, to be that hardy.   Be patient going forward..  You are doing really Well.

Litl doll

ozymandible said:

I didn't do anything by tube

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.

This is all good news.  Just hearing about your schedule tires me out...and I'm only the caregiver!   Taking the time and effort to prepare "real" food and to consume it (however you can) surely is wise.  Our meals are nutritious but dull...we have a combined total of zero talent or interest in the kitchen.  Your story inspires me to try harder!  Good luck, and keep on cooking!