Noob with floor of mouth cancer

wbcgaruss

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).

I AM

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

wbcgaruss

ozymandible said:

All I can say is God is so

All I can say is God is so good.

Hey That Reminds Me

Of a song  https://www.youtube.com/watch?v=8TG8Bb-6t60

Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

I AM

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

All I can say is God is so

All I can say is God is so good.

ozymandible

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.

Dagney1924

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.

Thanks for your report

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.

wbcgaruss

Dagney1924 said:

Thanks for your report

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.

Dagney Glad

She inspired and helped you with all the info.
This forum helps in so many ways.
Also Dagney no matter what happens NEGU (Never Ever Give Up)

ozymandible

Dagney1924 said:

Thanks for your report

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.

You're very welcome.  I'm

You're very welcome.  I'm glad my postings are helping people!

At first, I wàs told I may not have to have chemo and radiation.  I was more afraid of chemo and radiation than the surgery I had!  Reading and posting here definitely got me through it aside from God.

Remember what Russ and the others always say: NEGU!!!!!! (Never Ever Give Up!)

I think I was in more pain before I had surgery than I was in chemo and radiation but radiation really scared me.

Hopefully we are both finally rid of the awful beast.  

ozymandible

Well, still hanging in there.

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

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

 

ozymandible

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

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.

LitlCJdoll

Weight Not low

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

LitlCJdoll

Randal at 6'2"

My Beau, Randal,  who passed away May 18th--at his long tall self of  6'2" went down to 152 pounds , and yes, that was underweight for him.  

So, if you are a woman, I do not see that 151 is a low weight at all.  

Randal took 6 cartons of Nutrin 1.5, per day... He did manage to get the weight back up for a while, but it made no difference in the end.

Litl doll

ozymandible

LitlCJdoll said:

Randal at 6'2"

My Beau, Randal,  who passed away May 18th--at his long tall self of  6'2" went down to 152 pounds , and yes, that was underweight for him.  

So, if you are a woman, I do not see that 151 is a low weight at all.  

Randal took 6 cartons of Nutrin 1.5, per day... He did manage to get the weight back up for a while, but it made no difference in the end.

Litl doll

No, 151 isn't a low weight. 

No, 151 isn't a low weight.  I have needed to lose weight for years.  Just didn't want to lose that much right now.  But I would likely be healthier if I didn't weigh so much. Less wear and tear on the joints and back and all.

I was 182 when this mess started back in January.

Does it bug you when you hear people say they wish they could lose weight?  It bugs me and I haven't even lost that much weight so I can imagine how annoying it would be for you.  Probably irritates you when I whine about wanting to be rid of my tube too.  

I am really hoping my flap or jaw doesn't get invaded and heaven forbid I get mets.  I get kind of scared when I read your stuff sometimes because we do have some similarities. Glad you're still around though!  I almost PM'd you.

Regarding bereavement-sometimes so hard to believe my husband is gone.  I keep going along here like Forrest Gump's mom.  ("He's on vacation!") and then something happens that really makes it hit home like someone will ask about him or something and I start crying.  I kind of had to postpone my grief because there was so much going on too.  He really had a hard way out of here.  In the hospital for a month and wound up getting septic shock from a lung infection that wouldn't go away.  The dr told us in the end his lungs hardened from the damage of having cancer too.  Really lousy deal.  Makes me hurt for him.  

Now that the flurry of activity is over-recovery from surgery, ironing out finances, arranging further treatment and recovering from that-things are down to a dull roar and it's really been hitting me hard lately in spite of some of the troubles we had.  I have a feeling I'm gonna be rekt for a while.

LitlCJdoll

ozymandible said:

No, 151 isn't a low weight. 

No, 151 isn't a low weight.  I have needed to lose weight for years.  Just didn't want to lose that much right now.  But I would likely be healthier if I didn't weigh so much. Less wear and tear on the joints and back and all.

I was 182 when this mess started back in January.

Does it bug you when you hear people say they wish they could lose weight?  It bugs me and I haven't even lost that much weight so I can imagine how annoying it would be for you.  Probably irritates you when I whine about wanting to be rid of my tube too.  

I am really hoping my flap or jaw doesn't get invaded and heaven forbid I get mets.  I get kind of scared when I read your stuff sometimes because we do have some similarities. Glad you're still around though!  I almost PM'd you.

Regarding bereavement-sometimes so hard to believe my husband is gone.  I keep going along here like Forrest Gump's mom.  ("He's on vacation!") and then something happens that really makes it hit home like someone will ask about him or something and I start crying.  I kind of had to postpone my grief because there was so much going on too.  He really had a hard way out of here.  In the hospital for a month and wound up getting septic shock from a lung infection that wouldn't go away.  The dr told us in the end his lungs hardened from the damage of having cancer too.  Really lousy deal.  Makes me hurt for him.  

Now that the flurry of activity is over-recovery from surgery, ironing out finances, arranging further treatment and recovering from that-things are down to a dull roar and it's really been hitting me hard lately in spite of some of the troubles we had.  I have a feeling I'm gonna be rekt for a while.

Not similar

No, we aren't similar.

I am glad you are able to keep swallowing and actually eat.

We are completely different because I have Not Eaten in 4 Years and 5 months now.

It was not my surgeries nor  my treatments which disabled my swallow. It was the damage done by the huge invasion of my Primary tumor. My swallowing was disabled by the tumor. Long before surgery .

I was in the Emergency Dept going into Shock ( I was Hypovolemic. ) Low blood volume, from Malnutrition so bad, and dehydration ( I stopped urinating). 

They could not even get down my throat to put in my G tube !!

So, they had to install my G tube by Laproscopic surgery. 5 Incisions in my abdomen, just to put in my G tube.  

My surgeon was out of town on surgical mission in Dominican Republic. ( I had begged him not to leave me, .... I knew I was about to crash). Well, I was admitted Twice before he got back. G tube, then had pneumonia.

they got me stable, even though I was 64 pounds, so I could maybe, maybe survive @8 hours of gruesome surgery ..

I was in ICU for a while. Blood transfusions. And a Chyle leak as complications ...etc.

Anyway, our stories and life are Different.

be very grateful you can eat because it's a big factor in health going forward.

Cheers.

Litl doll

ozymandible

I meant as far as having the

I meant as far as having the flap put in, jaw shaved and all that.  Mine was caught early, yes, but it has spread to lymph and jaw and in a hurry too.  I haven't had mine as as long as you have-little telling what time will bring but going to just try and hang in here one day at a time.

LitlCJdoll

ozymandible said:

I meant as far as having the

I meant as far as having the flap put in, jaw shaved and all that.  Mine was caught early, yes, but it has spread to lymph and jaw and in a hurry too.  I haven't had mine as as long as you have-little telling what time will bring but going to just try and hang in here one day at a time.

from a past Teacher

Words from my past Martial Arts master teacher::

" Worry less Take action more."

?

ozymandible

Very happy I am able to use

Very happy I am able to use my waterpik again.  Made a huge pasta bake for the kids and some hummus.  Can't taste it for long but the kids like it.  I can taste orange flavored stuff for a long time.  I put home canned  orange marmalade into my oatmeal with some ground up nuts, raisins and spices, flax seed and flaxseed oil and butter and cream.

What one of the others said about buffets might be the ticket- have enough little things around to kind of graze on couple bites here and there so when the taste goes away I can move on to something else.  Hard to get too many things prepped and made though it's just my daughter and I.

Slowly getting back into normal activities but careful not to overdo.  Ran an errand, did some laundry... Yesterday got a baby quilt, backing and batting pinned together but haven't started quilting it yet.  Need heap big energy to rassle it through a narrow sewing machine harp.

Planning more things to make but don't have enough energy yet to sew all day and make stuff.  I actually run around a lot when I do that, believe it lr not.  Picking out fabric, ironing it, cutting it, sewing together and quilting involves running all over the house because I have ironing/cutting in the kitchen, fabric in a bedroom and sewing machines in bedroom or living room.  I want to paper piece a log cabin throw for my son.

Time for Perry Mason.  Gotta run now!  ?

ozymandible

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.

ProustLover

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.

Great Progress!

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!  

wbcgaruss

ProustLover said:

Great Progress!

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!  

ProustLover I Agree

Her progress and energy through all this is beyond most of us on here.
ozy you have been pretty active the whole time and even now at the time right after treatment people are usually beat and tired.
But lo and behold you're not.
I know after treatment I had a period where I was just tired and if my rear hit a chair I would go to sleep.
ozy I think you can count yourself very blessed through this whole thing.
And you are even eating some-Amazing.
Take care-God Bless-Russ