Funny little things we have learned to do...
The question is:
What "funny little thing" have you learned or changed as a result of H&N cancer and treatment?
Puma's story:
I have gotten a lesson in what the new normal means. My dad is very good at doing any type of home improvement. Last weekend I bought new porch lights for my house. Well, when we went to put of the light my dad could not reach it with out standing on a ladder. He is still not strong enough that we would let him do that. So guess you wired the new light, ME! My dad stood on the porch and gave me instruction and I did the work and by some mircle the light works.
We had such fun and he realized that he can still do all things things he did before with just some adjustments along the way.
I will be attempting more electrical work on Sunday, when we do the one on the front porch.
My new little normal:
I have always hugged Mark with my right arm up above his shoulder and my left arm down around his waist. We are not little people so I could always give him a big squeeze. Now, because of the neck disseection on the left side, I have to hug him with my right arm down and my left arm up and a little less umph! This has not been an easy adjustment to make, I flap my arms up and down a little until I figure which goes where, and hugs are a little less spontanious...but it will get there.
Kim
Comments
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My new norm
Mine is very similar to you and Mark's! After my neck dissection my left ear was left with this really odd numb, painful feeling in it. Carlos would always come behind me when I was doing stuff to nibble on my left ear. Now he catches himself and says "oops, which ones the good ear?" lol Also I no longer answer the phone on my left side.0 -
Hanging wet laundry on the line.
I still can't raise my right arm all the way up to hang laundry on the line. I reach up with my left, and then do a little hop that helps me boost my right arm up so I can pin the clothes.
Oh, yeah, and when I apply underarm deodorant, I walk the fingers of my right hand up the wall till my arm is raised enough to apply it. That might be TMI, sorry.
Deb0 -
funny
My family and I have been trying out many new recipes that are sugar free and contain anti-cancer foods since I was diagnosed. We have given all the foods names that sound horrible to others but really crack us up. Example: chemo cookies, cancer cake, nasopharyngeal noodles. It has helped take the horror out of saying or hearing the "c" word and all the other terms and phrases.0 -
sleeping
Well, for 13 years when we first went to bed we always laid on our right sides. He would spoon me from behind & I would hold on to his left arm. Now with his peg tube in place & a port in his left arm,we sleep on our left sides & I spoon him from behind & hold his right arm.
Kimberly0 -
Funny!Pam M said:Eating Out - We Allocate More Time
My family knows that when we go out to eat, they're there for the duration; we can't grab a quick bite for a meal. They also have phones to play on if they don't want to chat while they're waiting for me to finish eating.
I am an nightmare at the grocery store! Naviagating a shopping cart is a new challenge lol.
Bumping into wall's & corner's constantly. Plus the restaurant challenge. I try to view a copy of a menu online if possible. It saves me from taking forever to decide what to order. As far as eating, I can only seem to get down less than half of what I used to so I take home alot of doggy bag's!0 -
continuum
There are several little things I have learned to do differently:
Moisture. I sleep with a mug of water on my bed stand that is heated through the night. I awake through the night with dry mouth/throat so the warm water does a great job on the dryness/mucus. I also rinse it when I get up in the morning to loosen stuff.
Shaving. I don't yet grow hair below the jawline so shaving is easier. Also I have no feeling on the right side of my neck so that's a little strange.
Bathing/swimming/hot tub. I love a good bath but there are two issues with this. 1) cannot submerge the PEG, and 2) hot water makes the neuropathy worse. I was in my buddy's hot tub the other day and had to alternate between laying on either side. Not being able to submerge is a real drag.
Food/taste. Most folks here know I am an outlier (me and Sweetblood!) when it comes to eating. I can't swallow (or burp) BUT I can taste. The usual side effect is taste change. My taste is intact (seems to be enhanced). Which would you rather have: A - no taste but also no PEG; or
taste with PEG?
Spit cup/handkerchiefs. I never used these before by now they're my constant companions. One interesting aspect of this is that when I have a lot of disgusting mucus to offload and I'm with company the typical response to my apology ("I know this is disgusting") is usually "Please do not apologize, go right ahead". It's amazing how tolerant people can be in when the context is right.
I expect that some of these things will go away or change over time and that out lot is to learn to adapt to our new normal. It's hard, but we can do it. Never give up, never surrender.
Best,
Mick0 -
Mick, yours is worse.micktissue said:continuum
There are several little things I have learned to do differently:
Moisture. I sleep with a mug of water on my bed stand that is heated through the night. I awake through the night with dry mouth/throat so the warm water does a great job on the dryness/mucus. I also rinse it when I get up in the morning to loosen stuff.
Shaving. I don't yet grow hair below the jawline so shaving is easier. Also I have no feeling on the right side of my neck so that's a little strange.
Bathing/swimming/hot tub. I love a good bath but there are two issues with this. 1) cannot submerge the PEG, and 2) hot water makes the neuropathy worse. I was in my buddy's hot tub the other day and had to alternate between laying on either side. Not being able to submerge is a real drag.
Food/taste. Most folks here know I am an outlier (me and Sweetblood!) when it comes to eating. I can't swallow (or burp) BUT I can taste. The usual side effect is taste change. My taste is intact (seems to be enhanced). Which would you rather have: A - no taste but also no PEG; or taste with PEG?
Spit cup/handkerchiefs. I never used these before by now they're my constant companions. One interesting aspect of this is that when I have a lot of disgusting mucus to offload and I'm with company the typical response to my apology ("I know this is disgusting") is usually "Please do not apologize, go right ahead". It's amazing how tolerant people can be in when the context is right.
I expect that some of these things will go away or change over time and that out lot is to learn to adapt to our new normal. It's hard, but we can do it. Never give up, never surrender.
Best,
Mick
I've had it both ways. The not being able to taste is annoying but I see it getting better a centimeter at a time. It's so weird cause I can smell fine. It's a little frustrating to smell something good only to put it in my mouth and have it taste like salty wall paper paste.
I've got so many things I do different Im not sure I could list them all! I drive differently, I hold the steering wheel different than I used to.
Food prep is waaay different than it used to be. More time consuming to prep and cook differently. Veggies minced in my little chopper. Adapting recipes to eat without meat cause I can't swallow it yet. I've learned to 'swallow' without really swallowing anything. Keeping what precious little saliva I have in my mouth there. I dress differently. Dressing a new body. Both because I'm thirty pounds lighter and avoiding collars that bother my neck dissection scar.
I use double sided tape on envelopes and buy self sealing envelopes cause I have no spit to lick them shut.
I've learned to sleep with my mouth closed. Learned to drink while eating. Which I really did not do before vbelieve it or not.
Geez I think I could go on for a week.0 -
Spittingmicktissue said:continuum
There are several little things I have learned to do differently:
Moisture. I sleep with a mug of water on my bed stand that is heated through the night. I awake through the night with dry mouth/throat so the warm water does a great job on the dryness/mucus. I also rinse it when I get up in the morning to loosen stuff.
Shaving. I don't yet grow hair below the jawline so shaving is easier. Also I have no feeling on the right side of my neck so that's a little strange.
Bathing/swimming/hot tub. I love a good bath but there are two issues with this. 1) cannot submerge the PEG, and 2) hot water makes the neuropathy worse. I was in my buddy's hot tub the other day and had to alternate between laying on either side. Not being able to submerge is a real drag.
Food/taste. Most folks here know I am an outlier (me and Sweetblood!) when it comes to eating. I can't swallow (or burp) BUT I can taste. The usual side effect is taste change. My taste is intact (seems to be enhanced). Which would you rather have: A - no taste but also no PEG; or taste with PEG?
Spit cup/handkerchiefs. I never used these before by now they're my constant companions. One interesting aspect of this is that when I have a lot of disgusting mucus to offload and I'm with company the typical response to my apology ("I know this is disgusting") is usually "Please do not apologize, go right ahead". It's amazing how tolerant people can be in when the context is right.
I expect that some of these things will go away or change over time and that out lot is to learn to adapt to our new normal. It's hard, but we can do it. Never give up, never surrender.
Best,
Mick
Everyone is very accepting. I have to a tendancy to spit when I eat then try to talk. (It seems to be getting a little better) I was in a restaurant with my family and both of my son's girlfriends. I spit into my son's girfriends dinner. It seemed like slow motion when it happened. Everybody started laughing, including her. My family (plus) have accepted the way things are. I know how gross that was - to them it was just funny.0 -
I need water...JUDYV5 said:Spitting
Everyone is very accepting. I have to a tendancy to spit when I eat then try to talk. (It seems to be getting a little better) I was in a restaurant with my family and both of my son's girlfriends. I spit into my son's girfriends dinner. It seemed like slow motion when it happened. Everybody started laughing, including her. My family (plus) have accepted the way things are. I know how gross that was - to them it was just funny.
I have to have water or milk with every meal...and every bite...0 -
My New Norm
My surgery removed most of my hard palate and a good chunk of my soft palate. the soft palate is starting to close up on its own, but my appliance is too small to cover my hole. my new normal is to have paper towels, kleenex, or a rag next to me. to always know where a bathroom is if I am going to eat in public, and to not be afraid to take the appliance out at the table and wipe it off on a napkin. I eat differently, my favorite foods hurt when they go up my nose, but there are plenty of good options out there. if it doesn't taste good, I am not going to go through the trouble of eating it. My new normal involves flavorful food that is packed with nutrients, and when I am too tired or too sore to eat...having boost on hand to make sure I get enough nutrients.
My surgery was only 6 weeks ago and I know I will have more new normals during and after radiation, but for now...I am so happy that I am able to eat anything that I will embrace the other stuff...which often just makes me laugh!0 -
Pure PoetryD Lewis said:Eschew Ikea
Ikea plus Peripheral Neuropathy equals extreme frustration which leads to a Sparta-kick to the offending partially-assembled object. Miniature screws and obscurely-shaped washers fly! Satisfaction ensues. Wow, that almost sounds like Haiku.
Deb
hah - thanks, Deb0 -
adjustmentsPam M said:Pure Poetry
hah - thanks, Deb
We routinely pass reading materials and remote controls to each other, him from his chair over to me on the couch. This involves holding things out with his right arm which he can't do so well.
The new procedure involves a kind of underhanded toss to the coffee table and I retrieve it from there.
I can see using Pumakitty's method shortly when we caulk around the outside kitchen windows getting ready for winter. I'll be up the ladder and he'll be on the ground coaching. That should be interesting.0 -
It was interestingmiccmill said:adjustments
We routinely pass reading materials and remote controls to each other, him from his chair over to me on the couch. This involves holding things out with his right arm which he can't do so well.
The new procedure involves a kind of underhanded toss to the coffee table and I retrieve it from there.
I can see using Pumakitty's method shortly when we caulk around the outside kitchen windows getting ready for winter. I'll be up the ladder and he'll be on the ground coaching. That should be interesting.
Let me know how many times he tells you "no, no not that why", I think my dad told me that at least a dozen times. But, it was fun and you will feel proud of yourself afterwards.
Kathy0
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