Petty, I know.....

KJCorri

Hey guys,

I am more of a lurker than anything, I have gained a lot of encouragement from reading all the posts and I try keep up with those who have things going on- good and unfortunately not so good.  Today, though, I am having a "poor me" day and I need a pat on the back, please. My last Chemo was on Nov 1 and my last radiation was on Nov 13.  However- I still have a large ulcer on my tongue from the mucositis- its about an inch square in the middle of the top side of my tongue.  I found I could eat solid foods again right before Christmas- at least some solid foods, if I was very careful- no fruit or cookie type items though, I had been drinking ensure pretty much exclusively since September.  My magic mouthwash and my viscous lidociane are still good friends, percocet when I need it- mostly at night.

I find myself at work today- and I have forgoten to bring my magic mouthwash and my lidocaine with me.  I was in a rush this morning and they just didn't make it in my bag, no percocet either.  I am about to rinse with salt and soda after I post this- but the pain, although usually fairly well comtrolled, has just set me off.  Boy, I am tired of all this!!!  I have had great support from friends and family- but- through most of this I haven't looked sick- unless you count the stitches on my face right after surgery- but the surgeon did such a great job you can't even tell now (and yes, i am grateful) but I think my husbsnd forgets that I am still dealing with some significant pain, and I still don't feel like I have all my energy back.  At work and at home everyone has gone back to having their normal expectations of me- and I just don't feel up to it. 

Thanks for listening, I feel like a spoiled child next to what some of you have gone through - or are going through.  I thought what the heck, though- i'll put this out there and see if someone can't help me gain some perspective. 

 

with respect,

kylie 

blackswampboy

not petty

recovery is a long uneven process, and we all have setbacks. 

hope your husband can understand your pain, and that you're running a marathon. or maybe it's a triathlon. ;-)

best wishes for the new year!

hwt

blackswampboy said:

not petty

recovery is a long uneven process, and we all have setbacks. 

hope your husband can understand your pain, and that you're running a marathon. or maybe it's a triathlon. ;-)

best wishes for the new year!

Kylie

I think this time of year we're all expected to be happy and jolly and people don't understand that on a given day, we might not have it in us. My husband feels like he always has to be cheerful and upbeat and most of the time I benefit from his positive attitude. It's human nature for your family to see you as you used to be, that's what they all want for you. Tell your husband how you are feeling and what you need in the way of support. You aren't that far out of tx, you will get that energy back!

ditto1

Thats what this board is

for a place to come when you need a little uplifting.  Trust me I used it for that many times including today.  I to feel a little out of sort commenting about minor things when so many are dealing with major issues.  But thats what this site is for good and bad, so today you are sharing your feelings as I did and you have that right.  Hopefully you wont leave home without your meds in the future but likely part of how you are feeling today just not having it with you.  As for those around us yes they have been thru a long tough journey with us so I believe when we finish treatments and start showing some recovery they need to hope and feel things are back to normal and they just are not quite there yet, but I do understand where they are coming from.  So hope you have a better day tommorrow than today and remember you just did what we all have done at one time or another, next week you will be posting for to help someone else who needs to vent. 

Skiffin16

Free Fallin' ~ Tom Petty....

Definitely not Petty...

It's just another case of, "If you haven't been there, done that, you just don't understand."...

Fatigue is huge after treatment, several factors too...

One, your body has just taken a huge hit. Trying to recover and lack of physical strength and stamina pre-treatment are big contributors. Another though maybe a little early in your case is Thyroid Function, or lack of...if radiation was part of treatment (which it is per your comment).

I had it relatively easy for recovery, non-physical job.., and it still took me a while to recover..., not sure if I ever quite got back the stamina I had before... At least not without taking a big hit later in the evening.

Anyways, vent, communicate, gripe or moan as much as you like, and as much as you need....

We'll chip in a gripe with you, LOL...

Best ~ John

 

CivilMatt

feel better

Hi kylie,

 

Believe it or not I was a double Lurker, not only did I not physically participate I had my wife looking up things on here.

 

You have a right to cry “poor me” getting  caught away from your magic mouth wash (best stuff in the world), and  your lidocaine with an ulcer on your tongue.  Yikes, you should have called me I would have rushed some over to you (I’ve got plenty of both).

 

I commend you for being back to work, I am trying, but my butt is still dragging.  As for eating, I always tried, but you could not convince my mind that physical solid food was for consumption by me, no way, not for months.

 

Don’t get me started on what others expect from us, they are all nuts.  It should be what we expect from them (I like that better).

 

You sound like you are doing great, your working, healing and eating.  I would expect that sore tongue to be healing very soon and with time you’ll gain strength and stamina.

 

My word Kylie, anyone who makes it through this crap deserves a little “poor me” time, so anytime you feel like talking we are here to listen and more importantly to understand.

 

Best,

 

Matt

jcortney

Skiffin16 said:

Free Fallin' ~ Tom Petty....

Definitely not Petty...

It's just another case of, "If you haven't been there, done that, you just don't understand."...

Fatigue is huge after treatment, several factors too...

One, your body has just taken a huge hit. Trying to recover and lack of physical strength and stamina pre-treatment are big contributors. Another though maybe a little early in your case is Thyroid Function, or lack of...if radiation was part of treatment (which it is per your comment).

I had it relatively easy for recovery, non-physical job.., and it still took me a while to recover..., not sure if I ever quite got back the stamina I had before... At least not without taking a big hit later in the evening.

Anyways, vent, communicate, gripe or moan as much as you like, and as much as you need....

We'll chip in a gripe with you, LOL...

Best ~ John

 

Perfect Timing

Kylie,

 

I read you note today, and no you don't sound petty at all.  Anyway, I have an example of how our caregivers/companions can never really understand.  Tonight we went to a medeterranian buffet and, for the first time at a buffet, there was nothing that tasted very good (except for the chicken soup).  My wife (who is terrific, supportive and concerned) could not understand how I couldn't eat ANYTHING.  She just couldn't get her arms around that there was nothing there for me.  How do you explain that everything burns ("really, everything"?_),  how do you explain that bread (pita or any other kind) is like plaster board and needs to be immediately washed down with warm (not cold!) water; how do you explain these things?  Answer, you can't and they can't really understand either and it's not their fault.  They want to be supportive and partner with us on this road, but they are not sick.  They don't hurt.  And WE have to remember that.  Being patient with them can be as hard for us as their trying to understand what we are going through is for them.

 

So, what did  learn tonight?  I learned that I need to talk, really communicate with my wife what I'm feeling and to let her know that I appreciate everything she does and all she cares.  She needs to remember that I don't feel the same way she does, I'm sick and I hurt and it's just about all the time; even when I'm smiling.

Have a happy and safe 2013.

Joe Cortney

Dallas, TX

just finished RADs #9 and second round Chemo #4

CivilMatt

jcortney said:

Perfect Timing

Kylie,

 

I read you note today, and no you don't sound petty at all.  Anyway, I have an example of how our caregivers/companions can never really understand.  Tonight we went to a medeterranian buffet and, for the first time at a buffet, there was nothing that tasted very good (except for the chicken soup).  My wife (who is terrific, supportive and concerned) could not understand how I couldn't eat ANYTHING.  She just couldn't get her arms around that there was nothing there for me.  How do you explain that everything burns ("really, everything"?_),  how do you explain that bread (pita or any other kind) is like plaster board and needs to be immediately washed down with warm (not cold!) water; how do you explain these things?  Answer, you can't and they can't really understand either and it's not their fault.  They want to be supportive and partner with us on this road, but they are not sick.  They don't hurt.  And WE have to remember that.  Being patient with them can be as hard for us as their trying to understand what we are going through is for them.

 

So, what did  learn tonight?  I learned that I need to talk, really communicate with my wife what I'm feeling and to let her know that I appreciate everything she does and all she cares.  She needs to remember that I don't feel the same way she does, I'm sick and I hurt and it's just about all the time; even when I'm smiling.

Have a happy and safe 2013.

Joe Cortney

Dallas, TX

just finished RADs #9 and second round Chemo #4

food, who needs it

Joe,

 

One time while trying to explain my “hatred toward food” to my parents, I put a can of Crisco Shortening on the table and said “this is what food tastes like to me”.  I don’t think it helped them get it, but I thought I was pretty clear.

 

Matt

jcortney

CivilMatt said:

food, who needs it

Joe,

 

One time while trying to explain my “hatred toward food” to my parents, I put a can of Crisco Shortening on the table and said “this is what food tastes like to me”.  I don’t think it helped them get it, but I thought I was pretty clear.

 

Matt

That's Great!

I get it!  And guess what, you are probably right, they didn't understand but I bet they got closer.

 

J.

ausrebel53

Another Lurker

Hey Kylie, bit of a lurker myself. Haven't been here long but have nothing but admiration for everyone here, coping and backing up each other. I haven't started radiation and chemo yet but have been through 3 operations (one resulted from complication with biopsy). I have a growth in my larynx that causes a lot of pain in my throat and an ear that feels like a pick axe is being thrust into it. There has been many a time I would like to comment and contribute but held back due to pain or feeling weak. Just being here and silently hanging out is a therapy in itself, also it is surprising what we learn here from others' experiences.

Regards Michael 

katenorwood

Nothing is petty here

Kylie,

I am so pleased and impressed every time I read someones back to work.  I can't imagine going through the pain you're enduring and having to keep an upbeat attitude.  Things in life change us...and unless you've been through it no one understands it.  Please keep up the good work on getting through all of it.  And never think that we don't get it.....we do !   Katie 

Skiffin16

ausrebel53 said:

Another Lurker

Hey Kylie, bit of a lurker myself. Haven't been here long but have nothing but admiration for everyone here, coping and backing up each other. I haven't started radiation and chemo yet but have been through 3 operations (one resulted from complication with biopsy). I have a growth in my larynx that causes a lot of pain in my throat and an ear that feels like a pick axe is being thrust into it. There has been many a time I would like to comment and contribute but held back due to pain or feeling weak. Just being here and silently hanging out is a therapy in itself, also it is surprising what we learn here from others' experiences.

Regards Michael 

Hello Michael...

Sharing our experiences hopefully to help others not make mistakes that we have, or to at least lessen the learning curve is what we do.

I think we all get a sense of paying it forward anythime we can help another warrior with their battle.

Particpate as much as you like, there will definitely come a time when sharing your experience will be invaluable to someone going through similar.

As goes for lurking, whatever you are most comfortable with.

Best ~ John 

phrannie51

Kylie....

You're not even two months out of treatment!  Of course you're still very fatigued, and because this is HNC, and all the lovely things that go with it....there is still residual pain, and general uncomfortableness....gawd, you just went thru a 3 month treatment wringer.  I am lucky that my husband will read anything that is laying around...after treatment, my insurance company sent a booklet "Life after Cancer Treatment".....he read it of course (I didn't...LOL)....so he was and is aware that I'm still very tired, and that fatigue can last up to a year.  Maybe sitting your man down, and just telling him that things are going to take a good while to get back to normal....that tho you seem to have bounced back...appearances are deceiving.  A number of people where I work have had cancer and have come back, so my boss checks in with me about once a week, and sees how it's going for me....lucky again!   I think you can order that booklet from one of the big cancer sites....tho...if your hubby might read it.  Leaving all your "protection kit" at home would be a blow....knowing you were going to have to suffer all day, would send me down a hole, too.  But you made it thru the day...phew!  Maybe have an emergency kit in a drawer at work...just in case? 

Not being able to eat normally is something nobody gets....if they haven't had this kind of treatment....eating is such a normal part of everyday life, and a subtle part (it's not like if we lost a leg, which would be very visible to others, and therefore they wouldn't be asking us to go for a mountain hike)....others simply forget.  I don't let it get to me.....if I can't eat it, I don't...and just say "too dry"..."not enough spit"....."no taste"....with no apologies.  If someone brings me something, I just thank them, and give it to hubby .  You are NOT acting like a spoiled child...you've been thru a lot emotionally, physically...and intellectually.....you are still in the middle of the after effects of the whole enchilada....this isn't the time to pick on yourself....but it may be the time where you have to stand up for yourself a little...and say "hey, everybody....it's going to be a while before I'm 100%....so keep your expectations in line with that"

p

Edit:  Maybe print some of the pertenant things out of this....and hand it to hubby with a request to read it...

http://www.cancer.gov/cancertopics/coping/life-after-treatment/page4

KJCorri

katenorwood said:

Nothing is petty here

Kylie,

I am so pleased and impressed every time I read someones back to work.  I can't imagine going through the pain you're enduring and having to keep an upbeat attitude.  Things in life change us...and unless you've been through it no one understands it.  Please keep up the good work on getting through all of it.  And never think that we don't get it.....we do !   Katie 

Thank you

Thank you to all of you.  I feel validated- perhaps that was what I needed.   Thank you for some of the nuggets of wisdom, they made me think. I do need to be more patient with hubby about trying to understand where I am "at", I need to be patient with my body and let it heal in it's own time and, this one is a biggie for me, rest when my body needs to rest.  And yes- I remembered my mouthwash and lidocaine today! 

Thanks

Kylie

KJCorri

phrannie51 said:

Kylie....

You're not even two months out of treatment!  Of course you're still very fatigued, and because this is HNC, and all the lovely things that go with it....there is still residual pain, and general uncomfortableness....gawd, you just went thru a 3 month treatment wringer.  I am lucky that my husband will read anything that is laying around...after treatment, my insurance company sent a booklet "Life after Cancer Treatment".....he read it of course (I didn't...LOL)....so he was and is aware that I'm still very tired, and that fatigue can last up to a year.  Maybe sitting your man down, and just telling him that things are going to take a good while to get back to normal....that tho you seem to have bounced back...appearances are deceiving.  A number of people where I work have had cancer and have come back, so my boss checks in with me about once a week, and sees how it's going for me....lucky again!   I think you can order that booklet from one of the big cancer sites....tho...if your hubby might read it.  Leaving all your "protection kit" at home would be a blow....knowing you were going to have to suffer all day, would send me down a hole, too.  But you made it thru the day...phew!  Maybe have an emergency kit in a drawer at work...just in case? 

Not being able to eat normally is something nobody gets....if they haven't had this kind of treatment....eating is such a normal part of everyday life, and a subtle part (it's not like if we lost a leg, which would be very visible to others, and therefore they wouldn't be asking us to go for a mountain hike)....others simply forget.  I don't let it get to me.....if I can't eat it, I don't...and just say "too dry"..."not enough spit"....."no taste"....with no apologies.  If someone brings me something, I just thank them, and give it to hubby .  You are NOT acting like a spoiled child...you've been thru a lot emotionally, physically...and intellectually.....you are still in the middle of the after effects of the whole enchilada....this isn't the time to pick on yourself....but it may be the time where you have to stand up for yourself a little...and say "hey, everybody....it's going to be a while before I'm 100%....so keep your expectations in line with that"

p

Edit:  Maybe print some of the pertenant things out of this....and hand it to hubby with a request to read it...

http://www.cancer.gov/cancertopics/coping/life-after-treatment/page4

thanks

Thanks Phrannie! Stand up for myself, yeah- I need to do that, it's about time!  Thanks for the staright talk and the motivation!  :-)

Kylie

luv4lacrosse

HANG IN THERE

Don't feel bad. last night I was in a "woe is me mood" probably due to some dehydration. I curled up on a couch and just fell asleep by 7:30.

Just try to make sure you string together more good days than bad. That is how I try to look at it on a longer term basis. It will get better as time goes.

 

Mike

Tim6003

luv4lacrosse said:

HANG IN THERE

Don't feel bad. last night I was in a "woe is me mood" probably due to some dehydration. I curled up on a couch and just fell asleep by 7:30.

Just try to make sure you string together more good days than bad. That is how I try to look at it on a longer term basis. It will get better as time goes.

 

Mike

Hello Kylie ...

I've had a heck of a time getting on CSN the last couple of weeks...so I have not responded to some of your posts....but boy if you are actually working...that is great.  I took 3 months off the day my first rad started.  Ended up not going back to work for four months (I have a great boss, or maybe I'm just that good, hmmm)

I digress.

I get the tired feeling ...it's really weird. I'm almost one year out from my last rad, been hunting and even cutting four cords of wood bent over a chain saw ( we heat our home with wood in winter, though we have electric heat, very rarely use it) ..and I was feeling great, then BAM...feeling tired again...can't explain it but it's like a deep, weary bone tired.  Then up a day, down two, up a few days, down two. My wife was perplexed (and she has been a great caregiver)..however during the recent Holidays she and the kids (I have five kids ages 2-14) had us going non-stop to this play, this Christmas party, this work event, another kids musical at school...I remember one day just coming home early from work and she told me she had my clothes ready, we had to hurry up and eat and we were going to blah, blah blah,....I just said as kindly as I can. NO.  I can't go and I am not going to force myself to go. Bent down and expalined to the "affected child" I love you honey, but Daddy just can't make your play, I"m not feeling good.  My kid said "that's okay Dad, I know you love me anyway" ...:) ..boy that was easy ...I told my wife we gotta cut back (or at least I do) when my body tells me to...she undestood and that week we ditched a couple of events and hung out at home watching tv together .... I wish I could explain why it comes and goes.  Most on here know I love to hunt...got my wolf tag for this seaon, headed out in 3 feet of snow couple of weeks ago...never got 100 yards and just realized I can't do it today.

The good news is it will get better...you just will have to find a way to get better at saying when it's bad and just shoot straight (I had a hard time with that trying to be the hero to the wife and kids so much)....

As for taste, I'm doing very well on that front now ...but I remember when I had two tastes, cardboard and cardboard with salt ....that was it for me...no fun eating when it is like that for sure.

Best,

Tim

CivilMatt

excuse me while I reshuffle the threads