I wish all cancer patients would be given some education as to what to

camul

tufi000

yeah

But Sensai, that is YOUR job!!!!

Great to see ya luv

Sherry

disneyfan2008

HUGS
 

HUGS

 

camul

Didn't go thruJ

It is so hard sometimes answering questions from other breast cancer

patients who have received such limited info on their breast cancer dx and think that all breast

cancer is the same.  I think I have been doing this for

so long now and it gets harder, especially with the hospice

portion.  

Going on hospice does not mean you are giving up, it means I needed more help.  Because I can still walk with a cane or use a wheelchair to get around in chairs does not mean I am going into remission.  With the constant pain I am getting depressed for really the first time where

it is affecting my activities, hospice nurse says common with constant pain.  others from support group believe it is because I am giving up, not pain, because so and so got down at the end when they started hospice. 

 Now have head /brain pressure on both sides, most likely cancer has spread. It is not from hospice.  Have been running fevers and am not up to company.  They stay too long, cry, and I don't have the energy to console them.  I will talk for short times on the phone, but get worn out.  I have explained this over and over and have gotten replies that if I wasn't alone so much and would allow visitors I would feel better.

sometimes I just want to hang up.  The cancer has spread so rapidly it is thru my lungs, brain, bones, and is affecting my ability to get in and out of the house.

These are fellow cancer patients, w active cancer who just do not understand the difference between how your body responds differently to stage 1 and stage iv, lately I have told a few to go on line and look up end stage cancer, the difference between basil cell cancer and pancreatic.  I am so careful to be sensitive, but honestly, I don't have the energy anymore.  I will say no to company and they come anyways 'to cheer me up'.

I am not alone, I am living with my son and his gf, When he is home, he will answer and just say I am

not up to company, and others the exception of a handful who only stay for 10-15  minutes.

I don't mind answering sometimes, but honestly I would never ask someone how long they have left.  Or if Inam coming back as a butterfly when I pass???  Seriously, these are some of the questions I am being asked!  Or one said your coloring is getting yellow, do you think it has spread to your liver?  about two days later she said, your coloring looks pale today, did you ask your nurse if it could be in your liver????  I had no response the first day, two days later I told her it was time to leave!  

Yes I know what yellow skin means, no I never thought about coming back as a

butterfly! Lol.  Because I didn't want her to come didn't mean I was all alone.  My family also lives here and likes some privacy!  As hard as all of this is, please think before asking some questions.  When you do go on hospice, it is because you are reaching the end and I know my time is limited.  To function, my pain meds areso high that functioning is less pain, not always right in my thinking.

The only thing keeping me going with some of these idiotic questions is my warped sense of humor and the mute

button on the phone, when I am laughing so hard!!!  Sherry I know you get it!  

It is people from My in person support group, not this anyone here!

Hugs to all,

CB

 

2nu2tnbc

camul said:

Didn't go thruJ

It is so hard sometimes answering questions from other breast cancer

patients who have received such limited info on their breast cancer dx and think that all breast

cancer is the same.  I think I have been doing this for

so long now and it gets harder, especially with the hospice

portion.  

Going on hospice does not mean you are giving up, it means I needed more help.  Because I can still walk with a cane or use a wheelchair to get around in chairs does not mean I am going into remission.  With the constant pain I am getting depressed for really the first time where

it is affecting my activities, hospice nurse says common with constant pain.  others from support group believe it is because I am giving up, not pain, because so and so got down at the end when they started hospice. 

 Now have head /brain pressure on both sides, most likely cancer has spread. It is not from hospice.  Have been running fevers and am not up to company.  They stay too long, cry, and I don't have the energy to console them.  I will talk for short times on the phone, but get worn out.  I have explained this over and over and have gotten replies that if I wasn't alone so much and would allow visitors I would feel better.

sometimes I just want to hang up.  The cancer has spread so rapidly it is thru my lungs, brain, bones, and is affecting my ability to get in and out of the house.

These are fellow cancer patients, w active cancer who just do not understand the difference between how your body responds differently to stage 1 and stage iv, lately I have told a few to go on line and look up end stage cancer, the difference between basil cell cancer and pancreatic.  I am so careful to be sensitive, but honestly, I don't have the energy anymore.  I will say no to company and they come anyways 'to cheer me up'.

I am not alone, I am living with my son and his gf, When he is home, he will answer and just say I am

not up to company, and others the exception of a handful who only stay for 10-15  minutes.

I don't mind answering sometimes, but honestly I would never ask someone how long they have left.  Or if Inam coming back as a butterfly when I pass???  Seriously, these are some of the questions I am being asked!  Or one said your coloring is getting yellow, do you think it has spread to your liver?  about two days later she said, your coloring looks pale today, did you ask your nurse if it could be in your liver????  I had no response the first day, two days later I told her it was time to leave!  

Yes I know what yellow skin means, no I never thought about coming back as a

butterfly! Lol.  Because I didn't want her to come didn't mean I was all alone.  My family also lives here and likes some privacy!  As hard as all of this is, please think before asking some questions.  When you do go on hospice, it is because you are reaching the end and I know my time is limited.  To function, my pain meds areso high that functioning is less pain, not always right in my thinking.

The only thing keeping me going with some of these idiotic questions is my warped sense of humor and the mute

button on the phone, when I am laughing so hard!!!  Sherry I know you get it!  

It is people from My in person support group, not this anyone here!

Hugs to all,

CB

 

You are AMAZING!!!

Good Morning CB.  I am fairly new to this fight/ journey!  You are such an Inspiration to me!!!  Sending you lots of love and hugs!!

tufi000

Hi HI

OH!  Sensai!!! Love it all!  Had a small siezure yesterday which consisted of me walking into the livingroom talking jibberish for a sec.  I don't remember any of it and not knowing that it was a siezure I was sure you had finally gotten me to that higher plane.

I think if I was there I would just sit and play my video game. If you wanted to talk, fine. If not. Fine. Need something? Fine. Have I been here too long? Fine.

Sensai, perhaps in trying to edify about the beast experience, it, instead, serves to keep us the center of ALL even when we think we are giving.

The one day at a time thing may not be serving you well now, but I would be pleased to serve you. Your discomfort as all our personal worlds shrink is the worst part as you are a major force in this universe maybe you didn't have time to master the anti-pain thing. Sensai!!! Your education was incomplete!!!!!

Luv to pieces!

Sherry

peony

Carol, you're the greatest to

Carol, you're the greatest to use some of your precious energy and share this with us.  Just say the word and we'll crank up that pink bus and stand arm in arm to keep any unwanted visitors out. You're always in my thoughts and prayers.

Double Whammy

Hi, my friend

You get to do and feel whatever you want.  Please don't let yourself get in a position of trying to make everyone else happy so they can all sit around and say, "I saw Carol just last . . . . and she looked . . . ".  It is none of anyone's business how you handle the remainder of your life.  Until one has walked in your shoes, they just plain don't get it and for some reason think they're experts on HOW you should feel and be. Gimme a break!  I am so angry that you're having these difficulties with so-called "friends" in this difficult time for you.  It really doesn't matter how they think you should feel or what you should do to make yourself feel "better", I'm so angry at them all for you. How about this?  Let me take on that anger for you and you just be whatever you want to.  I have a dear friend in a pretty much the same boat as you and as much as I want to be there for her, I feel she gets to set the rules.  If she wants me to stop by, I will.  If not, I respect her wishes.  Her husband and family are the most important people to her and they are there for her.   I love you and hope you can let go of trying to get others to understand because they don't and what is important is that you do whatever YOU want to do.  ---- em! 

I so appreciate that you feel we are a safe place for you to vent and hope this will continue.  You get to vent, be angry, be tired, be sad, fly around like a butterfly (really?) here as much as you like as far as I'm concerned.

And you will always be dear to me.

Love, Suzanne

 

camul

Thanks you guys

I knew you would get it!   Not a butterfly but someone who hit the powerball and can share it with my 10 siblings and their families and friends and as always, St. Jude!

lol....   I forgot the trip to Vegas and Ireland.....

hope you all are I ell.

CB

tufi000

Oh Sensai`

ZIPLINE!

Of course I got it kiddo!

It looks like anoither no-sleep night for me. However I will not use this post as an excuse to rationalize my insomnia as THIS one is not a rationalization.  I love you for allowing me to see your soul. (See?? It's all selfishness) hee hee as Pam would have said.

luv

Sherry

aisling8

No, not a butterfly

People say such stupid things. I think they're afraid so they fill the silence. I don't pretend to know the right things to say so I'll just tell you I think about you all the time and wish mightily that you have no pain. Oh. And I just don't see you as a butterfly. 

Lots of love,

Victoria

Jean 0609

Sending you hugs!

Dear Carol,

I just wished I was closer.  I would just come, give you a big old bear hug, and be on my way.

 

xoxo,

Jean

 

sbmly53

Carol

you are amazing, one of the truest, strongest people I know.

warm hugs,

sue

Apaugh

Rude, scared, people

When my mother was in stage IV so was her sister.  Her sister was in a hospice center dying.  They told us it could be anytime.  My mother ask for me to take her up there to see her sister to say goodbye.  So I did.  Mom was weak so she required a wheelchair.  I placed her by her sister's bed and helped them hold hands and talk.  People were rude, they should of left the room and let them have their moment.  I looked up and a lady was taking pictures of them.  I took her camera and erased the images.  I told her, this is a moment just for them not for your entertainment.  and I then proceeded to throw everyone out of the room so my mother could say goodbye to her sister.  Two days later her sister died.  A month later, my mother died.  People are still mad at me for being "so bossy and rude" to them.  Oh well.

 

booksandnumbers

Ignorance

I'm new to this site and in absolute awe of all these strong and courageous women. In my journey through this I learned very fast that most people just want you to tell them you are doing okay. If told the truth many don't know how to deal with it and you wind up trying to comfort them. Let's be real here, none of us have much energy for that. Or much patience if you're like me. I didn't mind the questions so much as I did the fact that they all seemed to know what was best for me. Like cancer robbed me of the power to think and decide for myself. If I can tell anyone anything it is to just do what works for you. No apologies. All any of us can do is try to deal with this awful disease the best we can, one day at a time. Or sometimes minutes at a time. Wishing you love and grace.

 

Puffin2014

sending hugs

I haven't been here for awhile, just wanted you to know you have been in my prayers, sending hugs

camul

Double Whammy said:

Hi, my friend

You get to do and feel whatever you want.  Please don't let yourself get in a position of trying to make everyone else happy so they can all sit around and say, "I saw Carol just last . . . . and she looked . . . ".  It is none of anyone's business how you handle the remainder of your life.  Until one has walked in your shoes, they just plain don't get it and for some reason think they're experts on HOW you should feel and be. Gimme a break!  I am so angry that you're having these difficulties with so-called "friends" in this difficult time for you.  It really doesn't matter how they think you should feel or what you should do to make yourself feel "better", I'm so angry at them all for you. How about this?  Let me take on that anger for you and you just be whatever you want to.  I have a dear friend in a pretty much the same boat as you and as much as I want to be there for her, I feel she gets to set the rules.  If she wants me to stop by, I will.  If not, I respect her wishes.  Her husband and family are the most important people to her and they are there for her.   I love you and hope you can let go of trying to get others to understand because they don't and what is important is that you do whatever YOU want to do.  ---- em! 

I so appreciate that you feel we are a safe place for you to vent and hope this will continue.  You get to vent, be angry, be tired, be sad, fly around like a butterfly (really?) here as much as you like as far as I'm concerned.

And you will always be dear to me.

Love, Suzanne

 

Thanks Suzanne!

Knew you would understand, Linda, Victoria, Sherry,  lementine.  I think I have learned so much since coming on here, that I shouldn't be so surprised. Eileen and Chen etc....  sometimes I look for some of their later posts and they handled it so well, or

atnleast it seamed like they did.  

camul

Double Whammy said:

Hi, my friend

You get to do and feel whatever you want.  Please don't let yourself get in a position of trying to make everyone else happy so they can all sit around and say, "I saw Carol just last . . . . and she looked . . . ".  It is none of anyone's business how you handle the remainder of your life.  Until one has walked in your shoes, they just plain don't get it and for some reason think they're experts on HOW you should feel and be. Gimme a break!  I am so angry that you're having these difficulties with so-called "friends" in this difficult time for you.  It really doesn't matter how they think you should feel or what you should do to make yourself feel "better", I'm so angry at them all for you. How about this?  Let me take on that anger for you and you just be whatever you want to.  I have a dear friend in a pretty much the same boat as you and as much as I want to be there for her, I feel she gets to set the rules.  If she wants me to stop by, I will.  If not, I respect her wishes.  Her husband and family are the most important people to her and they are there for her.   I love you and hope you can let go of trying to get others to understand because they don't and what is important is that you do whatever YOU want to do.  ---- em! 

I so appreciate that you feel we are a safe place for you to vent and hope this will continue.  You get to vent, be angry, be tired, be sad, fly around like a butterfly (really?) here as much as you like as far as I'm concerned.

And you will always be dear to me.

Love, Suzanne

 

Thanks Suzanne!

Knew you would understand, Linda, Victoria, Sherry,  lementine.  I think I have learned so much since coming on here, that I shouldn't be so surprised. Eileen and Chen etc....  sometimes I look for some of their later posts and they handled it so well, or

atnleast it seamed like they did.  

tufi000

camul said:

Thanks Suzanne!

Knew you would understand, Linda, Victoria, Sherry,  lementine.  I think I have learned so much since coming on here, that I shouldn't be so surprised. Eileen and Chen etc....  sometimes I look for some of their later posts and they handled it so well, or

atnleast it seamed like they did.  

HEY HEY HEY!!!!!

Good day to you!!!!! As my mom would sing..

good morning to you, good morning to you, We're all in our places, with sun shiny faces, Oh this is the way, to start a new day.

And yes!!! Seeing you is DEFINITELY a great start to my day. See? Still about me. HAHAHAHA

Lots of love Sensai

Sherry