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

HUGS

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

 

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!!

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.

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

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

warm hugs,

sue

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.

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.  

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