This has been my hardest weeks in this journey.....

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camul
camul Member Posts: 2,537
in Breast Cancer #1

I hitch honestly is no longer a journey, turning into more of a nightmare.  2 weeks ago the pain became a nightmare. My T spine, ribs arms upper ne in lava le and head hurt so bad, I literally cried 2 days.  My boys wer

having  help me out of bed.  Hospice upped the Breakthrough meds, not even a dent, then after a few days went back to 150 on Centanyl patches, then 200mg patches 3 days later.  Then dilauded went from 2 mg as needed (4-6 hrs), to 4 mg up to 6x a day. kept saying it is my mid spines and lungs, started fevers 4-5 days 99- 102.  My older son and wife came Saturday and I just cried.  Couldnt eat, sleep, lost 31 lbs in 5 weeks.  My kids called my sister and she flew out the next day.  

They pescdibed something to break up the fluid in my lungs, most likely a pneumonia but on hospice no scans but with in 3 days most of the pain was gone and the fever.  I really thought this is jet, and honestly, with that amount of bone and chest pain, I was ready.  Today is my best day since November and it is still no quality.

My sister goes home Wednesday morning for now. But have 2 others in the wings.some 'friends' who were not happy when I said no to company, I was seriously not out of bed other than bathroominv and bowering for 2 weeks and the headaches not good.  

How do people who live in a cancer world not get that as you get to the end of this journey. The last thing some,  not all of us want,  are people coming, staying too long (hours), and get upset when you or a family member says no company.  3 even called first and were told not today when I was 102. still showed up!  

I have been very nice, but my kids whom I am living with and they are helping me,  qare also seeing it as an intrusion.   It is at the point where I need to be blunt!  These are not even real close friends!Please. If people are upfront enuf to say they are not up to company, respect others boundaries.  The time I do have left, I want to spend with my kids and a few close friends and family!

Hugs,

Carol

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Comments

  • Lisa-Nana to 5
    Lisa-Nana to 5 Member Posts: 16
    #2
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    I'm so sorry you are in such

    I'm so sorry you are in such pain. I pray for you, for comfort from the pain and for your family as you continue with this most horrible fight. Do as you see fit, spend time with those you love, for that's what really matters anyway. Bless you, 

    lisa

  • Mary Jo Cleary
    Mary Jo Cleary Member Posts: 1
    #3
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    Dear Carol,

    Dear Carol,

    How disappointing people are when dealing with a seriously ill person. I have been battling cancer for almost 8 years and know how hurtful others can be because they don't understand fully how you feel. May you feel my love and God's vast love for you. Glad you were able to vent.

    Mary Jo

  • peony
    peony Member Posts: 306 Member
    edited February 2017 #4
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    I'm sorry you're having such

    I'm sorry you're having such a hard time, Carol, but I'm glad you're sharing it with us.  Kick out anybody you don't want to deal with.  You're entitled.

  • tufi000
    tufi000 Member Posts: 745 Member
    #5
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    The Ninja keeps on

    While You continue to be so generous sharing all of this with us, and to our benefit.

    You have earned the right to do as you please in every way. If someone who has been told, not today or You prefer not, and still come they are making this about them not you. Soooo feel free, not guilty, not bad to tell them not today and escort them out or shut the door before they come in.

    Ninja you are a diamond sharing your sparkles and light for everyone even when you are the one who I hope is getting all the squishy stuff from your family and those you choose to be with.

    Hopefully this ease-up in your pain and discomfort will continue.

    All my lovin' as usual

    Sherry

  • 1surfermom
    1surfermom Member Posts: 396 Member
    edited February 2017 #6
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    Oh Carol

    I'm with you on your decision to only have family  and close friends with you in such a difficult time. You and your family deserve respect. I wouldn't feel guilty if I was blunt to those who just " don't get it". I hope that your pain will be minimized and that you can enjoy the company of your boys. You are never far from my thoughts. Love Surf

  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    edited February 2017 #7
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    Been thinking about you~

    Carol, I wish people who mean well, would respect and understand how this is your journey, (not theirs) and if you are not up to company they should honor that. It's about YOU....not them!  Your kids sound wonderful, and caring. I hope you have some days of pain free rest. I can only imagine how the pain has worn you down. Don't feel bad about being blunt with some folks~they surely need it!

    ~M

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    edited February 2017 #8
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    I echo Sherry's words

    Carol,

    I echo everything Sherry said so beautifully.  Wishing that they can control your pain better and that going forward you are comfortable and can have some quality time with your family.

    Hugs,

    Clementine

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #9
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    You're in my thoughts and prayers

     I so hope your pain can be controlled better.  I am sending so many warm, good wishes your way for comfort and peace with what YOU want.  You are loved by so many (me included).  I love our photo together from when you were in Sacramento and I look at it often (just did as a matter of fact).  Your family needs to stand firm on carrying out YOUR wishes and if that means no one except your immediate family gets to visit you, that's what it means.  I can't imagine people not getting that.  Forgive them, but ask your family to be firm.  You know how many friends want to spend time with you, let them just tell someone neutral about that and ensure them that you will get their well wishes.  I am sending all of my love to you and yours as you're dealing with this.  I wish you comfort and love.

    Suzanne

  • aisling8
    aisling8 Member Posts: 1,627 Member
    edited February 2017 #10
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    Sending good thoughts

    And prayers and anything good I can think of.  I'm sorry you're in pain and wish that we had the collective power to ease that for you. As for insistent people, kick 'em to the curb. Better yet, have your family do it for you.

    Love you,

    Victoria 

  • lintx
    lintx Member Posts: 697
    #11
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    Carol

    I pray for your comfort at this time. You certainly have the right to avoid unwanted company. I keep you in my thoughts daily. Hugs, Linda

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #12
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    Dear Carol,

    You are amazing and have amazing boys that are looking after the Mom that they love very much.  They just need to stay firm and others should honor your wishes.  You have been on my mind and in my prayers daily.  I have the CD that you sent me in my car.  Every time I play it, I think of you.

    Love you my friend!

    xoxo

    Jean

     

  • cati0314
    cati0314 Member Posts: 203
    #13
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    Dear Carol

    I hope that today finds you resting and in less pain.  Prayers for you daily, Best, Sharon

     

  • sbmly53
    sbmly53 Member Posts: 1,522
    #14
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    I agree

     

    use your time and strength to spend with your family. Carol, you are such an inspiration to us, thank you. My thoughts and prayers are with you.

    Sue

  • Teach76
    Teach76 Member Posts: 354 Member
    #15
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    Blessings for your family

    Carol,

         May your family be blessed for their choice to embrace you during this painful time.  Yes, they do deserve to have you to themselves!  As others have said, it is your choice.  When I was diagnosed and going through treatment and remembering my Dad's fight, as we moved through treatments and needed help I kept thinking, " Where are they?  Where are those people who Dad and I were there for in their lives of turmoil?"   In the end, I can't help thinking that I was glad to be there with him and glad to have him by myself.  There were things that transpired between us that others will never have.  In my own treatment now, I find I don't have time for those from whom I did not hear in over 12 months.  Maybe some showed up once, why?  To see what a suffering cancer patient really looks like?????   Surround yourself with those you love and show the others the door.

     

    peace and prayers,

    Kathy

  • camul
    camul Member Posts: 2,537
    #16
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    Kathy, I sometimes think that is what some people are doing

    Is seeing if we look like the people in the movies.  Guess what!  We look normal.  I keep trying to think that they are just without a clue, but honestly, ignorance is probably closer.   

    So I have only been responding now to those who have been around, and have told a few that 15-20minutes max.  That is because I am worn out by then.  Yesterday,  I slept thru the hospicenurse visit.  Appt was 2-230, she sent a text stating it would be 345-4p.  I had already fallen asleep.  She hasn't been on time forever, but honestly, I left the house for the first time Wednesday since  Christmas eve and I was totally worn out all week.  So I sent her an apology.  A Podiatrist came and trimmed my nails Thursday, they sent someone to cut my hair Friday at 1pand the nurse was scheduled for after. 

    This has become a job. But I fell asleep at 2p and woke up for 30 minutes at 9 ish, then slept today until 5pm.  Now it is bedtime again.  All I will say is enjoy as much as you can, it gets harder every day!

    Hugs and thanks for letting me vent!

    Hugs, 

    Carol

  • tufi000
    tufi000 Member Posts: 745 Member
    edited February 2017 #17
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    hey!

    Sounds like you have had that spit and vinegar salad dressing!!!!

    Lovin' you Ninja!

    Sherry

  • jennytwist
    jennytwist Member Posts: 896
    #18
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    Sending love & peace....

    ....you are a strong inspiration - the words from a poem I know remind me of your fire & will .  "do not go gentle into that good night"

    Sending the gentlest hugs to hold you close

    much love,

    Jenny

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #19
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    HUGS AND PIXIE DUST ON THE

    HUGS AND PIXIE DUST ON THE WAY....

     

    DENISE

  • Apaugh
    Apaugh Member Posts: 850 Member
    #20
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    Hugs

    Prayers for peace and comfort going up for you.

    Annie

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    edited February 2017 #21
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    Gentle hugs - and admiration my beloved Carol ..

    You continue to "beat to your own drum" - no need to worry yourself with hurt feelings- it's is ALL ABOUT YOU!! do what it is best for YOU ...

    LOVE you to the moon, and back.. Vicki Sam

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