My cancer has spread!

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  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #22
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    Thinking of you daily - as wells and praying

    for you, Miss Carol.

    i LOVE you to pieces -- my Precious Friend.

    Vicki Sam

  • WildernessGirl
    WildernessGirl Member Posts: 58 Member
    #23
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    Prayers and Hugs

    It has been a few months since I have been on this discussion board but felt that I needed to log on.  Prayers and hugs to you Carol.  You are an inspiration and a strong lady.  You gave me strength and hope when I was newly diagnosed.  I pray that you have peace and love from your family and friends to keep you strong. 

  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    #24
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    Thinking of you today~♥

    Hugs to you Carol~ peace and rest to you as well~ 

    ~M

  • Grandma X 6
    Grandma X 6 Member Posts: 135
    #25
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    So sorry

    You have fought long and you will missed, now rest in peace our special friend

  • camul
    camul Member Posts: 2,537
    edited November 2016 #26
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    VickiSam said:

    Thinking of you daily - as wells and praying

    for you, Miss Carol.

    i LOVE you to pieces -- my Precious Friend.

    Vicki Sam

    Thanks VickiSam!

    Wish it was easier, but that's not going to happen.  I wake up feeling better, then move around and the whole body hurts.  I haven't figured out which is worse, the headaches or my legs having no strength or the tightness thru the chest!

    Tried to blame it on UTI, but have be n on this antibiotic for 8days today and the headaches, tailbone throbbing , legs with no strength, and just totally worn out is all still there.  The nurse told me yesterday, this is the process, so I can't blame anything else.  Good thing is that I can up the pain med in the pump,

     so that will be tomorrow, going to see the PA for the pain pump and he will up it.  

    Off the steroids finally, but it was suggested that I may need to go on a lower dose than I was on for

    the headaches, don't know if it was worth the swelling in my legs and

    face.  I think I would rather have the headache he's.  My legs and feet were so swollen I couldn't get shoes on.  This was my first time on steroids and I didn't realize it takes time to drop the gas and fluids!   Don't want to gain more. 

    Hope all is well with everyone else.  VickiSam, you ar always positive! Happy Holidays!  

    Carol

  • tufi000
    tufi000 Member Posts: 745 Member
    edited November 2016 #27
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    Always

    The Ninja never stops! Nor does my admiration. I will continue to selfishly pull on what you are to me while hoping your continued efforts work for you.  Pain and discomfort...so difficult sweet. I am with you every day.  Know this even though I may not post a lot, Our communications....you know luv

     

    Sherry

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #28
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    Thinking about you my friend

    Dear Carol,

    You are in my thoughts and prayers daily.  

    Xoxo,

    Jean

     

  • Grandma X 6
    Grandma X 6 Member Posts: 135
    edited December 2016 #29
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    Christmas ornament

    Dearest Carol, 

    I had your Christmas ornament sent direct to you I hope you like it. I thought of you when I saw it, I don't post very often but follow all my Sister's. You have had a hell of a time, keep the faith you are in my prays.

    Yours truly Cindy from Connecticut

    God Bless You!!!

  • camul
    camul Member Posts: 2,537
    edited December 2016 #30
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    Thanks you all. J

    Sherry my Nija Warrior!   Jean, you are so busy with your travels and babies.  I am surprised u have time for anything.  I love to see survivors staying busy and living life.  I am so proud of everyone who does.  It is not always easy, and Cindy, I will let you know when I receive it!  

    We pinks are an amazing group!

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    edited December 2016 #31
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    Carol - you are in my HEART,

    And part of who I today.

    I will treasure you, ALWAYS and Forever.

    humbled to be your friend.

    Vicki Sam

  • tufi000
    tufi000 Member Posts: 745 Member
    edited December 2016 #32
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    OK Ninja

    Thank you again. You are the reason I can maintain some humilty and manage to hide the b*tch we know I am. How great to see you post!!!!!!!

    I totally agree with Vicki. You are mentor, sensai and my NINJA!!!!!!

    Hope you are comfortable and with you all the way kiddo.

    Sherry

     

     

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #33
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    Sherry - so appropriate

    .. Vicki Sam

  • tufi000
    tufi000 Member Posts: 745 Member
    #34
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    VickiSam said:

    Sherry - so appropriate

    .. Vicki Sam

    Thx

    The ovly thing better than Carol is not having to go through this crap to begin with

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #35
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    AMEN to that!

    as it has been stated ... not a group that you want to belong to... 

  • camul
    camul Member Posts: 2,537
    edited December 2016 #36
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    Like I said you are all too ni

    My nurse came today and my son and family friend were there to ask questions.  The nurse was over an hour late b4 I got a text, then changed the appointment to 2 1/2 hrs later.  She said she wished she had known I was having others present, son said, well wasn't  the appt for 10a?   Did the time change?   That stopped it in is tracts. I like her but that is unprofessional and not one appointment has been on time.  She is my new nurse.

    They are pushing steroids, I say no. Steroid swelling and lymphodema in the legs made it too hard to even walk.  Dont know what is best.  Not functioning due to steroid swelling? or headaches and really bad nausea from the brain swelling with no steroids? With the steroid swelling the tightness in my chest was awful and putting pressure on my lungs.  

    How do I make some of these decisions?  And once I started on steroids, I started having the UTI's of which I am on antibiotic #4.  It is all about quality, trying to figure out the quality!! (Laughing here).  

    I am grateful and thrilled as I get closer to Christmas. My doctors didn't think I would see it.  Will be getting a hospital bed, trying to hold off til after  Christmas.  Too hard to get in/out of bed. Have not left the house in about 10 days and that lasted less than 2 hours.  Hard to lose all independence.  Now they want CNA to start helping with showers.  I am not quite ready for that yet, but my boys are afraid I will fall, so I may do it for them.  They said they worry when they're working that I will fall.  I don't shower when I am home alone.  But if it eases their minds, I may try it.

    Too many decisions!  Wish a margarita was on my menu!  Everyone have a safe holiday season!

    Hugs,

    Carol

  • tufi000
    tufi000 Member Posts: 745 Member
    #37
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    camul said:

    Like I said you are all too ni

    My nurse came today and my son and family friend were there to ask questions.  The nurse was over an hour late b4 I got a text, then changed the appointment to 2 1/2 hrs later.  She said she wished she had known I was having others present, son said, well wasn't  the appt for 10a?   Did the time change?   That stopped it in is tracts. I like her but that is unprofessional and not one appointment has been on time.  She is my new nurse.

    They are pushing steroids, I say no. Steroid swelling and lymphodema in the legs made it too hard to even walk.  Dont know what is best.  Not functioning due to steroid swelling? or headaches and really bad nausea from the brain swelling with no steroids? With the steroid swelling the tightness in my chest was awful and putting pressure on my lungs.  

    How do I make some of these decisions?  And once I started on steroids, I started having the UTI's of which I am on antibiotic #4.  It is all about quality, trying to figure out the quality!! (Laughing here).  

    I am grateful and thrilled as I get closer to Christmas. My doctors didn't think I would see it.  Will be getting a hospital bed, trying to hold off til after  Christmas.  Too hard to get in/out of bed. Have not left the house in about 10 days and that lasted less than 2 hours.  Hard to lose all independence.  Now they want CNA to start helping with showers.  I am not quite ready for that yet, but my boys are afraid I will fall, so I may do it for them.  They said they worry when they're working that I will fall.  I don't shower when I am home alone.  But if it eases their minds, I may try it.

    Too many decisions!  Wish a margarita was on my menu!  Everyone have a safe holiday season!

    Hugs,

    Carol

    Again...THRILLED

    I just love seeing you post!  Made my day Ninja. While I understand these decisions are difficult, there isn't a wrong one as each is a two-sided mess.

    Please be as comfortable as you can. BTW I did sink showers sitting down for forever and since you aren't out chopping wood and getting sweaty I am sure it would suffice and ease the minds of your family.

    I believe your karma account is more than sufficient. Just what you have done here would send it through the roof and for you to have Christmas and wish you a happoy time in the tough times for you and wonderful family.

    Love you to pieces my Ninja

    Sherry

  • tufi000
    tufi000 Member Posts: 745 Member
    #38
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    camul said:

    Like I said you are all too ni

    My nurse came today and my son and family friend were there to ask questions.  The nurse was over an hour late b4 I got a text, then changed the appointment to 2 1/2 hrs later.  She said she wished she had known I was having others present, son said, well wasn't  the appt for 10a?   Did the time change?   That stopped it in is tracts. I like her but that is unprofessional and not one appointment has been on time.  She is my new nurse.

    They are pushing steroids, I say no. Steroid swelling and lymphodema in the legs made it too hard to even walk.  Dont know what is best.  Not functioning due to steroid swelling? or headaches and really bad nausea from the brain swelling with no steroids? With the steroid swelling the tightness in my chest was awful and putting pressure on my lungs.  

    How do I make some of these decisions?  And once I started on steroids, I started having the UTI's of which I am on antibiotic #4.  It is all about quality, trying to figure out the quality!! (Laughing here).  

    I am grateful and thrilled as I get closer to Christmas. My doctors didn't think I would see it.  Will be getting a hospital bed, trying to hold off til after  Christmas.  Too hard to get in/out of bed. Have not left the house in about 10 days and that lasted less than 2 hours.  Hard to lose all independence.  Now they want CNA to start helping with showers.  I am not quite ready for that yet, but my boys are afraid I will fall, so I may do it for them.  They said they worry when they're working that I will fall.  I don't shower when I am home alone.  But if it eases their minds, I may try it.

    Too many decisions!  Wish a margarita was on my menu!  Everyone have a safe holiday season!

    Hugs,

    Carol

    duplicate

    duplicate

  • Kathysuej
    Kathysuej Member Posts: 16
    edited December 2016 #39
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    I am in awe of you...

    I am new to this group, I literally just joined and saw your message. I am 38 years old and have just been diagnosed with multifocal invasive carcenoma (clinical stage 2). I have not yet had surgery or undergone any further testing or treatment. That's all coming soon. But reading your message has me heartbroken, yet leaves me in awe. I am scared at this point. Scared of what can happen in the near future. Scared of what will happen. But I hope that if I ever have to encounter what you are going through, that I can do it with as much dignity and grace as you. I aspire to have that courage, that strength, that has gotten you to where you are today. 
    I am so sorry to hear this news. You will forever be in my thoughts and prayers. YOU ARE A WARRIOR! A TRUE HERO!

  • button2
    button2 Member Posts: 421
    #40
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    camul said:

    Like I said you are all too ni

    My nurse came today and my son and family friend were there to ask questions.  The nurse was over an hour late b4 I got a text, then changed the appointment to 2 1/2 hrs later.  She said she wished she had known I was having others present, son said, well wasn't  the appt for 10a?   Did the time change?   That stopped it in is tracts. I like her but that is unprofessional and not one appointment has been on time.  She is my new nurse.

    They are pushing steroids, I say no. Steroid swelling and lymphodema in the legs made it too hard to even walk.  Dont know what is best.  Not functioning due to steroid swelling? or headaches and really bad nausea from the brain swelling with no steroids? With the steroid swelling the tightness in my chest was awful and putting pressure on my lungs.  

    How do I make some of these decisions?  And once I started on steroids, I started having the UTI's of which I am on antibiotic #4.  It is all about quality, trying to figure out the quality!! (Laughing here).  

    I am grateful and thrilled as I get closer to Christmas. My doctors didn't think I would see it.  Will be getting a hospital bed, trying to hold off til after  Christmas.  Too hard to get in/out of bed. Have not left the house in about 10 days and that lasted less than 2 hours.  Hard to lose all independence.  Now they want CNA to start helping with showers.  I am not quite ready for that yet, but my boys are afraid I will fall, so I may do it for them.  They said they worry when they're working that I will fall.  I don't shower when I am home alone.  But if it eases their minds, I may try it.

    Too many decisions!  Wish a margarita was on my menu!  Everyone have a safe holiday season!

    Hugs,

    Carol

    Holidays

    Carol, how wonderful to see your post. I'm not surprised you made it to Christmas, you are a true fighter!! Here's to seeing you post into the new year. Life is full of surprises. Keep us up to date brave lady! Hugs, Anna

  • camul
    camul Member Posts: 2,537
    #41
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    Christmas was hard!

    Son's dil and gf, did everything.  They woke me up to eat, and again when they opened gifts. My back is just too sore to function.  I am amazed at how fast it is moving downhil.  Too hard to believe 5 weeks ago I was still able to go to the grocery store.  Now h ing trouble getting in and out of the bed.  

    Getting to know hospice help.  Understanding each other and now get text if they are going to be later than 15 minutes which is fair as sometimes the patient b4 me may have some issues, but longer than that does require a text.

    I am realizing my boys have questions and the sw is good.  I have to accept that this is as good as it is going to be.  The nurse said this is pretty much the progression.  I have dilauded as a breakthrough med, just don't like the effects but it is something I have had to use this last week

    I get the hospital bed sometime this week.  

    I think i got got where I just thought this wasn't going to happen, even though in reality I did.

    Happy New Years,

    love Carol

     

     

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