Disappointed + Frustrated

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AnneCan
AnneCan CSN Member Posts: 3,673 Member
in Colorectal Cancer #1
Today was supposed to be my first round of my new treatment, erbitux, along with irinotecan. My port was accessed + I had saline solution dripping. I waited and waited. Finally a nurse came in + said there was a "paperwork" issue. Cancer Care Ontario, who funds + approves cancer treatments had not yet approved me for erbitux. They consider erbitux a third line treatment, after folfox + folfiri. I was on folfox for 5 weeks when I had radiation, but the tumours on my liver progressed + I was put on folfiri + avastin. Apparently Cancer Care Ontario is unaware that I had been on folfox, so they think I should be going on that. My onc came over to the chemo suites to try to straighten this out + to talk to me, but it was getting late so even if it was approved today they wouldn'g have time to give me the 4+ hours of treatment. My onc was hoping that if it was approved today I would have treatment tomorrow, but apparently the earliest they have a time slot for me is next Tuesday. I have been off chemo for several weeks now, + was hoping to get back on track today. My onc is fairly confident I will get approval but this was a brutally frustrating day. I was worried about starting this treatment + how it would go + prepared myself mentally only to not get the treatment. Now we are waiting to hear if I got approved or not.
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Comments

  • KathiM
    KathiM CSN Member Posts: 8,028 Member
    #2
    I am wrapping my arms around you, sweet soul....
    Can you feel them? Warm and comforting. Safe.

    The approval will come, you will do great (as usual), and now is the time to just step back and breathe!!!!

    BIG dutch knuffels (hugs), Kathi
  • Sundanceh
    Sundanceh CSN Member Posts: 4,392 Member
    #3
    Anne:)
    Disappointing to be sure, Anne. And if I know my Annie, I know that she was "full speed ahead" with guns drawn, ready to attack, attack and attack! A gal after my own heart:)

    Bureaucracy, huh? Looks like some miscommunication obviously, but hopefully, they will get you straightened up and back on your schedule. My place ran out of Leucavorin 2 weeks ago, so I missed that - go back in tomorrow for another infusion myself, and hoping that the drug is there.

    Isn't it Crazy - we go nuts when we can't get our "poison." We don't want it, but we don't NOT want it either. Ah, the Chemo Wars - woops that's another post:)

    Annie, while I know you're anxious - do you feel any better after all of these weeks of not having chemo in your system? I cannot wait to get to one day when I can feel like that again.

    You go ahead and "Rage Against the Machine" anytime that you need to. Wish I had my Visa and a plane ticket and I'd be jetting across the border to hug you about now. I guess it will have to wait......

    -Craig
  • pepebcn
    pepebcn CSN Member Posts: 6,331 Member
    #4
    Sundanceh said:

    Anne:)
    Disappointing to be sure, Anne. And if I know my Annie, I know that she was "full speed ahead" with guns drawn, ready to attack, attack and attack! A gal after my own heart:)

    Bureaucracy, huh? Looks like some miscommunication obviously, but hopefully, they will get you straightened up and back on your schedule. My place ran out of Leucavorin 2 weeks ago, so I missed that - go back in tomorrow for another infusion myself, and hoping that the drug is there.

    Isn't it Crazy - we go nuts when we can't get our "poison." We don't want it, but we don't NOT want it either. Ah, the Chemo Wars - woops that's another post:)

    Annie, while I know you're anxious - do you feel any better after all of these weeks of not having chemo in your system? I cannot wait to get to one day when I can feel like that again.

    You go ahead and "Rage Against the Machine" anytime that you need to. Wish I had my Visa and a plane ticket and I'd be jetting across the border to hug you about now. I guess it will have to wait......

    -Craig

    Anne don't worry you will be approved I'm praying for that!
    And a few days more in our fight is not a big problem, just thing you god some days mor to get some more strength !
    Hugs Dear Canuck!
  • Lovekitties
    Lovekitties CSN Member Posts: 3,364 Member
    #5
    Of course you are
    disappointed and frustrated! Who wouldn't be? Seems like your treatment center needs some volunteer help to insure that all approvals are in BEFORE appointments. I would offer but my passport expired, so I would have to sneak in. I doubt they would let me do it from a jail cell!

    Also sounds like there is a glitch in the approval process. If there are conditions for a treatment you would think that it would be required info on the paperwork instead of someone having to hunt thru the computer, file cabinets or stone tablets to verify.

    Don't worry about the delay. Take it as a sign that you are to do something wonderful for yourself this week that you might not have felt up to if you had received treatment today.

    Hoping that they get it all straightened out quickly so it will be one less thing on your worry list.

    Hugs,

    Marie who loves kitties
  • johnnybegood
    johnnybegood CSN Member Posts: 1,117 Member
    #6
    pepebcn said:

    Anne don't worry you will be approved I'm praying for that!
    And a few days more in our fight is not a big problem, just thing you god some days mor to get some more strength !
    Hugs Dear Canuck!

    oh how i know
    how you are feeling.wont go into all of the details but same thing happened to me today.i was supposed to go for my first treatment tomorrow but because of peoples stupidity(and i told them more than once how it should be done but they would not listen)i will not start until next wednesday.ohh how my surgen is going to be pissssed.dont you just love it....Godbless...johnnybegood
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • maglets
    maglets CSN Member Posts: 2,576 Member
    #8
    unknown said:

    This comment has been removed by the Moderator

    sorry
    ahhhhh anne I am so sorry for this delay and frustration


    breathe breathe and chill

    it will work out....stinks anyway

    mags
  • Love2Cats
    Love2Cats Member Posts: 127
    #9
    That's an awful thing to do to a patient
    That's a terrible thing to happen. I hope they get it straightened out, so you can resume treatment immediately. I would have gotten so mad, that the IV would have started flowing backwards.
  • Lori-S
    Lori-S CSN Member Posts: 1,277 Member
    #10
    Dang it Anne!
    I'm sorry for your disappointment. I'm sure they will work it out soon. Sometimes we just have to have way more patience than we think we can even muster. Hang in there, I'm thinking of you. HUGS
  • lisa42
    lisa42 CSN Member Posts: 3,625 Member
    #11
    Grrr
    It's so frustrating to hear of someone who was compromised getting treatment due to "bureaucracy"! Ugh! Sorry you had to have had that experiece.
    Hopefully it will all be resolved soon.

    Hang in there!
    Lisa
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #12
    KathiM said:

    I am wrapping my arms around you, sweet soul....
    Can you feel them? Warm and comforting. Safe.

    The approval will come, you will do great (as usual), and now is the time to just step back and breathe!!!!

    BIG dutch knuffels (hugs), Kathi

    I can feel them!
    Kathi, Thanks so much for the hugs; I really needed them. Thanks also for your confidence that I will "do great".
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #13
    Sundanceh said:

    Anne:)
    Disappointing to be sure, Anne. And if I know my Annie, I know that she was "full speed ahead" with guns drawn, ready to attack, attack and attack! A gal after my own heart:)

    Bureaucracy, huh? Looks like some miscommunication obviously, but hopefully, they will get you straightened up and back on your schedule. My place ran out of Leucavorin 2 weeks ago, so I missed that - go back in tomorrow for another infusion myself, and hoping that the drug is there.

    Isn't it Crazy - we go nuts when we can't get our "poison." We don't want it, but we don't NOT want it either. Ah, the Chemo Wars - woops that's another post:)

    Annie, while I know you're anxious - do you feel any better after all of these weeks of not having chemo in your system? I cannot wait to get to one day when I can feel like that again.

    You go ahead and "Rage Against the Machine" anytime that you need to. Wish I had my Visa and a plane ticket and I'd be jetting across the border to hug you about now. I guess it will have to wait......

    -Craig

    Thanks Craig!
    I really appreciate the confidence you have in me. I am "full speed ahead" after a short time when I felt I was knocked over by a big bowling ball. Now my plan is to enjoy the 6 days I have until treatment, + I am planning to get approved for erbitux! It was definitely a case of "miscommunication". My husband left a message for the pharmacist @ my cancer centre who is the liason for the approval. He called back ~ 7 pm tonight. It sounds like he thinks there will be an answer tomorrow.

    I know what you mean about the poison + how we go nuts when we don't get our chemo - it really is a love/hate relationship.

    I really want to wish you good luck tomorrow; I am so hoping this treatment will finish knocking the cr@# out of your cancer.

    I am not sure if I feel better after all these weeks off chemo or not; it really stresses me to not feel like anything is fighting the cancer. I have been really tired. This past weekend I pushed myself harder to do more + I succeeded. After today's adventure, my husband said let's use the next 6 days to buid me up with diet, rest, exercise. We have our little business + have had some stress there - someone quit, replacement quit after 2 days, demanding employees etc.

    Hey, for a trip here you need your passport (a fallout after 911). I would love to meet you + Kim; that is on my bucket list. We'll take you to a hockey game lol + a sailboat ride on Lake Ontario.

    Thanks for your support + friendship!
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #14
    Lovekitties said:

    Of course you are
    disappointed and frustrated! Who wouldn't be? Seems like your treatment center needs some volunteer help to insure that all approvals are in BEFORE appointments. I would offer but my passport expired, so I would have to sneak in. I doubt they would let me do it from a jail cell!

    Also sounds like there is a glitch in the approval process. If there are conditions for a treatment you would think that it would be required info on the paperwork instead of someone having to hunt thru the computer, file cabinets or stone tablets to verify.

    Don't worry about the delay. Take it as a sign that you are to do something wonderful for yourself this week that you might not have felt up to if you had received treatment today.

    Hoping that they get it all straightened out quickly so it will be one less thing on your worry list.

    Hugs,

    Marie who loves kitties

    Marie
    Thanks so much for your understanding + support. My passport has also expired - I need to re-apply. My passport, driver's license + health card all needed renewal at the same time last year - I got the latter two done, but ran out of steam for the passport. I want to get it, partly in case I ever need treatment only available in the US.

    You are right; there is a glitch in the system.

    I plan to do just what you said + enjoy the next six days as much as I can.

    Thanks again for all your understanding + support.

    Hugs back!
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #15
    unknown said:

    This comment has been removed by the Moderator

    Kathy
    Thank-you for all your comments. I am not sure if we have "compassionate requests" but I do know my onc will go to bat for me. It is a setback but I will get back on track.
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #16
    Love2Cats said:

    That's an awful thing to do to a patient
    That's a terrible thing to happen. I hope they get it straightened out, so you can resume treatment immediately. I would have gotten so mad, that the IV would have started flowing backwards.

    Thanks Sandy!
    I appreciate your thoughts. I think I was in too much shock to be angry.
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #17
    Lori-S said:

    Dang it Anne!
    I'm sorry for your disappointment. I'm sure they will work it out soon. Sometimes we just have to have way more patience than we think we can even muster. Hang in there, I'm thinking of you. HUGS

    Thanks Lori!
    Patience is definitely a skill I have had to hone during this process. Thanks for thinking of me. You + your son are constantly in my thoughts.
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #18
    lisa42 said:

    Grrr
    It's so frustrating to hear of someone who was compromised getting treatment due to "bureaucracy"! Ugh! Sorry you had to have had that experiece.
    Hopefully it will all be resolved soon.

    Hang in there!
    Lisa

    Lisa
    Thanks; I think "bureaucracy" has become a 4 letter word for me! I will hang in!
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #19
    maglets said:

    sorry
    ahhhhh anne I am so sorry for this delay and frustration


    breathe breathe and chill

    it will work out....stinks anyway

    mags

    Mags
    Thanks, I really appreciate your support. I am breathing better now. And I plan to make the most of these days before treatment.
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #20
    pepebcn said:

    Anne don't worry you will be approved I'm praying for that!
    And a few days more in our fight is not a big problem, just thing you god some days mor to get some more strength !
    Hugs Dear Canuck!

    Hey Pepe!
    Your posts always cheer me up. I do plan on gaining strength. Hugs back from this Canuck!
  • AnneCan
    AnneCan CSN Member Posts: 3,673 Member
    #21
    johnnybegood said:

    oh how i know
    how you are feeling.wont go into all of the details but same thing happened to me today.i was supposed to go for my first treatment tomorrow but because of peoples stupidity(and i told them more than once how it should be done but they would not listen)i will not start until next wednesday.ohh how my surgen is going to be pissssed.dont you just love it....Godbless...johnnybegood

    Johnnybegood
    You + are in a special club I guess. I am sorry this happened to you too. It is really annoying. Good luck to you!

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