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Disappointed + Frustrated
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Mar 08, 2011 - 3:58 pm
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. |
Joined: Aug 2005
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
Joined: Oct 2009
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".
Joined: Jun 2009
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
Joined: Aug 2010
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!
Joined: Oct 2008
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
Joined: Oct 2009
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!
Joined: Oct 2009
Hey Pepe!
Your posts always cheer me up. I do plan on gaining strength. Hugs back from this Canuck!
Joined: Oct 2009
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!
Joined: Jan 2010
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
Joined: Oct 2009
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!
N/A
This comment has been removed by the Moderator
Joined: Jun 2006
sorry
ahhhhh anne I am so sorry for this delay and frustration
breathe breathe and chill
it will work out....stinks anyway
mags
Joined: Oct 2009
Mags
Thanks, I really appreciate your support. I am breathing better now. And I plan to make the most of these days before treatment.
Joined: Oct 2009
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.
Joined: Dec 2010
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.
Joined: Oct 2009
Thanks Sandy!
I appreciate your thoughts. I think I was in too much shock to be angry.
Joined: Sep 2010
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
Joined: Oct 2009
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.
Joined: Jul 2008
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
Joined: Oct 2009
Lisa
Thanks; I think "bureaucracy" has become a 4 letter word for me! I will hang in!
Joined: May 2005
Anne
I'm sorry to hear this. It stinks. I know how it is to get psyched up for something like this and then not have it happen when you prepared for it. I hope things go well and you get approved and the "show on the road" as they say...
-phil
Joined: Oct 2009
Thanks Phil!
Thanks for cheering me on + for understanding!
Joined: Aug 2008
Make it a positive ...I always did........
no chemo means Im gonna feel good for a little while longer...I understand why you want to get it going but I always relished the thought that food was gonna be good for another week as was my coffee........Love to ya.buzz
Joined: Oct 2009
Thanks Buzzour, my honOURary Canuck!
That is what I decided to do once I got through the stages of shock, disappointment, frustration + disbelief - then I came to acceptance (OK - sort of lol). Too bad I don't drink coffee; make mine a tea!
Joined: Apr 2010
Wow
Reminds me of my hubby's surgery a few years ago, they had him shaved, IV drip in, and the Doctor didn't show up.
I can imagine your disappointed after being hooked up, waiting and then, oh gee, we're sorry, you're not approved yet.
I know you'll get approved, I'm sorry you have to wait for it. But as others have said, enjoy the vacation just a little longer.
I know the mental preparation part really makes you deflate fast when it was all for nothing, very, very frustrating at first.
Next week will be here before you know it, you'll be getting and those little cancer cells are in for a heck of a wallop from it.
Winter Marie
Joined: Oct 2009
Herdizziness
Thanks for your support + kind words, Winter Marie. I am planning to enjoy these next 6 days + try to believe something good will come of it. I hope you are right + those cancer cells won't know what the heck hit them! Hey, I have been thinking, college must be keeping you busy; I don't know how you do it! Should we change your name to "Herbusyness"? lol
Joined: Apr 2010
Anne
Just got home from college, was up until 4:30 AM doing an essay paper, rewrote and printed it several times, took the paper out to hand in, and it was the wrong paper, LMAO!! Fortunately my son was getting ready to come to school to go to his classes and he brought me the right essay. I got my first One Hundred Percent in college in my Political Science class on an essay, it's hanging on the refrigerator now. (yes, I know, little kid mentality, but I'm enjoying it). And well, not so proud of the math quiz, it was a 72, but I'll take it. I actually sat down to the test and my mind went completely blank, took me about 30 minutes to start remembering how to do ANY of the problems. Jeez.
I love your attitude Anne!!!!
Winter Marie
Joined: Oct 2009
Winter Marie
Congratulations on the 100%; I would be hanging that up too! And the Math mark is not shabby either. I remember when I was at university the "mature students tended to do really well. I think they were very focused + had other priorities to juggle. I think you are going to do great! And if you haven't seen the movie "Conviction" I would highly recommend renting it, especially since you want to become a lawyer.
Joined: Aug 2010
Erbitux & Irinotecan.
I was just approved for this treatment today. I will start it tomorrow. The Onc office had to get approved through insurance because treatment is $12,000 each week. Please keep in contact and let me know how this treatment works for you.
Robin
Joined: Oct 2009
Robin
We will just have to be treatment buddies! Let's definitely keep in touch; if my new start goes as planned (next Tuesday), you will be the leader but we will be so close in timing that it will be great to compare notes. I live in Canada, + it seems that our drug costs are much lower than in the US but I am sure this treatment is still expensive. Where in Ohio do you live? I lived in Cincinnati from 1986-1988 when I was newly married. Good luck tomorrow.
Joined: Oct 2009
Anne:
Dang, sorry for your disappointment. It will come so enjoy the next few days without side effects because in the big picture, six days wait will be ok.
You have a most encouraging fighting spirit.
Take care my friend - Tina
Joined: May 2008
Anne
Sorry,, Darn it, Sometimes things don't go our way but i am sure u will get back on tract soon.
hugs michelle
Joined: Oct 2009
Thanks Michelle!
I really appreciate your kind words, especially as you have so much on your mind now. I am thinking about you + sending you warm thoughts from a snowy place that you will have a successful, easy as possible surgery tomorrow.
N/A
This comment has been removed by the Moderator
Joined: Oct 2009
oops!
Sorry, I doubled up!
Joined: Oct 2009
Graci, you are right!
Terrible communications is right! Talk about "lunchbag letdown" (that is from an old tv commercial; don't know if it aired in your parts or not). I am sorry for that dental experience. I am truly planning to enjoy my break. This afternoon I think my husband + I are going to a furniture store where they are having a huge sale as they are selling the business. We need a "boardroom" table for our little business + hope they have something.
By the way, we bought fresh wild salmon from the place we got the buffalo meat. I think it was the most delicious salmon I have ever had. It just melted in the mouth. My husband bought this huge piece + there were 5 of us. I thought we would be eating it for days, but there was hardly any left; it was so good. Even our younger daughter who doesn't really like salmon, loved it. Take good care, Graci! Thanks for your good thoughts!
Joined: Oct 2009
Thanks Tina!
Tina,
Thanks so much for all of your kind words. I definitely plan to enjoy these days + treat them as a gift. Once I know for sure the paperwork is order I will breathe a huge sigh of relief. You + George take care too.
Joined: Nov 2010
brutally frustrating day
hi anne,
so sorry your day was so bad.
I hope its approved for you soon and that you are strong and positive when next tuesday
comes around. that my infusion day as well by co-incidendce.
hugs,
Pete
Joined: Jun 2010
I am so sorry for your
I am so sorry for your frustrating day! I wish I could make it better for you, I really do. I, too am sending you hugs....
Chriss
Joined: Oct 2009
Chriss
You did make it better with your support + hugs. I just got the news that I am approved for next week.