It Just Doesn't Get any Easier

maglets
maglets Member Posts: 2,576 Member
edited April 2014 in Colorectal Cancer #1

On Monday of this week I had a Ct scan of ab and chest.  My follow-up appt with onc was April 30....last night the nurse phoned and asked to see us at one today Thursday.  I begged her  to just give some hint of what was up but noooooooo she knows the doc knows the radiologist knows but I don't know.  Of course I am assuming the very very worst....here we go occurence number 4. 

If there were one thing I would campaign for it would be the way results are delivered to the patient.  I do not know if the Canadian system is different or maybe it is just small town Canada....no email.....you have to make an appointment and show up. I have heard of others here who have results emailed to them.....

and so the waiting that we all know and don't love.....the over acitive imagination....the terror....the revisiting of all the surgeries and chemo we have already experienced.....dang......I did not want to do this again.....

later......mags

«13

Comments

  • PatchAdams
    PatchAdams Member Posts: 271
    #2
    Oh Mags........

    I just had my scans and cringe every time the phone rings.  So afraid I'll get the call you just got.  In fact, I'll get a 'don't forget your doctor's office visit' call and when I see the number on caller ID, I will be physically sick. 

    I've been thinking about you a lot lately because I'm close friends with a former member who really looks up to you.  She had her scans Tuesday and won't get her results until next week. No emails here. In fact, in going on 6 years, I've NEVER spoken to my onc on the phone or by email. It's not done. 

    We KNOW they have the answers pretty quickly so why can't they just go ahead and schedule appointments for right away to spare us this agony.

    I'll contact my friend right now and we'll pray that this is either NOTHING or something that a PET scan will rule out.  Be sure to update when you can. 

     

    Patch 

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #3
    I am sorry you have to go

    I am sorry you have to go through the waiting game. I am finally at the point that I can corrispond with my oncologist through email. I thinkw we should all have access to the report the same time the doctors do. It's our life and we deserve to know immediately.

  • maglets
    maglets Member Posts: 2,576 Member
    #4
    janderson1964 said:

    I am sorry you have to go

    I am sorry you have to go through the waiting game. I am finally at the point that I can corrispond with my oncologist through email. I thinkw we should all have access to the report the same time the doctors do. It's our life and we deserve to know immediately.

    Jeff

    Hi Jeff....I know it is crazy ....it is just a question of a few hours but the stress is so intense.  I think I started to look at my l own track record in these last few months.....so so so many of us with reoccurence....how could I possibly escape numero 4. What is the latest with you Jeff????/ mags

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    I'm with you on this

    The waiting is so very hard. 

    After my two jumps in CEA I have to wait until next Tuesday for my PET Scan, and then I didn't have an appointemnt with the Onc until the 28th. Thats ONE WHOLE MONTH after my first CEA rise. 

    Luckily I got in on a cancellation, and will see my Onc the day after my PET (16th). 

    I have learned not to worry too much, I guess its just in my nature, and I realize that others aren't so lucky. 

    I will be thinking of you all day, and will wait for your post, so that I know where to focus my prayers (or good thoughts and vibes). 

    HUGE hug of comfort.   image

    SUE

  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    I am putting my arms around you....hugging you HARD!!!!

    I will keep you in my thoughts today, dearheart!!!

     

    (maybe it is a new research project that needs participants that are clean after a reoccurance...and the deadline is before the 30th!)

     

    BIG hugs, Kathi

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #7
    Dearest Mage

    I agree that it makes no sense to have to wait for the news.  I feel every patient should have the right to determine whether or not they want to be able to access results in "real time"(be that by phone, email or other means) and not have to wait for the doc appointment.  Particularly for those of us who have been "around the block" a time or two or three.

    My prayers are with you as you wait and are at your appointment.  May the issues be ruled out by further testing.

    Hugs and love,

    Marie who loves kitties

  • Nana b
    Nana b Member Posts: 3,030 Member
    #8
    Trubrit said:

    I'm with you on this

    The waiting is so very hard. 

    After my two jumps in CEA I have to wait until next Tuesday for my PET Scan, and then I didn't have an appointemnt with the Onc until the 28th. Thats ONE WHOLE MONTH after my first CEA rise. 

    Luckily I got in on a cancellation, and will see my Onc the day after my PET (16th). 

    I have learned not to worry too much, I guess its just in my nature, and I realize that others aren't so lucky. 

    I will be thinking of you all day, and will wait for your post, so that I know where to focus my prayers (or good thoughts and vibes). 

    HUGE hug of comfort.   image

    SUE

    Pray rings

    Prayers your way Mags.    

     

    Dear Lord we ask you to join our forum and listen for your call, from Maglets, and all us here who are in pain and sorrow.   Please give us healing,  blessings and your everlasting love.  Amen

     

    This  prayer isn't to offend anyone who does not follow The Lord. 

     

     Rachel 

     

    ps. My ONC will call me with results if I want but my follow up appointment nevers goes past two days. 

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #9
    maglets said:

    Jeff

    Hi Jeff....I know it is crazy ....it is just a question of a few hours but the stress is so intense.  I think I started to look at my l own track record in these last few months.....so so so many of us with reoccurence....how could I possibly escape numero 4. What is the latest with you Jeff????/ mags

    Dont think because others

    Dont think because others have had recurrences that your next.

    I am doing well. I start my third treatment tomorrow. I have options lined up for SBRT and Theraspheres but will hold onto those options until i see what the next scan shows. No date for a scan yet but will talk to onc about it tomorrow. I expect good results. The abdominal pain the led to the recurrence is virtually gone now.

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #10
    Mags
    I hope it's nothing and maybe they want to do a PET and make sure it's nothing. I know what you mean about results, I just got my blood drawn for my CEA and I'm waiting for the nurse to call me back. It's like the hours are days! I get my CT's at the hospital where I work and I just don't have the patience to wait for dr to call or an appt, so I look up the results on the computer. It is so aggravating, how would they like to wait. Please update us when you can.
    Sandy
  • PatchAdams
    PatchAdams Member Posts: 271
    #11
    Momof2plusteentwins said:

    Mags
    I hope it's nothing and maybe they want to do a PET and make sure it's nothing. I know what you mean about results, I just got my blood drawn for my CEA and I'm waiting for the nurse to call me back. It's like the hours are days! I get my CT's at the hospital where I work and I just don't have the patience to wait for dr to call or an appt, so I look up the results on the computer. It is so aggravating, how would they like to wait. Please update us when you can.
    Sandy

    HOURS?

    I sometimes have to call after 2 weeks for my CEA results.  They always have some excuse!  

     

    PRAYING FOR MAGS!  I don't know her time zone but THINK it's probably the same as New York / New England so praying, praying, praying! 

     

  • PatchAdams
    PatchAdams Member Posts: 271
    #12
    Nana b said:

    Pray rings

    Prayers your way Mags.    

     

    Dear Lord we ask you to join our forum and listen for your call, from Maglets, and all us here who are in pain and sorrow.   Please give us healing,  blessings and your everlasting love.  Amen

     

    This  prayer isn't to offend anyone who does not follow The Lord. 

     

     Rachel 

     

    ps. My ONC will call me with results if I want but my follow up appointment nevers goes past two days. 

    AMEN

    I agree in prayer! 

  • maglets
    maglets Member Posts: 2,576 Member
    #13
    good

    okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

    you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

     

    what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

    thank you dear friends......may I do the same.......with great love and thanks.....mags

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #14
    maglets said:

    good

    okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

    you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

     

    what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

    thank you dear friends......may I do the same.......with great love and thanks.....mags

    Great news Mags!  I feel

    Great news Mags!  I feel frustrated with that too.  We read so much into their comments and non comments.  I've mentioned it to my husbands onc and she said she understands but it doesn't change how she does things.  They have no idea how loooong the wait is to us.

     

    good news tho...go celebrate!

  • PatchAdams
    PatchAdams Member Posts: 271
    #15
    Maggie

    I just cannot begin to tell you how thrilled I am. I'm sorry you had to agonize for nothing but I called a church group of ladies and asked them to pray with me and just was heartbroken that this might be bad news.

    I am SO happy! Going to call Diane right now! She'll be jumping for joy! 

     

    Patch

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #16
    maglets said:

    good

    okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

    you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

     

    what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

    thank you dear friends......may I do the same.......with great love and thanks.....mags

    Say no more. Its time for...

    imageimageimage

    Not one, but three happy man dancing

    May you never have another scare like that again. 

    I am sorry that their policy is one that leads to hours of anxiety. 

    May you do something special to celebrate, and to breath deeply in the knowledge that all is well.

  • wolfen
    wolfen Member Posts: 1,324 Member
    #17
    jen2012 said:

    Great news Mags!  I feel

    Great news Mags!  I feel frustrated with that too.  We read so much into their comments and non comments.  I've mentioned it to my husbands onc and she said she understands but it doesn't change how she does things.  They have no idea how loooong the wait is to us.

     

    good news tho...go celebrate!

    Mags

    Just holding my breath reading through your post & all the caring replies until I reached your "GOOD" update. The waiting game is played in JBG's scans also. Like rubbing salt into the wound.

    She is due to be released from the hospital today, as far as I know. She will call me, probably tomorrow, as she lives so far from the hospital. She sounded pretty good a couple of days ago.

    Luv,

    Wolfen

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #18
    maglets said:

    good

    okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

    you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

     

    what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

    thank you dear friends......may I do the same.......with great love and thanks.....mags

    Wonderful News!

    Sorry you and hubby lost a night's sleep over this, but cheer for the outcome!

    Hugs in bunches...now celebrate then take a nap

     

    Marie who loves kitties

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #19
    wolfen said:

    Mags

    Just holding my breath reading through your post & all the caring replies until I reached your "GOOD" update. The waiting game is played in JBG's scans also. Like rubbing salt into the wound.

    She is due to be released from the hospital today, as far as I know. She will call me, probably tomorrow, as she lives so far from the hospital. She sounded pretty good a couple of days ago.

    Luv,

    Wolfen

    Hoping

    you post this in an update, Wolfen. 

    So happy to hear JBG is on her way home.

  • Fucc
    Fucc Member Posts: 92 Member
    #20
    I am so glad to hear that you

    I am so glad to hear that you recived good news :)  I am also in Canada.  I am being treated at Princess Margaret.  They also refuse to talk to you on the phone or by email.  I need to go in to get any results or any information from my doctors.  I tried to get my oncologist to call me, but he refuses.  His reasoning is that whether the news is good or bad he wants to see you during his clinic hours.  He maintains the same policy for all news so as to help with stress because it is always the same.  I disagree with this.  I find just sitting in the clinic waiting to see him causes a high amount of stress and anxiety....

     

     

  • ron50
    ron50 Member Posts: 1,723 Member
    #21
    maglets said:

    good

    okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

    you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

     

    what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

    thank you dear friends......may I do the same.......with great love and thanks.....mags

    Big Hugs Mags

       If we we were at an amusement park it would cost a fortune for the ride we are on. Some of us hold on tightwith everything clenched. Others wave their arms in the air and scream their heads off. What it's all about is when the rollercoaster stops and you find you have survived till the next ride. Well you live to ride another day Mags.Surviving survival ain't easy. Ron.

Discussion Boards