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Bearteggie's avatar
Bearteggie
Member
12 years ago

In limbo

Well, I have now been to see the surgeon twice since my mastectomy on 20/11/2013.  He is very happy with my recovery and I am now waiting on letter from hospital with oncology appointment. 

Have had a few melt downs as I was told after the first visit 0n 3/12  that they would be having multidisciplinary meeting on 5/12 and I could expect a letter in a few days. 

Well, they had their meeting but one of my results was still pending so they couldn't finalise my treatment plan etc.  Breast care nurse told me though that I would definitely be having 6 rounds of chemo and 6 weeks radiotherapy.  She assured me that they now had the pending result and that they would discuss at the next multidisciplinary meeting on 12/12 and that a letter would then follow. 

No letter!  I phoned  the Breast Care Nurse last Monday and she checked computer to see if appointment had been made but there hadn't.  She told me to ring her back on Thursday if I still hadn't heard anything.  I called her again and still nothing.  She has emailed the oncology department and is now waiting on them to get back to her.  Apparently things" slow down at Christmas".   She is a lovely nurse and the poor thing sounded so busy and frustrated with the system. 

I am trying not to panic but my experience as a medical receptionist means I know there can be slip ups in the system.   It would have been nice to have had my appointment with oncologist before Christmas and New Year out of the way so that I know more about what is going to happen and when it will begin.

After all, I have my wig and turbans and am all ready to go.  :)

Maybe I am being impatient because I am scared.

Joy 

 

 

10 Replies

  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    Hi Janey

    Your situation was very similar to mine.  Thank you for understanding and sharing your story with me as it gives comfort and encouragement.

    Now that I have my appointment I was able to enjoy both Christmas Day and Boxing Day.  I am very tired though today and still stiff and sore from my surgery 5 weeks ago.

    Only three more sleeps until I have my appointment with oncologist which is a relief.  A little nervous but it can't be any worse than hearing the initial diagnosis.  I hope anyway.

    I hope you had a lovely Christmas with your loved ones too Janey and all the very best for 2014.

    Love Joy xx

     

  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    Hi Janey

    Your situation was very similar to mine.  Thank you for understanding and sharing your story with me as it gives comfort and encouragement.

    Now that I have my appointment I was able to enjoy both Christmas Day and Boxing Day.  I am very tired though today and still stiff and sore from my surgery 5 weeks ago.

    Only three more sleeps until I have my appointment with oncologist which is a relief.  A little nervous but it can't be any worse than hearing the initial diagnosis.  I hope anyway.

    I hope you had a lovely Christmas with your loved ones too Janey and all the very best for 2014.

    Love Joy xx

     

  • rivergum's avatar
    rivergum
    Member
    12 years ago
    Sending you lots of hugs and hope you get your appointments soon. XXX
  • rivergum's avatar
    rivergum
    Member
    12 years ago
    Sending you lots of hugs and hope you get your appointments soon. XXX
  • Hazel_M's avatar
    Hazel_M
    Member
    12 years ago

    The waiting game is so hard to play, I'm sorry you are still in limbo. I had my op on 15/10 and 1st chemo on 18/11. I can understand your anxiety at maybe falling through the cracks in the system. I know that the RBWH up here does slow down over Xmas, It's quite strange really, you would think with Oncology that wouldn't be the case. It seems you are being punished  in a way for the timing of your illness. I have Xmas Eve and New Years Eve appointments and I'm expecting quite a wait because of less staff. My anxiety is just below the surface, after my 10 hour ordeal on the 10/12, I'm anticipating another marathon day on the 31/12. But I won't let them lose my name again, you are right to keep checks on what's going on. The silver lining will be that you will be well on Xmas Day, take care, 

    Hazel xx

  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    Hi Tonya

    Yes, I got the pending result but the surgeon said he we leave the discussion of what it all meant to the oncololgist.  I am not quite 5 weeks post op yet, so I guess I am jumping the gun a bit.  If I don't get an answer of some sort by Monday afternoon, I will call my GP and ask her to follow up for me.  She and everybody else keeps asking "have you got your plan yet?"  

    I have made a good recovery, I think.  No infections and I have been doing my exercises every three hours and can now extend both arms totally above my head.  It hurts but I can do it.

    I haven't been fitted for a prosthesis yet and I will follow this up in the new year.  I am sure nothing could be set in motion before the New Year.  Great to hear when you had yours fitted, helps me know I am on the right track.

    Thank you for taking the time to reassure me that I am doing the right thing with being a bit of a squeeky wheel.

    I hope you have a great Christmas.

     

    Joy xx 

  • TonyaM's avatar
    TonyaM
    Member
    12 years ago

    How frustrating for you.It's a bad time of year to try and get all your appointments lined up.Can you get the "pending result"over the phone?Keep jumping up and down cos the noisy wheel gets the oil! It's not like you want to start chemo tomorrow - you just want a definite date to see the oncologist. I think I started my chemo approximately 7 weeks after my mastectomy(2010).I know they like you to be healed well and truly from surgery before chemo. Sounds like you've made a good recovery.Have you been fitted for a prosthesis yet?I went at about 6 weeks post op for that.Good luck,hope you get some action before xmas.         Tonya xx

  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    Hi Robyn,

    Yes, I am probably being very impatient and I do thank you for reassuring me and you a right, I will be feeling well enough physically to enjoy Christmas.  I will try to put it out of my mind for now and enjoy the family.  I think I had forgotten my mantra:  Worrying about the "what ifs of  tomorrow" is only going to rob me of  the blessings of today".  

    Thank you for your feel good vibes, I feel better already.

    Have a wonderful Christmas too Robyn.

    Love Joy xx

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    It's the worst isn't it Joy? The waiting!Im sure you will hear something shortly,and things will start moving quickly.Try to put it from your mind if you can(probably impossible)and enjoy Christmas with the family:)You are doing the right thing though,keeping on their backs,and as someone that works in the medical profession,I am sure you know that!At least with chemo starting after Christmas,you will 'feel' ok on Christmas Day , if that makes sense.You are probably a little scared,but there is no need to be.I was terrified a few short months ago,and look at me now,chemo finished.Sending you some feel good vibes Joy,and wishing you a peaceful Christmas. xoxo Love Robyn.
  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    It's the worst isn't it Joy? The waiting!Im sure you will hear something shortly,and things will start moving quickly.Try to put it from your mind if you can(probably impossible)and enjoy Christmas with the family:)You are doing the right thing though,keeping on their backs,and as someone that works in the medical profession,I am sure you know that!At least with chemo starting after Christmas,you will 'feel' ok on Christmas Day , if that makes sense.You are probably a little scared,but there is no need to be.I was terrified a few short months ago,and look at me now,chemo finished.Sending you some feel good vibes Joy,and wishing you a peaceful Christmas. xoxo Love Robyn.