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Dark days



  • arpiearpie Mid North Coast, NSWMember Posts: 6,088
    Well done, @ddon - make sure you take your pain meds NOW - don't wait until 1am - and then take them regularly so the pain doesn't break thru again.  Take care, sleep tight & all the best for your results xxx

  • Anne65Anne65 Member Posts: 405
    @ddon So lovely to hear from you. i have been thinking of you & hoping you are OK. So good to hear you have good care around you. Now its time to focus on YOU & give yourself time to heal physically & emotionally. We are all hear for you. One step at a time & youve just jumped the biggest one!! Love & gentle hugs xx
  • NefertariNefertari Member Posts: 288
    @ddon so glad that bit is over for you too, it does help to hear from others in the same boat.  I don't think I would have made it this far if I didn't have this forum to uplift me :)
  • arpiearpie Mid North Coast, NSWMember Posts: 6,088
    Great news.   
  • Anne65Anne65 Member Posts: 405
    @ddon Such wonderful news that margins are clear. The worst is over so try to focus on the positive & reassure your family especially your Dad, that his little girl will be OK!! Its natural that family are worried & they would do anything to take your pain away. It is hard to see them  like that but reassure them that the worst is over so by having your boob gone, the cancer goes with it! You will continue to receive the care & treatment you need so rely on your medical team to look after you & give you the confidence to look forward to a wonderful future. You are doing really well. love & hugs xx
  • ddonddon Member Posts: 348
    Well, my emotions are all over the place - guessing that’s normal - and my nights are punctuated with imagining how many small tumours are happily growing in distant places, and will I see my 7 year old turn 8, and my days trying to get on with things and carry on.  My first oncology appointment is next Thursday and I am petrified he will want a PET scan and will find I am stage 4 before I begin. My CTs were clear. So many fears. And then there is the chemo and I am so afraid. 
     Then I put my big girl pants on and say I can do this (because, what choice do I have) and forward I go. 
     My portecath is truly a painful thing - more painful than my mastectomy and acilla sites. While the immediate area is improving I have tenderness in my upper arm which is newish. Not swollen or bruised, no fever, just very tender and stiff.  My chest is bony and I have no padding but it seems to be more miserable than it should be. 
     I am complaining an awful lot. Just struggling right now with many fears. 
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,950
    @ddon My portacath was also more painful than my mx or anx clearance. Quite normal. Whinge away. You are quite within your rights to. I was constantly pulling my big girl pants over my head because it was easier that way. I got through. Sending big hugs.
  • ddonddon Member Posts: 348
    Thank you Blossom ( loving your username). I have read up on these portacath and nowhere says that they should be this bad after almost two weeks. 48 hours blah blah and I get scared that there’s something wrong. My upper arm feels so sore and stiff. Back to the ibuprofen and Panadol. 
    If I pull my big girls pants over my head I may just leave them there 😫
  • SisterSister Adelaide Hills, SAMember Posts: 4,957
    @ddon My port was very tender for a few weeks.  Then it became just uncomfortable for a long time - felt heavy and I was unable to sleep on that side as the compression would cause some pain so slept on my back for months.  It settled down about the same time as I stopped needing it, from memory.  However, I am still extremely glad that I had it as, once it was working properly, it took so much of the difficulty away when getting treatment and it means that my veins have held up which was pretty important to me given the other arm is not usable.

    I would suggest that you mention it to your doctor and certainly to the nurses when they come to jab you - they need to know about it even if for no other reason than to take extra care not to hurt you.  You can get numbing cream to apply before treatment if you need to but I never used it and was fine.
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,950
    I used the numbing cream EVERY time. Problem was the portacath only worked half the time so they went digging in my arm. I should have lathered up all over in the numbing cream just in case.
  • ddonddon Member Posts: 348
    Thanks Sister and Blossom. I get scared that the tubing has moved or something, or caused a clot or bleeding because of the soreness in my arm. I cant understand why the tenderness is in that area. Anyway it hasn’t become any worse over the past few days so I guess I can just check with the surgeon at my next appointment on Monday.  It’s now 12 days and I am worried I will never get used to it. Just hope it works well enough that it’s worth the misery. I will take your advice and use the numbing cream. Sort of tired of things hurting 😊

  • Beryl C.Beryl C. Member Posts: 270
    ddon I've had a port for eight years and other than a few days following the insertion I have never experienced pain or discomfort. Suggest you discuss this with your GP or Breast Care nurse.
  • ddonddon Member Posts: 348
    Thanks Beryl, I will do that. I have an appointment this afternoon. The breast care nurse I spoke to right after the surgery told me they can be very painful. I just don’t know if it’s normal to go on this long. 
  • jennyssjennyss Western NSWMember Posts: 1,436
    Dear @ddon,

    Hope you got some good advice/info yesterday - let us know.
    Best wishes from jennyss in Western NSW
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