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Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?

TasiaTasia Sydney, NSWMember Posts: 53
edited September 18 in Newly diagnosed
Hello, I am not sure how to introduce myself, as this self, is new to me. I feel I havenʻt had time to prepare or make sense of who I am when I look at self. An experience, I have walked into or more precisely, I am on a treadmill of some sort and someone has yanked it up and I canʻt keep up. Emotions running havoc. I am very grateful for support services such as this and give thanks to the community of people who reach out to help each other. For those who read this, thank you.
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Comments

  • TasiaTasia Sydney, NSWMember Posts: 53
    Thank you primek for your reply and kind words. So much gets flagged and you need to be on alert for things that may go wrong (the port became infected and now there is a possibility I have a UTI), language/words, emergencies.
    The scariest of all so far has been the introduction of ʻchemo brain/fogʻ. That out of body experience, the realisation that change has come and I donʻt know what to do with it. I am trying to regulate the overwhelming emotional ride not by fighting the cancer but by working with it and saving my energy to work with the parts of my body, mind and soul that have some healthy functionality left in them. Seeking the how can I help self rise, heal and overcome this tsunami... x
  • TasiaTasia Sydney, NSWMember Posts: 53
    ddon and Zoffiel, thank you - being understood makes such a difference. When I work with clients, I always speak about ‘permission to self and self care mechanisms, being kind to self and hold self with gentleness’. I find in a whirlwind of emotions, that go to place a little harder to get to. Perhaps it’s because I have no idea how I landed in that place to start of with. Did I detour and didn’t notice? 
    I plea with my body to help me bring to life the parts that are not unwell, free of medicines..wanting to work with it, help it heal.
    My eldest daughter added a little baby girl to our family last week and while the tiny little person was a sparkling star, sprinkling love and hope, I was also deeply saddened that the tears we shed were part joy and part harsh reality. I was changed and not how I wanted her to meet me...we shared love despite it though.

    I ended up in emergency last night with blood in my urine. Appears I have a side effect to Cyclophosphamide and am bleeding internally. The port is still infected. Morning discussions with oncologist as cycle 3 is due this coming week.
    Today invites, between tears a focused approach...this is a temporary situation. It may have hijacked my life but does not define it permanently. Hurdles one can do without but I can seek ways to manage them, not let them stand in my way (even when I feel like total crap).
    Do I even make sense?
    Thank you to you all xx
  • AfraserAfraser MelbourneMember Posts: 3,190
    You make a lot of sense @Tasia!
    Now is the time for (temporarily) letting go of planning and analysis and dealing with one day at a time. Many of us have suddenly found ourselves in hospital, with no warning, for something unexpected. And no, none of it defines us. The main thing as @Zoffiel often says, is just to keep
    putting one foot in front of another. Who knows how this all happened? Most of us don’t, but keeping love and faith with your body is important in accepting what has happened and reclaiming your own control. Little by little, the unknown becomes more known and the world stops tilting quite so alarmingly. Bear in mind that unexpected changes are not all bad. They are disconcerting and unwelcome, but may have hidden qualities that take take time to discover. Best wishes. 
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 182
    Hello @ Tasia. no-one wants to find ourselves here, but welcome to the forum.  The ladies here have so much knowledge, support, love and friendship to share.    I just take it one day at a time myself too.   Sending hugs xxx
  • TasiaTasia Sydney, NSWMember Posts: 53
    @Afraser - I like the idea of unlearning and relearning, the mind of openness. It frightens me that I notice how the chemo has impacted my brain city lights. I totally agree about forward movements - how do you do that on the really off days? x
  • TasiaTasia Sydney, NSWMember Posts: 53
    @Locksley - knowledge, support, love and friendship is exactly what I feel I need and hope that I can reciprocate. Sending hugs back xx
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,054
     - how do you do that on the really off days? x
    @Tasia , you don't. Give yourself licence to do nothing every once in a while. If you feel absolutely horrible, it is OK to pull whatever mental, or occasionally chemical, trick it takes to shut down for a day or two. Even that process is interesting in itself.
    It sounds like you are being given dose dense chemo, which is extremely hard work. It wasn't possible a few years ago because the side effects couldn't be managed, but there is every indication it's worth the punishing regime . It works better and doesn't take as long, but it's hard going. Mxx
  • AfraserAfraser MelbourneMember Posts: 3,190
    My really off days are a long time ago - amazingly it does happen! I used to write (still do but the main topics have changed) and putting the bad days on paper helped. Even if you think you are being childish, or weak, or petty (and you’re not, just being human) it helped me to let it out, but not in anyone’s hearing! Helped again later to remind me of how much had changed. It’s the old ‘every journey’ stuff - one step seems pointless and aimless at the beginning but then you look behind and see how far you’ve come. No-one in their right mind wants this stuff, but if it happens, it is possible to make something out of it, with some luck and effort. 
  • Beryl C.Beryl C. Member Posts: 262
    Days off or 'off days' - both legitimate in their own way and what and how you do or don't do is your choice. The comments made by others are 'GOLD!' - take what's right for you. Give yourself a chance and use this forum to adjust to accept the changes this brings. Stay connected! xxxxx Beryl.C
  • TasiaTasia Sydney, NSWMember Posts: 53
    @Zoffiel - yes, I was told aggressive BC needs aggressive treatment to slow down staging and shrink it. The plan is 5 months chemo, then surgery, followed by more treatment x

  • TasiaTasia Sydney, NSWMember Posts: 53
    @Afraser - I use journals to write down much of what I experience and how I coped or didn’t. Sometimes in first person, others in third. Sometimes I’m the author and protagonist.. soldiering on and others the vulnerable character - stuck in the midst of a dense fog. It’s been a month since my diagnosis and when I look through the review mirror, my eyes see lots of backward movements and days fuelled with emotion, confusion, wonder, uncertainty, foreignness and grief/loss...for whom I’ve left behind. Harder days than easier ones and I have only started. I feel somewhere down the track, I will be able to see the leaps between the stumbles - now I feel it’s all too raw and tough x
  • TasiaTasia Sydney, NSWMember Posts: 53
    @Beryl C. - I feel like I don’t have a choice, that gets taken away when you hear the words “I’m sorry you have very high grade breast cancer”. I am working on finding what’s right for me - I honestly don’t know x
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