Feelings and waiting..

aussiee13aussiee13 MelbourneMember Posts: 11
I like to write for my own therapy and figured here would be a good place to do it - for validation, to help others maybe, and just knowing I'm in an environment that understands this roller coaster.  I only just got on it (3rd October) and have other health issues I'm waiting on answers for also.  This is making things a tad difficult when it comes to appointments and knowing which order things need to be done.

This week, attention goes to my heart.  I'm on a beta blocker and we don't get along.  It doesn't help my emotions at all and I'm walking around like a zombie.  Tomorrow I have a heart ultrasound, Tuesday a catheter angiogram (CT showed blockages), so they will determine what treatment to go with, or put stents in on the spot.  In other words, I have no outcome expectation.

Cancer treatment can't start till they fix my heart issue.  I have a surgeon appointment on the 22nd, as they'd booked me in for this Tuesday and obviously I was busy :-) 
So with all this, and the dr telling me to stay home till my heart is repaired, I have had way too much time on my hands.  I try and keep busy, but with the BB slowing me right down and making me feel like crap, I get into lazy mode hugely.  I don't doubt for a minute that my emotions re cancer, the unknown (ie still not knowing if I also have bowel cancer), the fear of what is to come etc.. all play a huge part in the downfall of my otherwise 'usually' positive nature. 

I also decided it would be ok for people around me - colleagues, friends/family to know what is going on.  That can also be overwhelming.  A lot of messages, phone calls, support.  It's beautiful, but sometimes you just don't want to think about it all.  I did the nice (?) thing and caught up with a few people for lunches over the last week, but maybe that was taxing too, how many times do we answer the questions.  I know.. it's fantastic people care.. I am keeping my cool, but sometimes I just want to curl up in a ball and imagine it's not there. 

So.. yesterday I just broke. I have hardly shed a tear up till now.  I have talked to people, shared how I thought I felt, but never - until yesterday - knew exactly how it was that I was feeling... 

I am TERRIFIED. I am mourning the old me.  I am bitter because now my life is going to be taken over with appointments, feeling crappy, not being able to do a lot of things I love doing for a while.  And of course there is that feeling of facing your own mortality.. and having to decide what kind of surgery to go with. That is SUCH a horrible choice to have to make. 

I have the hugest admiration for all of you - I can do this (we don't have a choice really hey) but wow, the emotions.. it's going to be a long ride :( 

<3 <3

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Comments

  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,340
    Hi @aussiee13 Absolutely correct. No choice. Sometimes it feels like even the choices we can make aren’t ours. I often just went along on the ride and held on tight, sometimes with my eyes closed. Sometimes I liked people around me, often I escaped to my own company. Emotions run wild. I went for lots of walks in the early days to clear my headspace. Mid treatment when side effects halted the walking, this forum got a lot of my attention. Big hugs.
  • aussiee13aussiee13 MelbourneMember Posts: 11
    Thank you - that is how it feels @Blossom1961 - right now I'm just holding on tight waiting for the next bump.  I truly believe that until you are in the situation yourself, people really can't understand how this feels.  I know I didn't have a clue. So grateful for this safe place! <3
  • aussiee13aussiee13 MelbourneMember Posts: 11
    @Zoffiel, you just put the biggest smile on my face.  Your words - fab! <3 Thank you - and love the TBSC!
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,331
    My beta blocker says don't take it with low potassium levels and since i have been having a banana almost daily my tiredness has gotten a lot better. When I had breast cancer surgery in 2015 my blood tests showed low potassium then too and the doctor put me on pills to bring it back up. Might be worth investigating if the banana trick doesn't work?
  • AfraserAfraser MelbourneMember Posts: 2,550
    Welcome to the forum and welcome to the world of waiting! We may have some choices but they are often difficult to make (assuming you have the interest and tenacity to get all the available info in the first place) and sometimes you have to go along with ‘best practice’. Waiting is hard but the logic of settling the heart problem first is inescapable. I told most people about my bc, certainly if they asked, and my experience is people take their cue from you - so if you are happy to talk of other things, so will they (possibly relieved too). We all come to terms with the fear in different ways - my way (only once I was certain that I wasn’t about to die imminently!) was to pursue what my terror was actually in response to (partly with a very good counsellor for a short time). It has helped a lot, not just with cancer (I have been NED for seven years) but with life generally. For me, the uncertainty of what my life might turn into, all unplanned, was a real concern. Turns out to have been (so far) one of the happiest and enjoyable periods of my life. Don’t assume anything is over - treatment may be tough, but it’s for a purpose. Best wishes. 
  • aussiee13aussiee13 MelbourneMember Posts: 11
    edited October 15
    Thank you everyone.  Your posts are all SO valuable to me, I appreciate it <3 <3 I am often at a loss for words while reading them, so please do not think I'm being rude.  I know you all know the emotional rollercoaster all too well <3 


  • aussiee13aussiee13 MelbourneMember Posts: 11
    Today was my Angiogram day (catheter).  I am pretty relieved for more reasons than one! They did not put in a stent.  The nurse told me that my case was going to 'conference' on Friday for them to make a decision on my treatment.  That confused me and of course had me thinking everything rotton!  The dr finally arrived to chat with me.  He said I needed a stent.  ONE - a stent! YAY!! I was so so relieved. He did not tell me why they didn't do it today.  So on further discussion I reminded him I am now a cancer patient also, and we talked about that.  Told him my first appointment with Oncology is next Tuesday so needed to know what order things should go in.  He said if I have a stent, I can't have surgery for 6mths.  Well that's a contradiction in what I learned before, but GOOD to know now isn't it!
    He said my condition is not life threatening, so it CAN wait till I have my breast surgery (whichever way I go) and we can go from there. 
    SO glad I found out now before the stent went in. 
    The lady beside me had pricked her ears up also, she is a BC survivor and was SO lovely to talk to.  I learned a lot from her and she was quite teary having someone else to talk to about it. It has given me a different persepective and I am now over confused with what choice I am going to make re surgery.  
    Feeling happier today because I'm not about to die of a heart attack ;-) 


  • AfraserAfraser MelbourneMember Posts: 2,550
    It’s bizarre, but a good thing, what can make us happy!! I was mightily relieved to find that an irregular heartbeat (as opposed to the regular irregularity I’d had for decades) wasn’t going to do me in either! Everyone has to find out what feels best for them regarding breast surgery - it will depend to an extent on what is recommended and what can be done now and what can be done later. Unfortunately, what someone else prefers or chooses may not feel right for us, so ultimately the decision is up to you. But it’s worth remembering that one option is to do the necessary surgery as soon as recommended and wait to decide about reconstruction. A conference of doctors is usually useful - makes sure that everyone knows all the bits of different information. Best wishes for your oncology appointment. 
  • aussiee13aussiee13 MelbourneMember Posts: 11
    It's certainly a tough decision.  I think (note the use of the word think.. ugh) I am not too concerned about reconstruction.  I am single (divorced) yes, but not trying to attract a man or interested in relationships, and even if it were to happen, it would not be with someone so materialistic as needing the perfect cleavage ;-) My girls have done their job.  I know, this feeling may also change, as it has over the weeks.  I think I've had way too long to think about this and yes, it is getting confusing.  
    But.. having the stent issue understood and all - makes a huge difference for now. 
    I think I'm talking in circles :/ 

  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,340
    @aussiee13 Hey, circles are good. I talk in warped figure eights.
  • AfraserAfraser MelbourneMember Posts: 2,550
    I fully appreciate your feelings. I have had no reconstruction, I am in a relationship and I would have been alarmed (and very surprised) if my partner felt any differently towards me. I think most of the women I have encountered in this network had reconstruction for their own benefit, satisfaction and wellbeing, not anyone else’s. Best wishes. 
  • arpiearpie Mid North Coast, NSWMember Posts: 3,104
    Oh my Gosh  -  sounds like it was just as well they didn't put the stent in with your angiogram!  

    How good was it that the lovely lady was able to chat with you - I wish you well on the order of things - and have got everything crossed that it all works out for the best result for you xxx  Big hugs coming your way xx
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