Forum Discussion

aussiee13's avatar
aussiee13
Member
6 years ago

Feelings and waiting..

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

emotions
new-diagnosis
new-normal
  • Brenda5's avatar
    Brenda5
    Member
    6 years ago
    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?
  • AllyJay's avatar
    AllyJay
    Member
    6 years ago
    Oh we other signed up member of the TBSC also can concur with all you've so eloquently written. This whole shitfest sucks, heaps. You are transformed from who you were to a list of diagnoses and a hospital number. In my past life, I saw my GP only for repeat scrips for my blood thinner and for results of blood tests for same. Now it's this ologist, that ologist and the next ologist. This chop and slice master and that other one. I can read at night now, without a light as I gently glow from radiation. Also explains why I can no longer sit next to a pregnant woman....(just kidding, but almost true). I also have a number of other major health problems and the competition is on as to which will snuff out my flame first. Bets can be placed via private message. The brain aneurysm almost won a year ago, and I was most upset that the staples were out before halloween...I would have frightened the crap out of any sucker who opened the door to me. Lurch from the Addams family comes to mind. You're in very good company here and you can write all you like. That black blood (also called ink) allows you to offload to others who completely "get" you.
  • Sister's avatar
    Sister
    Member
    6 years ago
    One minute you're just getting along, minding your own business, and then bang! you're in the mincer (to quote @zoffiel).  It's a not fun, to put it lightly.  In my experience, generally people are caring, but do they really want to know?  And how often do you go through the same story - it wears you down.  But that's not fair because you do want people to understand and care.  Damned if you do and damned if you don't.  I started a blog to keep people updated, both on the facts of my treatment progress and how I was feeling about things.  That way they could see my (almost) innermost twisted thoughts...or not.

    I have been reflecting over the last few days about mindsets.  The thinking goes that everyone has an inherent natural setting, be it on the positive side or the negative one, and that you will return to that mindset whether you get fired or win the lottery.  I think that mine is naturally fairly positive but damn it's had some knocks over the last few years and they seem to just keep on coming, so I feel out-of-kilter most of the time.

    Take care @aussiee13 and all the best for the coming week's scans.
  • aussiee13's avatar
    aussiee13
    Member
    6 years ago
    @Zoffiel, you just put the biggest smile on my face.  Your words - fab! <3 Thank you - and love the TBSC!
  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    Hi @aussiee13
    Being fed slowly into a mincer is a deeply unpleasant experience, particularly when you also have to decide whether to go in head first or feet first.
    Telling people about it is difficult, and their reactions can range from comforting to infuriating. It would be nice if we could control the conversations, but once that cat is out of the bag, there is no shoving it back in again. Loss of self is shitty enough without some expectation that you should try to explain it to bystanders who have no bloody idea what it feels like.
    Ah well, you are not on your own here. As a senior member of the Twisted Bitter Sisters Club (I just made that up, but I think I might be onto something) I can assure you that though your circumstances are different from other people's, the emotional train wreck is an all too familiar event. Hang in there. Mxx
  • aussiee13's avatar
    aussiee13
    Member
    6 years ago
    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
  • Blossom1961's avatar
    Blossom1961
    Member
    6 years ago
    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.