Feelings and waiting..

aussiee13 · October 2019

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

Blossom1961 · October 2019

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.

aussiee13 · October 2019

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!

Zoffiel · October 2019

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 · October 2019

@Zoffiel, you just put the biggest smile on my face. Your words - fab!

Thank you - and love the TBSC!

Sister · October 2019

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.

AllyJay · October 2019

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.

Brenda5 · October 2019

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?

Afraser · October 2019

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.

aussiee13 · October 2019

Thank you everyone. Your posts are all SO valuable to me, I appreciate it

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

aussiee13 · October 2019

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 ;-)

Afraser · October 2019

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.

aussiee13 · October 2019

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

Blossom1961 · October 2019

@aussiee13 Hey, circles are good. I talk in warped figure eights.

Afraser · October 2019

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.

arpie · October 2019

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

Feelings and waiting..

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