Trying to cope day to day

LoisLois

the past few weeks have been a true roller coaster for me.  I have found in the past few days, my emotions have hit a low with crying, a sense of anger at the unknown of what lays ahead and last night was particularly bad - I told my husband that I was truly afraid that I might not survive and what if this period of time was all I had to enjoy? 
I have surgery next week and as much as the medical team have given positivity - there is an element of fear which comes from the fact "a bloody lump is growing in me!"  I know they will cut it out but who is to say it wont come back or turn up somewhere else that is not visible? 
My emotions are on hyper drive and I do feel incredibly lonely even with my family doing everything in their power to support me.  There is almost a "need" to  be positive for them and myself but some days I am so damn tired from doing so. Illogical I know and it is ok to say "Im not doing so well today".
for the first time since I was told "It is Breast Cancer" - where my response was to go into "fight mode" and literally almost pretend it was merely a bump in my life.  I woke up from a sound sleep - yelling "I have Cancer!"  over and over.  Then broke into a hysterical bout of crying, sobbing and quietly screaming as it hit me - I have bloody awful frightening Cancer. It is not a bump in my life - this bloody thing growing in me has the capacity to change everything.  
Some days, I think to myself - I will beat this into submission and the power of positivity thrives but in the quiet of night - a multitude of images and emotions hit me like a ton of bricks and I end up weeping.
The pain radiating from the damn lump that has grown dramatically due to its aggressive behaviour is like an endless ache and as much as I know it is "part and parcel" of the cancer - is a constant reminder that this nasty little visitor in my body has taken some of my control. 
I am sorry this is a long chain of thoughts. I just needed to let it out somewhere.
Lois. 

Afraser

Let it out - like the cancer, it’s better out! We have all experienced varying degrees of the same shock, disbelief and most of all fear. The fear is the hardest thing - our brains may know that none of us know how long we may have in life but emotionally we are tuned to assume we have forever. Nothing has actually changed, it’s just that your emotions now know what your brain knows and it’s very hard to accommodate at first. It does get better - surgery is the first step, knowing what your treatment is thereafter is the next one. Deal with that first and do whatever you need to to get past those milestones. But getting some help with the fear (which is real, understandable but not helpful) may be worth looking at then. Your medical team should be able to suggest good counselling services to assist in facing something of this scale. Many of us have found even a few sessions really beneficial - family and friends can be comforting and supportive but counselling can get to the real nub of things. Just as you will help your body to recover, your mind needs to recover too. Years from now, you want to be able to look back and say wow, that was horrible but I also learned some really useful things for my life too. Best wishes. 

kezmusc

Hi @LoisLois,

What your describing is exactly why we call it the rollercoaster.  One minute your like "yep, I got this"  the next it's cloudy fog of doom and endless tears.  It is a massive mortality check that you never saw coming.

  @Afraser is right.  We all assume we have oodles of time then bang, that's the end of your self security. Your body just betrayed you in a big way.
 It does give you a little more feeling of control once the thing's out and you know exactly what you're dealing with  Then you have a plan of attack.  Somedays are still going to be awful and that up and down can go on for a while, but at least you will know where your next goal post is.
Try to stay busy and keep some normal things happening in your life.  Flat out crazy busy and distracted helped me a lot.  No time to think. 
 Night time is always worse and your brain will think of every possible aweful scenario it can.
What your are feeling is normal and real.  Just ride the wave you're on at the moment, there is no right or wrong way to handle this thing.  Most of us just muddle through as best we can day by day.
You will get busy with appointments and treatments, and, in what seems like an eternity at the beginning appears to be over relatively quickly and your out the other side.
All the best sweets.  Keep talking to us.  We understand absolutely how you are feeling.
xoxoxoxo

ddon

Oh, it’s truly a hideous ride. No- one else in your life - and they try their best - but no-one can truly understand that 24/7 your thoughts are ‘cancer’ and you can’t get away from it. It’s in your body and you can’t claw it out. Here, in this forum, we understand. The tears, the overwhelming fear, the struggle to keep being positive for the sake of those who love us, the 3am total sureness that we have secondaries growing somewhere, etc etc. 
As the others have said, once the surgery is done it settles a little, then treatment helps, and gradually life begins to normalise somewhat. I am still in active treatment and while I still have my bad days and nights, and many fears, I am much much more settled than I was in the early days. 

Hang in there, it will get better I promise xx

Dory65

LoisLois,
Yes it's F@#$%&&** awful! In our horrible lucid moments I think we are all afraid. I sure am, even though I look well and am back working full-time. I've finished active treatment and commenced endocrine therapy. I skipped chemo because the Oncotype DX result said it would be of <1% benefit as long as I take Tamoxifen... yet I am still afraid that I've made a mistake and been undertreated... and I'm afraid because I can't seem to get a straight answer about how long I can expect to survive anyway. The statistics re 5 years, 10 years freak me out. Am I supposed to be happy with 5 to 10 years? You can't even find reliable stats for more years of survival! "We just don't know" is all you get when you ask. It seems ludicrous to just get back on the hamster wheel of pre-BC life as if nothing happened, but that's what we are expected to do. That's what I've done. This whole BC thing has been a surreal mindfuck. I'm not even sure I've processed any of it or if I'm just living in denial. If I'm 'caught' crying or worrying, the response is "but you're OK right now". Am I?

Rant over. Glad I've got you guys. Sorry I can't help you LoisLois but I sincerely empathise. Rant here any time. We get it.

LoisLois

THANK YOU THANK YOU! 

The fear of death is one of sadness that I will miss out on so many wonderful events, laughter, joy etc...not from actually dying.

I am a realist that death is always sitting around the corner and therefore have prepared my will, organised my funeral over dinner one night as we played music that has inspired me, soothed me and therefore to be my send off songs.  My children are all adults and that night gave them a chance to let it all out - hours of talking, dancing, laughing, having a scream as they yelled out to rock music and quietly cry as I slow danced with my Man.

When I was first told about the Cancer, I goggled profusely - trying to find anything that might ease the need for information so my brain could correlate what was about to occur...let alone gather questions I felt I needed to ask the Specialist.  I too, asked what was the survival rate and he too said "5 years, maybe 10" - instantly I sat there and thought what the hell?  I have so much to do in my life! Instead of accepting that time frame - I got ANGRY.

I have to admit there have been days, I wake up and think to myself - "It was all a mistake" and then instantly the fingers seeked out the damn lump and the brain goes "ah nope - still there!"  I do wonder after it is removed next week whether it will bring a sense of comfort or fear?

I too understand the look you get from friends in particular - but you look so well!  I am well except I have a bloody lump growing!  I am still ME.  I haven't changed.  I still lead my life, enjoy it just like I always have but all of a sudden a lot of them no longer come around to see me almost like they feel i am contagious or something? Yes, i am tired more often and prone to nod off at weird moments and the pain is sometimes awful but I am still me.

I am grateful that I can say how I am really feeling on here - your wisdom and experiences have been enpowering and also so helpful...because sincerely as @Dory65 says - it has been a total mindfuck. 

Hugs from me and thank you for letting me rant.  

  

Giovanna_BCNA

Hello @LoisLois dont forget that you can call the BCNA helpline if you would like to speak with one of the cancer nurses for support and or information.  We are open 7 days a week currently from 9 am till 5 pm on 1800 500 258.  Take care of you

LoisLois

@Giovanna_BCNA THANK YOU - I had forgotten about the helpline.  Im grateful. 

Shellshocked2018_

Hi Lois,
Just to let you know what you are feeling is normal, we have all been there. As mentioned above it does get better once surgery and treatment starts. Cry when you need to.
I use to cry myself to sleep, or fall asleep and wake up, in the middle of the night with the darkest thoughts. I remember feeling I just want this shit out of me..... breath, one day at a time.
Its ok to have down days but you need to pick yourself up again and kick this disease to the curb, you can do this........
There are people on this forum who have beaten this and you can to.

I did a meditation and mindfulness course which help me get through, to learn to be in the moment. Also I spoke with my GP and was recommended a sleeping tablet, which I took especially in the early stages.
I found with a good night sleep I was able to function and deal with things better.
Stay positive, be around positive people, take this time to do some cooking and freeze some meals for when you start treatment.
Take control of what you can and of what you can’t.
Clean out cupboards that are annoying you, spring clean, keep busy. 

It’s a bit hard to get out and about due the the pandemic at the moment.
Friends and relatives don’t understand, no one does unless they have been there themselves, that’s why we are all here to help,you through this.

I had one dear friend who I knew I could tell, her anything as I knew no mater what I said she would always find a positive in the negative , and keep me on track, and that’s what I needed, a good kick up the bum when I allowed negativity to creep in. Facebook and messenger was my lifeline.
If you have a friend or someone you know that has the ability to keep you staying positive through this roller coaster ride and they are happy to help, take up the offer.

As for people suddenly dropping off the radar all of a sudden, quite often it’s because they don’t know how to respond or deal with it themselves. I know how you feel as I thought the same.
If someone offers to do something for you, cooking, cleaning, shopping etc let them as that’s how they deal with it and that’s there way of helping as they feel helpless.

we are all here to help you through this .
I  was diagnosed in October 2018, all surgery and treatment finished in October 2019, and I have come out the other side, had first yearly mammogram ALL CLEAR. 

YOU CAN DO THIS, don’t ever doubt that......Stay positive.........Laugh, sing, dance......keep active.....

Sending hugs xx

Caz1

@LoisLois rant away I think we all have those moments.
Like @Shellshocked2018_ I have found meditation and being around positive people key. I don’t need sympathy, I don’t want to dwell on the negs, I just try to be positive and even have a laugh with my family at all the bad stuff that happens, if at all possible!
The sisterhood is here for you lovely xxx

LoisLois

Thank You ladies for your wisdom and positivity. 

Since my rant session - I have been feeling a lot better.  It allowed me to let go of some emotions that to be honest were freaking me out and with that release - I am back to laughing, listening to music and being creative - I have so missed that energy! 

CONGRATULATIONS - @Shellshocked2018_   What a truly joyous result for you.

Big hugs from me xxxx

Louweezer

Hi Lois - just reading this thread I am so glad you are ok. It truly is a rollercoaster that we are all on here - thank god for these forums I only discovered a couple of days ago! To be honest it’s taken a year and a bit after diagnosis that I have felt truly ready to face it up front. 

To anyone out there my little bits of advice would be:

If you are having a down day, that’s ok. Stay in bed and have a nap, do what you want to do. 

My counselor said scream, cry etc for fifteen minutes then if you still feel rubbish talk to someone. 

Also, only google to the first page. If you still have questions, make sure you are looking someone in the eyeballs! Google will drive you crackers!!!

I was talking to my sister today and she was talking about future planning and I burst into tears and said I won’t be here in 40 years wahhh (I am 48) so it can hit at any moment but let it out. 

Finally you don’t have to be positive all the time, my mum said once in the last year that positivity will help (I am usually very positive) and I said it won’t cure incurable cancer grrrr.  But seriously, you feel how you feel and that is ok. 

Sending you all lots of love and big hugs xxx

jennyss

Dear @LoisLois and @Louweezer ,

So glad you have found the network. It has been great for me too.
Best wishes from jennyss in Western NSW