The Blue Folder Part 2

It’s 3.30 am and I can’t sleep… again.

I’ve tried reading, listening to music, meditation, listening to the quiet, deep breathing and it’s just not happening so I’ve decided to get up and write.

I try not to get aggravated about not sleeping… it only makes it worse. I like quiet so it doesn’t bother me just lying there and resting (except for the chainsaw that occasionally cuts a load of fire wood beside me… yup, the snoring love of my life – and we don’t even have a wood fire).

It’s when the thoughts won’t stop and the picture show in my head gets stuck on repeat is when I start to get a little annoyed. That’s been tonight’s scenario.

Part two in this series has been a long time coming. I apologise if you have become tired of waiting for more. The response from part 1 was just beautiful. So much encouragement and empathy and beautiful comments urging me to continue on with it… thank you. Thank you gorgeous Sonia from Life Love and Hiccups for the huge shout out.

I’m not entirely sure what has been blocking the next episode. Doug’s and my life has, metaphorically speaking, willingly been an open book for whoever cares to read it. Being honest and open with family and friends and even people who would stop us in the street knowing our life story has been the best decision for us, and those particularly close to us, for coping with our life of adversity and the continual bruising from the shitty stick that likes to follow us around and randomly strike for no other reason than it bloody well can… for almost 30 years now.

One idea I’ve been tossing around is that maybe I became scared… not for me… but for you.

What if you yourself are just beginning this cancer ride and become frightened and overcome with fear thinking that what I have been through is what you and your family will have to go through? My tale is not one of the worst stories to tell of cancer diagnosis, treatment and on-going recovery but it’s not one of the prettiest either.

What if someone close to you is going through cancer and you become overwhelmed with emotion wondering how on earth you shall support them adequately and bear watching them navigate and endure this life changing unkind?

What if it’s just an unwritten code of silence someone forget to tell me about and I’m about to break it?

When I was first diagnosed, and I know of others who have done the same, I went searching for people to talk to who had survived my future unknown path to tread. I wanted to hear it wasn’t going to be as bad as my anxious moments would have me believe.

I knew of people who had experienced relatively dream runs with treatment. They’d felt a bit crook and lethargic for the first week or so after chemo and managed to get on with life with a fair amount of normality until the next round was due. “Do-able’ they would say.

I knew some where surgery was uncomplicated and they recovered quickly and without drama. They also said “It’s do-able”.

These are the stories and developments you long to hear and you hope like hell they’ll be your story to tell too.

Then there are people who would say “I won’t lie, it’s not easy, some days and weeks are really rough, but with the help of your health team, family and friends you’ll get through it”.

These are the people who I now know feel sick to their stomachs that you may have to endure one moment of horridness they may have experienced and try to warn you in the most compassionate and gentle way possible, without alarm, that the ride may be potentially very bumpy… but not to give up. They too would say “It’s do-able”.

I appreciate the honesty from all who shared their thoughts with me.

“Well, what I can take away from my research is that no matter what ‘It is do-able’ I would think to myself, and I clung on to that.

Let’s just get this show on the road and do what we have to do to beat this thing and give myself the best chance of long term survival and to never hear the word ‘recurrence’ or the words ‘You have a breast cancer’ ever again … and in the beginning that was the only energy I would feed my focus.

What really happened is that none of it went to plan, treatment knocked me around and the wheels of my kick arse attitude became wobbly and buckled very early on until inevitably they fell off completely and I was barely able to roll in the dust at the very bottom let alone kick a stray stone or two.

I ended up weighing only 39 kilos. Chemo did a number on me beyond my comprehension and I was completely physically, mentally and emotionally destroyed and exhausted.

I honestly thought I was going stark raving mad and I was paranoid and petrified that at any moment I’d be tricked by someone back into hospital where they would drug me and give me electric shock therapy. Such was the non-existence of logical thought and reasonable mind.

To this day I believe the chemical therapy I needed to give me the very best chance of killing off any rogue microscopic cancer cells that may have escaped my breast tissue was actually attacking my brain in some way as well. I. swear. to. god.

By the end of the fourth and final round I could barely talk or string sentences together. I’d look blankly at my family when they would ask me questions. I was agitated, anxiety riddled, severely depressed and I couldn’t stop shaking and wringing my hands let alone walk very far. I’d get up off the couch and stand in the one spot doing circles beating my head with my hand because I’d forgotten why I’d gotten up and what I wanted to do. The fear of anything and everything to do with life was unbearable. I couldn’t function AT ALL.

I survived on valium to get me through each day and even then I had to be talked into taking each dose because I was convinced and paranoid I’d become addicted to them.

I didn’t.

I just wanted to curl up in the secure safety of any ones arms that would hold me and sob. Sometimes I had no more tears and all that was audible was some kind of noise I can’t even describe. It was nothing short of pathetic. My body felt like it had been filled with concrete. My thoughts and mental state were sending me insane… so I believed.  It was torture.

Sometimes I could barely sleep for days despite the relentless fatigue. Other times trying to stay awake was not possible.

I didn’t care anymore… as long as it wasn’t going to hurt I didn’t care if I died.

I reckon I slowly sunk to those depths over about the last 8 weeks of treatment and stayed at complete dysfunctional rock bottom hell for at least 4 weeks before the meds kicked in and I could feel some improvement.

Then I had to face 6 weeks of radiotherapy. It took all of those 6 weeks and more to crawl my way back up to a place where I wanted to get better and felt more in control of me.

Then it was Christmas. Where did Autumn, Winter and Spring go?

I hope with every fibre and grit of my being that my family and friends never have to witness or be party to such a hideous experience in our lives ever again. Without them, I don’t think I’d be here. They loved and cared for me so unconditionally.

*****

It’s now 6.30 am and I haven’t slept a wink. I’ve showered, made a cuppa and I’m listening to the birds breaking into their morning song. I’ve opened the curtains marvelling at the glorious colours of the morning awakening, smiling and feeling content that I didn’t let the couch swallow me up during those darkest days it gave me sanctuary.

I’ll do no more edits and hit publish soon. Scary for you or not (I sure hope note) here are my thoughts for you to experience in their rawest form and take away from them what you will.

Have a beautiful Sunday. Make a special effort to be kind to yourself and to others today… for you never know what story they may be hoping you can’t see hidden in their eyes.

 I really need to be kind to myself and buy a decent bloody camera… this does it no justice.