It’s been a while.
I am sorry.
I have been going through a bit of a process, a great word – from Latin processus “a going forward, advance, progress.” Moving forward, I hope that is what I’ve been doing. It might be slower than a herd of turtles, but I am getting there.
So much has been going on and I’ve been in observer mode. You know sometimes in life when everyone and everything in it spins around so fast you feel like you are watching the carousel? Deciding when to jump back on, you take a running leap and BANG you missed it. Deep breathe, ok this one looks good, I will jump on HERE….nope gone again.
If I am really honest, there have been a few days where I want to gather up my children and Lothario and escape from the Carousel up into the branches of the Faraway tree into the land of Always & Hugs. We would stay up all night laughing and eating copious amounts of pop corn, we would never get fat because the Queen of Always & Hugs has exiled Sir Carbohydrate to the land of NoFun.
Didn’t take me long did it? There’s the gambler then there’s the rambler, I have the art of verbal diarrhea refined.
I am avoiding. Procrastinating- Latin for “Not getting the shit that needs to be done, done.” I went to the Doctors, I went for an MRI a few weeks ago now. The MRI- a lovely big tunnel of magnetic genius. Like the Wizard of OZ behind the curtain They work their magic to look at amazing pictures of your upstairs grey matter. An hour of lying in an enclosed space, with ear muffs while big noisy machines click and grind around you, shrouded behind space age plastic and metal.
I pretend I’m in a space Odyssey capsule, flying faster than the speed of light to the Land of Chocolate & Johnny Depp (have you heard darling? Its mean to be just de-lish) Then you wait a few hours, They don’t make eye contact normally. Because they know and you don’t, and they are beautiful, dedicated and often polite people, so they don’t want to acknowledge that you know that they know. So everyone pretends they don’t know. I actually find it quote socially awkward sometimes.
Sometimes I feel like patting their arm and saying “Look I know what’s in there, don’t worry, I am cool with it, really. Go have a coffee, take a load off.”
On other days I feel like looking at them and saying “Can I just ask? Have aliens infiltrated it? Because I’ve been wearing some pretty bloody thick aluminum foil around there and It doesn’t seem to be doing the trick,” and signing off with the Captain Spock hand gesture and walking mysteriously off into the distance with my arse hanging out of my gown. That’s usually on a bad day.
Lots of people ask what this stinky aneurysm actually is. So if you want to be bored senseless and I really hope the doctors aren’t reading this as it is WAY TOO SIMPLISTIC- SO LAYMANS TERMS LOL.
Ok lets do this quickly …the aneurysm is a big misshapen balloon in my Brain but more precisely in my Internal Carotid Artery, facing opposite my Opthamalic artery and many other little arteries that feed all the blood supply to the front of the brain including the eyes. Picturing? So basically if it ruptures I would die very quickly or in some medical staff’s words I would wish I was dead (yup these words have been used). Normally aneurysms can be clipped, or coiled to seal off the blood going into it. I’ve already had this done back in 2012. This is a completely different aneurysm. Imagine a balloon filling and filling until the wall gets too thin, or even a hose with a bubble in the side wall. If blood is filling into it, depending on the size and location it weakens and can break. So back in November I was told it was a case of uh oh– no clipping, no coiling, no neurosurgery, but at the same time it was such a nasty little bugger if they did nothing I would die. The Doctor’s estimate at the time was that I would be lucky to get to Christmas.
SO they put FRED™ in, a Flow Diverter, to take all the blood away from the aneurysm and redirect the flow. When you take the blood flow away the aneurysm can shrink and occlude itself or in lay-mans terms shrivel up and is no more. They did this by threading a catheter all the way from my groin to my brain and placing two Diverters in there.
They were very honest with me, the nature of this brain aneurysm was so severe that they were wanting and praying that this could save my life or prolong it a bit. Life or a bit more time. Either way was better than Christmas. (Try telling that one to your three kids, no thank you very much).
To cut another long story short, this is not like a brain tumour. Its not about getting bigger, and if it doesn’t get bigger its ok, or if it gets a little bit bigger its ok. This cannot grow. If it grows any more – no more Kirsten. It’s that simple.
Harsh huh? So it definitely hasn’t grown because I am typing this blog, and unless the NBS has developed at super speed and Heaven has WIFI so far so good.
SO FRED is working well enough that I am still here. The not so great news was that blood is still entering the aneurysm. It isn’t shriveling or occluding. They expected it to be doing this by now or even be gone. It isn’t. Its still filling with blood…
Yours truly was so excited before this news because I wanted to report back it is gone. All gone and I am going to revert back to normal land. Who was I kidding? First I’ve never been “normal” per se. Secondly that would be really greedy considering I have already received multiple miracles and Thirdly I am not going to question the process. Fourth- “hello my name is Kirsten and I might be a perfectionist”. Hmph.
Good news is- it might take 12 months to happen. Scary news- the artery might not make it.
So there it is. I have a time bomb in my head every day. I could live until next Tuesday or until 2050. This time bomb has also been my golden opportunity and key to looking at my life in all sorts of different ways. Its true I appreciate all the little things and the big things too with a new light. My educated guess is that the bomb will be dissected and stop ticking before the year is out. I hope so. The red wire or the blue wire? Anyone’s guess. They have done everything they can. But maybe October 2015 some scientist will release a laser beam that can penetrate and vaporate blood flow in an instant. Who knows? Now there’s an idea…
If one more person says “Or you could get hit by a bus tomorrow, none of us know” I will scream. I really will. Like a “back away now- she’s going a funny colour” kind of scream. No, not really. Have you ever seen me cross? Apparently according to my Lothario it’s an amusing event to watch.
I mean this with absolute love and good intent but for the purpose of understanding- Please take a big uncomfortable chemical lump of C4 attached to a super big bomb, strap it to your chest while sitting at a Russian Roulette game, take a big breathe and listen to the ticking of the clock. Can you hear it?
Just a tip- it ticks louder when you tuck your children into bed, when you see a sunset and you hug someone. It even gets caught in your throat when the dog does something cute or your brother makes you proud. I have to sit in my car and watch my son play tennis, because otherwise i get misty eyed. When my little niece CC runs up to me (every single time she see’s me) and gushes “Oh I LOVE YOU Aunty Kirst” looking at me like I am amazing and hugging me like a vice I get a bit scared my heart will explode and I will make a big mess. Not kidding, its kind of pathetic. So the bomb ticks… (like sands through the hour glass?? so dramatic, i should really get a grip)
The ticking gets super loud at the midnight hour too. I talk to it, I make it my friend and I do all the right things to ease my body, mind and keep calm so I can carry on. BUT, when mortality is in your waking moments, through your day and in your dreams you are not fully submersed. You are not positioned on the carousel like most of the population. Your thinking IS different. Your experience of life, spirit and love is different. Your relationship with the idea of death changes dramatically. The different is good, bad, ugly and positive. It just is.
So I was fine. I am good, no really I am fine. I kept it together the day I had my review and MRI. Lothario and I even made silly jokes in the waiting room together. Hugs are good when they are for people you think are crazy awesome aren’t they?
The trip home was fine. We were all ok. Then I woke up at 2.00am and had a little walk outside, pacing the back yard in the Wintery chill and had a serious convo with the Bearded Wise Guy upstairs. I asked him if I could hand back the ticking thing. I then realized he didn’t give it to me, so how could I give it back? It was a human thing, this ticking business. Humans can break did you hear? Their parts can and do stop working sometimes. It’s the darnedest thing. Its complicated.
So back at the 2.00am backyard Q&A session I took some long slow breathes asking for guidance and in true Frozen form the answer came “Let it Go” so let it go I did. Many, many tears came. Huge ones, little ones, fat ones, Forrest Gump sideways ones. They fell for a long time, and with each tear I could feel the tension and fear draining away. It was okay, I was not alone. I was surrounded with a grace and peace that felt strongest in my chest. As my tears fell, I could feel my heart unravel just enough to let some faith back in.
I wiped the tears. I made a cup of tea. I asked for some really good stuff to happen to lift my heart. Within hours I had received 3 pieces of news that made my day.
One of these involved a gorgeous young friend of mine called Lilly who went to the Sydney Writer’s festival and met a writer we both adore and respect. I’ve known this poppet since she was born, she is one of those sparkly shiny people you feel blessed to be able to hug every so often and this news we shared made my day.
The second was that my Nanna was ready and waiting at the local nursing home. She moved to live around the corner. From me. Nellie Florence, my beautiful wonderful Guardian Angel was brave enough to move from Far away to Close. From the Land of Bendigo to the Land of the Blowing Cold Winds (otherwise known as Geelong) My inner child was so flipping excited it was on a sugar high, red cordial and ants-in-my-pants joy that had me unable to sit still! She’s alive and around the corner for me to hug whenever I want to.
The third was that I would live the day out and get to hug my children, feel their warmth and their breathe on my cheek and walk through their mess. (The mess bit only lasted until the Wednesday if I am really honest)
And such is life. It is a roller coaster or carousel as my daughter would put it. So I have jumped back onto the Carousel. It took me a few weeks to get the nerve again and be friends with my vulnerable, scared self while embracing the inner warrior who trusts in God and maintains her faith about jumping onto a moving object. I even had a weekend with great mates and laughed until it really hurt and it was so good.
And Here we are.
Thanks for reading. Feel free to share. Check out our new support page on this website and I wish you well.
The other is Annie L , our tyre –men connection, our Kerry connection, our brain connection and now our heart connection. I want you to know that you have been in my prayers, blessings and thoughts EVERY DAY since we walked passed each other in Ocean Grove- a glimpse is worth a thousand words. My blessings to you in your journey are in abundance. You are amazing and you are not alone and I hope your heart is peaceful, you are getting enough daily laughter with your Vitamin D along with lots of love and a shrinking tumor xxx