Posted on December 5, 2014
A friend just posted this in a bowel cancer forum that I frequent, and it’s perfect:
“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in site, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you are going, but you know that so long as you spread your wings, the winds will carry you.”
C Joybell C
I’m the first to admit that cancer, if you let it, can be character building. It’s changed me, in ways that I will never mentally recover from, I’ve heard things I’ll never unhear, and i’ve been to places in my mind in the dark of night that are blacker than black, thinking not about sleeping the longest sleep, but what people will do while you are sleeping – people you love, and mostly, people you made. Those who grew and dwelled in your body, and who you love so powerfully, that all that really matters is seeing every possible milestone they will reach. Birthdays, graduations, weddings, grandchildren. To know that it is very unlikely that you will see your four daughters grow into women is the sort of horror that makes you heart thump out of your chest, that makes you look at the clock and despair that it is only 3am, and you wish so hard that the dawn was not so far away. At times like that, the middle of the night is very much like death itself.
But as I have written about before, I have been able to find much good in it. I have been, as referred to in the quote above, suspended in mid air with no landing in sight for 12 months now. But in those 12 months, I have learned to spread my wings like I never dared spread them before. That feeling of not knowing where I was going? Well, before the day I became acquainted with cancer, very much against my will, I ALWAYS knew where I was going. I was so future focused that I rarely paused to take in the beauty of the present. I darted from place to place, always harried, and I never noticed that my eldest daughter had developed another smattering of freckles on her face, or that my middle two grew another couple of inches, or that my youngest daughter, who has special needs, was using hand gestures to try and communicate more. There was time to notice these things, always time. Until there wasn’t, and I realised the true beauty of the here and now.
It’s very hard to live in the absence of hope. For the first six weeks after my diagnosis, I did. I had been told absolutely nothing could save me, and digging myself out of that abyss proved nearly impossible. I learned to function, but i was a shell, and I shut out everything and everyone that I loved. And then came the possibility, the tiny chance of a cure, in the form of a liver resection. The surgeon said that in my case it would be very difficult, very extreme surgery, due to the small amount of liver left behind after he took all the cancerous part away. But, he said, technically he could do it, and I just might survive this.
And, slowly but surely, I opened my arms, and my heart again. I entertained the possibility that one day I might be happy again. If someone told me that I had a 5% chance of winning the raffle, I would consider it very unlikely that I would win it, but when you are given a 5% chance of being cured of stage 4 cancer, you are bloody sure you can be one of those 5 in 100, and you know you are going to do everything in your power to make that happen.
At this moment, I should be in the ICU at The Alfred hospital, recovering from my liver resection, which was scheduled for today. But in the most spectacular case ever of not knowing where I am going, I am instead sitting up in my bed, writing this blog. I had a perfectly ordinary day, sorting out some issues to do with real estate, having breakfast with my husband, the school run, groceries, dinner. All the time thinking what might have been, because Friday December 5 was the day I spent nearly a whole year working towards.
It unfolded something like this (and I will bore you as little as possible with talk of liver anatomy). Five weeks ago, my liver surgeon, worried by the small amount of functional liver remnant (hereafter known as FLR) decided to perform a procedure on me which would block the blood flow from the right hand side of my liver, allowing the left hand side to grow bigger, as that was the healthier side. He was hoping to end up with a FLR of around 50%, which makes the operation much safer. At the time, my FLR was about 30% by estimation, and though it is technically possible at that level, it is dangerous and the chances of complications, liver failure, and subsequently death, quite un-acceptably high. On the way to see the surgeon the day before yesterday, I was quite upbeat, totally expecting him to say the liver had achieved sufficient growth (as this procedure “works” for more than 90% of people), take me through the surgical process, and tell me he’d see me Friday.
That, of course, did not happen. Instead, I am one of the 10% whose liver did not grow at all, and he was mystified by this – absolutely blindsided, the lot of us. Worse still, one of the more technical scans he had done put my FLR at 26%. Still technically possible, but we were talking very very dangerous now, and in fact the surgeon said that it was “at the very limit of what was survivable”, and the surgery would be “extreme”. At best, I would be very sick for quite some time, at worst, and it wasn’t an insignificant threat, I would go into liver failure soon after the operation, and die. The surgeon said he might still operate, but he was having a meeting with a large amount of medical professionals the next morning to discuss my case, and the final decision would be made then.
And that was when it hit me. I wasn’t going to win. And if I did, it was a raffle with the shittiest prizes imaginable. Because, in my heart of hearts, I knew a large medical team was not going agree to take such a huge chance of taking my life when they were trying so hard to save it.
The next morning, before I knew the outcome of the meeting, I met the building and pest inspectors at my new house. You know, that one I dreamed of, the one where children frolicked, and collected eggs from their own chickens and picked salad ingredients from their own vegetable garden. Where the old country kitchen was the heart of my home, where all those I loved gathered around me. The HOME, the place that carried all the dreams of my future within it’s walls.
But, all of a sudden it was just a house. It was like I saw it in black and white. I couldn’t see children running through the halls, or hear their laughter as they soaked and splashed each other in the big clawfoot bath. It was just weatherboards, and floorboards, and fireplaces. And that crack in the wall that seemed to add charm to that grand old lady? Well, it was just a crack. And that was when I realised that I had surrendered what had fed me for the last 11 months, the thing that kept me going through the rigours of treatment, and those dark sleepless nights before the sweet relief of the dawn. I’d lost hope.
That afternoon, I got the call from the surgeon that I both dreaded and hoped for, as I feared the level of danger that I faced with such a small FLR. No one in the enormous team of medicos would agree it was wise for the operation to be performed at that stage. And for it to ever be considered again, they had to find out WHY my liver didn’t grow. Terrifyingly, now, there is something else unexpected – the possibility of underlying liver disease not related to the cancer, that means my liver will never be able to grow, meaning a liver resection would be impossible. I am booked in to have tests done at the hospital on Monday to determine if that is the case. If my liver turns out to be otherwise healthy, he will try a different technique to increase it’s size, and still do the resection sometime in January. If it is not healthy, then the chance of resection will be gone forever, and with it, any chance of a cure.
Last night was a difficult night, and one that took us back to the depths of despair that we felt when we first heard the words “sorry, you have cancer” on the dreadful day last December, when we started to see the whole world in black and white. We held each other through the darkness, and wondered, again, how we were meant to go on through all this.
This morning, we went back to the new place, the one that yesterday was just a house, a pile of building materials artfully thrown together, to put a roof over ones head. But all of a sudden, something happened. It was like someone coloured it in again. The fireplaces were ornate, the ancient floorboards had character and history etched into every scratch. And by golly, that crack in the kitchen wall was as cute as hell!
In some ways it feels like the tide is starting to turn for me, and not in a good way. I am struggling to shake that feeling, but I refuse to live with a foot in both camps, only half alive. Because that is all you can be when you think life has only used two colours out of a box of paints that is a kaleidoscope of bright and happy.
As my dear mum always used to say “where there is life, there is hope”. And indeed while there is, I’ll never say die.
Here is that ornate fireplace:
The worlds loveliest front door:
And this? This is what I’m living for.