Posted on January 6, 2015
Dearest Suzy Woo,
We love all our children the same, but you will always have the distinction of being the one who made us parents. I had wanted to be a mother for so long, and for your dad, you were a dream that he didn’t know he was dreaming, until the day we looked in wonder at the ultrasound screen, and saw your five week, six day heartbeat. Just a tiny beat it was then, but we were forever changed, and forever wore our hearts outside our bodies.
At 20 weeks, we thought we had lost you. I was battling serious health problems at the time, and had to see the doctor weekly. He had taken to listening to your heartbeat on doppler each week, just as a bright spot in the treatment that I had to have. But this day he couldn’t find you, and I thought you were gone, like the babies I had lost before you. I remember running outside the doctors surgery and ringing your dad, and screaming that we had lost you. A quick trip to the hospital for an ultrasound however, found you safe and sound. You were always cheeky.
And 22 weeks later, there you were.
And I was a mum. Before you, there was the promise of you, but we could never have imagined the depth of feeling we could have until they placed you on my chest. The midwife said later that in all her years of delivering babies she had never seen anything quite like the look on my face. We were such novices though, we weren’t sure how we were supposed to keep this squirming, howling little bundle alive and thriving. A few days later, as your dad carried your capsule outside the hospital, he stopped, and turned around and looked back at the hospital doors. I looked at him quizzically, and he said “I can’t believe they are just going to let us walk out of here with her”. Yes, we were pretty unsure of ourselves, but you helped us find our groove. Our firstborn. The one who made us parents. The one who made US.
Fifteen months later, I made you a sister. To say you were unimpressed at first, with the idea of sharing YOUR parents, was an understatement. You are not one to hold a grudge though, and you soon became firm friends, and partners in crime.
Seventeen months later, I had the audacity to do it again!
You were getting used to new people being added to the family though, and you were fast becoming quite the little “mother”.
But it was when I added a third sister to the pack that you really came into your own. This was the first one that you, at four, fully understood was arriving. You waited and waited for that baby, you dreamed the dream alongside us, and you patted my tummy and talked to her and told her you couldn’t wait for her to come.
But when she did come, we didn’t rush you into the hospital to see her, like we thought we would. We waited a day or so, so we could get hold of our emotions, dry our tears, and compose ourselves for your meeting. Because we had just given you a sister that you weren’t expecting, and one that WE weren’t expecting – one with an extra copy of the 21st chromosome.
We thought we had marred you life that day, somehow made it more difficult, that you would forever have a sister who was marked as different….and somehow that made you different too.
But we underesimtated your sister, and we underestimated you. The 6th of March 2008 will go down in history as the day that you were also born again. You held this one a little tighter than the other two sisters, you sang to her a little softer, and when she needed soothing, or you did, you understood that to be together meant being at peace. To watch you be a sister to Georgia has been one of the greatest privledges of my life.
I couldn’t be prouder of the 11 year old you have become. A little girl who loved dresses,and dolls and everything girly, gave way to a tomboy (and you get very annoyed when people tell you you are not a tomboy!) with a fierce determination to be incredible at everything you do. And you ARE. You are a “natural” in many areas, but you work hard at everything, and I can’t wait to see what you become. And I really think you can become anything, absolutely anything you set your mind to. You are smart, funny, talented, and very, very cool. I’d like to be a little like you when I grow up, Suze.
It’s very difficult to find out at 10 that you might lose your mum. To have your life turned on it’s head in an instant, to see your dad cry, and your mum withdraw, and hear the word cancer, when you know that other people you have known whose name has been associated with that word have disappeared forever. But you have been as brave and stoic as you are beautiful, and you have held us together with the maturity of one much older.
Taking you to the sports immersion day at the high school you are going to attend was one of the hardest days of my life. The doctors tell me that nothing short of a miracle will see me here to walk you in on that first day. But that has made me more determined than ever.
Because seeing you standing tall that day, as if you were already a high schooler, with your quiet confidence, and your determination, gave me a glimpse at the woman that you will become. The child that won the best and fairest at netball two years running, but was embarrassed to win the second year, as you thought someone else should have a chance, will grow into a woman with a strong sense of justice, and care for her fellow human being. The little girl, who at six had to ask her mother what a retard was, as someone at school had called her sister one, will grow up into a woman who fights for the underdog, and will never let a chance go to stick up for someone who needs it, or can’t do it for themselves. You are going to go places my darling. And I will fight with every ounce of strength I have to be there to see it.
I’ll leave you with some of my favourite words, from a Lee-Ann Womack song:
I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Living might mean taking chances but they’re worth taking
Loving might be a mistake but it’s worth making
Don’t let some hell bent heart leave you bitter,
When you come close to sellin’ out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance….I hope you dance.
One way or another, I’ll always be there, dancing beside you. You are the absolute light of my life.
A few days ago, 2014, my “annis horribilis”, gave way to 2015, and for me, it was bittersweet.
The cancellation of my liver surgery which was scheduled for December 5, means that my cancer experience, though only 13 months long so far, spans 3 years of my life. Diagnosed in December 2013, treated for all of 2014, and now, the wait to see if January 2015 will finally bring the operation that might save my life.
Limbo. Any cancer patient will tell you that you spend a hell of a lot of fucking time in it. You get diagnosed, and you need to be staged, so you wait. Limbo. You get staged and you get a treatment plan and wait to see if it “works” and you might have more time. Limbo. In my case you get set on a treatment plan which has a small chance of survivability with it, as long as you can jump a whole heap of hurdles. Limbo. You jump them all, but are thrown a spectacular number of curve balls along the way too….Limbo. I’ve had the liver resection, and it’s “curative intent” dangled in front of me since last February, and while there has been times it has been very much hanging in the balance as to whether I will have it or not, it has never been totally taken away. Just lots and lots of, you guessed it…..Limbo.
We’re at the pointy end of my treatment plan now, and very soon it will be known for sure whether the latest intervention to try and grow my liver has worked, and if so, I will be operated on towards the end of this month. If it hasn’t worked, I have a strong idea that close to all ideas will have been exhausted, and I will return to palliative treatment.
Yep, I’m in limbo. This one, well it’s the worst one of all. Having the December surgery cancelled only 16 hours before it was to take place shook me up enormously. It seemed there could be no more road blocks, but this was more like an avalanche. The fact that the liver surgeon ordered a procedure that he has never tried before was reassuring in that he wanted to keep trying to get me to resection, despite his assertion that the chances of me being cured are “extremely slim”. What was not reassuring was that this procedure is largely untested and he has no idea whether it will actually work. Limbo.
I expected to go into 2015 having completed my treatment. My oncologist had already told me that we would not proceed with “mop up” chemo after the liver resection, that we would just “operate out all the cancer” and then “watch and wait”. The chance of the cancer never returning was miniscule, but it would exist, and that was good enough for me.
I can’t tell you how important it was for me mentally to draw a line under 2014…well, actually to scratch 12 red angry crosses through every fucking month of it, and move into 2015 with a fresh start. Finding out that treatment was going to chase me into another year, to mar it, to make the whole bloody thing muddy and dirty, and scary, and to have the scalpel carved into my body another month, in another year…well, it’s almost been my undoing. Limbo, fucking limbo. It’s hard to keep picking yourself up. It’s very hard, as you can see, to keep watching your language 😛
Statistics say that 2015 will most likely be the last year of my life. If surgery does not proceed later this month, it almost certainly will be. However, if it does proceed and it does work, it very much could be the first year of the rest of my life. And as I sit here now, I have no idea how the cards will fall. Limbo.
When you are diagnosed with terminal cancer, which is declared immediately to be “hopeless”, you have to make the decision to live. I went through the expected gamut of emotions, and in my darkest hours I would be lying if I said I hadn’t considered taking my own life. Not because I wanted to die, I have never for one minute wanted to die, but to spare myself having to live too long with the knowledge of what was ahead. Eking out an existence on chemotherapy, having scans every few months, worrying about each ache and pain and each breath that was a little harder to take than the last, the eventual tide turning against you, second line treatment, and a steady decline to a painful death. And the people you love, the lights of your life, well the thought of watching their light dim little by little as they wait for yours to go out…..it’s agony. But it’s also selfish not to give them every day you can, take every photo, lay down every memory, and love them enough for a whole lifetime.
And so, I made a decision. That I would attack it with as much gusto as I could. I would take life and give it a good old shake, for as long as I still had it. And while the slim hope existed of the liver resection being successful, there was always a chance I could shake it for a good long time, have many adventures, fill the love banks of my children to overflowing. Time for them to never forget……to never forget the fun, and the love and the cuddles, the stories, and the hot dinners, and the achievements that their mum cheered from the sidelines. Time for them not to forget…..me.
And so, as I have written about before, 2014, though gut wrenchingly sad, and hard, and exhausting, and soul destroying, has also been a time of great personal growth for me, and life? Well, I’ve never wanted it more.
Earlier in 2014 a good friend recommended that I read a book by Paulo Coelho, called “Veronika Decides to Die”. Since being diagnosed with cancer, I have had a shorter attention span than usual, and it wasn’t great before, and my voracious love of reading was all but gone. Finally towards the end of the year I did read it..I took it with me to a hospital procedure, and despite being off my head on morphine for much of the day, I couldn’t put it down, and read 3/4 of the book in one session, and then put it aside as the subject matter resonated with me so much that it was a little too….raw.
When the friend that asked me how I liked it, and what I thought of Veronika’s death, I lied and said that of course I hated the bloody ending….(which I had not read), what good could possibly be found in someone dying just as they had finally learned what it was like to really want to LIVE. Because that was me, I was Veronika, more invigorated by life than I had ever been….because I was facing death. Nope, I couldn’t finish it, I couldn’t watch her demise….she was so like me, this woman, that I felt like if I read her death, I would die a little bit with her. However, my guilt at lying to my friend, and the puzzled look on his face when I told him I hated the ending made me realise that I needed to finish it, and I did. Without giving the plot away, in case anyone else wants to read it (and I highly recommend it), there are different kinds of deaths, and huge lessons in embracing the journey, rather than wondering endlessly how and when it will end. Because none of us know.
I want to do so many things. I see the most joyous year stretch out before me. I see myself back at TAFE, finishing my diploma. I see myself moving from room to room in my rambling old house that will hopefully soon become my new house, opening the lap sash windows in the summer to let the breeze in, and lighting the fires in the winter, to sit in front of and read books, and hear my children’s laughter. To host a book club, to drink wine with friends, to write more articles, to start a book of my own, to plant a vegetable garden in the spring, and see it thrive in the summer. And, most of all, to write a date that ends in 16.
Because Julia, she’s decided not to die.
Here is me giving life a shake on our recent Christmas holiday. Riding a 2 wheel bike for the first time in 7 years….I did it! It sounds silly, but it was a real fear of mine, and I overcame it. I have many more fears I want to overcome, and I know I can do it. All I need is time.
For as long as I can remember, I have never really allowed myself to need anyone. My childhood, though loving, revolved very much around the emotional state of one person in it – someone that i could rely on for days or weeks at a time, and find myself completely distanced from, through no fault or choice or my own, for just as long in an ensuing period. It taught me very early that I could only rely on myself, that there was no safe port in any storm, only a flimsy life preserver, which required all my own strength to hang onto for dear life.
As a result, I never really trusted anyone. Occasionally I looked on in envy when people seemed to have a “network”, those who upon the slightest hint of a crisis, had people fly in from all directions, with love, support, and practical help. I never got that, but then I didn’t give it either, and I was well aware that you only get back what you give in this life.
Over the years, it wasn’t that I didn’t make any friends, but for the most part they were people that could have wandered out of my life as they wandered in, and left me largely unchanged. Not their fault, mine. I only let people “in” so far, and like I suspect, quite fairly, that most people would have liked a greater investment in the friendship than I was prepared to give.
Then, a funny thing happened. My fourth daughter, born with Down syndrome, arrived in the first term of my 4yo’s kinder experience. Now, this child LOVED kinder. And with a new baby in the special care nursery, and a new specialist to contend with every day in the beginning, I realised that she simply wasn’t going to be able to go every day as kinder drop offs and pick ups often co-incided with times we needed to be with the baby. I barely had time to feel guilty about this when I was approached in the supermarket carpark by another kinder mum, who I only knew briefly, and she asked me if there was anything she could to do help during our time of need. I of course said that was lovely, but we would be fine. Then, she took charge, and said look, what you are going to do is drop Dakota off at my house before you go up to the hospital, and I will give her some lunch before dropping her at kinder in the afternoon, and if you are not finished at the hospital by then, you are to ring me, and I’ll give her dinner too. She then furnished me with her address and phone number and said she’d see me the next day. I literally stood there with my mouth open as she walked away, but instead of chasing her, I realised that to not take her up on her offer would only disadvantage my kinder child, and that would be very selfish of me.
So began my journey of learning that no man, or indeed woman, is an island. The mums at that kinder became my “network”, and though I was still nervous about friendships, I found I very much enjoyed the security of having one. And little by little I learned that I also had plenty that I could give back to people. Over the years that followed, and found four in primary school, there were plenty of ups and downs, and if I wasn’t having one, someone else was…..I became one of those people who found themselves surrounded, enveloped by love in a crisis, and often, I did the surrounding, saving the space around someone in need. It’s been, in both instances, a privilege, and one that I am very grateful that I opened myself up to. The more I have reached out, the more love I have received, and the more I have healed from the the ghosts of past hurts.
And then, of course, came cancer. The network surrounded me like nothing I had ever seen before. Meals, housework, messages of love, and astonishingly, a beautiful friend, who I had met when she cared for my little Georgia in a child care centre, held a fund raising market for our family, which became so enormous that it had to be held at my children’s primary school in order to hold the amount of stallholders, most of them strangers, who wanted to help our family. The day of the market is not one that I will ever forget. I worried so much in the days preceding, that not many people would come to the market, and this gorgeous friend, who had put in an astonishing amount of work, and all those stallholders would have no one to serve. As we approached the roundabout to the school on the morning of the market, I held my breath, and then let it out in a long exhale. There were HUNDREDS of cars, literally hundreds. And the crowd did not let up the whole day. My children were treated like royalty, free rides and food all day, many gifts prepared for them by generous stallholders, they had the BEST day, and I was so grateful of the acknowledgement of how incredibly hard the preceding months had been on THEM.
I was in somewhat precarious health on the day of the market, having just got out of hospital the day before with an infection, and I was on chemotherapy. However, I will always remember it as one of the best, and most overwhelmingly beautiful days of my life. All day, I was swept along in a wave of sheer love. I spoke to as many stallholders as I could, and some of them even burst into tears when I introduced myself and they realised I was the person that they were there for. My own tears were never far behind. And my god, did every single person I knew come to the market that day? I’m sure they did. I know for certain that I spoke to over a hundred people that I actually knew. How had that happened? To that kid that was always looking out for a life raft? There was so much to gain in reaching out, in trusting, in giving and receiving love. There was SO much good in this world.
With Dakota, and Tammy, the lady that organised the market day, one of the most beautiful people you could ever hope to meet.
And some scenes from “Watson’s Market”.
Tonight though, my friends, I find myself nervous. A dear friend, who also has bowel cancer, posted earlier today about receiving a message from a friend saying that she had basically been a pretty bad friend since she had cancer and she needed to pull her socks up. Now, this young lady has had an astonishing amount to contend with in the last 12 months (she was diagnosed the day after me). Close to death on more than one occasion, time in ICU, and a long stretch on chemo which has been extremely unkind to her. To say she has done it tough is an understatement. Yet, someone still saw fit to tell her she needed to try a little harder. Words? Well they absolutely fail me.
And yet, this is far from the first time I have heard this. Friends losing friends over cancer. It seems to be, in fact, extremely common. It’s not happened to me even once…in fact, with this journey now being a very hard 12 months plus long, no one has professed to be sick of me yet. They’ve shared every triumph in my treatment, mourned every bump in the road (and even when a whole fucking tree has fallen over the road), the cards and flowers and gifts and offers of practical help have never slowed down.
I’ve got a very large support network, and I am very grateful for “Team Julia”. I honestly believe that what I get from each and every one of you is part of what keeps me alive. But “compassion fatigue” is very real, and honestly, if you need a break from me, take it. I want every single one of you that were there at the start, to be there at the end. Not the end of my life, but the day I can announce that I have beaten this, very very much against the odds. And I promise then, that I will be there for each of you in your hour of need, just like I hope I was before. Be patient, I’ll be back…and it won’t be long.
Thanks for everything, and I love you (you all know who you are!)
I leave you with a photo of my most treasured possession in the world, my “love quilt”. It arrived on my doorstep a few weeks after my diagnosis, a joint project by my many friends who also have children with Down syndrome. It is covered in photos of my most treasured people, my children and my Gaz, and on the flip side there are patches sewn on with messages of hope, and inspiration, and friendship, from each and every one of the families involved in having it made for me. If these were a book, it’s pages would be well thumbed, as this quilt has come with me to every chemo, every hospital stay, every trip in the funbus, and it lives on, or near my bed at all times, so I can always see it and feel the love that went into it.
It has to be said that the two greatest challenges that life has bought me, being a child born with Down syndrome, and myself being diagnosed with cancer, have also made me realise what an incredibly lucky person I am, really, one of the luckiest, ever, in the world.
One more thing. If you are anything like I “used” to be, and find it hard to reach out…give it a try. The risks can seem great, but the rewards….just be brave – you won’t regret it
On the 11th of December, I “celebrated” my “cancerversary”, a year since diagnosis.
It is a course a moment that will be burned into my memory forever. As for some of the following weeks, some of it was a blur, but there were other moments that were seared indelibly, and indeed, the wounds cut nearly as deep as the summer afternoon on 11 December.
One of them was the Christmas shopping. In the days following my diagnosis, I became more and more zombielike, and people started to carry me through certain events, knowing my complete incapability of being able to do anything but merely take another breath through the pain and the terror, and heaven knows, sometimes even that was nearly impossible.
No one took more of the weight of my “thought load”, than my dear friend Kez. We met on on the day our eldest kids started prep together, and I found out later that she thought I was a snob. We bonded some time later over our love of a good wine, and a bloody good quantity of it, and we’ve never looked back. Kez is the sort of friend that you only meet once or twice in your life, a true soul friend.
So, in the couple of days after my diagnosis, she suggested we get the Christmas shopping “out of the way”. I knew she had to feel that she was taking care of the practicalities, but for all the world, I didn’t know how I was going to shop for my children on what might well be my last Christmas with them.
As a general rule when you get diagnosed with bowel cancer, you get your initial diagnosis, and then are sent off for a CT scan to “stage” it. It comes in stages 1 to 4 (we pretty much knew by my tumour size that I would be 3 or 4), and 4 pretty much means you are toast. And in my heart of hearts, I knew that I would be stage 4, due to a nagging, stitch like pain I had developed over the area of my liver in the preceding few weeks.
From memory, we went Christmas shopping on a Tuesday. And Friday, I had the appointment with the surgeon to find out the staging. So, by the Tuesday when we went shopping, I had my life reduced to a matter of hours, or at the most days. I could enjoy the Tuesday, Wednesday and Thursday, before I found out it was all over on Friday. I wasn’t in a very positive frame of mind to say the least.
So, Kez got a trolley and she steered it through Kmart. She has two boys, so shopping for girls was going to be a challenge, but she gave it a red hot go while trying to keep me upright. She held up things from all over the shop and said what about these, would the girls like these? I either nodded no, or yes, mutely, and she chucked them in the trolley, four fold, one for each daughter. Then she conveyed them all onto the registers and I just stuck my card through and paid. We decided to have lunch, and I figured I might as well enjoy it, as I still had those three days, at least. Those days I thought it might be my last “festive” season, but indeed, I didn’t KNOW. And then, as i got in the car, and Kez packed away all the loot, I got a call from the surgeons secretary. He was in receipt of my scans, and he wanted to see me sooner, would the next morning, first thing, be convenient? I would have liked to have told her that no, it wouldn’t, that the universe was stealing all the good days and hours that I had left, but of course, I said I would come. We sat mutely over lunch, each lost in our own silent hell. It was, in Kez’s words, “an absolute shocker”.
Of course, I got my stage 4 diagnosis the next morning, as expected. And if anyone had told me that I could endure what I did the in the year following, I wouldn’t have believed them. If they had told me that I would be Christmas shopping the next year, as a person with hope, and even happiness, my word, I would have thought they were stark raving mad.
But today, I did exactly that. Kez and I retraced our steps. Same Kmart, same Target, same town for lunch. This time I moved the trolley under my own steam. She shopped for fellas, and me for girls. I chose my kids own presents, and sometimes I even used statements like “next Christmas”, with all the belief in the world that I would have one. Sometimes we even wandered to different parts of the store, without Kez having to worry I might try to strangle myself with some tinsel, or a set of Christmas lights.
Everyone thinks stage 4 cancer is the end. You are told, in no uncertain terms, that one day, it certainly will be. Stage 4 cancer is, by it’s very definition, terminal cancer. So, I still have terminal cancer, but while still in the active stage of treatment, I still have a chance of living longer, and certainly, I am already living better. Cancer still dominates my existence, with it’s very intensity, but it doesn’t steal the contentment from every single one of my days. I’m still a work in progress, but learning to live with it is possible, when it’s the only choice you have.
If you have a friend or relative who has just been diagnosed with cancer, especially at stage 4, share with them this blog. I know how it feels, I’ll never ever forget it, but it doesn’t keep feeling the way it does in those early days. I wish someone had told me that, but I probably wouldn’t have believed them.
Stage 4 cancer, one year on, looks like this:
It’s embracing a new “retro” style, that you always thought was “you”, but never quite had the courage to try.
It’s about having to spend the night in hospital, but lighting up all in sundry with a red lipstick and a new dress, that someone very kind sent you just to brighten up your day.
It’s about this. Holding onto those you love, with all that you have.
And it’s about this:
It’s about seeing your much loved brother walk your niece down the aisle, and having someone else you can call “nephew”. And enjoying a brilliant weekend away with all your family.
Stage 4 cancer is not the end. And life is for living. Get out there and live it – none of us know how long we’ve got, and there is not a minute to waste.
It’s just (unlike me) going to be a short post tonight, to let all of you who don’t know me in Facebook land or real life, know what happened today.
To cut a long story short, it’s was the liver growing procedure that failed, not my liver. It does show some signs of inflammation, most like to be caused by chemotherapy, but nothing major at all, and definitely no reason why liver regeneration can’t occur.
The liver resection, it’s so coveted, and so hard to get, not many get a second throw of the dice – but I am coming up to my third. The only thing now is to try and grow the liver a little bit, and I will hit that table early January.
The fat lady? Well, she’s not sung to me yet, in fact, she appears to have lost her voice, even if her lips are still moving. She might have a message for me, in her own mute style, but I’m not listening. She’d have to get a hell of a lot louder than this.
And my house? It’s not just coloured in, but my imaginings find it in sharp relief. And sometimes the picture moves. I hear the click of my fingers on the keys of my laptop, as my book begins to take shape. I feel the warmth as I stretch out like a cat in front of the open fire on what will not be my last winter. The bath bubbles pop in that big ole clawfoot bath. There is a faint whiff of fresh smelling babies, as they drift past on the way to their rooms, and ask to stay up for one more story, one more kiss. And I’ll never say no, as I will always know how easily it can be taken, how tenuous life is, and how I’ll never live that day again.
A decision about how round 3 will proceed will happen over the weekend, and there will be another procedure taking place next week, to further the plan.
And so, I stay on and fight. I see the sun set over my big ole country homestead. But always with the dream of another day.
Dare greatly, I will. But failure is not an option.
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.