Posted on November 28, 2014
Is everyone familiar with the “Choose your own adventure” books? They were a massive favourite of mine in the teen years. Basically, the stories were written in “second person” and allowed the reader, after being introduced to the story, to choose where they wanted it to go, and to choose from a series of endings (I can’t remember how many, but from memory there were a lot of choices for endings). Some of the endings were “bad” and some were “good”, but the best thing about it was that if you were unhappy with how things ended, you could just go back and choose another ending, until you got one you liked.
I have been wondering lately what I would do if I had that choice, for my life. It seems obvious that I wouldn’t choose cancer. The pain, the fear, the operations, the medicine that tries to save you and kill you in the process, the scans, the fear of what they will tell you…the waiting for a number to be put on your days. No one in their right mind would choose this. But without it, I would not have gained the unique perspective that I have on life now that I will never know how long I will get to live it.
I am still in touch with a lot of people that were my classmates when doing the first year of my two year diploma. I completed one year, and was then diagnosed with cancer, and gruelling treatment made it impossible to continue. Now, one by one, I am watching them all finish their diplomas and gain job contracts, and I feel a pang, knowing that is what I “should” be doing. But if I had studied my second year with the same intensity that I did my first, would I have had time to write the articles that I have had published this year, a couple of which I have been really proud of? Proud both for the courage I had to find to go to the depths of my own despair and tell some of my stories, and the fact that I received a lot of feedback from people whose journeys were similar to mine, saying that I had helped them greatly in the telling. It’s been such a privledge being able to do that. And I know I very much want to do more of it. And, would I now have the beginnings of a book in my head, something that I have been told to write many times over the years, but never thought I had in me. I think now that this will come to be.
And what of my children? If I had never known the pain of following the instinct to withdraw from their lives (an instinct which, in talking to my fellow “cancer mums” I have found out is pretty much universal when you are diagnosed with a life threatening disease), would I have had that “lightbulb” moment where I realised that if my time with them was limited, they needed me more, not less, and me throwing myself into being their mum with more heart than I had ever done before was not going to make them miss me more – they were going to miss me anyway. They have lost a bit to my disease, my energy has not allowed me to arrange many playdates, or take them many places. But mum laying in bed more than usual means lots of time to snuggle and talk and watch movies, and plan what we’ll do in the “future” when cancer is something that can live in some compartment in my head – always there, but not in our lives every day. The children know my condition is serious, but they still, with all the optimism and innocence of children, take for granted that our future together will be a long one. And me? Well I just hold them tight, and hope like hell.
This photo was taken last night, 8 days before I go into hospital to have a huge operation which aims to remove the last of my visible cancer, which dwells in my liver. There is quite a bit of cancer there, and I will most likely end next Friday with only 30% of my liver left. Thankfully the liver is able to regenerate and six weeks to two months post surgery should find it back to it’s previous size. I’ve got to hang on for quite a ride in the meantime though, with a surgery that will have me on the table for somewhere between 6 and 8 hours (and due to the extent of the procedure, most likely the latter). I have been taken through what will happen during my stay in the intensive care unit, and we have worked out a plan for spinal pain relief in the first 24 hours, which will keep me numb from the chest down, and also spare me the inevitable severe pain which comes with such a major surgery.
I would be lying if I said I wasn’t scared. The percentage of people that die during this surgery is not particularly high 1 – 2% approximately. However, the chance of developing what my liver surgeon calls “serious complications”, any of which can be deadly is around 20%. This aspect of the adventure doesn’t feel particularly character building, and I must admit it is one that I do wish I could choose the outcome of.
However, I can’t. And the fact is, before every ending there is a story, and what you do with your time on this earth is much more important than how it ends. This operation, though scary and major, gives me the chance to have many more adventures with the people I love.
And isn’t not knowing how it ends what makes the adventure so much more interesting?
Growing up, I always dreamed of the family I would have one day, and it was one very different to the one I grew up in. My mum and dad did their best, but they were respectively 43 and 51 when I was born, and my brother and sister were 21 and 19. They’d long since finished having children, and though I was certainly a “happy accident”, I think having a child so late in life was quite difficult for them. They were gregarious and social people by nature though, so I was always in company, though generally with people a lot older, who never had children my age.
In my early teens I made friends with a girl who was the eldest of 6 children. She was probably the only person that I met that was more sullen than me, so it was a match made in heaven! I used to love going to her house more than anything. While she seemed to resent the noise and chaos, and the fact she had to share her parents with so many other people, I envied it, greatly. I lit up in the company of these people. Her father was a “mad scientist”, affable and scattered, and her mother was a batshit insane artist, always covered in paint, and always quite flustered, while she tried to create as her children all fell over each other and spilled drinks, fought, and laughed – the noise level was always deafening! It was so different to my quiet existence, and I always said I would have that one day, even if I had to make it myself!
Yes, I dreamed for many years of this family, and I even had a vision of the house I would bring them up in. It wasn’t a modern McMansion, but an old house, full of history and character, like something out of The Secret Garden, or the idyllic country houses in my beloved Enid Blyton books.
Years later, I had the kids. House full of noise and chaos – check! But I never quite got the home I wanted. We started raising our family in an 11 square house that, while lovely, you couldn’t swing a cat in. By the time I had four under 5 I just couldn’t live there anymore, and bought the first huge house that Gaz and I both agreed on. With five bedrooms, a study, 3 bathrooms, 3 living areas, and an entertaining deck, it seemed perfect, though I realise now that anything “bigger” would have looked “better” to an harassed mum with one tiny living area, constantly covered in toys. We didn’t put a lot of thought into where the children would play though..with the house on a 550 sqm block with no backyard, and nowhere for children or pets to run.
Gaz and I are addicted to real estate.com and started looking at acreages a couple of years ago. We were a bit away from being able to afford one, but we’ve looked at a few properties over the years. There has always been something that one of both of us hasn’t liked about them, and not at any stage have we ever fallen in love with the same one. Not for Gaz is the English country garden, or fretwork or lead light of any description. Open fireplaces, ornate mantles, picture rails, attic bedrooms – nup, not for him. A nice, low maintenance new house, with flat acres, ready for lots of toys to be parked that is where he saw himself. Our dreams were so different, when it came to where we would eventually live, I feared we would never agree.
And technically – we still haven’t! A few months ago, I fell in love with this beautiful house built in 1910, on an acre, only a few minutes from our children’s school. I went to an open for inspection with the children, but not Gaz, and as soon as I walked in the door of this house, I knew it had to be mine. It had the lot. Fretwork, lead light, 12 foot ceilings, an attic bedroom….so much history and character that I could almost see children, 70, 80, 90 years ago, running through the rooms, in their long, lacy nighties, the sound of their laughter echoing off the walls of the wide hallway. And that thought made me happy.
I bought Gaz back to see it. I was waiting for the “you have got to be kidding me”, but it didn’t come. Yeah, I like it actually, he said. Well! That was the end of me. I went on a 3 month campaign to make it mine. Lots of calls back and forward to the agent, and from him to the vendor (as the price was more than we could afford), and lots of cross words with Gaz, who had plenty of time to think about it and decide that while he liked it, he didn’t “love” it. I wouldn’t be deterred, never have I been so certain of anything, so yesterday, our offer was accepted on this:
Yes, I am a crazy woman that takes my children to open for inspections, and photographs them in front of houses that I wish to raise them in!
So, exactly 14 days from now, I will be on the operating table, having one of the most major operations you can have. Before that, I have to get this place spick and span and decluttred, and steam cleaned, and photographed and on the market, as we cannot exchange on my dream until this house is sold.
Many people probably think the timing of this is insane, and I am some demented person, and I couldn’t agree more. But I also accept that there is never going to be a right time for me, and dreams must be chased at the earliest possible convenience. Part of me says to myself “but this is madness, what if you die?” But the other voice, the louder one says “oh my goodness, but what if you LIVE”. And that’s what I intend to do. Because once upon a time, a little girl dreamed of lots of children, running through an old house, with lots of room outside, and trees to climb, and fresh air to breathe, and this, well, this is it.
This is my happily ever after.
I took this photo back in March, the day I had emergency surgery for my first bowel obstruction. I had been in hospital overnight, after presenting with agonising pain, and the cause of the problem had been identified, but the surgeons had decided that there was just enough time for one more test in the morning to determine whether such drastic surgery really must take place, or something more conservative could be done.
Gaz was, as always, by my side. When he had to leave for the night, I was peaceful and pain free, with lots of morphine on board, and I tried, as I always do, not to show how scared I was. I urged him to go to work the next day, that I was fine, that there was nothing he could do, and I would see him after work the next day. He said he would, and I went off to sleep.
I woke up the next morning to the feeling of a warm hand slipping into mine. And there was my Gaz, with tears in his eyes. But it was still dark….I was bewildered. I asked him what the time was…it was 5.55am! Considerably before visiting hours, but no one had the heart to turn him away. “I tried Jules” he said. “I tried to go to work, and I drove for a few minutes towards the truck, but then I turned the car around and came here. I couldn’t leave you to face this alone. So I’m here. I’ll be here all day.” And he was. He never lets me face anything alone.
I talked a bit in my last post about how I have been kinda low on “luck” at various points in my life. But I know now that the day I met that kinda height challenged guy, in motorbike leathers, with the shiny Harley in St Kilda, 15 years ago, I seriously fell on my feet like few women have ever been lucky enough to do.
When we met, I was in robust health, but for a crappy pair of hips, and was awaiting a hip replacement. The saddest thing was not being able to share long motorbike rides with Gaz, as my hips just wouldn’t allow it. We looked forward to the day that it was all fixed, and we could go on longer rides.
I got wheeled away for that first hip replacement surgery with a heart full of hope. I was going to be freed from 17 years of pain, the last two of which had been nearly unbearable. I was going to be able to walk, sit behind my man on the Harley, feel the wind in my hair, have a baby. What a life changing day. And it was, but not in the way we expected.
When I woke up, I found that I had been paralysed from the knee down, from my leg being slightly over-extended when they placed the new hip. It was a horror story. I could not move my leg at all, nor could I feel it from the knee down. You could have hit me with a hammer and I would not have felt it, but there was all this pain inside my leg, like it had been dipped in acid from the knee down. I was shipped off to rehab in far worse condition than when I checked into the hospital 10 days before.
Each day, instead of taking a happy and hopeful woman home to recover, Gaz visited me in the amputee unit. Rehab for me was a terrifying and lonely place, and I was depressed and broken. I kept waiting for Gaz to tell me that this was not what he had signed up for, and indeed I told him to leave and go on with his life, but of course, he never did. Instead he assured me that he never would, and when I came home, he administered my 10 different types of drugs that rendered me unable to even have a conversation with him, and helped me shower and go to the toilet and do things you don’t want your partner to have to do for you. I lost 22 kilos in 6 weeks, and could barely eat at all. I remember waking up about 3am one morning and telling him I was hungry. He sprung out of bed like a jack in the box, throwing on his clothes and asking what I wanted, so desperate to capture this window where I might actually eat some food. Thankfully we lived in St Kilda and he was able to produce the requested kebab in the middle of the night!
The world can seem like a shallow place. And probably for that reason, I was worried that Gaz would find me less attractive after I had two 60cm scars carved in each of my legs, where the hips were replaced on both sides. Of course he thought this was ridiculous, and didn’t bat an eyelid.
I’m not a very vain person, but the day that Gaz arrived at the hospital at 5.55am was the most challenging of my life, and was confronting to my self esteem like no other. I was taken down for some final testing later that morning, and once this was done everything went into overdrive. They wheeled me back to the ward, and Gaz, with tears in his eyes was the one that delivered the news to me that I would be taken straight to surgery to fit me with a colostomy bag. Curtains were drawn around me, the nurses started to wash me in preparation for surgery, permission forms were thrust at me sign and I was told I was going straight to theatre. I began to cry hysterically…we knew a colostomy was coming with the cancer surgery a few months down the track, but to have no time to prepare for something so life changing….I can’t even describe it. I clung to him, looking at him frantically, saying how “revolting” it would be and I didn’t know how I was going to handle it. He cried too….”no, no, don’t be silly, it’s to save your life, as long as you are here, who cares what we have to do. We’ll get through this”. And he ran beside the trolley, holding my hand until they told him that he could go no further. And of course, his was the first face I saw when I opened my eyes, on the other side, a not so proud owner of a “front bum”.
After a few hours, I decided we had to look at “it”. No one told me that once things settle down, the bags are quite discreet, skin coloured and you can’t see through them. Not so straight after an operation….the are roughly the size of a hot air balloon…and SEE THROUGH. I was absolutely mortified, and pulled the sheet back up to my neck again. He pulled it down, examined the whole business with interest, and then made some crack about drawing a face on the bag….we laughed, and we never really looked back. The gift of knowing that you are loved, no matter what, to know that you only have to worry about getting better, not what your partner thinks of you as you park your horrifyingly scarred body next to him in bed each night….well, it’s the greatest gift of all. The man hasn’t got a shallow bone in his body.
The “bag” has been joined by a few more scars now, and there is one more to add, an L-shaped one over my liver. This is the scariest yet, but it’s a great comfort to know that Gaz will be the first face I’ll see, the face I’ve always loved.
By my side, like he’s always been.
Growing up, I was not a very happy person. All seemed well in my life until early primary school, when years of sexual abuse meant that the happy 6 year old gave way to a sullen child, who never knew where she fit, and most adults didn’t know what box to place me in either. That child turned into a rebellious teenager, moody and negative. I was a girl who never thought she deserved very much in life, and pretty much never got it.
I moved to England and married at 21. It was the beginning of a few happy years for me, where my husband and I, though volatile, were very much in love. We travelled extensively, lived in an exclusive part of central London which was paid for by my husbands employer. It was a heady time, we could go to Paris and Amsterdam for weekends, eat out any time we wanted, and every night was spent in the pub. The trouble started a few years in, when I asked to have a baby, which was something we had both said we wanted, but my husband had changed his mind, and he would never change it back again. That was the beginning of the end, where i existed in bitter resentment at the goal posts being moved to such a drastically different position on the field, and he put up walls I could never again penetrate, angry the he wasn’t “enough” for me by himself. We remained married for 9 years, which in hindsight was many longer than we should have. I guess you hope you can make it right, no matter how much writing is on the wall.
And, then there was Gaz. We fell, fast and furious. I met him at the local bottle shop (whoever said romance was dead?) and I saw his Harley before I saw him. To cut a long story short, i asked him to take me for a ride, and he said sure, where to? I gather he thought I might ask to go around the block, or a quick trip down Beaconsfield Parade to Port Melbourne, but he was affable enough when I suggested the Great Ocean Road. We set out a few days later, and we got a couple of kilometres away, before I realised that my hips (which were pre hip replacements at the time) were not going to hold out until the freeway, and had to tell him to stop. We found a local pub with a beer garden and sat there for 7 hours, putting the world to rights. We were goners by the end of the day, and 15 years and 4 kids later, here we are.
Our path to parenthood was not an easy one. Falling pregnant was not a problem, but for me staying pregnant was. After the misery of several miscarriages, we had to put our plans on hold so that I could have my first hip replacement surgery. This went horrifically wrong, with my sciatic nerve being so badly damaged during the surgery that I was left completely paralysed from the knee down. I spent many months in inpatient and outpatient rehab at Caulfield hospital, and then was hospitalised several times (for a month or two at a time) with staph infections and septic shock which resulted in a MET call. Finally they were certain that the infection had been successfully dealt with, and we were allowed to get pregnant. We set out to do just that, but a few weeks later, on Christmas Day, I landed in hospital again in septic shock, and a bone scan revealed that the infection was actually in my bone, hence the reason it would not go away. This bone scan came a couple of days before our positive pregnancy test, and we were told that we would need to terminate due to the bone scan. We decided however, to take our chances, and what do you know, this pregnancy progressed like a dream, despite the stress, the medication, the subsequent blood clots which had me injecting clexane every day for six months of my pregnancy, the death of my beloved father at 20 weeks pregnant, a four hour operation to clear the bone infection when I was 15 weeks pregnant…at every scan, a bouncing baby (now known to us as our 11 year old daughter Dakota ) appeared on the screen, seemingly unphased by all the drama.
All this led me back to the persistent notion that I had always had – that this was what I deserved. I never took the time to try and work out what it was that I might have done, but to have this much bad luck, it must have been pretty awful.
After that though, my luck seemed to turn. I had three healthy babies in quick succession, all beautiful girls. I must have still been stuck on the idea that fate had more shit in store for me though, as I can distinctly remember writing a post on a parenting website I was very active on at the time, asking if other mums constantly lived in terror of what was going to go “wrong”…..sick children…losing my husband, dying myself….I was never sure what it was going to be, but I was sure it was coming. I simply couldn’t be that lucky.
At the 20 week ultrasound with my fourth child, the sonographer told me that daughter number 4 looked perfectly healthy in every way, and I walked out of there on cloud nine, but somehow, with a sense of disquiet. My head was still full of the odds of having four healthy children, and how they got less with each child. Poor Gaz, who is an easy going guy who just takes things as they come didn’t quite know what to make of me and just shook his head and told me to be happy…that quite frankly, my time had come.
Then Georgia was born….with Down syndrome. We didn’t take long to come to terms with this, and in a way, I was elated, because I had four beautiful and healthy daughters, and I was convinced that THIS WAS THE THING. This was this awful thing that was going to befall me and destroy my happiness, and my goodness, it wasn’t so bad at all….just Down syndrome? I could do that!
And with that, I settled right down. Maybe Gaz was right, and this WAS my time. Perhaps the universe thought it had thrown enough at me, and this stunning family was my reward for getting through it without dying from the pain. And bit by bit, I cast off the negativity, and I learned to enjoy my lovely family, with absolutely no doubt in my mind that I would do so for a very long time.
Then in 2011, Gaz was diagnosed with prostate cancer. It was what killed his father, so we were very scared indeed. It shook my still foundering belief that good things were meant for me, but thankfully it had not spread, and despite giving a year of our lives over to it, he was successfully treated with surgery. I was shaken, but not beaten, and after all, I was wrong about Georgia….THIS WAS THE THING. It was a whole fucking lot worse than Down syndrome, but hey, we got this. Happy family, still intact.
2013 was, in many ways, the best of my life. All my children were in primary school, and I enrolled to study a diploma of Community Development, having enjoyed the Community Services certificate 3 I had done the year before, very much. It was a hugely busy year, where I juggled lots of assignments, and the school run and after school care, and sick kids, and placement, and towards the end of the year I felt very run down and tired, but I was HAPPY. Life was too full, but I was so future focused. I saw myself in my future career, and after years of devoting myself fully to being a mother, I had balance. I felt strong, and confident, and like I could do anything, and I had long since cast off any idea that I didn’t deserve to be happy. I’d done the hard yards, and despite everything, I’d come out on top. Yep, 2013 totally ROCKED, until the 11th of December, when a diagnosis of terminal cancer proved to me, once and for all that THIS WAS THE FUCKING THING. This was the thing that was going to take me from my family, take my children’s mother, and there was no use fighting it, it was, in the words of the treating team, un-fightable, and my death, in 3 months to two years, completely inevitable. Oh my word, this was THE THING.
How easy it would have been to give up. A few times I nearly did. The certainty that this was THE THING all along, almost bought with it a feeling of peace. This was what I almost waited for, and I didn’t have to fight it anymore, and didn’t have to fear what was to come, it was here, and it was going to take me. And yet, in the face of this, the biggest challenge and by far the biggest obstacle of my life, I found I couldn’t welcome that negative Julia back in…not that broken child, that unhappy teenager, that girl whose 20’s kinda sucked in a lonely marriage. I couldn’t go back to that person it took so long to shake off. Because I wasn’t her anymore.
And so, this isn’t THE THING, it’s just A THING. I don’t deserve it, and I didn’t do anything to bring it into my life. It’s a big, massive thing, but it’s the last thing, and just something else to overcome. Fate won’t dictate the ending, the one I thought began when I was six years old. That is up to me to re-write, because I finally believe I deserve my happy ending.
I haven’t got a date for my operation yet, but I do know it is in the second week of December, so that’s close enough. We’re looking at about 4 weeks, and it feels pretty surreal, I can tell you now!
I had my last chemo infusion 13 days ago, and I THOUGHT it had treated me pretty kindly this time, as I had a reduced dose of the drug that the body seems to find the least palatable (oxaliplaitin, also known in cancer circles as “POXY OXY”). Unfortunately, as I also take oral chemo for 14 days post infusion, my immune suppression has just peaked, and I have 12 ulcers in my mouth that I can actually count. I can’t count the ones that I do believe have found their way down my throat. Ouch.
Enough of all that though! Up until today I have felt pretty good, and have been concentrating on having some family fun! We started out with a Melbourne Cup long weekend trip to one of our favourite places, Mitta Mitta in country Victoria. We have a bus motorhome because…well, four kids and the cost of hotel rooms…so we thought we might as well.
It didn’t start out all that well! It’s a 5 – 6 hour trip, but you can make that 7 at a minimum with 4 under 12. I wouldn’t mind a dollar for every time I was asked are were there yet, and it was VERY hot. About 1 hour in, two of the children looked like this:
Around 2 hours in, the bus floor looked like this:
If this makes you feel better about your lives, my work here is done.
It was all worth it when we got there though, and calm and peace descended upon the whole family. This is a place where you let your kids get on their bikes first thing, and you only wonder idly from time to time where they are. Something that I used to do myself as a child, but couldn’t allow my children to do now without being on the edge of a nervy breakdown all the time, but Mitta, well it’s different. It’s like a place from a different time, so beautiful and special. I read two books, cooked for my family, spent beautiful times with my extended family, and felt for all the world that I could just keep on going like that forever and ever…like there was nothing actually wrong with me at all. And yet in a month I am going to have an operation that will remove 70% of my liver. Sometimes it can be very deceiving, and very difficult to fathom how ill I really am.
Some more photos of our time at Mitta:
It was idyllic. I didn’t want to leave. Leaving meant real life was closer to getting real. Loved.every.minute. You never know how precious “normal” can feel until your life becomes so far from it that you can’t grasp that you ever knew the meaning of the word.
More fun times were to come though. We left Mitta on Tuesday, and I was all set to drive to Canberra on the Friday just gone for my nieces wedding. But first I had to come back to Melbourne and pay my last visit to my oncologist before my care was handed over to the liver surgeon for the time being. I wasn’t expecting much, but what I found on that Wednesday was astonishing. My cancer markers, which had been significantly abnormal at the previous appointment 3 weeks before, had returned to completely normal levels. It showed that the portal vein procedure I had a couple of weeks previous to starve the two active tumours on the right hand side of my liver of blood has been a complete success…and they are no longer active. Words pretty much failed me, and the oncologist was a bit on the emotional side as well. He never believed that I would be a candidate for my upcoming operation, and knowing what i know now about how infrequently he would see someone with cancer as advanced as mine actually get to this potentially curative surgery, I can understand it. We shared a little hug, and he was so thrilled that we are on the cusp of seeing this day that seemed so unlikely at the start of this awful journey. A momentous day indeed.
So, I set off on my big road trip to Canberra at 6.15am on Friday morning with a huge spring in my step. It helped that I was attending alone (my husband stayed home with the kids), but meeting my whole family up there, who were coming from all over Australia. I made the drive in just over 7 hours, with two stops only when I wanted to make them, and arrived in sunny Canberra mid afternoon. Nobody asked me if we were there yet, and I can assure you that the floor of the car at no time looked anything like the floor of the bus on the way to Mitta, though I did throw a Minty wrapper to the floor once, just to see if there was anything in it. I think it must be more fun when you are a child.
My sister, nephew and I shared this room:
It was dollhouse cute and very comfortable. I really, really liked hanging out in it with the door open, listening to the fountain outside and the sound of no children. Does anyone sense I was needing a bit of a break? LOL. My nephew and I went out for a fancy dinner and ate it while hot, and no one cried. It was epic.
The next day, I had the opportunity to meet up with the lovely Emily, who is part of a close knit cancer support group that we have formed. We have all become very close and the chance to meet Em, who lives in Canberra was too good to pass up. We had so much to talk about, and I felt like I had known her forever. When you talk every day, even if it’s just online, you jump straight into a friendship with no effort, because it was already there. And when you have shared the trauma that is cancer…..well, you feel so understood. Very special. Much love, Em.
After a delicious breakfast at a trendy cafe (did I mention that was also eaten hot? And no one spilled their drink…) it was time to go back to the dollshouse and get ready for my nieces wedding.
This is my sister and I, all ready for the big event:
The ceremony was idyllic, the joining of two beautiful people in a formal sense. They are both amazing people, my niece and her new husband. My favourite moment, and there were so many, was when my other niece, the sister of the bride, escorted the brides daughter down the aisle to the tune of Sesame Street. Just sums up the relaxed, creative and funny people they are. And the whole night was a testament to it.
Alas, the next day I had to return to reality, but it’s the best weekend that I have spent in a long time. I love my hubby and children, but after the year I have had, where I have been in control of basically no aspect of my life, it was pretty special to just be so carefree for a couple of days, and remember the strong, independent, and quite frankly HAPPY woman that I used to be. And I can be again.
That’s what all this is about. Just another thing I’m fighting for.
Yesterday was a very, very big momentous day for me, and one that I was told I would never see – my last day of chemotherapy.
To explain why it was such a big thing, I must tell you a story of how things were when I started on the chemotherapy path. Upon diagnosis of stage 4 cancer, which came 6 days after my initial diagnosis of bowel cancer (ie, stage 4 meant that I had learned that the cancer had spread to my liver), I met my oncologist for the first time. He explained that my scans had been emailed to a liver surgeon to see if I could undergo something called a liver re-section, which as it turned out is the dream of any person with metastatic bowel cancer that has spread only to the liver, as it means surgical removal of the primary and metastatic cancers, and there is a small chance that they don’t return. At the very least, it offers more than 50% of patients a lifespan of 5 years or more, which is significantly higher than the usual stage 4 survival rate which sits around 5%. He said however that the liver spread was “very significant” and in his opinion there was just too much liver involvement for a resection to be possible. He said that I needed to start chemotherapy “immediately”, and alluded to the strong possibility that the chemotherapy would have no effect on the cancer at all, as it was so advanced that sometimes it just got “too big” for the chemotherapy. However, he did feel that most had some response. Then he said the words that really sucked the breath out of me: “Once you start chemotherapy, I need you to understand that you will never stop. We might give you a break for a few weeks here and there, but you will be on chemotherapy for the rest of your life”.
I can’t tell you what this did to me. All my life, I had been terrified of contracting cancer, not because I might die, but because i might have to have chemotherapy. I have a borderline phobia of vomiting, and I imagined a life lived over the toilet bowl, and not much else….and hey, doesn’t everyone lose their hair, their eyebrows, and all their dignity? What sort of a “life” is that, really? My friend Kerry took me to chemo for the first time and sat at my side for more than 8 hours, while I had my chemo “education”, and my infusion. It was not an auspicious start. I had a panic attack walking through the door that boldly said “chemotherapy”, and cried so much that in the end they had to sedate me so that we could get the day underway. All this came to some good, when I realised that everyone else seemed to be basically ok, they weren’t sitting in their chairs crying, in fact, most were quite upbeat. Maybe it couldn’t be as bad as I had built up, and it was the only defence I had.
This was the first day. No one would have dared taken a photo of my shattered face and tear stained eyes, so I marked it like this:
A lot has happened since this photo. And because you know a lot of the bad stuff from other posts, I am going to list the huge events that led me to yesterday.
Considered for liver surgery on the grounds that chemotherapy controlled the cancer.
Chemo shrunk tumours 50% in first three cycles – a huge response
Accepted for liver surgery (which had to be postponed due to bowel obstruction)
Had bowel surgery which cleared all the cancer from my bowel, and lymph nodes were clear
Accepted for liver surgery for a second time.
Had procedure in hospital within a week of being accepted to prepare my liver for surgery, which will be in the second week of December, it’s HAPPENING.
My last conversation with my oncologist went like this:
“So, this is the last dose of chemo you will be having”. Me: speechless. I knew that chemo wasn’t going to be for life anymore, but I expected at least 6 “mop up” cycles after surgery, where the aim is to clean up any cancer cells that might be lingering around. But my onc says that there is no proof that this works, and that chemo is becoming somewhat less effective for me now, so we are best saving it’s usefulness for another time where it might be needed down the track (of course, I have no intentions of THAT). And like he said, I need a break. The last nearly 11 months have been seriously intense, heartbreaking, draining…there are just not the words for it to be honest. So, the plan now is to operate the rest of the cancer out of me, and……wait. Watch and wait. Hear the word remission, and watch and wait for fucking EVER if you don’t mind.
So, this was me, yesterday:
That is my happy face. That is my they just hung the LAST BAG of this shit, and this part of the journey is over, face.
Let me tell you a little bit about what I am fighting for here. I am fighting for this:
This. These are my people – mine. I nurtured a love with a beautiful man, and we made a life together, and we made this family. And to say that they are everything I ever dreamed of would be an understatement. I will fight to the ends of the earth for this. They can stick every needle they’ve got into me, cut me with their scalpals, slay me with their words, pour their poison into my veins. I will do anything I need to do, I won’t complain (often). I’ll fight forever for this.
This. I fight for every day that I can see this man be a father. He is a magnificent one, and the way he looks over his girls with so much love and pride, as he does in this photo, and many others, well, it’s something special to see. I made him a father at 49, but there was never any reason to wonder if he would be a good one, coming to fatherhood so late. He threw himself into it right from the start and he never looked back. We often say to each other “you made me a father” and “you made me a mother”. And we say it with great affection, because we know of all the gifts that we have given each other, this is the biggest.
This. I’ll fight to grow into a too much wine drinking geriatric with this lady, this soul friend at my side. She was there the day I first met cancer, and witnessed the rocking and screaming and horror and somehow got my whole family through this wretched night, while in the midst of her own grief for her friend. We’ve been together through the best of times, and the worst of times, and there is so much more fun to be had.
This. I’ll fight for many more than the 14 (nearly 15 – you get less for murder babe) that this man has stood, unshakingly, by my side. Through 2 hip replacements, months in rehab due to medical error, one gall bladder, 4 babies, and cancer, fucking cancer. He always jokes that he has never been in hospital as much in his whole life as since he met me. Hard to argue. We’re not perfect. Two clashes with cancer in three years (Gaz survived prostate cancer in 2011, but it took a year from our lives) has taken it’s toll. We need to get to know each other again, and we need some peace to do it. We don’t have that yet, but it’s coming. If anyone tells you that that they can sail through two cancer battles, where there are four small children involved, and not argue about the housework and the cooking, and argue the point relentlessly about who is more fucking tired, the person on chemo, or the person that hardly slept last night because they were too worried about their wife dying, and then had to go and work a 12 hour day, they’re a liar. It’s fucking TERRIBLE. Diabolical. Some would say that no relationship could survive it. But ours will. We’ve already done the hard yards, but we love each other too much to give up. We fight for US.
This crazy lady – ME. I fight for her. As I have discovered that there are a lot of things I like about her lately. And I’d like to get to know her a lot better
And lastly, but not leastly (lol), I fight for all of you. All of my friends who carry me through every day, and have brought me untold joy over the years. I was a very lonely child and teenager, and I didn’t have many friends. All of you have shown me how richly you can be rewarded if you open your heart and let people close. I have so much faith in human nature now, I know there is so much good in the world. And I’ll fight to see it.
Keep fighting with me, won’t you? I know you’ve all got my back, and that’s a very good feeling.