The impossible choice

I am the same person as I was this morning, but somehow, I’m different.

I have terminal cancer.

Since being introduced to the possibility of hope of  a curative liver resection nearly 12 months ago, I’ve been able to live in the hope that my always terminal cancer will not terminate me.  I’ve gone through 3 major surgeries, 8 chemotherapies, 25 radiotherapies, 7 blood clots, 3 bowel obstructions, a nasogastric tube (oh my fucking god, that tube), several hospital admissions, and an admission to the palliative care team, that I coped with while hanging onto the chance that one day I would be one of the lucky ones to be discharged alive.  I really, really believed that it would happen.

It was never going to be easy to get me to this liver resection.  The surgeon, a brilliant and compassionate man, he fought to give me every chance, even though he was clear from the start that an actual cure was very unlikely.  He performed two procedures on my liver to try and get the healthy remnant to grow and regenerate before operating, to try and make it safer for him to try.  When the first procedure did not work, he tried another, much more untested procedure, and this morning the results were in.

My liver has not grown, at all.

However dreadful that was, he didn’t take away the chance of the liver resection.  He offered us the chance to make the choice over the next week whether we wanted to give it a go (and there is no time to dilly dally, my cancer is no longer stable and my liver mets are growing again), but as it looks likely that my liver will never regenerate, the chances of me dying, (he pulled no punches, if this happens I would never leave hospital, and I would die slowly and agonising, and worse still KNOWINGLY, over a five to six week period of multi-organ failure, including a stint with dementia) will be 50%.  The chances of him, his words “being of any benefit to me” around 1 – 2%.  He is clear that he thinks the risk is too big to take, the odds swing too wildly against me.  I trust this man, he has tried everything to give me a chance, and his face showed his great sadness at having to give me this news.

He asked us not to make  this choice, this impossible choice, today.  Next week we have to see my oncologist, and find out how long he thinks chemo can give me.  I was still responding to chemo when I last had it, and no one knows how long it can keep things at bay.  He said that perhaps we can live in the hope that in 1 – 2 years, if I can survive that long, something else will come along that can help, a trial, or new drug, one that is “not there yet”, and “obviously we would need a lot of luck for this to happen”.  But the poor man, his eyes bored into me, and he said “If you want me to do this, I will do it, but I don’t want to be the person who kills you.  Because then that chance is gone forever”.  It must be awfully hard to be a cancer surgeon and give people news like this, every day.

The chemo that I had before, it was always to get me to resection.  To get me a cure.  Now, the sights, sounds and smells of the chemo ward are all coming back to me.  Another picc line, 3 weekly hook ups, 2 weeks of half life, one week of good life, and all this to give me only time.  If I go back, chemo will render my liver so fucked that resection will be off the table altogether, and a line will be drawn in the sand.  There is a tiny chance that my liver will grow if the resection is done, he has seen it before, when other regenerating procedures have failed, sometimes the liver still regenerates after resection, but his eyes told me that he didn’t think that would happen with me.  And even if it did, it was almost certain “that if the liver grows, cancer will grow back with it”.

I didn’t want to cry in front of my children.  And I didn’t cry until I saw them, but then, the floodgates opened.   I know so much now about what it means to be human, to not be able to keep on being strong, to not be able to hide the pain and fear from them was my worst nightmare, and this afternoon, it came true.  So, we had to tell them…as gently, and as hopefully as we could, what today brought.  They were pretty clear in their choice – no operation.  It seems obvious, but it doesn’t.

I want to believe I can live, and still live well, for however long that might be, in the absence of any real hope.  To believe that I can lose the feeling in my toes and fingertips from the platinum based chemo that took more from me each time I had it than it felt like it was giving back, and still live well.  To believe that I can lie in bed each night propped up on pillows, as the chemo has stripped my digestive system of any of it’s good bacteria, and vomit and bile rises in my throat each night…and still live well.  That I can go from scan, to scan in the hope that things can stay stable for a little while, that I can have what the surgeon calls “good time with your family”, that I can walk into the appointments to get these scan results and somehow not die from the sheer terror of it, the waiting for the number, for the months, for the slow decline, for the knowing….oh god, the KNOWING…and still live well.  I wish someone could tell me how I can do that.

I had an offer accepted on my dream house.  I planned to finish my studies.  I was going to write a book.  I planned a life, and somehow I have to believe I still have one.  Do I move to the house?  Do I go back to TAFE?  Do I start a book I might never finish?  Anything else is tantamount to giving up.  And I just don’t know how to do that.

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This was me, this morning.  When the world looked a little shinier, and my babies hadn’t started to look translucent, faded, once again less mine.  I don’t look like I’m dying, but for the first time, I feel like.  A little bit at a time, but almost inevitably.

I only hope I can rally.

30 Comments on “The impossible choice

  1. I don’t know you, I don’t know your four beautiful girls but sitting here reading this with tears streaming down my face….I so hope you live! I will try to live life that little more fuller for reading this. Thank you Julia. X

    • I do know you Julia and also have tears streaming down my face. I can’t believe this news. I have always thought you would beat this monster. Please, whomever or whatever is out there, make it true. You deserve it. xx

  2. You look and sound and are so alive. I don’t know you, but your posts always shine with hope. And care for others. I wish I could help in the making of choices, or in a bigger miracle. I’m touched by your words, and I’m keeping you in mind.

  3. I hope you choose to write, you are really, really good at it. And if you can write that much, that well today, I would think you can definitely finish.

    • 100% agree. Your writing is fantastic. Write that book. I too believe you will finish.

      Best wishes, best of luck…..I know words are simply not enough but know you are in the thoughts of strangers who are all cheering you on through this. You can be that small % that make it back from the worst of it. So write that book so you can read it to your kids one day in years to come.

  4. Hi Julia I have just read your blog from today. I am so sorry to hear you are going through this. Tomorrow we farewell my best friends Mum. She had liver cancer. She was given three weeks to live 8 years ago. Please do not give up hope. My thoughts and prayers are with you ☺ x

  5. I don’t mean to be blunt, but have you tried medical cannabis?
    Research it. It’s not like having a dirty bong… You can cook and eat it. It’ll at least help with pain.

    Sending you love, hope and strength xxx

  6. Very sad to read Julia. Hard questions to ask. The house is a huge question. A move is huge for you and Gary and the girls. What will best serve you in this next 6 months? Tafe course – stuff that. See where you are 2016. Writing sounds good. One day at a time sounds great. Thinking of you and Gary and the girls.

  7. I don’t know you or where you live, my friend posted your blog, but who I do know is Jesus. I can hear the scoffers already, but it sounds like you’ve given everything else a shot, why not Him? Maybe you’ve even tried “religion” before, but I’m not talking about religion, I’m talking about an amazing relationship with Jesus who cares so deeply for you, and who even went to the cross so you can be healed. I absolutely believe in the healing power of God, I’ve seen people healed, I’ve heard amazing stories and I know He wants to heal you too. I go to C3 Church at Oxford Falls in Sydney, no idea where you’re based but happy to recommend great churches that will pray with you and stand with you in this season if you’re interested. No pressure. I will remember to pray for you. Stay strong and thankful and positive for what you do have, it’s amazing how even that can help so much.
    Hopefully I haven’t overstepped the line with this comment, my heart broke for you & how can I not share with you about the One I know so well and His desire to save & to heal. God bless. X

    • Dear Julia all I have is what comforted me my whole life without my Dad was prayer. Your beautiful daughters will connect with you in prayer and through your writing.
      X

  8. Julia thank you for sharing your private life with us, you didnt have to but you were brave enough to alongside the strength you have already shown to date. Tears ran down my face when I read your article. I wish you and your beautiful family all the best. Sending love to you all x

  9. Julia, what an amazing mother your children have. I hope you get to have some more happy times with all the girls. With tears running down my face I say stay strong and send you love and courage. Kym x

  10. Can’t even imagine what you are going through.. I don’t know you, but from the tiny bit I’ve just read your are an amazing courageous lady. I say buy your dream home. If it gives you happiness it’s worth it. All I have for you Julia is hope, be strong x

  11. Sorry for the news, the choices you are making and that it all sux. Write your book. Skip the TAFE.

    You have made me appreciate what I have and I thank you for that.

    Gorgeous photo.

  12. Hello Julia

    I saw your post linked on a friend’s Facebook page. I am so so very sorry that you received this news, that you had to tell your children this news, that you are reassessing the amazing things you saw in your near future and for your prognosis. I can’t even imagine how your life has been turned upside down. You’ve been through such a lot already, you didn’t deserve this. No one does.

    I saw you in that beautiful dress, not knowing how your life has changed before I read this post. I do hope your quality of life is good enough to continue living life to the full. I say, as long as it makes you happy and well enough to keep on, write that book, take that house (if it’s financially affordable now and in the future), start that TAFE course, continue to wear beautiful dresses, tick off your bucket list with time treasured with your family. Leave them happy memories.

    Much love,
    Carly

  13. I’m usually not speechless, but your blog has left me lost for words. I was sincerely moved by this part in your life’s journey. Life is so precious and none of us will be left alone by the transition that is death, isn’t that the ugly truth. btw you may not have put out a book, but you are a writer with a readership and with your words, your sentences and story so many people are being challenged and inspired to live more fully for ourselves and for you. I wish you all very best in your health outcomes and focussing your energy to love those who love you. xxx

  14. Write, please do write. Whatever happens your writing will be your legacy. For your fairies & fella, and for us, and I pray too that you will read through it all one day & be amazed. It is so straight, so moving, so compelling, so lucid. Another comment has suggested someone in Sydney. There is also someone in New Zealand who helped the sister of someone I know. If some form of faith based healing is something you’d like to try, I can get details for you..
    xF

  15. “Do not go gentle into that good night,
    Old age should burn and rage at close of day;
    Rage, rage against the dying of the light.”
    Dylan Thomas.

    Keep fighting – and writing about – this cursed thing. You, your loved ones, even the rest of us, are the better for it.

  16. Hi Julia,

    It’s been quite some time since I’ve seen you but I remember meeting you and your beautiful family years ago. John & Kay are my uncle & auntie.
    …I’m so sorry to hear of the hardships you’ve been facing. It’s truly horrible knowing you’ve been facing all that you have. Yet..I sense some hope still flickering in the darkest of nights.
    Julia, I KNOW Jesus Christ personally. I met him not long after Dad died and all it took was to accept his invitation he offers for all people – To be reconciled to God our Heavenly Father through faith in Jesus Christ.
    He has been and continues to be my strength, help, reason, hope and greatest friend.
    I don’t know what you believe or who you might believe in, but I want to let you know that giving Jesus a chance to be in my life has been the greatest choice I’ve ever made. I’ve been able to stop fighting against dark depression on my own and lean into Him for strength and an unfailing love, that honestly I’ve felt very tangibly at times, whilst others times even God has felt far away…Yet HOPE has ALWAYS remained to hang onto and Jesus has brought me through the darkest of days. I believe one day I will be COMPLETELY healed of depression and back problems. I hope and believe for this in this lifetime, regardless, the Bible promises an eternity in Heaven with God and every tear will be wiped away in an incredible eternity free from the troubles of this broken world.
    I understand this is a lot to consider at such a difficult time…But please, please, consider it because the peace and strength and hope Jesus Christ can bring to your life is beyond anything anyone could dream of. I’ve witnessed for myself the change a relationship with Jesus can make in my life, as well as many others I’ve met on my journey. I’ve also witnessed real miraculous healing. Sometimes instantly, other times over time. I will stand and believe that a miracle could happen in your life.
    God is a LOVING God who cares so DEEPLY about your pain and loves you with an unconditional love like a parent loves their child. He longs to be in the most incredible relationship with you and Gary and your family. All it takes is accepting his invitation, believing he died for our sins and rose again to reunite us with our Heavenly Father. Accepting him into your heart – then you are reborn into the Kingdom of God.
    Please forgive me if this letter seems at all insensitive…My heart aches reading of your difficult journey and all I hope for you is peace to be found in your heart. Please know that Jesus is a very real option to save your life. He saved my life, yet in other ways, in a different journey and first by rescuing my broken heart.
    Julia, I’ll be praying for you and your family. If Jesus is someone you’d like to meet please take every opportunity to meet him and really KNOW him for yourself. I am more than willing to chat about him and also have many contacts all over the place who would be happy to meet with you, talk with you and pray for you if you wish.
    Well done Julia for the amazing courage and perseverance you have shown.
    Sending much love,
    Mel XO

  17. Julia, I have just become aware of your situation via a post on a facebook page and my thoughts go out to you. I truly wish you all the best of luck/miracles for a prolonged life. I have experienced the pain of not knowing if i was going to see my 2 girls (who were aged under 20 months) grow up, thanks to the evil disease that cancer is. I truly feel for you. It seems you have many people who don’t know you sending you their love and prayers/positive vibes and i hope you don’t mind me following your journey.

  18. What a courageous warrior lioness you are !!! Thank you for sharing and being real – and inspiring us to think beyond our superficial bubbles :) Life is so Flippen precious and easy to take for granted.
    May you find peace amidst the chaos of emotion – #impactingstrangers #teamjulia! ♡

  19. God Bless You Julia.You are a beautiful & wonderful person. My prayers are for you to live a long, long life. Beat the odds my dear one xx

  20. Hi Julia,
    I felt instantly connected to you because of the similarities of our circumstances. I first suffered the rigours of cancer between 1997- 1998 when I was diagnosed with testicular cancer. A completely curable form of the disease, but the treatment and side effects made me wonder whether or not I may be happier off in the cosmos.

    The end result: Cure

    Ten years later, diagnosed with Colo-Rectal cancer. Scans reveal legions on my liver. Bowel surgeon says that my chances of survival post surgery are not good, but because I’m younger than 60 he will proceed with the surgery. Chemotherapy coupled with Radiotherapy ensued, leading up to surgery. Side-effects included temporary changes in taste, but more permanent is the numbness in my feet.

    Colo-Rectal surgery performed early 2007, stoma installed simultaneously.

    Due to location of liver legions ie: opposite lobes, it is determined that two resections will be required. First resection performed late 2007, removing approximately two thirds of the liver. Surgery and recovery follow as textbook, out of hospital in seven days ( I think, very nice drugs distorting my sense of time! ) Second resection takes place early 2008. Surgery successful, but recovery more difficult this time. My struggling liver is taking it’s time to get with the programme. I’m confined to hospital for three agonising weeks.

    Don’t ever take for granted the angels who look after you while you are there, but it it’s so liberating when you can walk out the front doors!

    According to the people who make the decisions, I’m now “cured”.

    My incredible surgeons were Mr. Frank Chen, who oversaw and conducted the surgery to remove the tumour from my colon, and Mr. Sean Mackie, who performed the dual liver resections. Sean told me that only two years prior to my surgery, that type of liver surgery was never tried, principally due to the large volume of blood loss incurred during that type of operation. He had learned this skill overseas I believe,and I’m forever grateful to him for importing this skill to this country.

    Advice to anyone who has removable stoma: do not eat anything for at least a week! And when you do, be sure you’re near a toilet lol!

  21. Of course I should not and cannot forget my oncologist Associate Professor Joseph McKendrick. An extremely compassionate, yet calm and re-assuring man, and I will miss visiting both him and Sean Mackie if not only for the good news they always gave me as a result of their great work.

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