A week of lasts

A week.

Seven days.

I woke up this morning and I knew something had shifted.  This time NEXT WEEK, I will be on the operating table.  The surgeon will have already looked at my liver and decided whether he might be able to free me of the imminent threat of liver cancer, but if he can, the minute his scalpel starts to dissect liver away from veins, and cancerous segments away from non-cancerous segments, then fate already knows what the future holds for me in the following six weeks or so.  Fate will know, but we won’t.  In a week, the story of my life will take a massive and irrevocable turn for the good, the bad, or the very, very ugly.

When the clock strikes 12 tonight and turns Friday into Saturday, that might be the last Friday that I ever spend outside a hospital.  The last weekend, the last assembly, the last week of school runs.  When next Thursday night comes around, I will snuggle spoon style into the back of the man I have loved for 15 years and seen 4 children into the world with.   I  will think about how every time we have settled into that position, even if we have been mad at each other during the day about something, there has been an exhale, a feeling of great peace, a feeling of being home.  And the next day I will check into hospital, where I will have to lay alone, not knowing if I will ever know the warmth of that home, or this home, ever again.  Seven days.

Today I have had professional company all day in the lead up to next week, working out strategies on how to cope.  I’ve had visits from the welfare officer from Georgia’s school, who is also a lovely friend, and I have had the palliative care nurse who has been visiting me for the last few months, and the palliative care counsellor.  I have wanted it to be acknowledged, and it duly was that I am not being pessimistic when I think about the “lasts”, and indeed, they told me they would think I was in denial if I didn’t give due consideration and respect to the fact that this might not turn out the way that we all want.

Together we worked out that I have done pretty much all the “practical” preparation that I am going to do.  There have already been too many weeks of war between my heart, which thinks that I should “prepare” all things and people for the possibility that I may not return, and my head, which says that the minute I do that, mentally I will give up, and it will be all downhill from there.

Palliative care has always told me that I will know when the time is right to talk about my end of life care.  I have always been like, errr, no way, thanks all the same, I won’t be talking about THAT, though we have touched on it from time to time and talked “around” it…in times when things seemed a lot more hopeful than they do now.  But of course, they understand that all the people who face death will face it in a different way, but eventually pretty much all want to have “that talk”.  And today I found I did.  Suddenly I needed to know whether by the time we established that I was in the last weeks of my life, would I be lucid for a time, or basically kept unconcious by pain relief drugs?   Will the end be peaceful, or will I feel great pain?  I feel better for knowing the answers.

So many other things I want to know too, but was too scared to ask yet.  I want to know will I be able to be wheeled out to the park opposite the hospital to feel the sun on my face one more time?  Would there be time to tell my children how every minute they have been on this earth has been pure magic to me?  Time to reminicse with my great love about the bond that grew when we put four children on this earth together.  The bond between us, and the bond between them, something that can NEVER be broken.  I wonder if there will be any chance of one last night in my home, where we could gather together in the family bed.  Soon, I will have to ask these questions, as I need to know.  Soon, but not today.

For the next week, I will practice mindfulness.  The time has been and gone for me to keep asking myself questions that, unlike the ones above, actually have no answers.  I must cut these thoughts off at the pass, live in the moment, do the dishes, put the washing on, strap a kid into the car, anything to quieten my mind, the routine, the mundane, the things I have craved for 14 months.  And on the day of surgery there will be sedatives, strong ones, that will allow a level of function where I can put one foot in front of the other, but will render me too numb to ponder the darkness and feel it’s descent.

I don’t see beyond next Friday,  I anticipate a beautiful future, where I leave hospital with the promise of many nights of spooning, and family bed laying, and movie nights, and dinners cooked lovingly by my hand.  I imagine assignments, presentations, and words on a page that will one day become a book which bears my name on the front.

Yes, I can imagine it, and anticipate it, but I can’t SEE it.  That doesn’t mean I don’t think it’s there, or I don’t believe it, but just that the obstacle is big, and I can only hope that I have enough luck to find a way over it, or around it.  I know I have the strength, the heart, the desire and the motivation, and what’s on the other side is so bright and magical, and I want it so much.

It’s been a beautiful fight.  It still is.  It still IS.

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20 Comments on “A week of lasts

  1. I only found you and this blog a couple of weeks ago through the EB forums and I’ve been following ever since. I think if you often and I’ll be thinking of you and your family next Friday.
    I don’t have the right words – I don’t really know you – but I won’t stop hoping that “all on red” pays out big for you!
    I sit here breastfeeding my 9 week old son, tears – happy & sad – in my eyes … Admiring your strength and courage … And having faith that all will turn out fine.
    Lots of love and happiness xx

  2. If love can carry you across the line then you are already there, Julia. You and Gary and the girls are in my thoughts and heart. How much peace you have found in the moment. I have found inspiration in your journey towards next week. I have enjoyed your writing so much. What a brave woman you are. What crap that you have to be this brave. I’ll be part of that energetic field that goes with you next Friday. All things crossed for you to triumph xx

  3. That you can face this with such dignity and write so beautifully but so honestly and so poignantly, is humbling and inspiring to those of us fortunate not to have to face more than the day to day hassles of life. Wishing you and your beautiful family as much happiness and time as you can have.

  4. I also found your blog through EB. I remember when you had your beautiful baby, who just happened to have downs, and the love you felt for your darling girls.

    I was very sad to hear that your cancer journey was not over, and that you are left to fight this bitter foe again. Live this week of maybe lasts, hopefully not, with the grace and courage you have always shown. You can give more love to your girls in a week than some my kids that I teach get in a year. You are very special.

  5. What a brave, strong, beautiful, courageous, inspiring woman you are Julia! I have no words to describe how your post has touched my heart. I will keep you in my thoughts this week and I will hope & pray that your operation will have the best outcome and that all the things you do throughout the week won’t be your last. Wishing you & your family lots of love & strength xx

  6. Like many others I only “know” you through the wonderful world of social media. And like so many I have thought of you everyday since I “found” you. I admire every ounce of you. Your honesty, your bravery, your generosity ! To still find moments to share your thoughts with all of us at a time that I can only imagine every moment is so precious. You Amazing Beautiful Inspirational Woman xxxxx I hope with all of my heart and pray to the powers that be that the only thing you have to say goodbye to this week is cancer. Just keep swimming x

  7. Is the end type a book or the start of your future book?

    Thanks for barring your soul. It’s comforting to know you know what you were told you will know about timing. It tends to be timing that messes me up the most.

    To many more years of lasts. And firsts for us all.

  8. Gorgeous Julia, Like so many I have only come to know you recently through your amazingly honest & inspirational blog but you have touched my soul and made me stop and appreciate all the wonderful things that I have in my life and I thank you for that. You had faced each challenge with dignity, courage & grace and I wish you love, strength & this week and will be thinking of you & your darling family. With all my heart I wish everything is successful for you next Friday xx

  9. Julia, my hope for you is that you will have many more normal days in the future to live well, love your four beautiful fairies and fella and have time to write more about life.
    Go well this week, my thoughts will be with you.

  10. Hi Julia.

    I will be thinking of you on the 27th. 28th and onwards from there. As a fellow colon cancer sufferer I have followed your progress on the forum you have given me strength made me laugh out loud and reduced me to tears, usually within the same post. Stay strong special lady

    (((Hugs and prayers from the rainforest)))

  11. You’re such a warrior woman – I don’t know you but your story has moved me at my very core. I wish I could express just how much you are helping others – Julia you provide such insight & strength and help me immensely on my own journey xx

  12. Hi Jules, Dim here. I too have been quietly following your blogs and posts on Facebook and as with all others, I don’t have any magic words of inspiration. I guess time will tell what the outcome will be. I am hoping I wake up Saturday and find out all went well and you are given, a the least, a reprieve, if not an outright cure!
    Everyone has probably already posted anything I can say so I will say one more thing. Whenever during the day I think something is shitty, or I have been hard done by, or I am at odds with the world, I think of you and realize how fucking ungrateful I am to have my (relative) good health. OK I have my own medical considerations but they are not posing the threat of having to face a “week of l lasts”. I could not even begin to imagine what it must be like actually given a possible day or time-frame of my humanly demise.

    Apart from being an inspiration, you have taught me a valuable lesson about life that I already know but rarely put into practise. Live each day as though it were your last! Don’t let small and petty irrelevant things affect you unnecessarily. Don’t give a fuck about that “tapping noise” that is coming from the engine of my car (although it was fixed with an oil change!) but I let it consume me so much when I know you would give the earth to have that as your biggest worry!

    I am confident I will be reading the blog of how it is to “come back” from the doors of death and live the life you full well deserve. I am quietly confident.

    Dim

  13. Another stranger sending love and prayers. Praying for many more firsts, seconds, lasts for you. I am a mum of 8 and 10 year old girls and have partially lived your nightmare twice. As a person who tends to think too much, I sometimes think of how I will feel when my girls have their last day of primary school. I pray that this is a last you also get to experience, and many more lasts after that.

  14. I have been reading your blog for the past few months… My husband whisked me off to Melbourne for a weekend away and I saw you with your daughters I almost tripped into the traffic. You were coming out of the theatre. As if that wasn’t enough your surgery is on my birthday Feb 27th its been a kind day for me over the years and if I could get one thing this Friday it would be your good health and future to be bright and filled with love and joy with your family achieving the dream. I think of you and your family so often. I am having dinner near the casino I will go and put money on red for you for your family for your future.

    You have touched so many people. I hope above all you are feeling the love and spirit that is behind you.

    • OH goodness, you should have said hello :) My eldest daughter actually walked out of the theatre a couple of minutes before us, as she was annoyed about something..she said she told me that she was going outside, but if she did, I didn’t hear her, so I was quite mad and gave her a talking to when I finally found her…hope you didn’t have to witness that lol! Thanks for your good wishes on YOUR birthday….let’s hope for a good day for both of us xx

      • Julia I was so kicking myself I didn’t say Hi I have relived that moment a million times in my head but didn’t want to scream hey you I am a stalker on your blog and I live in Cairns and here we are on the same street in Melbourne on the same day – crazy coincidence….I didn’t witness anything other then you smiling walking with the girls. I really wish I had said hi and told you that you have a huge community behind you that we are all on your side and very much hoping praying and sending all the very best wishes we can. You truly are such a gorgeous personality it shined through. Friday is Julia’s day and I will be thinking of you with all the kind thoughts I can xxxx Kristy

  15. Hi Julie, I’ve been following along in silence for a wee while now and wanted to write and let you know that I am thinking of you and yours now, on Friday and in future.

    Enjoy your time with your family..hold onto those glimmers of hope and look after yourself.

    All will be well.

    S

    Xxx

  16. Jules, I read your last few posts before bed last night and I’m sure I dreamt about your family most of the night. I know nothing I say can change the situation or make you feel any better, but I just wanted you to know that I’m thinking of you so much (and dreaming about you, which is probably kinda creepy 😉 and you have so much love behind you. Team Jules is cheering for you from the sidelines xx

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