The Hairy End: or, the bad shit.

i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.

but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline.  i am now, without question, terminally ill – which means, my  life expectancy is under 12 months.  for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now.  his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures.
it’s my birthday soon. i’ll be 32.

autumn is my favourite season.

i have hundreds of books i haven’t read, fleeces i haven’t spun, wool i haven’t knitted.

there are people in my life who i wanted to spend years with, to grow old with, to just be with.

there are all those endless things we leave unsaid, and there is so little time to say it.

i really, really loved my job, and my career, and the path my career was going on.

one day, i wanted to go to japan to go to all the places famous because Kawabata went there.

gerald murnane has an amazing archive, and i will never get to work with it or see it, or meet him.

i wanted to grow tomatoes, have pet sheep and goats.

i wanted a rescue greyhound.

maybe i could have hiked on a glacier in Iceland.

i wanted to go to all ten top restaurants in the world. i still want to do the top ten in australia. maybe i can.

how do i divide this into a bucket list or some inspirational thing about my will to live?  how do i factor this in with the fight narrative.

FIGHT. fight. fight the cancer. Fight the Battle.  Stand Up against the BATTLE.

what am i fighting for, guys? what am i actually fighting? ‘fighting’ cancer doesn’t mean i’m going to stay alive – calling what i do a fight upsets me. i can fight against the reality. i can fight against the simple knowledge of what is happening in my body, and that we only have a few limited options left as to how to stop it. i can fight and grapple and struggle and argue and say i have longer, say i will BEAT the odds.

i lose nothing, i beat nothing, i fight nothing. i have incurable terminal stage IV colorectal cancer with secondary tumours in my liver and my lungs, and other than taking the chemo i have, and doing what my doctors say, there is nothing i can do to stop this or slow this down. it is a simple and harsh and sharp and ugly fact.

one of my worries is that i will get brain secondaries, and i will lose the capacity to communicate.  bone secondaries are very, very painful, but are also unlikely to take over before the liver gives out.  same with the brain secondaries.   i am still afraid.

i am still afraid.

it’s another one of those times where i feel like i should be standing on some sort of podium listing off the inspirational things i will do, the places i will go, the achievements and the sacred moments i shall experience in my final 3-12 months. but i feel fine. how can i place the feeling of ‘i’m just a bit tired’ with ‘you have under a year to live?’

i’ll let you in on a secret. sometimes? after i’ve wiped the skin around my stoma clean, and injected myself with blood thinners, and taken my ten before bed tablets – or when i end up at the ER, yet again, because something broke in my unstable body – or when i just stare at my staircase in horror and exhaustion? there are times where i now see that there will be a point where i choose to stop treatment.  because this still only ends one day. no amount of pushing chemotherapy until the end is going to cure me.  and the whole idea that it is not fighting, or it is surrendering, or that i am on the verge of losing my battle makes me feel sick to the stomach.

this is a very different set of feelings from the initial horror and grief. it is a slower grief, a more tired grief, a grief that’s been closer to death now, and knows that i am too.

i’ve never been one to hope for that miracle. i know that it is almost definitely not coming, that the freedom from this disease isn’t going to just happen out of nowhere, out of some new drug or some new treatment.  i’ll see. i’ll see how hard it is to deal with side effects on any relevant trials, and i’ll see how much i want to take, and i’ll see what matters most to me.

there are a few things i need to write. i have three commitments i am eager to make, and open to being offered more, but i’m not sure the stress of actively pitching is going to add to my quality of life, when i can post here.  but if people reading this want me to write for them, as i would be here, i’m all there for that.

i’m flying to melbourne on thursday to look at a place. i don’t want to look at the ad too much, because i want it so desperately and the fact we might not get it is extremely painful to think about. i have to pack up my house, my objects that my hoarder brain clings to, and i need to work at shedding as many of them as possible. i need to cull things i love that i just won’t have time to use.

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About elizabeth

various things.
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44 Responses to The Hairy End: or, the bad shit.

  1. greenspace01 says:

    You write so beautifully

  2. Michael says:

    Elizabeth. Words fail me. I am completely undone by this post. Thank you for your insight, your honesty and openness. Just thank you.
    At whatever point you wish I would like to talk to you about using some of your writing in the teaching that I do for health professionals. I would also love you to consider writing some more for Palliverse if you wish to.
    Kind regards
    Michael

    • elizabeth says:

      i would love you to use my writing in you teachings. i can’t say how much happiness that would bring me – knowing that i can help people, and that this blog has helped people.

      i think i have a few palliverse articles with one of the team at the moment? one on my diagnostic process? i can re-write. also, i am always happy for you to cross-post anything i write in here on there.

  3. katiedavis says:

    Elizabeth, I don’t have the words to say what I want to say. Nothing I write cuts it.

    Sending you love xx

  4. Joanne says:

    Elizabeth, I am so outraged that this is happening to you, I too can’t find the words. Your generosity and eloquence in sharing your thoughts and feelings through this is a gift that will persist and continue to touch the lives of many – teachers, ‘patients’, poets, friends and lovers. I treasure your writing and the way you express so much complexity so elegantly in a way that helps others to feel your fears, your pain and your beauty. And the bloody unfairness of it all.

  5. Oh Elizabeth. I’m reading your death sentence but admiring the beautiful, stark, poetic clarity of your writing at the same time my dear. I agree with Kate, there really are no words xxx

  6. suracim says:

    All my favourite people have gravitated to Melbourne for various reasons – study, work… I loved it and lived there a decade before making the move north to the capital. It’s unique among Australian cities. Everytime I visit, I fantasise about staying…mainly for the art, the food and my lucky place (a secret sandy spot near the sea where I went each time I had to make a major decision about anything). I hope you find such a place when you are there. X

  7. msflk says:

    Autumn in Melbourne is stunning, so wherever you land, I hope it’s a place of some solace and peace, with trees and branches. I do wish things weren’t so fucked. Words are so inadequate in the face of all this.

  8. suracim says:

    I love your writing and return to it often. In the past 10 years, I’ve been trying unsuccessfully to hold down a fulltime job and manage several chronic health issues – bipolar, PTSD, bronchiectasis (degenerative lung crap) and boring old asthma. None of this comes anywhere close to what’s happening in your world I know, but I understand when you say there comes a time. It’s now day 152 of being pretty sick, 3 hospital admissions and lots of drugs that used to but no longer work. I’m ‘treatment resistant’? I don’t know what that means because I have this irrational belief (as a science communicator) that there is some new drug just around the corner that will help me breath so I can walk more than 80 steps a day. So I’m sending you all of my hopeful vibes. And I hope you found what you needed in Melbourne. A place I love to visit. X

    • elizabeth says:

      ((hugs)) god, that all sounds rotten. and you know, as shit as cancer is, i know a lot of people with chronic illness who go through far more discomfort than i do. in most ways, i pass as healthy. it’s all terrible, and we’re all in this together. and i so know that hope. i hope that drug happens. x

      • suracim says:

        You’re much more resilient than me. The chronicity is just tiring. Some days I forget all about it. What shits me is that people can’t see how you feel, and make assumptions, say things intended to be kind but it all comes out the wrong way! But you know how that is. Yes we’re all in this together. Hope beats fear. If I can’t get the magic drug, there’s music and writing. And people. And animals. I had a pet rabbit once, a rescue rabbit from the streets of Brunswick in Melbourne. No sooner had we brought her home than she had a litter of kittens. That was a surprise. A terrace house full of rabbits. X

  9. soniafullerton says:

    Elizabeth, my very best wishes, your writing is amazingly powerful and helps us so much in understanding (at least a bit) what you are going through….
    sonia xx

  10. Elissa says:

    Thank you so much for your candour and for your perspective. It is so very important. You teach me so much. I am thinking of you.

  11. Stephanie says:

    Thank you dear Elizabeth.

    Your writing is true and profound and beautiful, even as your reality is heartbreaking and full of life.

    Elizabeth, I too live with advanced cancer and while I’m further along the path, I’ve spent my 50s, 40s and most of my 30s living in this very altered state of being.

    I shared a portion of your blog post today at my personal blog:
    https://www.mylifeline.org/StephanieSugars/updates/update/1508417

    I write about living with serious illness, conscious dying and whatever else interests me.

    warmest regards,
    Stephanie Sugars
    https://www.mylifeline.org/StephanieSugars/updates

  12. Elissa says:

    Reblogged this on and commented:
    Palliverse contributor Elizabeth Caplice shares this candid post with her readers. Thank you, Elizabeth.

  13. Sophie says:

    Hi Elizabeth,
    So many people will benefit from the honesty and beauty in your writing. I really appreciate you sharing your honest journey with us. Sophie

  14. Dear Elizabeth,
    To never have met you in person, and yet share your experience and witness your courage through your beautiful writing is an honour. I respect you so much. If it ever strikes you to write further about ‘the battle’ I would be most grateful. I feel that I, and I think others, well we feel our way ahead a bit blindfolded, trying to help and to understand HOPE and what it means for others whose stories are unfolding in ways we have never experienced.
    All my wishes with you for those restaurants, that place in Melbourne, that courtyard.
    Thankyou, Craig

  15. Bobbie Parker says:

    Hi Elizabeth
    thank you for taking the time to write these things. you do write so beautifully and you are already wise beyond your years. i have been a palliative care nurse for a long time and i have come to despise the “fight the battle” language that is used in our society in regards to people with a life limiting illness. to me this insinuates that for those people braver than their oncologist, who decide themselves when enough is enough, there is a horrible insinuation of “giving up” . I have seen people die, many times, who didn’t even know that death was near and never got a chance to say goodbyes, or read that book they always wanted to read, or cash in their super so they could go to Australia’s best restaurant. They only got to go to another specialist appointment where the medical team (and often the family) just kept saying “don’t give up the fight”. “we’ll never give up on you” They don’t realise that they are depriving that person from choosing how to spend their last days, weeks, months on this planet. They don’t realise that they are disallowing that person to readjust their goals and live their life to the very fullest.
    Good on you Elizabeth for getting the very best out of your life. Letting people know what matters to YOU ….this is being BRAVE. Thank you so much for sharing your journey with others and I hope you find moments of pure joy and peace over the coming months.

    • elizabeth says:

      my oncologist is amazing – he helps me see and reminds me of his own desire to ‘fight’ while keeping my clinical nurse there to remind me that the fight is not as important as living, that there is no ‘fight’ and that what i want is life – quality, good, honest life – and not to push the treatment until the end.

      i’ve had friends die not knowing, and for me, i feel so empowered stepping forth into this knowing my own passing is near, that i am getting ready to die, and that this is ok. the cats sleep on my feet and i read stupid stuff on the internet and i eat good meals. i still have low dose chemo, but i’ll stop it when i want to. i don’t get scans now, because they won’t stop the cancer, or tell us much. my palliative care team are starting to come forward, and i know soon, i will see them more than my oncology team, and i am getting ready for that, because you guys – for you, you ‘win’ with a death that is good. and i want to work with my pall care folk for us all to ‘win’ that final part of cancer, where i die with love and comfort and a lightness in my heart, knowing that we all die with things unfinished, and that my life was full.

      thank you so much for reading. and thank you so much for the work that you do.

  16. Kate Mulvany says:

    Elizabeth, your words constantly astound me with their insight, grace and honesty. As ever, I send you so much love. And infinite thanks. Have a beautiful Autumn, and good luck with finding your special place in Melbourne.

  17. melchivers says:

    Thank you for your openness and honesty through this whole terrible process.
    I wish you a beautiful autumn and that you spend the time you have doing what matters most to you and makes you happy.

  18. Hi Elizabeth, just found your blog via twitter as I’m preparing for a session on Death and Dying this Friday. This post alone makes me want to stop preparing and just sit devour your blog, but I’ll save that for the weekend. I’ll quote from this post if that’s ok though?

    I hate the metaphors of war when it comes to wellness and illness, I’m not sure they help anyone. I wrote this in my Dad’s eulogy ‘Dad didn’t lose his battle, or succumb to cancer; he stoically, bravely and steadfastly lived his death as he lived his life, with courage, dignity and a concern for others’ sounds like you’ll do likewise.

    I wish you love and luck for what lies ahead. I hope you enjoy a beautiful autumn, visit as many of those Australian restaurants as you want and sleep every night with your cats close by. All the fighting, battling and inspirational warrior’ness (is that a word) in the world never made anyone immortal. There is no shame in feeling afraid, or in turning your focus on accepting not fighting and fully embracing the best days possible, for you.

    Much love, George x

    ps I’ve never understood what the people in sanitary wear ads have to be so happy about and why are they always jumping or skipping?

    • elizabeth says:

      WHY is there singing? and skipping? the holding hands in stoma things are the ones that confuse me the most. i don’t want to hold hands with strangers. it’s weird. thank you so much for your comment. i walked through the leaves today, and it was crisp and not too cold and i got to see another autumn’s day and that was really good.

      and yes. your Dad lost nothing. he lived. his life was not a ‘loss’ in some imagined fight. i think the idea of ‘living death’ which is the reality — death is something that is active, not passive – we go through a process, and it is not about losing. when a dear friend of mine died, all i could feel was that i was the one who was lost, and who had lost, not her. she was vital and strong and lived her life, and died her death that way. x

  19. fujirox says:

    heard you on DEATH SEX + MONEY. i am happy to find your blog and read + feel your heart, elizabeth. peace, love, laughter, beauty, and clarity to you, dear angel.
    p.s. have you read DYING TO BE ME — anita moorjani. she reMINDed us that ANYTHING is possible and that miracles are EVERYWHERE.

  20. Patty Miller says:

    Elizabeth,
    I just heard your interview from California on Death/Sex/Money and raced home to read your blog.
    I don’t know what to say to you other than- I hear you. And your journey’s story will stay in my mind and heart for many many years to come.
    I hope you are finding every ounce of happiness in every day. And if that means laying in bed on FB- then I forbid you to feel guilty! Your happiness is your own, and however lazy your happiness may seem to you, it is just right if it makes you smile 🙂
    Thank you deeply for sharing your story.
    All my love,
    Patty

  21. I came hear after hearing you on DSM. I love your writing, your insight, your quirkiness and I’m just so sorry you won’t hike a glacier in Ireland. But hanging out and reading Facebook is noble in its own way. You know what I mean. Thank you for sharing all of this. I feel different after hearing you.

    • elizabeth says:

      i did get to see one, though. and that was pretty amazing. i stood on a black sand beach and i saw a glacier. thank you for coming and reading my blog. x

  22. Heather says:

    I heard you today on the Death, Sex and Money podcast. I loved your voice and you seem like such a cool person, I remembered the name of your blog after this long day and looked you up! I’m a Californian but have a brother in Melbourne. I just really appreciated your perspective, your thoughtfulness, wit and willingness to talk with candor about facing the end of life. Thank you for contributing that to the world. My best wishes to you.

  23. M. Malone says:

    “Life shrinks or expands according to one’s courage.”

    -Anais Nin

    I think you’ve expanded your own life immensely. I know that everyone around you sees that. Thank you for sharing your story.

  24. Xena says:

    Your story touched me to the core! You seem so intelligent and genuine and my first thought was how much pain I would feel missing your presence if I knew you as a friend or family member! You are obviously so much more enlightened than your years and isn’t that what we run after our whole lives? Your suffering will end but I wish your loved ones patience and healing! Do not be afraid as our souls live on! Love X

  25. Just today, I came across your blog. Your writing dances with life. Thank you for sharing your journey with all of us.

  26. Karen Li says:

    Hi Elizabeth, I heard you speak in Anna Sale’s “Death, Sex, and Money” podcast. My mother recently passed away from lung cancer. It was immensely comforting to hear you say that maybe she found some solace from knowing that her suffering would end after she passes– Thank you. I dream about my mother almost every night. I don’t know if you believe in the afterlife, but I would like to believe that she is still with me even if I only see her my dreams. Take care. –Karen

  27. Steven Poll says:

    I just heard about you tonight on the Death Sex Money podcast! You story pulled at me from somewhere deep inside. I literally bowed down before the almighty asking for compassion…and yes, tears running down my cheeks. Your spirit is strong even with the never ending barage of pain your physical body is enduring. I feel truly blessed to had heard about you…and found your blog. I will be here daily checking on your progress…and lending an ear to hear your thoughts, insights, and inner strength! You have inspired me…yet I’m not sure in what capacity yet. It’s a lot to take in only hours after hearing you on the podcast. Thank you for sharing! – Love and Prayers – Steven Poll

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