that next step

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there’s a point i want to make about this picture other than how beautiful the composition is: it is about a month old. and i don’t look a damn thing like it any more. the face, the posture – i’ve shifted. i look sicker. but the ones i had taken when my sister and mum visited this week? my face looks calmer. it looks softer. and it looks like i have finally started to let go.

i came to a really important decision this week.

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nb, could be projecting look of piece into presence of tiny food and excellence of BigSister

the night after my previous post – my day leave post, i had a stoma bleed at home, and i couldn’t manage it. it wasn’t a serious bleed, by any means. it wasn’t a huge amount of blood. they would have taken more blood from a blood test.  but i just can’t live like this. i can’t live with the uncertainty of a bleeding piece of bowel protruding from my stomach; a time bomb waiting to swell the bag against my thigh of warm, bright red blood. and there’s no set idea of time. no predictability.  no idea. at any moment, i could just have a bag full of blood, hanging off me. and then, what do i do? is it bad enough to go to hospital? do i just throw off the bag, stare around the edge, and try and clot it? do i just act like this is ok, like i am ok? i’m not ok. i’m not ok. i am not ok.

this is my body, and this is me, and this is my body in end stage cancer.  there is no shame in this, in these end stages, and there is no weakness in my death, no failure as the inverse of success.  as always, there is no battle i am losing.

but this time:

i was brave. this time, right now, i stand up and i say i am strong, and i am brave, and i am proud of myself, because i have chosen to stop chemotherapy at the time that is right for me, and i have chosen to go into hospice care at the time that is right for me.  my doctors all support and encourage these decisions as also being right for me – as a part of what has always been my longer term treatment goals and aims, and my own quality of life decisions i had set up. when it looks like we’re getting to the 3 months mark, we start palliative treatment only due to the limited benefits of chemotherapy according to a lot of clinical studies. thank you google you are not a doctor.but this time, the doctor backed me up. he looked at me with great kindness and compassion and told me that this decision would very likely offer me a quality of life and in fact, perhaps, a lessoning of symptoms for a bit.

it is not easy to say ‘i am not going home again.’
it is not easy to say ‘i am ceasing chemotherapy now, because the treatment is causing me more physical discomfort than i am willing to tolerate for the gains.’
it is not easy to disregard the notion that ceasing treatment, and choosing to go into care is not the strong, warrior option, but the giving in.

i am not giving in. i am working with my body. i am listening to my body. and i am listening to my needs. my doctors explained that the chemotherapy i was on would likely purchase me time.  not quality. my quality of life is not, and would never be, improving as a result of any current chemotherapy treatment they have available. and for me?  time is not my priority.  for some people, it is. for some people, time is what they would prioritising over any other needs. for me, it is quality of life, and comfort. i have no desire to drag myself through this. these endless bleeds, the slowly increasing pain, the exhaustion.

my anxiety, while waiting to find out where i am going, and when, has been completely unbearable. i spent two days feeling as though someone had a vice around my neck, and i was constantly choking when i breathed out, as though the pressure was compressing my ability to breathe.  it’s not cancer.  it is, entirely, my own intense anxiety at the waiting, the hospital room just hovering here and me in it, and no real idea of when or how i would ever leave it.  this ties back to my funding email.  gasping. gasping, and gasping, and my own anxiety around how few staff they have for me to ask for help. it’s not an anxiety i am used to, though, so i think i need to navigate its own strange language. i do this slowly, like i am right now, from bed.

next week, i will read stories to a tiny human being i love, and will never see grow up. but for the time i have left, i will have the memories of her tiny, serious face looking at me.  i will spend time with the people i love most in the world. i will live in the moment with my family, and come to a place where we end up communicating in a way that is loving, and that will leave us all with the memories of people who, no matter what, are family.

i have a lot to look forward to, and life to live, and that life may be very, very limited by the idea of ‘time’ in the long term, but i refuse to let it be limited by quality, or value, just because i’ve withdrawn treatment.

it is hard. i cannot be inundated with people right now, because i need the quiet. i am often confused by the people who i feel drawn to spending time to, that i need to spend time with.  it is an interesting thing.

hospice was the harder decision than stopping treatment. treatment was always a slight reluctance on my part, and it was sealed for me when my i realised how much one of the chemo drugs upset my stoma. i’ve had the stoma for some time, but not whilst i’ve been on this particular treatment, and it causes very, very unpleasant bowel symptoms.  you know what’s worse than gross bowel symptoms? seeing the direct result of what your actual bowel is doing because it sticks out of your body.  it’s confronting, and painful, and there’s nothing you can do about it.  i am in a lot of pain, a lot of the time.  i am unsure right now, after taking my breakthrough, if i should take some more.  i am trying to be better at that as well.

the question for me is too, what is the ‘time’ buying me? i have lived a life of beauty and richness. and i am sad, and i am a bit angry that it has to end now, at 32, thinking about the histories and stories i would have built around me were i not to be dying.  but i also know a month or two of this, or three, or five? or whatever?

these are all individual questions for each person to answer.  but for me, i am not giving in, or letting the cancer take me passively. i am actively taking control of my treatment goals, stating them with my doctors, and working forward to get where i need to be for this particular, final part of my life.

stoma wise, it’s the only part of my body i’m interested in trying to sort more aggressively, just from a palliative sense.  just for the fact that it causes me so much stress. if the ongoing therapy i’m having continues to fail, there’s an Option Two we are looking at.  it’s not about time; this one is entirely about comfort, and there’s no comfort in what that goddamn monster of a thing is doing. there are two more procedures, one moderately invasive and one quite invasive that can be done to my portal vein in an attempt to reduce/stop the bleeding.  i think there are some significant risks involved, but for me, those risks would by far outweigh the benefits. i am at the point, in all seriousness, where i would be willing to risk dying earlier if it meant i didn’t have to deal with this constant bleeding. i’m not exactly sure of the details, and it’s caught up slightly in the movement into the hospice, and will involve Balancing Things Conversation.  a week in hospital? for two weeks not bleeding?  can i come to deal with the bleeding better mentally?  what exactly, at the end of the day, will i be gaining?  conversations.

urgh. my body is nothing but itch right now, due to the morphine i’m taking after the ward has run out of fentanyl. BUT THINK OF THOSE PRETTY PAINTINGS IN THE NEW CANCER BUILDING GUYS! how pretty is it?!!

for me it’s really important to state that everyone’s treatment journey is individual.  for me, what i am doing is correct, and right, and when i realised that the decision what what i needed, i felt tremendous relief.  it felt sacred. it felt as though i had really been brave in choosing to do something that could be read in so many ways: but that i did it in the way i chose to do it.

and i cannot thank my medical team, and the nursing staff enough for their support. the looks on their faces of relief, of agreement, and also, of affirmation that they too were proud that i had chosen this aspect of my treatment, and that continuing, for me, was not the decision that would be most beneficial to what i want. i am tired guys. i am proud, because i am brave, and i am strong, and i am not giving in.  other people who chose to use different pathways at the end stages are also brave, strong and all of those things if those are compatible with their plans, needs, and desires, and it’s so very important to have these options and feel supported in the choices we make by our medical teams. i cannot thank my oncologist and my palliative care team enough, or the nurses who stop by to stroke my hand remind me that making my choices in empowering.

‘end stage’ is about moving into a new place for me. a place where i focus on my needs, my wants and can finally put the details of the medical things behind me. sorting the stoma will help this for me.

(i just hand a half hour nap while writing this. for context? i’ve left the bed once today. i am tired guys).

i move into hospice care on monday. i will live in a room by the lake, with my own courtyard, with a view. i will pick the little things that make me feel at home, and they will come with me. maybe i’ll feel tremendously better once i am in there? maybe i will just feel safe, and ready. but it is the right place for me.  it is the right next step for me, and i hope you, my lovely readers, will understand that though it might be sad, it’s also a time of empowerment, strength and of letting go for me to live the final stages of my life as i would like them to be lived.

 

 

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About elizabeth

various things.
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39 Responses to that next step

  1. Loui says:

    All power to you

  2. Jeremy says:

    Oh, wow. Thank you so much for this post –

    I’ve always hated the “it’s so brave” and “fighting the fight” talk around cancer and treatment, but having never experienced it firsthand I never felt like it was in my domain to discuss. Your ability to talk through your emotions and your anxiety and all of the moving pieces and parts around your treatment have been absolutely amazing to read. I’ve learned so much about the human cost and emotional rollercoaster of cancer from your blog.

    I’m sad that you’re leaving us, now that we’ve all just met you – but I’m also happy that you are empowered to make the choices you’re making.

    Thank you so much for all of your writing.

    As an aside- have you made any plans to notify the blog readers of your passing? Do you have memorial / donation plans that we can assist with?

    • elizabeth says:

      i’ve definitely got social media plans in place — i’m an archivist – interested in digital stuff by nature — and couldn’t help myself. i’m planning on either having a pre-written entry for my facebook and blog, or having a friend write a brief one. but i most definitely will make sure that it’s announced – one of the saddest things about closely following cancer/illness blogs is the abrupt stop.

      memorial plans are likely to be the Eden Monaro Cancer fund, or one of several native animal sanctuaries i really like.

  3. Rochelle says:

    Thank you Elizabeth for all you have shared in this blog. Knowing how tired you are too, it’s amazing that you have continued to provide your insights into such a difficult time. I hope your shift goes well and your new room feels like home as soon as possible. Take care.

  4. vreppert says:

    Elizabeth – this is a very raw and honest piece, and I wish you peace, love, and insight along this journey we will all tread.

  5. Irene Trudel says:

    Much love to you, Elizabeth. If this is the choice that works best for you, it is the right one.

  6. Oh Elizabeth, missing your online presence already. Sending you courage, bravery, and so much love as you move to your new home.

  7. Margie says:

    Hey Elizabeth thank you so much . Your generous spirit in sharing these thoughts with us who are strangers is just amazing. I feel a sense of tragedy in my head that your words here cannot extend into the long life that you deserve. We will never meet but I won’t forget how you shone an honest light on your difficult free falling from this life, a journey that all of us will take one day.
    I am pleased that you can make your home in the hospice….. your own room, your own treasures and a window to the world. I hope that in that room you are surrounded by friends and a bubble of love and peace that helps you to have some pain free quality of life at this important time.

  8. Thank you so much for sharing your journey with us, virtually connected but physically miles away. I write this the day after my country, the UK, decided to leave the European Union. A decision I am truly struggling to process, one that feels profoundly backwards to me…. I read your blog and I felt a small bit of shame at my self indulgence, and a much greater sense of gratitude for your sharing, and today especially, perspective.

    You are brave and strong and not giving in. You are giving out, so much. Thank you. Best of luck for a swift and uneventful move and a fabulous courtyard room for the time you have left. Much, much love xx

    • “You are giving out, so much.”
      This. I am a long time reader and another cancer patient from the other side of the world, and I started reading your blog at a time when all kinds of cancer positivity/bravery bulshit pushed me in an even deeper depression than the disease would have achieved on its own. I want to thank you from all my heart about bringing out issues that so many will face but not many will want to talk about so openly – it is so much easier to post inspiring memes than to really open up and be vulnerable about illness, mortality and death.

      I have been very sad you’re going, it is not fair, it sucks. I do think you are very very brave in the decisions you are making and the way you are communicating about them. I hope there is less of stomarama, as little pain as possible, peace, joy and lots of love. Thank you from the bottom of my heart.

  9. Joanne says:

    Wishing you love and peace Elizabeth. And thank you.

  10. Heather Beal says:

    cancer teaches us things we didn’t know we needed to learn. I have appreciated reading your thoughts. I pray that you can be present with your people and your thoughts in these next days. thank you dear

  11. I’ve been reading your blog from Austin, TX for the last couple of months. I can’t remember how I first encountered it. Probably through FB. Thank you for sharing this very personal journey with all of us. My daughters are about your age and it grieves me to see someone so young having to face what you are facing. My wish for you, as it would be for anyone, is that you can spend the rest of your life pain- and anxiety-free, that you can look back on all of your years as happy ones in which you were loved by many and in which you loved many, that your friends and loved ones will weep bitterly when you leave but will, after a time, think of you with love, fondness and humor and that you will spend eternity, in whatever form that takes, in peace. Best wishes- V Caldwell, Austin, TX.

  12. Kate Xia says:

    Thank you Elizabeth. I’ve only found out about this blog recently, but I think about you and your words often. They touched me deeply.
    Hope your new place feels like home. Please know that you will be missed..

  13. Thank you for these powerful and important words Eliz. You’re helping so many people understand not just what you’re going through, but what so many other people have, are and will – and those words just aren’t out there in the world in the same way that you’ve made them alive and real and available for people to read. Know that I’m thinking of you daily and sending my love. You’re fucking incredible e. ❤

  14. Vivzilla says:

    Thinking of you Elizabeth. xo

  15. suracim says:

    Thank you. I have a daughter training to be a doctor, and I’ve shown her your blog. I hope she shares with many of her student friends. I’ve learnt so much reading all that you have written here. A rich and beautiful life indeed. X

  16. Martha says:

    Hi Elizabeth, I wrote you about my sister the librarian. My mother also passed from cancer, last year (1.5 years after my sister) and her transition to hospice, while a bit scary as a step to take, was so wonderful and relaxing. The hospice was such a massive improvement over the hospital and we all wished she would have decided to go there earlier (she was very sick indeed when she went). It is hopefully also for you a much higher quality of life. No alarms, much quieter, less bustle, more comfy chairs, bigger rooms. Thinking of you Elizabeth.

  17. NANCI says:

    I applaud your knowledge of your body and your needs. I work at a hospice here in Ont. Canada and have seen so many people come in looking ready to go anytime and rally because of the care we give, getting the pain meds right and being right on things, instead of them having to wait. They become calmer and peaceful have a lot of quality time with family and friends. They do the personal work that they need to. I wish for you all the best of what the hospice has to give you. You are strong and have taken a very brave and important step just for you. My prayers and thoughts are with you on your journey. Nanci

  18. Kim Knott says:

    I confess I’ve only known of you since hearing you on a Podcast for RN Life Matters program. I have followed you on Twitter ever since. You’re such a generous soul and such a gifted writer. Without your generosity, random people like me would be left in the dark – I have learnt so much. You deserve the best in hospice care – I hope you start getting it. Kindest Regards, Kim.

  19. ambrazure says:

    Thank you for your writing. I have never followed a blog before, let alone read one “cover to cover” – yours is the first. Your writing – the depth of analysis and the subtlety of feeling you are able to express – has profoundly moved me.
    I am wishing you love and peace.

    Zalina in NYC

  20. I’ve really been loving following your blog. I find your writing so beautiful. It’s real and bloggy, as you say, but it has eloquence in the way that you help us picture your emotions. Sometimes sparse and sometimes more flowery, it’s all engaging. I wish I hadn’t only discovered it from Death, Sex and Money because it would have been great to be reading you all along. Anyway, thank you. I’m sorry. All of it.

  21. Sofia says:

    Thank you for your words. I hope we will hear from you again.

  22. Amandine says:

    I’m thinking of you, your words mean more to me than I can explain. You have touched my soul.

  23. Di Borg says:

    i don’t always use capitals after a full stop and I love rabbits so I related to you in an instant. thinking of ya and wishing you a beautiful journey xxx

  24. Kelly spiers says:

    I love you elizabeth. I love the obvious truth, the brave honesty and the raw beauty. But I also see the wicked sense of humour as well, and the unique coolness. I think you are wonderful. I know our friendship is completely one sided but it is so special to me. You are really very special to me. Thank you for being amazing

  25. vreppert says:

    Elizabeth – I know it’s strange to say as we have never met, but you have been on my mind a lot these days. I hope you are feeling OK and doing things you enjoy, around people you care for, during this next chapter.

  26. Clara Duong says:

    Another person you have never met but I have been thinking of you often and hoping that you are comfortable.

  27. peter says:

    Thank you Thank you!

  28. Natalia says:

    I have been reading your blog for a few months, but haven’t commented until now, feeling shy and unsure what to say, as we don’t know each other. I would like to say thank you, I think you’ve been doing a very important work, educating and teaching us folk about the realities of terminal illness and sharing your raw, unvarnished thoughts about many topics considered taboo, such as the body, dying etc. I’ve learnt so much from you. It’s a shame that you will be leaving us; so many of us are so much richer having met you, if “only” through this blog.

  29. Emma smedley says:

    RIP Liz. I never met you but followed your blog for the past year or so. Sleep well x

  30. Lorraine says:

    I have followed your blog over thaw past few months. I am a retired nurse, public servant & a cancer council volunteer. 3 weeks ago my friend died after only knowing for 3 months that she had cancer. She was angry & sad & died very quickly. I have really appreciated the stories you have told & your experiences. Enjoy the moments as best you can with the people you love xx

  31. Ann Fitzgerald says:

    Wonderful, courageous, beautiful lady. At Peace

  32. rachel says:

    May you rest in paradise lovely lady

  33. Lots and lots of love going your way xx

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