over a year on: advice to the newly diagnosed stage IV pals

i felt like blogging again for a few reasons.

the main one is, they found a blood clot in my groin yesterday. on the left side. this is terrifying for me. treatment is twice daily needles i have to self administer – i hate needles. i have had this crazy clot phobia for years. now i have one. and you know what? one day on, and i’m fine. i don’t even CARE really, that i have a blood clot, until it’s night time and i’m in the dark. then, i’m scared. but it’s actually ok. i gave myself my first clexane shot, and it didn’t hurt at all.

i was thinking about the stuff i’ve learned in the last year, and how i would talk about it now. and what my main piece of advice. not a list. but the key thing that stays with me. and when i say this, i’m really talking to people like me – stage IV folk with no chance, no real hope, of ever getting a NED.

and what it comes back to for me is:

life goes on. your life is compromised. it is negotiated around treatment. it is, at time, dead dull and infuriating and nothing like before. but it is going on. you might feel like you are stuck and still, but time is passing, and you are alive. and you won’t be forever. and that sucks. there’s no goodness in this. and it’s all good and well to say ‘everyone dies’ but when you know you are carrying those dark passengers that will cause your death, it’s a shit consolation.

but you have worth, and you have value, and you are so much more than your cancer. you are so much more than your disease. you are so much more than the shocked faces when you need to tell people you have cancer. you are so much more than the assumptions people make about what it is to have a metastatic disease. you are so much more than the ‘terminal’ box on insurance paperwork. you are glorious and you are alive.

you are not a list of things to tick off to do before you die. you are not an image on a catalogue called ‘living with cancer.’ you are as messy and great and flawed as you always were.

and if you want to just talk about your cancer a lot, you are not a shit person. if you never want to talk about cancer, you are not a shit person. you are not ‘boring’ if you focus on it, or ‘avoiding it’ if you don’t. it is your choice how you seek support, and it is VALID.

your life is still valid, even if it’s ending sooner.

you deserve the friends and loved ones in your life. it is worth being around you, despite your disease. you are worthy of the love they give you, because you are more than your disease. and the disease is a part of you, and always will be. the treatment is a part of you, and also probably always will be. shit will happen. you’ll need to go to the hospital at annoying times, or you’ll have to do gross things to yourself. other people will need to help you – be it friends or medical professionals. and you are worthy of receiving that help. you are worthy of their love. you don’t need to prove why you are still valuable even filled with disease. you don’t need to give a reason for people to stick around. they will. maybe not all of them. but you will find friendships and relationships will grow and strengthen, just as some might weaken and fall to pieces. but that is life, and you are still alive.

cancer is bad. stage IV cancer is… well… really bad. you’ll see ‘poor prognosis’. you’ll likely have times of being in pain, of nausea and tiredness and the inability to do things you used to do easily. sometimes, it will feel like you’ve sold most of yourself in order to bargain back just enough of who you are to keep living. learn to love that bit you have left. that bit is still vast and beautiful and wonderful and powerful and tough. you can do things you never thought possible. you can cope with things you would thing would break you.

and you will keep going. and some days will suck. but you know what? some days will be ok. and the day might come where you don’t think about cancer as the first thing when you wake up, or the last thing when you go to sleep. you’ll find ways to block it out, and live your life around it. even if that life is stuck on a couch, talking to people online, and dozing all day. that life is still valid. your life is still valuable.

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About elizabeth

various things.
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4 Responses to over a year on: advice to the newly diagnosed stage IV pals

  1. Ross Ford says:

    Hi Elizabeth
    I’ve been reading your article in the CT this morning. We have experienced cancer with my wife’s sister this year and her niece a few years before. We raise funds for Chris O’Brien Lifehouse in Sydney whet both were treated.
    We would love to support your bucket list and shout you an airfare for you to go to one of your favourite restaurants interstate. I understand this might be difficult with treatment times, etc but we would love to help you get through that list! Our best wishes, Ross and Penny Ford, Bungendore

    • elizabeth says:

      thank you so so much, Ross & Penny – i would really appreciate this. my email address is sky.between.branches AT gmail.com if you’d like to get in touch.

  2. Patricia Allen says:

    Welcome back. So happy to see you in words again!

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