the next step: an update

on thursday, i got incredibly good news. a new chemotherapy – called TAS-102 –  is available for me to try, on compassionate grounds. it’s not yet available in australia, but we are accessing it directly from the pharma company.  it is a tablet with remarkably few side effects for a chemotherapy, and will give me, hopefully, some months of freedom to use my time far more flexibly – with no hospital visits, less side effects, two full weeks off treatment in a row.

but:

honesty time. after a discussion with my oncologist, i’ve decided to claim terminal illness benefits – my life insurance, plus my superannuation paid out.  my care has been palliate for some time, and in all honesty, no one knows how long i have.  but essentially, saying i have a year or less is no longer a remote possibility. it is a real one.

he suggested claiming it now, and using the money while i am still able to enjoy it.

i guess this is a complicated thing to deal with. on one hand, i am legitimately excited about the freedom financially that this payout will afford us. it is significant.  i am excited about travel, and i am excited about getting it sorted out, and on the road as soon as possible. there is a strange desperation to it; to everything now.  my oncologist is exceptional – honest, forthright and also extremely kind. and i know he doesn’t hesitate to be honest with me, and to take what i want – quality of life in the context of the reality that i will die soon, no matter what we do – unless something in treatment terms changes the game remarkably fast – into account. i appreciate his honesty more than i can say, and knowing that we are on the same page in terms of both my long and short term medical needs makes me feel safe. and it is hard to feel safe in this situation.

but all of this has also triggered – in a neither positive, nor negative way – the urgent need to look at my priorities for the rest of my life. what is it that matters to me? who, and what, enriches my life? who do i know will value my time, and make me feel valued? how do i want to spend this borrowed time? what do i need to do to fill this as well as possible? make it glorious. burn out like the sun until i fade away. fucking burn the world down while i can.

there are things i want to do, and i cannot do all of them. but there are the things i can do. and i need to make a list, and stare at it, and stare into the ocean, and fucking think and think about this, and make the choices.

 

a friend of mine died recently. i am not yet ready to write about it.

 

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About elizabeth

various things.
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One Response to the next step: an update

  1. Julie says:

    Deeply touched me

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