Moving to palliative care

Ed:  We are fortunate to be able to share another piece from Elizabeth Caplice (@hrasvelgveritas).  Elizabeth’s writings are an inspiration to all of our team and I’m sure many more people out in the palliverse.   It is difficult to genuinely experience a journey you haven’t taken, but Elizabeth’s  reflections allow us a moving insight into how it feels to take those steps.   On behalf of us all I would like to thank Elizabeth for her reflections on her journey, for her writing and for her self. 

  
I’ve written before here about my time with cancer, and i am starting what i am considering a new part of my path. my body is beginning to tire in a way it hasn’t been in the past.  the chemotherapy – relatively gentle – is taking a toll on my body that is harsh and starting to cause me to question my own desire to continue treatment, and i know my liver is no longer managing either the treatment it is receiving now, or the almost two years of treatment, particularly well.

i turned 32 in april.

i have been terminally ill for some time, under one definition or another, but the sort of treatment i am seeking now, and the way my body feels now, is changing. i know that i am getting ready to move from my oncology team to my palliative care team, and that i am preparing to begin the process of dying.

1024px-Briant_Park_Summit_NJ_June_2012_sun_through_trees_8

a large part of this, for me, has been about the movement between teams, and the approach i have sensed.  Oncology, and the end point, is to cure cancer – to my understanding. my team have sought and worked to try and find a way to make me live as long as possible, and to try, however they can, to rid my body of the disease, through combined therapies.  for me, at my point of diagnosis, this was not possible with the current therapies.  it is not that my doctors have failed, but their end product has not been achieved. the goal – a patient who walks out of the door, cancer free – is impossible, and i will die of the disease they have worked so hard to take from my body. as i move to my palliative care team, i have an understanding of an entirely different set of goals. their goal is not to cure me. their goal is not to have the disease taken from me. their goal? it is to help me go forward and to live the time i have left on my terms, and to assist me in dying on my own terms, in my own way. for this team,this goal feels different.
It is a time for me now where i see different expressions on the faces of my palliative care doctors. they carry a deep understanding of death, and more importantly, of the last stages of life for both those of us dying, and those around us. but i sense from my team that they are ready for this task to take me forward, and that the death they will give me will give them what is important as professionals. as a patient, i take enormous comfort in this – knowing that i will move with my oncology team who i consider family, and get to know this new team who will also be such an important part of my life – as a patient for whom both life, and living, and dying, all matter.

As someone who is 32 and dying, i consider my life to not at all be cut short. there are always things we wish we had done. always places left to go to, people to meet, things to experience. my life is no less rich for not being longer, and in no way have i been deprived of something i have been inherently owed. surgeons i’ve found seem to understand this – that death is often something sudden, and fairness and unfairness is unhelpful.  i am often sad now for the things i will miss which i thought i would experience – none of them things like large elaborate holidays, but the simple joy of growing old with my partner, or seeing my friends’ children grow up.  it is a natural sadness; the sadness of grief.  it is a sadness that i know a palliative care team will walk me through as well, and i feel almost lucky for the chance to work with others, as a young person, for us all to learn about what it is to die, and to help someone die, as a young person.

Ed: If any of our readers would like to share their own journeys confronting death and dying, whether you are on that path or accompanying another please contact us.  Ed @mchapmanonline

Elizabeth tweets as @hrasvelgveritas and blogs at her web site Sky between branches

Image: Briant Park Summit NJ June 2012 Sun through trees 8 by Tomwsulcer CC0 1.0

 

3 thoughts on “Moving to palliative care

  1. Pingback: Care Alliance Moving to palliative care

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