Control & Decision Making

elizabeth

Taken from my hospital room on a good day

I’ve been in hospital for the last three weeks, and have just returned back home (finally!).  It has been both a very difficult physical experience dealing with pain management and a wound, but also a mental journey for me.

 

A lot of what I read about palliative care, and my own experiences as well, have been about control; the control that palliation gives you over the time you, as an individual, have left, rather than the often more passive involvement of care when engaging in active treatment.  Throughout my treatment, I’ve been eager – possibly to my own mental and emotional detriment – to remain highly active with what has been going on.  I make guesses as to what might be causing pain or discomfort or other symptoms, explaining to my doctor what it must mean as he compassionately and respectfully listens to my ideas that I’ve gotten from my half-hearted reading of an abstract from a medical journal.  Continue reading

The Hairy End: or, the bad shit.

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Palliverse contributor Elizabeth Caplice shares this candid post with us. Thank you, Elizabeth.

sky between branches

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…

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First Person: The therapeutic value of touch

photo by Jonas Vincent via unsplash.comThe first time one of my medical professionals touched me for comfort rather than during a physical exam, it was during my liver biopsy.  I was extremely frightened of the procedure, due to how painful I’d been warned the procedure was, and I was, and still am, slightly uncomfortable with needles (though daily Clexane shots sure sorts that out fast).  The medical team at the imaging clinic I attended had gotten in a second nurse, just to hold my hand during the procedure.  It was her 60th birthday, and she had been called in, literally, just to hold my hand.  I was incredibly moved by this, and incredibly comforted to have someone gently talk me through what was going on – to warn me to look away when the giant liver biopsy needle was brought out, helping me count holding my breath as the needle drew up the cancerous cells, and gently walking me to the recovery room after the procedure finished. It was one of the kindest things I have experienced with my medical professionals – and I have experienced more kindness than I can even recognise. Continue reading

How does it feel to be young and dying?

ElizabethCAplice

Palliverse welcomes a new contributor today. Elizabeth Caplice is an archivist on hiatus. She has Stage IV colorectal cancer, and writes about cancer, and how it intersects with life, particularly in younger adults. Elizabeth has shared a recent photo, to show that “stage IV cancer looks far broader than just some elderly hands with a cannula in them.” (Try doing a Google image search for “palliative care”.)

We recommend Elizabeth’s excellent blog  Sky Between Branches and her Twitter feed. As always please leave responses in the “Comments” box below.


 

Today, I saw my oncologist, and got dealt more bad news.  Stage IV cancer life is mostly bad news, and you come to expect it.  The cancer has spread, again, after only two weeks off chemotherapy – which I needed to take due to my blood count consistently dropping to dangerous levels.  He gently told me that if it was in my bones now, it wouldn’t be shocking, because I was diagnosed with Stage IV rectal cancer a year and a half ago.  I have done remarkably well.  Continue reading