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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How much time have I got, doc? via @ConversationEDU

How much time have I got, doc? The problems with predicting survival at end of life

Sarah Winch, The University of Queensland; Bill Lukin, The University of Queensland, and John Devereux, The University of Queensland

Predicting how long a patient will survive is critically important for them and their families to guide future planning, yet notoriously difficult for doctors to predict accurately. While many patients request this information, others do not wish to know, or are incapable of knowing due to disease progression.

Fuelling this complexity are families who prefer the patient not to be told for fear of torpedoing hope and reducing the quality of time remaining. Conversely, patients may want to know themselves, but do not want to distress their loved ones with this knowledge. Continue reading

A Christmas wish…

A Christmas wish from Kate Swaffer

Creating life with words: Inspiration, love and truth

Screen Shot 2015-12-11 at 9.59.54 am

Yes, I am suffering…
but only some of the time
not every moment of every day

And, importantly…
not always from dementia
more often from the language of dementia

The symptoms of dementia
do not consume me
one hundred percent of the time

Only some moments
of some days
and definitely not all days

So why then must others
with and without dementia
exacerbate the suffering and stigma

by labelling me
a sufferer
ALL of the time?

Please do not label me a sufferer
This is my one and only
Christmas wish

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The right words matter when talking about pain

Michael Vagg, Barwon Health

It is no coincidence that we describe the “pain” of loneliness or the “agony” of rejected romantic feelings. Paper cuts can be “excruciatingly painful”, but so can watching the social mishaps of Basil Fawlty or David Brent. Personal criticism can be “stinging”.

The book The Patient’s Brain outlines the evidence that later evolutionary traits such as social cognition and language appear to have grafted themselves onto the ancient brain functions that alerted us to external threats or bodily damage.

Words are neurological events. They are meaning-laden puffs of air that our brain transforms into knowledge, opinions, emotions or danger signals.

Shakespeare, perhaps the greatest wordsmith of all time, frequently used bodily sensations including sensitivity to pain as metaphors. If you’ve ever complained about the “bitter cold”, called an ugly sight an “eyesore” or felt it “sharper than a serpent’s tooth … to have a thankless child” you might know what I mean.

Words affect pain

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

Elsewhere in the Palliverse – #D2KD Edition

photo by David Mao itsdavoWelcome to this week’s collection all things palliative from around the web. There have been some excellent palliative care-related articles published recently in the mainstream media, in addition to coverage of Dying to Know Day.

It’s Dying To Know Day (#D2KD) in Australia tomorrow, an “annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement.” D2KD Ambassador Molly Carlile, AKA the Deathtalker, appeared on The Weekly this week, passionately arguing that the community needs to take ownership of death back from the health system, with discussion of advance care planning, preferred place of death, bereavement and more. I love her plans for her own funeral – watch the video above to find out more (it’s an extended version of the interview that appeared on TV). Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to the 23rd edition of Elsewhere in the Palliverse. I hope you find value in this week’s links about palliative care and research – complete with animal story.

You’re welcome, animal-lovers.

As always, please share your thoughts in the comments.


Brand new blog DocGrief is “a dedicated space for health professionals to reflect and explore our relationship with death and grief, particularly when personally affected by a death in the family.” It was started by a rural GP based in South Australia. Her first post is heartfelt and I am following with interest. Continue reading