a week. hospitals. tiny needles. too many tiny needles.

Hey palliverse peeps, here is another post by the wonderful Elizabeth…. she is having a torrid time with what she creatively called stomarama, which sounds like No Fun and involved painful scary needles and things.
I think she is pretty amazing….
Sonia

sky between branches

i can’t even clearly remember when i last updated.

though firstly welcome to new readers. there are a lot of you.  here are some basic things:

i talk a lot about gross stuff, but try and warn for it.

i do not post comments messaged to  me relating to alternative treatments. i have written in the past about about my reasons, and i respect all cancer patients and their own decisions regarding treatment. in return, i like to be afforded the respect of not being offered treatment options for my cancer that are not being suggested or managed by my carefully chosen multiple disciplinary team who, between all of them, have a tremendous amount of experience.  i follow this path, i am happy with my decision to do so.  i like to make people aware of this so they understand that this is an important thing for me. i appreciate…

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Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading

Palace of Care – Parallel Lives

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Cape Reinga the northern-most tip of New Zealand, where the spirits of Maori depart on their final journeys. Photo by Gadfium.

The first time I met the young ladies I had been cross-covering at the hospital, and was taken to see each of them as they both had severe pain and discomfort. They came from completely different backgrounds, had lived completely different lives but somehow ended up on the same journey.

About a week or so later they had both been admitted into our inpatient unit for pain control. Adjustments were made and they became more comfortable, but a few days later pain had returned again, as well as other problems. We had to aim at constantly moving targets, and so it would be over the next three months of their individual roller-coaster rides.

The similarities were startling; the same diagnosis, the same poor response to treatment, and in the end the same prognosis. What was completely different was their individual experiences of the same outcome. Continue reading

Palace of Care/I think therefore I am? – #getjnrbak – Nervous anticipation

Yesterday we were left with a number of questions.

Was Poppa going to be able to hold on?

Was Junior going to be okay during the flight?

What tie should I wear tomorrow?

A nervous night was spent with as many fingers crossed as possible, finger cramps set in disturbing sleep – and that was just me.

The answers to the questions above are contained in the photo below:

Continue reading

Palace of Care/I think therefore I am? – #getjnrbak – Time is of the essence

 

Since the last update a lot has happened.

The local branch of shipping company Maersk reached out to Palliverse after reading the NZ Herald article from Sunday. Their can do attitude was much appreciated by us all. Thank you very much.

Thanks also to everyone who has made suggestions, offered advice and wished us well for this mission. It is heartening that people are taking time out of their busy lives to try to help their fellow man. Be proud of yourselves.

Poppa has become extremely fatigued over the past three days which is a big concern to the hospice team and the family. There’s a possibility that time may be shortening, as Poppa’s condition continues to deteriorate.

There has been some good news – Junior has been improving everyday and has been in touch with his specialist again. His risk of further eye injury is now estimated to be low, and because of the uncertain situation that Poppa is in the decision has been made for Junior and other family members to board the earliest flight to Auckland tomorrow.

Poppa has been informed of the travel plans and is looking forward to seeing Junior tomorrow. Poppa is trying his best to hold on.

Fingers and everything else remain crossed. Prayers are being said by many people on both sides of the Tasman.

Good luck Poppa and Junior – I sincerely hope that you can have your reunion.

#NPCW16 #PallANZ Tweetchat: Living Well with Chronic Illness

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Join next week’s #PallANZ tweetchat on the topic of “Living Well with Chronic Illness”, the theme of Australia’s National Palliative Care Week (#NPCW16). Anyone with experience of living with life-limiting chronic illness, having a loved one with chronic illness, or working with people with chronic illness, is encouraged to participate. You don’t have to be Australian, and Twitter newbies are welcome!

Australian Institute of Health and Welfare statistics show that most people who who access palliative care have cancer. However, palliative care can be of benefit to many people living with non-malignant diseases and chronic illness as well. These include dementia, heart disease, lung disease or kidney disease, to name a few. Many people could benefit from what palliative care can offer, such as management of pain and other symptoms, advance care planning for the end of life, and support for carers.

Continue reading

Advance care plans: Why do these matter for all of us?

Ed: Have you been thinking about whether an advance care plan is something you should get around to doing? Perhaps you’re unsure about why it matters? Here, drawing on his caring experience and expertise as a registered Justice of the Peace, Palliverse Contributor Glen Davis muses about the relevance of advance care plans for us all. 

If you live in Victoria and would like to know more about advance care plans, The McCabe Centre for Law and Cancer is hosting a community Q&A panel on advance care planning for patients living with serious illnesses at the Wheeler Centre in Melbourne tomorrow – Thursday 19 May from 6:00 pm – 7:30 pm. You can still register for this public forum aimed at providing patients, carers and community members a better understanding of how advance care planning can support better decision-making at the end-of-life. 

@AnnaLCollins


We have the option to make plans that guide or direct the decisions made about our health care in the event we are unable in future to make those decisions for ourselves.

Notice this is an option and not an obligation. You do not have to make a plan and it is an offence for somebody to force you to.

First, a few terms. “Advance Care Planning” is the process of consultation, research and decision about what health care decisions are important to you. “Advance Care Directive” is the document recording your decisions.

my plan

Continue reading

I think therefore I am? – A thought provoking interview with Cory Taylor

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Photo by Britt Reints, used via creative commons

Driving to work on Saturday morning I listened to RNZ National’s Kim Hill interviewing celebrated Australian novelist Cory Taylor. Cory talked about the experiences that led to her writing her last book, Dying: a Memoir (Text Publishing), while dying of metastatic melanoma with brain metastases. Topics discussed include Euthanasia, Palliative Care, and writing about dying.

You can listen to the RNZ National interview here.

*Updated* 18/05/16 – Palace of Care/I think therefore I am? -#getjnrbak – Extra, extra read all about it! #pallanz

Hi everyone,

Apologies for the late update, I’ve been clinically busy while working the weekend.

We – Palliverse and the family of “Poppa” and “Junior” are still trying to find a way to make their reunion happen.

With the family’s permission here is a photo from yesterday morning’s ward round:

Shirts

“Aloha” from Saturday morning from two guys who are fashion-forward? Poppa is trying to hold on for Junior.

The link to Poppa and Junior’s Story was shared through the social media by myself, the Palliverse community and the family.

I was pleasantly surprised that the link to the post appeared as a headline on Friday 13th May’s edition of the #hpmglobal paper.li – Thank you very much Jim Cleary!

I was informed by the family that one of NZ’s national papers had contact them and they were interviewed last night.

This resulted in the following story appearing this morning:

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Snapshot of from the New Zealand Herald website – Click here to read the full story.

I’m checking out a few more traditional media leads in order to spread the word further.

I’m also trying to contact sailing clubs as suggested by others’ helpful comments.

Fingers are still crossed.


Update 18/05/16 1700 NZT:

Poppa is still holding on, but is getting mighty fatigued.

Junior is on the mend which is good to hear.

Since the NZ Herald on Sunday story we have received a number of helpful emails.

Apparently another NZ newspaper has shown interest in running our story.

I’ve emailed a number of NZ radio shows, an Australian newspaper, and whatever else that myself and other people can think of. I’ve started writing a letter to Santa Claus, the tooth fairy and others in the Pantheon.

Received by Palliverse today was an email from one of the major shipping companies with a desire to “try to make it happen.” I have passed on the details to the family to make direct contact.

This is the most promising lead so far.

Fingers crossed to the power of 10! Say your prayers folks.

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.

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