#Dying is About #Living. ~ Metastatic Me

"One lives with a terminal illness by taking each day as it comes.  In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week.  After time, the days started to accrue.  Slowly but surely, plans were made; goals were set.

And so I learned that dying is really about living.  

It's about taking each day for what it is, piecing together something good in it, and moving on to the next day.  It's about planning for the future, while simulatenously planning for a future without you.  It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway.  It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".

A thank you letter to David Bowie from a #Palliative #Care doctor

“So… to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you”.

Facing life’s end with grace. #EOLC #HPM

"In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.

Dying, after all, is complicated, hard business, and dying well is more complicated, and harder".

There is no inevitability in life that we are less prepared for than #death. #HPM

"There is no inevitability in life that we are less prepared for than death. Where is our guidance for this universal event that every one us will face? Why don't we teach people how to die? Why don't we teach people how to live after someone they love has died? We need to change this. We need to equip people with the tools they will need to cope. This is part of what end of life doulas do. We talk about death, with the living and the dying".

In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death.

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"Part of this book’s tremendous impact comes from the obvious fact that its author was such a brilliant polymath. And part comes from the way he conveys what happened to him — passionately working and striving, deferring gratification, waiting to live, learning to die — so well. None of it is maudlin. Nothing is exaggerated. As he wrote to a friend: 'It’s just tragic enough and just imaginable enough.' And just important enough to be unmissable".

"How Long Have I Got Left?" ~Dr. Paul Kalanithi

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"I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live".

"My Marriage Didn’t End When I Became a Widow". ~ Dr. Lucy Kalanithi

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"One night recently, alone in bed, I read “A Grief Observed” by C.­S. Lewis, and I came across the observation that “bereavement is not the truncation of married love but one of its regular phases.” He writes that “what we want is to live our marriage well and faithfully through that phase, too.” Yes, I breathed. Bereavement is more than learning to separate from a spouse. Though I can no longer comfort Paul, the other vows I made on our wedding day — to love Paul, to honor and keep him — stretch well beyond death. The commitment and loyalty, my desire to do right by him, especially as I raise our daughter, will never end". 

Lucy Kalanithi is an internist at Stanford University’s Clinical Excellence Research Center. She wrote the epilogue to her late husband Paul Kalanithi’s forthcoming book, “When Breath Becomes Air.”

Patients aren’t told that death is near until too late. We can do better.

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"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".

"A parting lesson from my parents". ~Andrew Dreyfus

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"As I have become more involved with this work, I have wondered whether the CEO of a large health plan is the right person to talk about end-of-life care. But I only have to remember how important this issue was to my brother and my parents to realize that — in this case at least — my personal experience should inform my professional actions. Everyone, regardless of economic, cultural, racial, or geographic differences, must have their choices and values heard and respected. Everyone deserves the chance to live the best life possible, to the very end".

Op-Ed 'I have terminal cancer. And I'm dying in a yearish.'

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"I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful".

What Would You Write If You Knew You Were Dying?

This talk was given at a local TEDx event, produced independently of the TED Conferences. Writing for the future. Recording conversations Rachel has a passion for honest conversations, and recognises the precious and precarious nature of life. She supports families when an adult develops cancer and helps those at the end of life to tell their story.

"When life runs out of tomorrow's, what you realize you've got is today" ~ Rachel L. Smith

Before the tomorrow's run out, use this opportunity today to think about what you will you say to your loved ones... And then say it...

Good Grief: Healthy Ways To Help A Child Mourn Their Sibling. ~Crossroads Hospice

"Few things are as powerful as the bond between brothers and sisters. The connection can often seem unbreakable, until tested by tragedy. Without a doubt, when a child loses a sibling, it can prove a very difficult journey. But with love and support, a child can weather this journey in time. 

A guiding presence ensures they process and mourn in a healthy way. While each child’s needs are unique, all parents and guardians can keep these tips in mind when discussing the loss of their sibling".

Click on the photo to access resources on this topic.

Never Bottle Things Up. ~Lily's Story

"Lily Nash's mum, Claire, died only four months ago from breast cancer. Since then, Lily, aged 10, has been meeting with Esther Gwynne once a week for bereavement counselling”.

Click on Lily's photo to read more as she shares her story... 

Grief and Mourning WebResource.

“An important question to consider is this: If we can’t deal with our fears of death, living in the background of our lives, how can we live fully in life? This quote explains it well. 

‘Normally we do not like to think about death. We would rather think about life. Why reflect on death? When you start preparing for death you soon realize that you must look into your life now… and come to face the truth of your self. Death is like a mirror in which the true meaning of life is reflected’ ~Sogyal Rinpoche

Through tools, resources, information and perspectives, GriefandMourning.com assists open-hearted and open-minded people in living a richer, satisfying and more fulfilling life.

GriefandMourning.com caters to all humans, regardless of background. Its views are non-denominational in nature, and are considered to be perspectives only. All perspectives welcome, as long as they empower and contribute in a positive way”.

Courageous Parents Network. An Invaluable Peer Community. Webresource.

"The mission and goals of Courageous Parents Network originate in my experience parenting my daughter Cameron following her diagnosis of Tay-Sachs at the age of six-months. Tay-Sachs is a rare and incurable genetic illness that always ends in early childhood death... But, in its way, it made everything that followed possible. 

We did more than survive. Despite the profound sadness of watching our beautiful daughter lose all cognitive and physical abilities, Charlie and I were able to live fully into her short life. Despite the fear we had of losing her, we were prepared to accept, face and allow her pending death. And despite the Whoosh that poured from our life and our home when we watched her die, we were able to heal and, in time, emerge from the dark fog of grief that surrounded our family.

Courageous Parents Network is about bringing these phenomena to other families who are caring for children with serious illness. It is about providing parents with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey so as to make the impossible possible".

Toward Evidence-Based End of Life Care. ~NEJM

"The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug".

Child and Youth Grief Awareness: Resources.

Click on the Butterfly to access resource materials, information and support for grieving Children and Youth.

Children's Grief Awareness Day.

"Children's Grief Awareness Day seeks to bring attention to the fact that often support can make all the difference in the life of a grieving child. It provides an opportunity for all of us to raise awareness of the painful impact that the death of a loved one has in the life of a child, an opportunity to make sure that these children receive the support they need".

Moody Cow Meditates: A playful way to introduce children to the power of meditation.

"It all started one stupid, rotten day when everything went wrong…

Peter the cow is having a BAD day. After missing the bus and wiping out on his bike he loses his temper and gets in trouble. To make matters worse all the other kids are teasing him, calling him Moody Cow. Peter’s day just seems to get worse until his grandfather comes over and teaches him how to settle his mind and let go of his frustration through a simple and fun exercise. This vibrant and funny children’s book is a playful way to introduce children to the power of meditation. With full color illustrations by the author, Moody Cow Meditates is a wonderful book for parents and children to share together.

Look for the Moody Cow Mind Jar App for iPhone and iPad, available in the App Store and iTunes!" 

Finding the Words: How to talk with children and teens about death.

"It's hard to talk to children and teens about death and dying, particularly when someone they love has died or might die soon. Our instinct as caring adults may be to shelter them from painful truths. Yet as Dr. Wolfelt emphasizes, what kids need most is our honesty and our loving presence.

This practical and compassionate handbook includes dozens of suggested phrases to use with preschoolers, school-agers, and teenagers as you explain death in general or the death of a parent, a sibling, a grandparent, or a pet. Other chapters include possible words and ideas to draw on when you are talking to kids about a death by suicide, homicide, or terminal illness. At times grown-ups must also have very difficult conversations with dying children; this book offers guidance. A final chapter discusses how to talk with kids about funerals, burial, and cremation".