Funeral Home Gets A Therapy Dog To Help Clients Cope With Grief

By Dina Fantegrossi

lulu_hall_808x500

Experiencing the loss of a loved one is devastating. It is the most stressful, disorienting and agonizing event we can suffer through. For some, the process of planning and attending the memorial services for their deceased companion is more than they can bear.

One White Plains, NY funeral home has found a way to ease that burden, if only for a short while.

lulu-sign-e1467828667560

Ballard-Durand Funeral Home has an extra staff member who provides a special kind of comfort to grieving clients. Her name is LuLu and she is a therapy dog. The majority of the facility’s clients have heard about their one-of-a-kind employee and specifically request Lulu’s services when they come in.

lulu-bed-e1467828847515

Matthew Fiorillo, the president of  Ballard-Durand Funeral Home, told NBC Today that he came up with the idea of getting a therapy dog during a particularly stressful visit to the airport. Fiorillo’s flight had been canceled and he was battling the anger and anxiety of the situation when a Maltese trotted past with its owner. Just the presence of a dog was enough to soothe his rising tension.

A wave of calmness washed over me and after it happened I was like, wow, that was really powerful!

lulu-fiorillo-e1467829042245

Fiorillo began researching the logistics of incorporating a dog into the delicate practice of funeral services. Lulu the Goldendoodle officially came on board the team in May of 2015. Like many dogs, she instinctively senses where, when and how she’s needed most. Fiorillo told NBC Today:

She’ll park herself right next to an older person to let them pet her one minute and the next she’s prancing around with kids. It’s been really impressive to watch.

lulu-glass-e1467829266367

Lulu is a calm, sturdy beacon of support for those whose lives have spun suddenly out of control. Her presence allows otherwise stoic men to weep, and gives brokenhearted children the chance to laugh again.

lulu-stairs-e1467830260178

Fiorillo also takes comfort in Lulu’s companionship. The funeral services profession is highly stressful and very emotional. Sometimes a replenishing hug from Lulu is just what he needs to help him release his own emotions and better serve his clients.

Humans need to touch. Even just petting her can be a subtle distraction from the tremendous amount of grief people are going through.

lulu-hug-e1467829155616

For those who take comfort in spirituality or the belief in a higher power, Lulu’s ability to “pray” is astonishing. Chelsea Sules lost her 25-year-old brother on June 17. Her grief was stifling, but within minutes of meeting Lulu, she found herself laughing once again. She told NBC Today:

Lulu was with us for both of the wakes and out of nowhere we see her kneeling on a bench with her head down and praying in front of my brother’s casket. It blew us away.

lulu-pray-e1467829376828

Want more Lulu? Visit the Ballard-Durand Funeral Home on Facebook to see more photos and inspiring messages of hope in the face of loss.

Complete Article HERE!

What I should have told my dying friend

By Shannon Molloy

Clare Atkinson
Clare Atkinson passed away on June 22 from a rare form of cancer. Her friend, journalist Shannon Molloy, had so much he wanted to tell her.

The last time I saw my friend Clare was two weeks ago in a hospice in Melbourne.

For a place where people come to die, it was an unnecessarily sad old building with no warmth, no comfort. Just beige walls and dull furnishings.

Terms like “palliative care” weren’t hidden away here — but instead, displayed on signs with arrows pointing the way to the sick and dying. There, among the mostly elderly patients, lay my 31-year-old dear mate.

Physically, she was a shell of her former self. Cancer had ravaged her body in 18 short months and left behind a confronting sight where vibrancy and a constantly burning energy once resided. Her stomach and legs were horrifically swollen, overrun with fluid as her organs slowly shut down.

But inside, her old spirit still glimmered.

“How are you?” I clumsily asked as I walked in. The moment the words left my mouth, I regretted them. How did I think she was?

“Well, I’ve been better,” she laughed gently. “Not sure if you can tell.”

I sat and held her hand, gently patting the bony and frail limb that once gripped a pen that wrote stunningly insightful words, and held a microphone that powerfully conveyed compelling pieces, here and abroad, for radio and television. Her remarkable but brief career in journalism seemed a million years ago in that moment, as she slipped in and out of consciousness and struggled to speak.

Like so many of the times I’d spent with her after her diagnosis, words failed me. I said nothing of the consequences at this meeting — the final one I would have with her, as it turned out. Just words to fill the silence, a forced smile painted on my face.

What was there to say anyhow?

Clare Atkinson, with the writer Shannon Molloy, had an inspiring love of life.
Clare Atkinson, with the writer Shannon Molloy, had an inspiring love of life.

I know now. I should’ve said that she’d been a wonderful friend for the past 11 years, from the moment we were introduced at uni and set about reviving our student association together — a task from which a cherished and close friendship was born.

I should’ve said that I’d always admire her and, truth be told, that I envied her; that I was proud of all she’d achieved — more in a third of life than most of us could dream in a whole lifetime.

Perhaps I could’ve told her that she’s one of the kindest people I’ve ever met, with not an ounce of malice in her bones.

I might’ve asked if she was frightened. She didn’t seem it, but I would be. I’d be angry too — furious at how unfair the situation was, that she was just getting started. Why was now the time she had to face this awful, daunting thing?

I should’ve told her that I’d rather selfishly become determined to live a better life than I had before, for her, I suppose. To be more adventurous, to take risks, to love, to be a good person, to be less concerned with the small and trivial things, to stop stuffing around… all of the things she had been, even before her own mortality presented itself at 29.

I should’ve shared all the many fond, happy memories I have of our antics — most of which flooded my mind the moment I stepped away from that small, depressing hospice room.

There was the night of drunken deep and meaningful chat about our futures at an end-of-year uni social.

There was the early morning SOS call after a fight with an ex-boyfriend, when I collected her from a darkened street and took her to McDonald’s for sundaes and a long whinge about stupid boys.

There were emails back and forth after she moved to Germany for work. There were excited Facebook chats when she later came home and met the charming man who’d become her husband.

There was a night — now quite funny — when we danced wildly inside a club while our unlucky friend was hit by a taxi outside. She was fine, just a bit bruised. And now, whenever we hear an ambulance siren, we announce that her cab home has arrived. Well, we did.

And of course, there was that day in early December 2014 when she dropped a bomb. She had cancer, it was terminal and it was very rare and very aggressive.

“I’m so sorry,” I said. I couldn’t think of anything else, and so I left it at that and let her speak.

On reflection, I said nothing of real consequence at any stage. I couldn’t. My role was to remain the funny one, I reasoned, to be her brief light of relief from the heavy burden of the rest of her new existence.

I told jokes, brought her old photos, suggested podcasts and books, shared funny stories about diva celebrities I’d encountered through work and generally tried to keep the mood up. In reality, I was scared to confront this thing that was stealing my friend away from me, from her family, from her adoring partner, from the rest of her mates.

I was terrified that if I was to drop my guard that I might cry, and I might never stop. And that would be selfish in light of her struggle. And so I kept the cancer chat light, treating it like a deadly elephant in the corner of the room, and tried to make her smile instead.

There was a day a few months ago though, when I went to see her and she was in a reflective mood. We spoke for several hours about the old days, about the years since, about life, and she said something that still rings in my head.

“If I could go back to the beginning of my life and choose not to have the cancer, but to miss out on everything I’ve done, in exchange for something far duller, I wouldn’t do it,” she told me.

“Because as shit as this is, I’ve had an amazing life. It’ll be over too soon but I’m pretty happy with it.”

In a rare and unfiltered moment, I was as candid as I could be without losing it.

“You did real good,” I said. And she had.

She lived how we all should live — fiercely, bravely, enthusiastically and like her life depended on it — long before it actually did.

And when it’s all said and done, isn’t that a place we all hope to be when our time’s up?

Clare Atkinson died late in the night on Wednesday June 22, peacefully and surrounded by her loved ones.

It was just days after she was able to return home from the hospice to her lovely, bright bedroom, with views out over the city.

Clare Atkinson on her wedding day with husband Lewis Rowland-Coman.
Clare Atkinson on her wedding day with husband Lewis Rowland-Coman.

You can donate to the Clare Atkinson Memorial Fund, supporting the Peter MacCallum Cancer Centre’s research into cancer of the unknown primary (CUP).

Complete Article HERE!

The Violet Hour: Great Writers at the End by Katie Roiphe review – how to cope with death

This study of Susan Sontag, Sigmund Freud, John Updike, and how they coped with the mystery of extinction, is also a memoir about brushes with mortality

By 

001
Katie Roiphe: ‘I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better.’

Katie Roiphe begins her study of writers in their last hours with the story of a near-death experience: her own. At the age of 12 she began coughing up blood, but decided not to tell anyone – not her parents, or sisters, or doctor. She had in fact developed acute pneumonia, and after an operation that removed half of a lung she came out of hospital weighing 60lb, “too weak to open a door”. Ever since that narrow escape, death became her obsession, but one that continued to defy understanding or articulation. Who could make sense of such a thing? Her answer: great writers, specifically great writers as they approached death’s door. “I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better. It comes down to that.” This mini-memoir, and a coda, are the most compelling parts of The Violet Hour. They bookend a sequence of five case studies of writers whose thoughts on mortality are often arresting, sometimes moving, yet never add up to a coherent vision of what Henry James called “the distinguished thing”.

Roiphe (above), an essayist, teacher and contrarian, is a woman up for a challenge. Her most recent books – a study of literary unions, Uncommon Arrangements, andIn Praise of Messy Lives, a scattershot broadside against the way we live now – reveal her tough, unbiddable, non-ingratiating character. Fittingly, her first subject is Susan Sontag, a writer whose personal and intellectual fierceness could be Roiphe’s model. Sontag’s determination to outface death became part of her legend. She had already survived cancer, twice, when she was diagnosed with leukaemia in 2004. Believing herself to be “exceptional”, she rejected the evidence, adopting a get-well-or-die-trying attitude that caused intense anguish among the people who cared for her – her son David, friends, nurses, hired hands. She took up cudgels once again, enduring chemo and the dangerous procedure of a bone marrow transplant. The treatment caused her shocking physical agony. At this point I couldn’t help thinking of Woody Allen’s line: “I don’t want to achieve immortality through my work. I want to achieve it through not dying.”

Susan Sontag with her son. David, in 1967.
Susan Sontag with her son. David, in 1967.

Sontag is an extreme case – and the only woman – in this book. Her example is unlikely to make Roiphe, or anyone, “feel better” about death. Sigmund Freud, on the other hand, adopted the opposite approach. Even as a young man he disliked the idea of “prolonging life at all costs”. Stricken by an inoperable cancer of the jaw, he refused any painkillers other than aspirin. “I prefer to think in torment than not to be able to think clearly,” he said. Was his stoicism a better, braver way to face the end? As Larkin wrote in “Aubade”, “Death is no different whined at than withstood”. His disciples believed that Freud had no terror of the end, but Roiphe wonders if he protested his indifference too much: he may have been trying to persuade himself that he didn’t care.

Shadowing Roiphe’s book is a tentative desire to find something consolatory – a truth, a meaning – in death. Can writers teach us how to die? The uncertain, provisional nature of her project is evident. Instead of a continuous narrative, she writes in discrete floating paragraphs, as if conducting a philosophical investigation. Either that, or she doesn’t quite know how to structure her argument. Maurice Sendak, a writer and illustrator she has revered from childhood, described death “as if it is a friend who is waiting for him”. He suffered a heart attack at 39, but lived on till his 80s. He owned Keats’s original death mask and would take it out “to stroke the smooth white forehead”. When his lover died, Sendak drew his corpse, obeying the creative instinct “to turn something terrible into art”. Here Roiphe does get at something useful, which is the consolation of work: “For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.” (I would take “or bereft” out of that sentence.)

John Updike, characteristically, worked unto the last, writing some of his most poignant poems (in Endpoint) from his hospital bed. Like Freud, he cleaved to stoicism in considering death, but unlike him had sought comfort in religious faith and sexual adventure, the latter his way – or at least his characters’ way – of cheating mortality: “If you have a secret, submerged, second life, you have somehow transcended or outwitted the confines of a single life.” In an almost too-perfect illustration of his twin drives we learn that Updike plotted Couples, his great novel of adultery, while in church – “little shivers and urgencies I would jot down on the program”. The oddness of this chapter, however, concerns what happened between Updike’s family during his last illness. His first wife Mary and their four grown-up children seem to have come a cropper under the Cerberus-like vigilance of his second wife Martha. The children felt that Martha, perhaps with her husband’s tacit agreement, restricted their “alone-time” with Updike. This is interesting as gossip, but I can’t see how it enlarges our understanding of the writer or his work.

Dylan Thomas in 1946.
Dylan Thomas in 1946.

Even less illuminating is the record of Dylan Thomas’s bibulous last days in New York, swaggering – or staggering – from hotel to pub to hospital and thence into a coma. Roiphe notes that myths have clustered around his death, and the causes of it. Some still argue that he “wasn’t an alcoholic”. Seriously? Put it this way: if Dylan Thomas was not an alcoholic then his was an even more horrifying personality than at first appears. Addiction would at least explain, if not excuse, his lechery, his flakiness, his self-pity, his self-loathing, his tendency to steal from his friends, and the fact that he had written only six poems in his last six years. At 39, Thomas is the youngest to go of this small assembly and the one whose death I felt least inclined to lament.

The Violet Hour does, however, rally at the end. For reasons the author doesn’t entirely understand she seeks an interview with James Salter, then 89 years old, and nearly the last Great American Novelist. To her surprise he agrees to talk. Perhaps it is her contact with a living subject, perhaps it is Salter’s wry, Delphic way with words, or the fact that he came close to death as a fighter pilot in Korea, but something is unlocked by their encounter and Roiphe at last identifies what her quest has been about – not death but the fear of death: “The knowing you are about to die. The panic of its approach … That’s what I’ve been trying to write my way through.” It returns her to another formative moment in her life, the sudden collapse of her father – a heart attack in the lobby of his building – and her belated realisation that he must have felt pain in the minutes before he died. She is excruciated by the idea of his pain, and that he may have panicked. “The idea that he didn’t have time to be afraid had consoled me.”

This book is Roiphe’s haunting but muddled attempt to come to terms with the mystery of extinction. Her father died, and she will never know what he was going through. Salter, who died last year, knew best: “Don’t dwell on it.”

Complete Article HERE!

What Are the Levels of Hospice Care?

Medicare Determines Hospice Care Level Definitions

levels of hospice care

By Angela Morrow, RN

Medicare defines four distinct levels of hospice care. This benefit provides goods and services to allow you and your family to stay together in the comfort of your home, unless you need care in an inpatient facility, for the duration of your terminal illness.

The patient is still responsible for the deductible and coinsurance amounts for expenses incurred due to health problems not related to the terminal illness.

Level 1 – Routine Home Care

Routine home care is the basic level of care under the hospice benefit. If a patient resides in a nursing home, it can also be called routine nursing home care, and includes:

  • Nursing services
  • Physician participation
  • Medical social services
  • Home health aide services
  • Counseling services (pastoral, spiritual, bereavement, dietary, and others)
  • Medications
  • Medical equipment
  • Medical supplies
  • Lab and diagnostic studies related to terminal diagnosis
  • Therapy services

Level 2 – Continuous Home Care

If you have continuous home care, a nurse and/or a home health aide will remain in the patient’s home environment for 8 to 24 hours per day. Continuous care is a short-term level of care reevaluated every 24 hours. Some examples of symptoms requiring continuous care would be:

  • unrelieved pain
  • severe nausea and vomiting
  • severe shortness of breath
  • anxiety or panic attacks
  • a breakdown in the primary caregiver support system

Level 3 – General Inpatient Care

Some patients have short-term symptoms so severe they cannot get adequate treatment at home or they may feel more comfortable getting treatment at aninpatient facility.

Symptoms requiring inpatient care are the same as those requiring continuous care (above), only the setting of care may be different.

With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable. There are several types of facilities that offer inpatient hospice services:

  • A free-standing facility owned and operated by a hospice company.
  • A hospital may have a unit to provide inpatient hospice care.
  • Long term care facility may lease a unit in a nursing home to a hospice company.

Level 4 – Respite Care

Respite care services are more for the family than for the patient. If the patient does not meet criteria to qualify them for continuous care or inpatient care but the family is having a difficult time, respite care may be an option.

If a patient’s family is the primary source of care and cannot meet their needs due tocaregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. There is a five-day limit on respite care. Once that period expires, the patient is discharged and returns home.

Determining Level of Care

A facility admits patients to hospice on any level of care necessary at that time. The facility can transfer the patients between levels of care as their needs change. The decision to treat someone at a higher level of care falls to the hospice physician, who documents this information. With four levels of care in place, no patient should ever be left in a crisis situation alone.

Complete Article HERE!

The 11 qualities of a good death, according to research

BY Jordan Rosenfeld

The 11 qualities of a good death, according to research

Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morris Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directivesinto writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and pediatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

Complete Article HERE!

I am sorry I didn’t beat cancer

By Uzma

001

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

Complete Article HERE!

Dying for beginners: Cory Taylor on facing death with honesty

by Richard Fidler

CORY TAYLOR AT HER HOME IN BRISBANE IN JUNE 2016.
CORY TAYLOR AT HER HOME IN BRISBANE IN JUNE 2016.

Award-winning Australian writer Cory Taylor spent the last years of her life fascinated with her own mortality, writing a memoir that she hoped would trigger more open and honest conversations about death. In her last weeks, she shared some of her insights in a bedside interview with Richard Fidler.

Cory Taylor died on Tuesday, without pain, and with her family all around her. She had just turned 61.

For a decade, she had lived with the certainty of her death from melanoma-related brain cancer.002

Her final project, Dying: A Memoir, was written earlier this year in the space of just a few weeks.

Julian Barnes wrote after he read Dying, ‘We should all hope for as vivid a looking-back, and as cogent a looking-forward, when we reach the end ourselves.’

Her publisher, Michael Heyward, announced plans to publish the book around the world in the coming months.

Cory’s writing career started with screenwriting, moved into children’s books, and then novels for adults.

Her first novel, Me and Mr Booker, won the Commonwealth Writers Prize (Pacific Region) and her second, My Beautiful Enemy, was shortlisted for the Miles Franklin Literary Award.

Just three weeks ago, Richard Fidler spoke to Cory at her home in Brisbane. Here are some highlights of their conversation about her life, and her feelings about her own death.

On life in her last weeks

‘I move from my bed in my bedroom, to my sofa here in the living room, and basically I stay here and I’m fed delectables all day and that’s about it.

‘Reading, I find pretty exhausting, which is sad. Even watching stuff on TV taxes you a lot. But I miss reading, so I do force myself to read.

‘One of the things I do is dream a lot about life. Not dream as in sleep dreaming, but day dreaming. It’s not as if I’m gathering memories but I still am very steeped in memory.

On being a ‘beginner’ at dying

‘I’ve never seen anybody die, so it’s not something I know anything about.

‘I think we should all study it. I think we should all spend time with people when they’re dying.

‘Basically, it’s all hidden from us … we’re so ignorant about how does it happen actually, physically, and then what do we read from that?

‘I wish I’d known a lot more about it before now.’

On the idea of assisted dying

‘I’ve always felt that I have controlled my destiny, pretty much. That may be a compete delusion—well, obviously it is, because I’m dying and I didn’t plan that.

‘But it’s the lack of control when you’re dying that is so terrifying.

‘Even to think that you have the possibility to control the circumstances, to put yourself out of your own misery, it just renews that sense you do have some control over what’s going to happen to you.

‘And that is a real comfort.’

Cory Taylor at her home in Brisbane.
Cory Taylor at her home in Brisbane.

On whether to think about dying

‘I don’t think you should think daily on it, but I do think it’s worth having in the back of your mind, in terms of the kinds of conversations you want to have with your family … so that they have a sense that you are not there forever.

‘That means that you value certain things now and you want to enjoy certain things now and there are a whole lot of things you don’t want to do and you don’t want to waste time on, because you’re aware that it’s all finite and it can be over faster than you think.’

On cancer

‘The last thing I wanted was to write a morbid analysis of my cancer treatment or my “battle” with this disease.

‘The war metaphor doesn’t really work for me at all. It is a “coming into” dying, as if that’s a natural flourishing in a way.

‘It is a momentous thing. It’s the most important thing that’s going to happen to you after your birth.

‘The complete randomness of the whole thing … that’s not what saddens me about dying. The ultimate randomness is death, isn’t it?

‘Despite all the randomness and precariousness of it all, it’s still an enormous gift and an enormous blessing, so why would you begrudge any of it? It doesn’t really matter in the end.’

On consoling loved ones

‘People have been to me surprisingly emotional about me dying, when I don’t feel as sad as they are. You want to protect them from that and say: “It is alright.”

‘I think my book has helped my friends to realise I am telling the truth. I am OK.

‘I have managed to do the things I wanted to do, and I’m not going out full of regrets or grudges, or anything like that.’

On her funeral plans

‘I’m a bit hazy on my funeral plans. I had a book launch (in Brisbane) and I was just there in the ether, talking on Skype. And I could see the audience, and it was a bit riotous, and there was lots of laughter, and lots of tears.

‘A lot of people who went called me later and said, “Oh Cory it was fabulous, it was like being at your funeral.”

‘I thought, “Oh that’s good. I’ve done it now. I don’t have to do it again!”

‘So I’d probably want a repeat of the launch, which is just a room full of friends, and lots of grog and food, and people saying lovely things about you. That’d do.’

Complete Article HERE!