Sunday, October 15, 2017

Caregiving and Your Spiritual Life

Oh, we pray a lot as caregivers. You may be saying traditional, memorized prayers. You may be talking to whatever is bigger than you (I call that your “Bigger”) in a direct and sometimes desperate way. Or maybe your prayer just sounds a lot like cursing, “Jesus Christ!” and “For God’s sake, come on!” But those also count as prayers.

I’ve been a spiritual director and a spiritual coach for many years. Almost as long as I have been a caregiver. For years I had to explain and explain and almost apologize, “No, not religious”, “Nope, not Catholic,” and “No, I’m not part of a church”…and I got used to the baffled looks.

Now, more and more people understand the difference between religion and spirituality, between believing in God and wanting to connect with something bigger and outside of themselves. And as we get older our need to make sense of life and to clarify our values and beliefs presses on us.

So, I was so happy to see that Dr. Jeff Kane, author of the book, “Healing Healthcare” includes a chapter on spiritual support as an essential component in the healthcare system. In chapter 18, “Help is on the Way” Kane writes about all of the kinds of help a patient and the caregiver need to make the medical experience complete and successful.

He writes about one hospital chaplain, David Swetman, who distributes a flyer to all patients and families in the local hospital that includes this statement: 

You think. You feel. You communicate. You have relationships. You have a style, a sense of humor, and attitude and an approach to life. Perhaps you feel deep religious beliefs or a strong connection to God; perhaps you have none. It is all of these non-physical parts of you that make up your spiritual self.”

Kane points out that while illness may cause pain to the physical body, it is in those non-physical parts that suffering resides, and that suffering also requires treatment.

And so, as caregivers we need to give time, attention and resources to our spiritual health as well. 

Wednesday, September 27, 2017

Caregivers: The Invisible Patients

At a cocktail party last week, the conversation turned to healthcare. Of course, these days, the conversation might also turn to healthcare at the gas station, yoga class, or PTA meeting. We’re all concerned about what changes are coming to healthcare.

But we residents of CancerLand have special concerns—we worry about what will happen to preexisting conditions, the cost of tests and screening, and possible limitations on certain treatments. Patients surely don’t need that extra fear, and as caregivers we take an extra twist in our healthcare worry: we put off our own care.

So often we caregivers forget that we are patients too. We are the “invisible patients.” That’s the term I’ve  
been chewing on this week after reading the book, “Healing Healthcare –How Doctors and Patients Can Heal Our Sick System” by Jeff Kane, MD.

That cocktail party conversation turned out to be a valuable one because one of the people I was chatting with insisted that I get—and read—Kane’s book. And he was so adamant that I ordered one right away and dug in. 

I was expecting economic analysis or demographics or maybe operating room stories but I had a great surprise: Kane’s specialty is compassion. Yes, compassion as a best practice in healthcare and measuring the impact of compassion as a practice in hospital and home care. Yes, wow!

You’ll be pleased too to see how Kane writes about the importance of family caregivers—and he uses the term, “the invisible patient”. He’s a strong advocate for doctors and nurses being trained to include the caregiver in exam, discussion, treatment planning and aftercare—and most radical, he believes that the primary patient cannot get well if the caregiver’s needs are not addressed. And by “addressed” he does not mean a long soulful look and “How’s it going Bob?” moment before the couple leaves his office. He means taking the caregiver’s blood pressure, talking about their sleep and diet, and finding out how much help they have at home.

Kane documents why this is so crucial: the incidence of depression and anxiety in caregivers, how those problems bloom into physical disorders such as high blood pressure, decreased immunity, and cardiovascular disease. If you are a caregiver or are around some you’re not surprised to read this. But look at this from Kane: “Spousal caregivers age 66 or older have a 63 percent higher mortality rate than non-caregivers the same age.”

This smart doc knows that one patient will turn into two very quickly when giving care to a loved one with cancer or other serious, chronic illness.

Kane’s book is well worth a read: for all caregivers, for family members around the caregiver, for healthcare staff too. An idea: Be bold and buy a copy ($1 or $2 for a used copy) and hand one to your doc and mark the pages about caregivers. A little education and honest conversation can go a long way.

Monday, September 18, 2017

When a Woman Writes About Her Life

“If a woman writes about herself, she’s a narcissist. If a man does the same thing, he’s describing the human condition.”
--Emily Gould

Emily Gould’s book, “And the Heart Says Whatever” is a collection of essays about what it’s like to be her—and by showing us her one life we learn a lot about –not just other lives, but about how to, maybe, think about our own lives.

She also said--and I love this, “When women are honest about their experiences, it’s destabilizing.”

 Right? 

As I continue to write about cancer and caregiving and love and sex, and about work and clothes and money and fear, I swing between trying to be helpful and being both destabilized and destabilizing. 
So, I also ask: Am I writing one woman’s story or am I describing the human condition?

In some ways, I think it’s not my job to decide, but rather that is yours to discern. As we learn from Alanon, “Take what you like and leave the rest.” My hope—and my prayer—is that by writing about my fears and flaws I can offer you a way to deal here in CancerLand.

Wednesday, September 6, 2017

The Literature of Caregiving: Tom Lubbock and Marion Coultis

It is not often that we have both patient and caregiver as extraordinary writers. And while often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death. 

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he
died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, and arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he is articulating what language means and what it means when a writer is losing language. You would think: “too morbid”. But no.

These books, Tom’s and Marion’s, are slim and carefully crafted. These two are such fine
writers so I encourage you to read both, together and side by side. Do you see how each one describes the same day? What does it look like to him? To her? How they see the world includes what they see, as they see each other, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said, ‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands.”

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love. And this thing that we all do until death—we try to put life into words.

Saturday, September 2, 2017

Grow Your Own Mother

Last week on vacation I read, “Will I Ever Be Good Enough?” by Karyl McBride, PhD. It is about healing and growth for daughters of narcissistic mothers. McBride writes about the persistent feeling of never being good enough and the invisibility that accrue to women whose mothers were on the continuum from self-absorbed to full-blown narcissist.

Part of the recovery that McBride suggests is developing an internal mother who is all the things that one’s real mother was not able to be. 


So, at the beach I began to envision what that new mother of mine might be like. I began to imagine borrowing parts of other women—and some men—to grow my own mother.

To be fair I did include many of the great qualities of my own real Mom: passion, curiosity, charity, physical energy and humor. But, as I walked the beach, I began to name the people who I would include as I grow my internal mother.

I added in bits of Georgia O’Keefe, May Sarton, parts of some good friends whom I’d want to have as part of my eternal mom-in-me. I also added in my two grandmothers: Josephine and Sophia. I never met them, but I knew of them.

But could I pass up a grandmother named Sophia—wisdom—in building my inner mother? And Josephine, my maternal grandmother) who was a professional a poker player and the neighborhood “reproductive health advocate” (she helped women in poverty to limit the size of their families.)  As I walked the beach I wrote the names of these woman in the sand, physically co-signing the new mother-in-me.

I picture this mom-in-me growing kind of like one of those pills you drop in water to delight a child. After soaking up lots of water the foamy pill blossoms into a seahorse or dragon. Now, soaked in lots of saltwater—both ocean and tears--I am growing my own mother.

Saturday, August 5, 2017

We All Have Cancer

Yesterday I looked through my Cancer library (yes, I have a lot of cancer books) and I pulled down the book, “Anticancer: A New Way of Life” by David Servan-Schreiber.

Servan-Schreiber was one of the founders of Doctors Without Borders and an accomplished neuro-psychiatrist. At age 31 he was diagnosed with a brain tumor. His book is about what he learned about cancer, and cancer treatment and cancer prevention.

Some of what he has to say is not new: the importance of exercise, diet, alternative treatments etc. But what is new is his description of roles we play in CancerLand-the patient’s role in his/her own care versus the doctor’s role. He also gives great guidance on how to sort medical info, nutritional info and he writes a lot about the physiological impact of stress. And the stress of cancer. He’s got lots and lots of facts.

But here is the fact that blew me away: “One hundred percent of people have cancer cells in their bodies after the age of fifty.” 

100% of us have cancer after 50. We all have cancer. In some people, it develops into tumors or conditions that become life threatening, in others it does not. But after age fifty we all have cancer cells in our bodies.

That’s wild and powerful information to process. It’s significant when you think about what it means to maintain your health but also relevant to cancer screening and tests for cancer. And it is especially a starting point for wrapping our heads around our consistent denial of mortality and death. Because here is the other absolute health statistic: 100% of us will die. 

We all have cancer, and we will all die. That’s not great news, but it’s not terrible news either. There is a lot of freedom—and maybe a path to peace—in those facts.

Knowing that all of us have cancer levels the field: there are not two camps: the sick and the well. There’s just each of us in some stage of living and dying.

This makes me think of Mary Oliver’s beautiful poem, “Wild Geese” in which she asks,

 “What will you do with your one wild and precious life?”

Monday, July 24, 2017

Do You Worry About Cancer Coming Back?

You may have discovered this: Most of your role as a cancer caregiver is, naturally, doing the daily care of your loved one—and of course, that brings up a lot of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So, I waited
and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we do talk about that, but what I can’t tell him is that I’m not sure that I can go through this again.”

Oh, I thought, “Oh, she is voicing the taboo.”

All of this I write about being a caregiver and dealing with the logistics of medical care, and the money, and the sex, but maybe I was missing what you might most need to talk about: the scary, uncomfortable, painful and awful-- often secret--truth, that we do not want to go through this again.

Part of it is that as caregivers we are in a secondary role: The patient is the lead and you, the caregiver, are the supporting actor. But we also get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over heels into the expectations that we will: roll with the punches; go with the flow; do whatever it takes.

But then, after the first round of cancer, after you come back to the surface, you might find yourself thinking, “I do not know if I can do this again.” 

You are not alone. Part of the stress is the timing. When cancer comes the first time we really don’t know a dam thing about what’s about to happen.

We read the pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe after you’ve had about a year out of CancerLand, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now you know, now you have a sense of this exhaustion and fear, and in that way it’s harder because the adrenaline of shock isn’t there to help us. And it is also true that there is less help—from family and friends--when cancer goes from crisis to chronic.

So, I told my friend that she is not alone. And you are not alone if you had this worry. I have been there and truthfully, I still go there: “Could I do it again?” I probably would, and so would you. But having that secret feel like shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. You don’t either. But I don't want you to have another layer of pain because you hate what cancer did to your good life.

Sunday, July 2, 2017

Mindfulness and Meditation for Caregivers

It would seem impossible to add one more thing to the caregiver’s to-do list. But, adding meditation or a mindfulness practice may be the very thing that makes that too long list a little more manageable.

No, doing meditation or yoga or Qigong or another mindful practice is not a remedy to the

stress and business of caregiving, but is absolutely a positive aid and help.

Now documented in many years longitudinal research, it’s been shown that caregivers—of people with serious illness, dementia or a child with a developmental delay—cope better, report more ease, and have fewer physical symptoms of their own when they are engaged in a mindfulness practice.

And mindful meditation, a breathing practice or yoga can become more than just a way to cope with the stress; it’s also a way to fully --and positively--embrace one’s life as caregiver.  

Trying to attend a weekly class may be a bit over the top, but there are many online resources, and podcasts that give basic instruction in Pranayama (Yoga breathing), restorative yoga, mindful awareness, and meditation. And if you are part of a caregiver support group, ask if some meditation or yoga instruction can be added to the meeting once a month.

Sunday, June 25, 2017

There's an APP for that Caregiver

We all need a helping hand when we are a family caregiver, and now there are a variety of social media applications that can go a long way to helping caregivers. 

Sometimes the hardest part of caregiving (after surfing all the emotions that arise) is managing your time. Today we know that—statistically—the typical caregiver is a woman in her forties, married, with children at home, caring for an elderly family member. Add work and economic challenges and you have a tsunami of worry and logistics. 

While the best help for the worry is likely a caregiver support group or a phone buddy who has been through it too, the help for managing logistics can now be on your phone or tablet.

Those logistics center around tasks: who is driving Mom, who is shopping, doing respite, picking up prescriptions or talking to the doc?

Talking itself consumes a huge amount of time and caregiver energy—so a way to outsource or support communication can be a lifesaver. Delegating a single scribe to handle updates to the family & friend communities saves the primary caregiver from call after call every night or every time there is a new treatment or procedure.

Here are a few helpful tools to make your caregiver life a little easier:

Google Calendar: It’s free and many people can use it at the same time. Use it to share info and appointments and ride scheduling.

Wunderlist: a task managing ap for multiple users. You list the tasks and participants can agree in real, online time to take a task and complete it. It also provides reminders. There is a free version for up to 25 participants.

Lotsa Helping Hands: is specifically for caregiver management. You can post requests for help listing specific needs and tasks. Family and friends log in to say yes and take that off your plate. There is also a blog feature where news can be shared out to the selected community all at once.

CareZone: an app for medication management. You can scan the prescription bottles with your phone’s camera and the app creates a list and schedule of all medications and dosages. It also provides reminders and health updates. Medication lists are in one place when talking to a doc or intake coordinator.

There are many more like these that you can find by searching for “technology for caregivers”. Many were designed for care in an elderly population but work perfectly in a cancer care/cancer caregiver situation.

And with any hospitalization --or at your chemo center --ask for the patient relations coordinator—don’t be shy about this-they have the latest news on services at their location and in their networks.

Saturday, June 17, 2017

Summer is Coming

Today we did a three-mile walk up and down the hills.  We were huffing and puffing but moving along pretty well. As we made the turn to come back home I said to John, “Do you remember the summer after your first surgery; you could not walk from our front door to the car.” He did remember. It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength. He looked the same but could not walk at all.

Now we hike and do hills and push each other on. We went to the movies at the

mall yesterday, ate burgers for dinner, went to the grocery store together. None of that possible in CancerLand days.

That summer chemo changed so many things. No movies, no malls, no grocery stores. Even the tiniest bit of air-conditioned air caused him excruciating pain as his throat closed and froze. He couldn’t even look in the refrigerator. I had to learn to cook. That turned out to be one of the gifts of Cancer Land—I became a cook.


But the summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a trip to Tanglewood tonight. So many things changed. We grew from them and with them. It isn’t everyone’s path. Cancer sometimes ends relationships. It can be too much. There is no blame for that. It can just be too dam hard sometimes.

But what I feel today is gratitude and grace, and I’m cherishing every day we get.

Sunday, June 4, 2017

So this is Nina Riggs--poet, writer, Mom, wife, friend, dog lover, cancer patient. And gone.

Left for the rest of us is her new and amazing memoir, "The Bright Hour--A Memoir of Living and Dying". This fine and beautiful book is about living with--and dying from--cancer.

Nina Riggs was a poet, and that facility with language and images, and her ability to see through the world ensures power on every single page.

Riggs writes with great humor--much needed here in CancerLand, and her book is about living with cancer--raising kids, adopting a dog, being in a marriage even while getting ready to die.

With this book Riggs raises the bar on how to die, and how to see the world every single day that you are alive. This will be the most uplifting book you read this year.




Tuesday, May 16, 2017

"Kindness is more important than wisdom, and understanding that is the beginning of wisdom."


                                                                                 --Theodore Isaac Rubin
                       

Tuesday, May 9, 2017

The Mary Month of May

I grew up in a Protestant family. My brothers and I went to Sunday school, got confirmed, and later married in the same Methodist Church on Pittsburgh’s Northside. Overall, it was a good experience. But I always envied Catholic girls, especially in May.


Our working class neighborhood was a mixture of Protestant and Catholic families. Kids were divided by schools: Spring Hill Public or Saint Ambrose Catholic. But it was a close neighborhood and we all played together after school. 

We were in and out of each others houses often, and one mother could stand in for another when it came to discipline or first aid. The differences were few but the Catholic girls seemed to have something special.

It was in second grade that my feelings of envy emerged. My Catholic friends were having their First Holy Communion. My friends got to wear poofy white dresses and headbands with flowers and little veils. They were given medals with pictures of saints, rosaries and most intriguing, scapulars.

A scapular is two small patches of cloth with holy pictures on them, connected by a loop of string.  My girl friends told me that it protected them from evil and all manner of bad things, and it was a sin, they told me, to take it off.  The idea of a passionate commitment to something, even a string with holy pictures, was very appealing.

Catholicism offered my friends other comforts. As a kid I would have liked a patron saint or a guardian angel, but the Methodist church didn’t offer any of those. Instead we were counseled, in an ecumenically respectful way, that all that stuff was Catholic and kind of magical. Now, this was at the same age that I was fascinated with writing in code, creating invisible ink, becoming a blood sister, playing with the Ouija board and making up secret societies. I was made myth and magic out of anything I could get my hands and mind around.

The best thing, though, that Catholic girls got was Mary. She was presented as motherhood and sweetness, but Catholic girls got a very clear message that there was a woman in heaven, that somebody understood the female side of things.

For Protestant girls, Mary shows up once a year-- at Christmas --to give birth. She might get dragged out again on Good Friday—but only in the background. No role model, no intercessor, no friend. My Catholic pals had statues of Mary. Some had the plastic glow-in-the-dark kind, and the older girls had painted plaster Marys, dressed in blue robes with big doe eyes like my Barbie. And Mary was always standing on a snake. I certainly did not understand the symbolism, but I knew at ten that this 12 inch woman had some power you could not buy for Barbie. 

Best of all, my friends had May altars. A May altar was basically a table with an old lace tablecloth thrown over it. They put their Mary statues on it with flowers and candles that they were allowed to light when they said their prayers.  It still strikes me how feminine those altars were. The Catholic girls had total permission to identify with the feminine in spiritual matters. But no one gave little Protestant girls such romantic, mysterious things to do or own.

This carried over into all of a Catholic girl’s life. Mary got prayers, devotions, pilgrimages and even architectural consideration: there is a Marian shrine in every Catholic Church. Talk about having a room of one’s own. Mary’s presence meant that the Catholic Church included at least one woman at a high level. In her assumption into heaven, Mary had broken Christianity’s glass ceiling.

We pretty much get the shape of our beliefs early on, and what Catholic girls got was a She and a Her, someone like them, to pray to. And they got all those accessories: medals, scapulars, rosaries, ruffled altar skirts and little white prayer books. Protestant girls got black leatherette New Testaments, Jesus stories, but nothing that said, “We’re glad you’re a girl.” 

Of course, later, Catholic girls ran into, the birth control problem and the brick wall that said, “You can’t be a priest”. But what I saw my Catholic friends get was faith in their girlhood and an image of feminine power. That’s not such a bad way to start out.

Thursday, April 13, 2017

The Easter Brothers

 I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny.  In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the
handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”.  As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first. 

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”. 

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope.  It was not a hope of miraculous recovery for  either brother,  or necessarily for a reunion in the “Great Beyond”, but  hope for  my  own  “arose” from the heartache of losing my  brothers,  my playmates,  co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries.  Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed. 

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk. 

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through our layers of loss and gain.

Thursday, April 6, 2017

The Other Side of Impossible

This week I had the opportunity to read a new and very inspiring book that will be of interest to folks like us in CancerLand.

“The Other Side of Impossible” by Susannah Meadows—is (the subtitle) about: “Ordinary people who faced daunting medical challenges and refused to give up.”

The seven primary stories in her memoir/manual/guide are about individuals and families confronted with truly daunting medical challenges—confusing diagnosis, nearly impossible treatments, horrific journeys thru complicated medical mazes. 

Here in CancerLand—for the most part—we deal with more or less clear cut diagnoses: colon cancer, breast cancer, lymphoma etc. But still daunting. And we especially understand the grief, confusion and the head banging about whether to use complementary medicine, New Age treatments or good old chemo and radiation—or most likely a self-created combo of the above and more.

Here are stories of parents, partners, individuals and friends. Choices, mysteries, decisions and prayers.

If you are trying something that makes your doctors eyes roll, or if you have chosen a doctor that makes your friends eyes roll—or if you want to borrow some courage and fortitude and faith—check out Meadows book.

“The Other Side of Impossible” will be in stores on May 2nd and you can place an order now at Amazon.com

Monday, March 20, 2017

Writing With, Through and About Cancer

If you are in the Albany, New York or Greater Capital Region area--please join me for a Writing Workshop at The ACS Hope Club.

The Hope Club in Latham, New York is a service center for cancer patients, survivors, caregivers, family members and friends. It's a place to get info and coaching, find support groups, take classes or just hang out with folks who deeply understand your cancer journey.

I'll be presenting a Writing Workshop called:

Writing With, Through and About Cancer
Monday April 3rd
6 to 7:30 pm
Dinner is included.
class and dinner are free…but you must register.

The class is open to everyone--writers, non-writers, new writers and (I secretly want to writer)ers. :)



We'll make it easy to write, and we'll laugh, play and put words on paper for your cancer story--as patient, survivor, caregiver, family member or friend.

To Register please call 518-220-6060

I hope you can join us at The American Cancer Society Hope Club.





Diane Cameron--

Wednesday, March 8, 2017

Triangles & Caregivers

It’s always a dance, this caregiving thing.

This week three words jump-started some crucial role shifting for me: Karpman Drama Triangle. I learned about that psychosocial theory, developed by Stephen Karpman, years ago in my first Psychology 101 class. Then it popped up again in a Family Systems Theory class, and then, much later, in a class called “Literature and the Novel”. 

It’s a valuable tool for assessing most relationships: families, family stories (hence, novels) and even workplaces.

It is absolutely a safe (though maybe uncomfortable) way of looking at your self in a caregiving situation.

Karpman describes his cycle-- or triangle –as a way to understand where individuals find
their comfort in a group and how we move from rescuer or persecutor to victim—and shows how easy it is to cycle to victim, victim, victim.

Take a look at the triangle diagram here and see if the words help you find your favorite spot. (You may need to think about ways that people (family) have described you. Are you the bossy one, always in control (you wish) or sure you are right? 

Are you the one who claims to have no ego, just trying to help, make life easier, “Oh let me do it”, but secretly you enjoy some pride and moral superiority?

Or maybe no one understands you, always blames you, “Its not my fault.” It just doesn’t make sense, does it,  that you are always the victim?

But Karpman’s theory is that these three “characters” (siblings/coworkers/friends) need each other to keep the dysfunction in stasis. And the only way to grow as an individual or change your life is to step out of your corner—regardless of what the others do.

That can feel really scary and chaotic—but that way growth lies.

Karpman’s characters: Victim, Rescuer and Persecutor show up in hospitals, waiting rooms, nursing homes and family care meetings. It takes a lot of staying conscious and listening to your own inner refrain, to “out” yourself. And note: the only way out is to say, (to yourself) “I’m playing Victim again” or “I need to stop being a Rescuer.” You get no points, no personal growth and no benefit from pointing out that someone else is a Persecutor or a Victim. 

I know, I know...that does seem to take away some of the self-righteous fun. But you want to grow. I know you want to grow

Cancer care is loaded with victims, rescuers and persecutors all vying for top billing: Who can be the biggest victim. We even say “cancer victim”. (Stop saying that.) It’s so easy to say, “Take care of yourself first”--but in real life, and real caregiving, theory is honored in the breach. 

Maybe the Karpman Triangle should be taught to caregiving teams. Maybe we can give out little triangle pins as a reminder. 

Maybe I need to get a little triangle tattooed on my right hand. 

Wednesday, February 22, 2017

There is No Good Card for This

You have been there--on the giving end or the receiving end…

It's either "What should I say..?"

OR

"I can't believe they said that!"


Kelsey Crowe wrote a book to capture those moments and to help the rest of us not put foot in mouth…
no platitudes, alternatives to lasagna, and ways to be supportive with out reaching for bizarre mixed metaphors and saccharine sayings.

Here's the link t the interview on NPR last week. When you hear this you'll want her book, and you'll want to start making your own honest greeting cards.

Take a listen:
http://www.npr.org/2017/02/13/514164179/there-is-no-good-card-for-this-what-to-say-when-condolences-isnt-enough

The book is called: There's No Good Card for This.

Saturday, February 11, 2017

Rails to Recovery

One of the big and unexpected expenses that comes with cancer is transportation. Whether is is the extra gas money for driving to chemo three times a week, or needing to take taxis because the bus just won't work when you feel so ill, or having to travel to a different city for treatment or consultation. That money adds up. 

And folks who are offering you lasagna or babysitting typically don't offer  train fare.

But I've just learned that Amtrak does!

Amtrak's Empire Service partners with Voices of Hope (a collaboration of cancer service agencies) offers discounted rates and free companion fares for cancer patients and caregivers traveling within New York State. This means you can use this fare to get downstate to Mount Sinai or Sloan Kettering in NYC, or come Upstate to St. Peter's or Albany Medical Center or NYOH. 

You can get the specific details at Rails to Recovery on the main Amtrak site or click on the link below for Voices of the Capital Region. The staff navigator at your cancer treatment center should also have this info--and if not please share so that otters can learn too.

Here's the link:
http://www.voicesofthecapitalregion.org/rails-to-recovery

Thursday, February 2, 2017

But I Was Only Trying to Be Helpful

Oh, you know this feeling: You were only trying to be helpful, or to be kind, or to brighten her day. But it turns out that you were unkind, insensitive or even hurtful. How does that happen?

When talking to someone who has cancer, or the caregiver of someone with cancer, it’s not always easy to say the right thing. They have cancer but you can all too easily have foot-in-mouth disease.

The short answer to this dilemma is: Listen more. Talk less. Or, ask before you talk. That one translates as, “May I ask about how you are doing?” or “May I ask about your treatment?” or even, “Do you want to talk about your health—or would you rather hear the gossip from work?”

There is no perfect advice nor a perfect thing to say when you hear that someone has
cancer. If you have met one person with cancer, you met one person with cancer. Some folks will want to talk and talk about details and medical info. Some folks want to talk only to their doc, or partner, or support group. And no, you don’t get to nominate yourself to be part of the support group: it’s by invitation only.

But I know, I know, I know how deeply tempting it is, especially if you have cancer or you are a caregiver. And you often do have great advice and perspective. You just don’t get to slosh it all over someone with out asking permission. I stumble into this all the time. I mean, here I am blogging about couples and cancer: I read the research, I interview experts, I know some stuff-- so I’m always tempted. But I try to keep it here on the blog—mostly.

Also be careful with optimism. It’s great that your personality tips that way but saying, “Everything’s going to be great” may not be true, and now your friend knows they can’t confide in you or they know that, as Jack Nicolson said in the movie A Few Good Men, “You can’t handle the truth.”

Let the person with cancer lead the conversation. Offer news and updates on your life and the things that your common field of interest suggests. Take your lead on their language about cancer as well: If they are battling cancer or in a war with cancer you can use military lingo, but if they are not using militaristic metaphors, lay off—even if that is what you got you through your chemo. 

All of this requires powerful listening skills, and caring. So have a little talk with yourself before you talk to your friend.