Category Archives: writing

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Ultra Sounds Monday, December 26, 2011

I decided to use the holiday season as an excuse to post one of my own poems. I wrote this poem as a reflection on a “normal” life when so much of my life is far from normal. Enjoy.

Get excited about next Monday because at long last we will be hearing from the hot dog lady. Tell your friends!

Sam

 

The Everyday joy of folding laundry

by Samantha Albert

Switch of the wrists,

Shake out the t-shirt

Fold

Slightly wrinkled,

Not exactly a work of art

Symmetry has never been my strong point

I’ve never been able to cut a potato into evenly sized pieces

My laundry has cleanliness on its side,

A very satisfying feature

To see stacks of clean laundry

Even if it all looks slightly rumpled

Laundry is something you can accomplish,

You can control

You can finish

(at least for a day)

When life begins to feel unpredictable,

On shaky ground

When the future is not going to be the future that you had planned

And you don’t know yet what it will hold

Laundry can be so comforting

So tangible

So normal

Pass me another t-shirt.

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Writing blog

A writer from the U.K.  named Sue Healy found her way to our blog (welcome Sue!). Sue has a great blog with tips on the craft of writing. I read through a few of the entries and found them most helpful and encouraging (and will try to limit my adjective and adverb use – thank you Sue).

If you are a writer, consider taking a look:

http://suehealy.org/author/suehealy/

Sam

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Maintaining identity through illness

I recently came across a study about art therapy for cancer patients. It remarked on the importance of meaningful activity, such as the creation of art, as a way of maintaining one’s identity while dealing with a serious illness such as cancer.

I find this very interesting because it certainly has reflected my experience. My  life is consumed by my illness and treatment, so to have things to do that are meaningful help me feel that I am not my illness.  These kinds of activities give me something to think about, talk about and focus on that help remind me of who I really am and who I am becoming, independent of my illness.

My involvement with the Taoist Tai Chi Society of Canada has played that kind of a role. Aside from the physical benefits,  which have been enormous, its charitable and volunteer nature has taken my focus out towards helping other people, a deeply meaningful activity. It has also helped me to feel strong and able to affect change when having an illness can give you the perception of being weak and impotent.

My writing has also served that purpose. When people ask what I am doing, I can say that I am writing rather than saying I am a sick person.  My waiting room hours are now filled with imaginings, shaping and creating which provide a welcome reprieve from worrying, boredom and suffering.  I am an active player in my own story. Writing is an act of engagement with my life that makes everything seem more interesting and full of potential.

Reading this article helps me connect to my own experience and understand why it’s not enough for me to just be a patient ( although there were times when that was all I could be) , but how important it is for me to find meaningful activity to stay connected to my soul.

Many hospitals are now providing writing, art and music therapy programs for their patients. These kinds of programs can do more than just help people process their experience, it can remind them that they are living, breathing people with purpose beyond just surviving the next round of chemo.

If you have been ill, what are your experiences with maintaining the “you” in you while being sick?

Sam

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Sausages and sick people

Today I met marvelous Marianne, the queen of the street carts in front of Mount Sinai hospital in Toronto. Run, don’t walk, to get one of her (preservative free) wild boar sausages with sauted onions, cranberry relish and horseradish. Divine.

When I first conceived of this project I focused primarily on the experience of patients. When my husband told me of a CBC story about the hot dog vendor outside of Princess Margaret, it was as if a light went on. This book could be something much bigger and more profound than just the patients’ point of view. What would a hot dog vendor reveal about her experience in seeing cancer patients day after day? How rich the book would become if we widened the circle to include the many people who have a connection to cancer. Thus Marianne, without even knowing it, has played an important role in this project.

It took me six months to actually look up the CBC show and that is how I discovered Marianne – not only providing amazing street food (within less than amazing by-law conditions), but building community one sausage at a time. I can’t believe I walked by that stand for the last 11 years.

Take a look at her website http://www.peacetogetherforever.com/online/ and see all of the cool things she is doing.

In speaking to her today, she talked about seeing cancer patients when they are sick and then later how wonderful it is when they come back to show off their recovery to her. She told me she has many stories from her time as a food vendor. I think her problem in submitting something for the book will be sifting through the multitude of stories gathered over the last 17 years to find the one she wants to tell. We can’t wait.

The story grows!

Sam

ps – you really should go and eat at Marianne’s cart. mmmmm

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The ripple effect

As I’ve mentioned before, we want to hear not just from cancer patients, but from other people who connect to the cancer experience. I have talked about caregivers, volunteers, doctors and nurses, but many more people have associations with cancer.

When I was undergoing my stem cell transplant, there would be a series of people who would come in to clean the room and bring me my meals (such as they were). I often wondered what it would be like to go from room to room seeing all sorts of quickly thinning and pale people attached to IV machines and losing their hair. How did they look upon the anxiety and sometimes suffering that was surely upon most of our faces?

Some that came were very quiet and did their work. Others gave me smiles and words of encouragement which touched me very much more than the dutiful clergy that came by to bring me good cheer. What did they think when they went home at night? Did they feel themselves lucky? Did they worry about us? What kind of private griefs of their own occupied their minds and made our sufferings seem insignificant? Or were they just thinking about what to make for dinner or the latest hockey game? I would like to know?

There are many others in the complex web of support that underlies the health care system who interact with patients, but are not specifically health care providers. Aside from maintenance workers and orderlies, there is the reception staff, food service staff, and morgue staff. There are the blood lab technicians, diagnostic testing technicians, pharmacy staff, and gift shop staff.

We want to hear many voices in this book and our challenge is how to reach these groups. Many of these jobs do not have online support, communication or educational networks. If you have ideas, please let us know!

Sam

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Am I a survivor or just lucky?

I suppose by the official terminology I could be called a “survivor” although there is something that irks me about that term. The fact that I am still alive is a combination of luck and good medical care. Perhaps I’ve helped things a long a bit through some lifestyle choices. To be honest, however, had I lived 20 years ago, before the current treatments existed, all of the lifestyle choices in the world would not have changed the course of this disease.

If I am a survivor, what does that make the people who didn’t make it?Were they losers? The ones that got voted off the island? The ones who didn’t take their wheatgrass? Were they too passive? Did they bring on their own death? There is a smugness to the term survivors that implies a character trait rather than just good luck. How about new terms like “I got lucky” or “ I didn’t die”. If we need a noun the word “escapee” fits my feelings better than survivor.

Your thoughts on this?

Sam

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The book moves forward

The submissions are beginning to roll in! It is thrilling to see the work that people are doing in response to the intense emotional roller-coaster ride of having cancer or of being connected to someone with cancer. Using our creativity is a way to engage in and process our experience with new eyes.  Our hope is that the act of creating will prove to be, in and of itself, of therapeutic benefit, regardless of the finished product.

If you are new to the blog and are considering what you might create for your submissions, take the time to troll through earlier blog entries and some of the links along the side for inspiration.

On another note, our team has grown! I would like to introduce Daniel Hershfield who brings the wonderful combination of  comic genius and strong writing skills to this project and is an overall very nice guy. Here is his introduction:

 

Dan Hershfield has a Master of Fine Arts degree in Creative Writing and
Theatre from UBC, where he was also the recipient of the CBC Jim Burt Prize for Film.  He is the author of several plays, including Courting, which was published by Anvil Press and has been produced across Canada and studied at several colleges.  He has also written for CBC Radio’s Definitely Not the Opera and Content Factory, as well as for the Gemini-nominated Road Hockey Rumble and The Second City Network.

 

Welcome to the team Daniel!

 

Sam

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Other blogs

Since I’m new to the world of blogs, I’ve been checking out what’s out there. Of course there are a million blogs about cancer on a whole host of topics. Here’s a gem I stumbled upon that ties into this project.

Cristina Trapanuscott’s blog, “When one line drops from the sky” includes a poem-a-day challenge she set for herself. I love her poetry. No matter what day I dropped into I found very real, readable poems, mostly about her cancer experience.

http://cristinatrapaniscott.com/2010/01/23/the-poetry-challenge/ is the link to day 1 of the challenge

Enjoy!

Sam

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Looking pregnant

As I have mentioned many times now I have a large liver that makes me look about seven months pregnant. While not always convenient, this belly has been fodder for great stories (and the occasional seat on a bus). I wrote about what it was like to be mistaken for a pregnant woman in the Globe and Mail this past June.   http://m.theglobeandmail.com/life/health/health-facts-and-arguments/im-not-pregnant-and-im-tired-of-explaining-why-i-look-it/article2060559/?service=mobile

It was the publishing of this article that gave me the confidence to move forward with this book project. While the article was ostensibly about my big belly, it was really a story to illustrate the importance of empathy. Many people could connect to the story and found something useful in it for themselves.  The feedback I received, truly reflected back to me the power of “the story” as a tool. If this one story could make such an impression, what if there was a whole book?   I know that there are many stories out there and providing a platform for this form of expression seems an exciting and worthwhile endeavor.

I know I have been short on details about the submission process, but I hope to be providing them soon. In the meantime if you have a story, essay, poem or other creative work related to the cancer experience, send it along and perhaps we can test drive it on the blog

Sam

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Cancer and humour

I have found that a humorous perspective on my situation has often been helpful. I stumbled across a few books I would highly recommend that provide a particularly humorous look at the cancer story. They are all excellent reads.

The first one is titled “Cancer Made me a Shallower Perons: A Memoir in Comics” by Miriam Engleberg copyright 2006.  Engleberg is bitingly funny with her wise comics that reflect the reality of the cancer experience. The highlight for me was a cartoon about when one can be called a cancer survivor (is it as soon as you are diagnosed? What if there is a metastasis? The final panel is of a woman on her deathbed saying something like  ”I’m still breathing, I’m a cancer survivor!”)

Meredith Norton’s “Lopsided. How Having Breast Cancer Can Be Really Distracting.” ( copyright 2008) had me laughing out loud with her irreverent take on the breast cancer experience. She managed to put a humorous spin on each event along the way of her journey that offered a richer glimpse into her true feelings about the experience than a straight testimonial could ever provide.

“Cancer Vixen” by Marisa Acocella Marchetto (copyright 2006) is another graphic novel describing this fashionista’s dive into the cancer world. Her New York world is certainly miles away from my own, but this only added to the humour of her situation.

My hope is that much of what we receive for the book will be humorous. There might be funny events that happened, but more importantly, my hope is that people can find the humorous side of their experiences.  In doing so, they may provide to others much greater comfort than sharing raw food recipes could ever do.

Here’s a draft of a poem I’m working on about my tendency to play scrabble on my phone while I am in in the various waiting rooms that I visit.

Playing Scrabble in the Waiting Room

9:00 show up for bloodwork

Only 40 people ahead of me.

It’s a good day as the blood lab herds people through like sheep

A-T-T-E-N-D

The computer scrabble game on my phone,

my saviour on waiting room days,

does not know that I am referring to the French word for “wait”,

but proceeds happily with the assumption that I am paying close attention.

I am in fact attending to the numbers counting up by fours or fives,

waiting for the magic one to be called.

The first wait is not too long.

A-N-T-I-C-I-P-A-T-I-O-N

I’ve put away my scrabble and am primed to move the moment they call my number.

I’m greeted like an old friend in the blood lab.

S-H-A-R-P

After the needle I’m off to the doctor’s clinic.

The waiting room is packed,

the doctor is running 1 ½ hours behind

R-E-S-I-G-N-A-T-I-O-N

I love my doctor and it is her generosity

That leads to the long delay.

I practice patience and pull out my lunch.

F-O-R-B-E-A-R-A-N-C-E

After two hours of waiting I try to find out when I might be called in.

T-A-C-T

I’m next, hurrah.

 to go to another room to wait some more.

I want to lie down on the bed and sleep

T-O-R-P-O-R

I’m revived by the entry of the doctor

and her whirlwind of energy.

A brief encounter, and then I’m off to the chemo unit

I arrive only to find that my medication is not ready.

V-E-X-A-T-I-O-N

I sink lower in the chair

T-E-D-I-U-M

W-E-A-R-I-N-E-S-S

I’m still waiting

E-X-A-S-P-E-R-A-T-I-O-N

I’m close to tears when I am finally called in

for my five minute treatment

3:00 pm

My full time job as a patient is over for the day.

F-R-E-E-D-O-M