The long-timers vs. the newbies

As I mentioned, I am a freqent visitor at the Princess Margaret chemo unit. I wrote a poem the other day about how merry it sounds when more than one IV machine plays their little tunes of alert at the same time. While my husband liked the poem, he, quite rightly, pointed out that someone who is dealing with an acute situation, might not be able to appreciate or find any “merriness” in the chemo unit.

This comment certainly caused me to reflect. My situation began as acute, but has slowly shifted to chronic, giving me, in some ways, a more relaxed perspective on my whole experience and some perspective on that acute time. I think the group of people “living” with cancer rather than simply dying or recovering from cancer is growing and presents a whole different set of issues than someone who is dealing with an immediate life or death situation.

Many people however are in that first terrified/angry/depressed/worried place of having recently received a diagnosis or of dealing with a very immediate situation of  acute treatment. I remember those days well.

I hope for the book to bring together perspectives from many stages of the cancer experience. It might be helpful for someone dealing with an acute situation to hear from people on the other side of the giant mountain they have to climb. For long-timers like me, it is important to put myself back in that early time, so that I can retain my empathy and remember some of the lessons learned from that situation.

There is room in the book for those people who are just plain angry and scared, for those who cope by making fun of the situation and for those who have a more long-term perspectiv, just to name a few examples. There is no one right away to think about your cancer experience and the more perspectives we can present, the more complete the story will be.

Sam

Being a parent with cancer

I think that the subject of being ill when you have small children is filled with such complex feelings of anxiety, guilt, fear, and joy, just to name a few. I was diagnosed when my son was less than a year old.  For some time I was sure I would not get to see him grow up. He is now 12 and has been an important part of my story all of this time.

When I was much sicker, he was often wonderfully oblivious, just being a kid. At times this was hard, like when he just couldn’t understand why I had no energy. At times it was just lovely, like when I came home with my hair all cut off in preparation for the chemo and he did not even notice.

As he gets older, his sense of empathy and humour as it relates to my illness is a delight and shows me what a wonderful man he is becoming. I have written several poems to and about him as I have processed many of the feelings I have experienced.

I’ve tried to find other writings about this topic, but so far without luck. There are many guides about how to talk to your children, but I have not found much in the way of  cancer patients or their families processing what it is like to go through that experience. If you know of any works that address this topic, why not pass them along?

Here’s one poem hearing it from a child’s point of view. I found this  poem by a kindergarten boy, who tells about losing his grandma to cancer at http://www.cancersucks.com/about/brocks-poem/

Sam

Celebrating the caregiver

My husband has been an enormous support for me all through our marriage and particularly through my illness experience. I don’t think I tell him this enough. It is easy to become very focused on oneself when experiencing illness. At the risk of making this blog too much about my own writing, I decided to put this poem out there. It is  a reflection on what the caregiver role means and how little it is noticed. I hope that other works will offer this perspective as well. I would like to submit this for the book.

An Ode to a Caregiver

In the world of illness

the patient is the star,

with agents and  handlers,

groupies and entourages.

“Do you need some chicken soup? “

“You are so brave, so inspirational!”

“Tell me your every need, your every wish and I will fill it .”

The patient is the celebrity, allowed the luxury of focusing on themselves.

Encouraged to focus on themselves

But if the patient is the star

what is the caregiver?

Chief cook and bottle washer.

Launderer of dirty linen.

The one who cleans up the vomit.

The one who cheerfully brings endless cups of tea.

The one who carries the weight of financial worries.

The one who explains why mommy has lost all of her hair.

The one who responds to grumpy moods with a sympathetic “are you having a hard day? “

The one who worries sick about losing the love of their life.

The one who, no matter how much they love the patient, is always a bit of an outsider to the illness.

Where are their groupies?

Where are the reporters?

Where is the fanfare?

Leave the patient in anonymity for a while.

Cast your spotlights

on the quiet one in the background.

Celebrate him

Acknowledge her courage

Walk in his shoes a while

June, 2011

Sam

Cancer, the top of the heap

A friend of mine, Cathy, added a comment on an earlier post about a certain universality of  experience of illness, be it cancer or other health issues.  (You should read the comment directly as it was much more eloquent than the way in which I have expressed it.)  https://thecancerproject.wordpress.com/2011/08/07/the-stories-within-the-story-of-cancer/#comments

This comment got me thinking about a few things. One thought was that in the world of illness there is a certain hierarchy of disease with the big “C” having the dubious distinction of being at the top of the heap. I have had the experience of having people stop in the middle of telling me about their health issues to say things like “Oh, but I shouldn’t complain when YOU are dealing with what you have to deal with” .  It seems to me that any health issue can take a life on a wild trajectory and involve extreme stress, anxiety and uncertainty. There is no better or worse illness to be stuck with.

Of course, I am also stating the obvious when I say that there is not just one cancer story. Rather it is an illness that is so varied and the people who are faced with it are of infinite variety.

The best we can do is share our stories and hope that they resonate for all kinds of people, which is, of course, the intention of the book.  I would love to start hearing some of your stories!

Sam

Princess Margaret Vignettes

While this book may not end up being limited to the Princess Margaret Hospital Community, I do hope to celebrate this wonderful hospital and the amazing care I have had there. I thought I would start a series of blogs called Princess Margaret Vignettes.  They may just be little bites of stories either about a memorable individual at the hospital or about an event that happened there. I hope that many people will contribute to these.

Here’s the first one. Forgive me if it’s a bit on the schmaltzy side, but every word is true.

Caroline works at the PMH outpatient pharmacy and was responsible for making sure that a specific medication was ready for me. She would go through Herculean efforts every month to co-ordinate bloodwork, orders from the doctor and my schedule to ensure I had the drugs when I needed them – all with a smile.  The first Christmas after I began on the drug, I went to drop off a small present. I was prepared to drop and run, but I had to wait until she went to retrieve my exquisite hand-made Christmas card. I was in awe  – I should be giving to her, not the other way around.

Every Christmas after that I received one of these gems. Then I was taken off this medication and would no longer be using the PMH pharmacy. I went to say goodbye to Caroline and thank her for everything.

That following Christmas, I received a letter from an unknown address. I opened it to find one of Caroline’s cards. I felt like I was part of a very special club with a lifetime membership. It was a true gift indeed.

Sam

Extracting the story

I stumbled upon a website that details storytelling exercises developed by storyteller/author Heather Forest

http://www.storyarts.org/lessonplans/lessonideas/index.html#puzzle

Here is one of the exercises from that page:

Puzzle Tale: Putting the Pieces Together
Copy a folktale from a printed anthology and cut it up into sections or scenes. Paste each section on a separate page. Give out the sheets to students who each prepare to retell their small piece of the whole story. Assemble the story by having each student retell his or her part in the plot’s sequence. Have students keep the flow going as the story is told so that the performance moves along as though one person were telling it. Do a second round by giving students different sections to retell. Notice how differently students retell the same sections!

Aside from sounding like fun, this exercise seems relevant to the book. For our book project  I am suggesting that individuals take a little section of their cancer story and expand it to become its own story, expressed in a creative manner. It would be fascinating to write out one’s own story and then do this exercise with friends and family to get their versions of the different parts.

Here’s a possible way to develop an entry for the book, whether you are patient, family member, health care provider or some other connection to someone with cancer.  Start by writing out all of the details of your  illness experience in point form, from diagnosis to present. Make the list as detailed as possible, including characters that were introduced, particular events that happened, and feelings at different points in the process.

Look over the list and find a point that jumps out at you. Was there a particular moment/character/event that inspired strong feelings in you? Extract that item out of the story and start digging. What would be the best way to convey the feelings that were evoked? What would be be the best medium for conveying those feelings?  What can you craft from putting the magnifying glass on that particular moment/event/character?

A little piece of my story is that every Tuesday I walk through Chinatown in Toronto to get to Princess Margaret Hospital for my treatment. This weekly walk led to the following poem:

Tuesdays in Chinatown in July

Every Tuesday

the journey through Chinatown

to the chemo unit at Princess Margaret Hospital.

The stench of garbage day, heightened in July,

threatens to overwhelm me

on those days when my stomach roils

with the effect of the drugs.

I pass front yards that are seeded with concrete

and porches of dilapidated student housing

that sprout old couches and beer bottles.

Tennis shoes drape from power lines,

the decorations provided by

drug dealers marking their territories like dogs.

I pass through all of this urban grit

with a mixture of fascination and revulsion.

Then I stumble upon them

and catch my breath with the deep green lushness

of the postage stamp gardens.

Bok choi, tat soi, guy lan,

peppers. eggplant and kohl rabi.

Vegetables that I can’t identify,

but which make me feel as if I am in a foreign, tropical  land.

These plants, growing so fervently from among the grit,

growing up, down, and out

to take advantage of every inch of space,

make me feel alive and supremely optimistic

as I leave Chinatown behind

and climb the four flights of stairs to my inevitable appointment.

 

July 2011

 

 

Sam

Why Wheatgrass free?

I was asked to explain the “wheatgrass free” in the title of this blog.

I have to admit that this part of the title was a late night bit of whimsy. When I got sick, I was approached on multiple fronts to try this or try that ____________ (You can fill in the blank with any of the following – supplement, herbal tea, aromatherapy, healing energy therapy, special diet, etc.) I became somewhat cynical about the prescriptive nature of what others thought would be good for me and cynical of what appeared to me to be a thriving cancer industry. To me “wheatgrass free” is a metaphor for the fact that the proposed cancer project will offer no prescriptions, no “you must do this for yourself or it’s your own fault if you’re sick”, no expectations, no guilt.  You don’t have to have pure thoughts and pure actions in order to get better.  I don’t know about you, but when I hear the words “wheatgrass free”, I feel such a sense of relief and lightness.

Sam