Cancer Poetry Project 2

 

I received my copy of The Cancer Poetry Project 2 this week! I finally managed to tear myself away from rereading my own poem in print to survey the book as a whole.

Like the first book, it is a diverse collection of poetry by cancer patients and their families and caregivers. For such a dark, deathly subject, the book is alive and vibrant. Karin Miller’s keen eye brought together a rich collection of poetry that speaks to me the patient, but also to me, the human. It is poetry that will connect you to the writers.

You can order the book through Karin’s website cancerpoetryproject.com.

 

Sam

Loss

Viola Moriarty, 1958 – 2013

 

 

 

Live your life my oncologist says

 

Nicole P, 2012

 

 

 

Tuesdays at the chemo unit, April 9, 2013

 

In Toronto’s Chinatown spring is caged to prevent it from hurting anyone.  But spring is spring, caged or not. The sun is shining, Marianne’s hot dog cart is open again and the nurses are even friendlier than usual.

I’ve had cause again, recently, to reflect on the time when I was first diagnosed with this weird and wonderful disease. My doctor at the time, sent me down to the Boston Medical Center for a second opinion. While I was there, the director of the program let me look at a photo album that had been put together by another patient, Isabel. Isabel, like me, had been quite young when she was diagnosed.

This photo album tracked Isabel’s path through the dreaded stem cell transplant that I was scheduled to undertake. The pictures of her before the transplant showed a beautiful young woman with long, rich hair and a tired and pale face. She had been misdiagnosed for ten years before she was diagnosed with amyloidosis.

The pictures of her during the transplant showed her looking thin, with eyes too large in the head that was missing its beautiful hair. I stared and stared at those pictures wondering how she was feeling, wondering if I could do what she was doing. Was she braver than I was? Was she stronger than I was? Did she have some special superpower that allowed her get through this or could I do it too?

And then, oh glory, were the ‘after’ pictures: pictures of her hiking in the mountains; pictures of her with her new baby; pictures of her looking strong and healthy.

I communicated with Isabel and asked her numerous questions about the daunting treatment ahead of me. For me, it was as if she had left a trail of bread crumbs in the forest for me to follow. The comfort that spread over me in being able to talk to her was profound.

Recently I’ve had the chance to be on the other side. I’ve discovered I have a liver sister; a wonderful woman who also has amyloidosis with liver involvement (although her liver lacks the magnificence of my own, poor thing).  It hit me recently that she has been following my bread crumb trail as she prepares for her own stem cell transplant.  And I’m sure that down the road, knowing her, she will do the same for those that follow.

It’s not exactly a support group, which, as I’ve said, is not really my thing. It’s more just reaching forward and backward to connect with those who share the same worrisome experiences. It’s more like a support chain.

I like that idea of being part of a support chain. If I have to be sick with this strange disease, I’m glad I get to be a link.

 

Sam

 

 

Tuesdays at the Chemo Unit, Feb 26 and Mar 5, 2013

I took this photo on the way to the hospital today. It seems to me this is a sign we should all be shown at birth.

Or it could say “Warning: Life is deep and messy and sometimes you can’t see the light.”

****

Last week I had my monthly appointment with my doctor. Because I’m reliably stable, I was given to the young and personable Resident to see. It was our first time meeting and he was very restrained as he reviewed the usual questions.

Then came the  moment when he asked me, “Can I examine you now?”

His eagerness made me laugh and I replied, “I know, you’re just dying to feel this liver, aren’t you?”

He laughed casually as I climbed up on the table. Then he started to actually examine the breadth of my liver and I saw a growing gleam in his eye.

“Oh, this really is exciting! I’ve never seen a liver like this before”

So maybe I shouldn’t feel satisfaction in having such a uniquely big liver, but I did feel a sense of accomplishment. If I’m to have a big liver, I want it to be the biggest. We might as well have some ambition in this life.

Sam

Tuesdays at the chemo unit, Feb. 19, 2013

If you ever spend time at a Starbucks you will hear of an infinite variety of drinks ordered to the exact specifications of each customer.

“May I have decaf grande soy sugar free iced caramel macchiato?”

“A tall nonfat unsweetened green tea latte please.”

“I would like to order a venti mocha frappuccino with soy mocha drizzle, matcha powder, protein powder, caramel brûlée topping, strawberries, two bananas, caramel drizzle frappuccino chips and vanilla bean.”

I feel a bit like a Starbucks customer when I get my injection each week. The subcutaneous injection can be quite painful and leave a big bruise if the nurse does not administer it quite right. And what constitutes “quite right” varies from person to person. I imagine each person giving their own specific directions to the nurses.

“The secret is to leave a little air pocket in the needle.”

“Keep the skin  flat and inject quickly.”

“Pinch the leg hard and inject really, really slowly.”

“Can you put the heating pad on the site first to warm it up and then inject the needle at an exact 90 degree angle and whistle Stairway to Heaven to distract me?”

In an earlier era when the medical professionals were more god-like, would we have  dictated our own treatment in the same way that we order coffee or is this behaviour a sign of the times? On  the one hand, the patients feel more empowered now to ask for what they need (and truly, when the nurses do it the ‘right’ way, I experience significantly less pain). On the other hand, do we sometimes just need to let the professionals get on with their job and not pester them with onerous demands to meet our every need (maybe the whistling is a bit out of line)?

I’ve been very proud of my increased ability to advocate for myself since getting sick. At the same time, I’m just one of thousands of patients who want individualized care in a financially stressed system. I realize I must balance my needs against those around … ” Hey, slow down with that needle!”

Sam

Tuesdays at the chemo unit, February 12, 2013

Well life at the chemo unit is uneventful today. I’m in for the long iron infusion today, but it’s going quickly and I have a cozy little cubicle to myself.

Yesterday I had an appointment at another hospital with one of my many specialists. In the bathroom, as I sat down on the toilet, I noticed an interesting sign:

“Attention: Please put paper towel in the waste basket and not on the floor.”

This sign plagued me and I considered its significance. I came to two possible conclusions. Maybe there was a great trend of people putting their paper towel on the floor. They just weren’t sure what to do and now that there is a sign, they have seen the light and always put their paper in the basket. The other option is that there is someone working at the clinic who really likes and believes in the use of signs.

The second conclusion was fortified when I stood up and saw another sign behind the toilet. “Attention: Please flush the toilet with your hand and not your foot in this place.” Hmmm. Most of the patients I saw out in that waiting room could barely lift their feet up stairs much less do the contortions that would be necessary to flush with their feet. How would one even know if toilets were being flushed with feet?

If people really are throwing their paper towels on the floor will the sign change their behaviour? Why do they throw it in the floor? Perhaps instead of writing that sign, the sign writer should spend more time in the bathroom figuring out why people throw paper towel on the floor.

Of course we need signs. I want to know not to enter a one-way street the wrong way or to know if I’ve arrived at Yonge st., but I think signs often reflect the personality of the sign writer more than they reflect an  actual need.

I looked around for more signs. I thought there might be others like, “Attention: please turn on the taps with your hands and not your nose in this place.” or “Attention: Please pee into the toilet and not the garbage can.” You never know.

Sam

Cancer Poetry Project – approaching completion

 

Hi all,

You may remember me talking about the Cancer Poetry Project, an amazing anthology of poems by cancer patients, family members and caregivers. Now the Cancer Poetry Project 2 is approaching completion. I am honoured to have a poem that has been picked for this volume and we expect an April publication.

Karin Miller, the founder and editor has launched a Kickstart campaign to defer the initial costs of publication. Consider supporting this worthwhile project. The first volume of poems is gorgeous and is a wonderful way for patients to connect with the experiences of others who have gone before them.

All the best

 

Sam

Ultra Sounds Monday, February 11, 2013

Hi all,

I am delighted to have received a new poem from Nigel Paul.  Nigel is a “writer and artist with a strong interest in the relationships between media, culture, society and politics.” You may remember Nigel from a poem published here last April, (She’s) Dancing With The Idiots (Tonight).

Even though I have moved the focus away from submissions, if you have something you are hankering to share please do still send it my way. I will be pleased to consider it for posting.

All the best

Sam

The Park Bench

I held her hand tightly,

As she started to tell me,

Is this what park benches are for?

 

 

She said it’s the sinking heart feeling,

That hurts her the most,

And the voice of her mother’s ghost,

Saying ‘You should’ve done better,

You should’ve done more,’

And it’s the memory of that voice,

That breaks our silence,

Creates the ripples,

Causes the creases of laughter,

‘You were the only daughter,’

I sit and tell her,

Is this what park benches are for?

 

 

And we sat and we drifted,

Through memories and smiles,

For many a-passer-by,

And we didn’t even cry,

When it started to rain,

And she didn’t even cry,

When he spoke of the pain,

I just held her hand tightly,

And I listened with care,

Is this what park benches are for?

Because I know I’ll be beck here,

To hold this memory so dear,

As I hold on to her tightly,

Because today is just today.

NDP

6/2/13

Belly Laugh Friday – Feb 1, 2013

As most of you know, my strange illness has given me a belly that makes me look about seven months pregnant. After so many years I have been able to find the humour both in the queries and the responses I give to the queries.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly-laugh Fridays is my chance to share these humorous tidbits with all of you. Enjoy.

Two weeks ago I was at the blood lab having my blood work drawn by a young man I had never seen before. We chatted and, of course, he asked me the question, “When are you due?” I apprised him of my situation and he seemed not at all put off by his mistake.

He giggled and said, “Oh, I was going to congratulate you.”

I laughed as well and said, “Well, you can go ahead and congratulate me on my big liver.”

We were firm friends after that.

Time for contemplation

Jeanette Winterson, in her fantastic memoir Why Be Happy When You Could Be Normal, writes:

“The one good thing about being shut in a coal hole is that it prompts reflection.”

She goes on to meditate on life, happiness and normalcy; results of the reflection that occurred during the many hours she was locked in the coal hole by her mother.

Now I don’t mean to suggest that a hospital waiting room is like a coal hole, but there is a similarity of ‘in-betweenness’ in the situations. In both cases, the job we have is to wait for the next phase, whether it be freedom from the coal hole or the opportunity to go in to an appointment. How we use that time is up to us, of course.

The waiting room does have more distractions than the coal hole, which is why, perhaps, Jeanette’s in-between time was more productive and profound than mine generally is. I have returned to my old ways of reading, writing and checking email in the time before I am called in. I have lost some of my capacity to just sit and ‘be’ during this time.

I would like to reactivate that part of me that knows how to wait. That will be my goal for tomorrow’s visit. Who knows what deep thoughts might appear. I’ll keep you posted.

Sam