Tag Archives: ultra sounds

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Tuesdays at the chemo unit, Feb. 19, 2013

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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.”

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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

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Tuesdays at the chemo unit, February 12, 2013

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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

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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

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Time for contemplation

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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

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Illness as a driver in creativity

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Sometimes I’m asked if I’ve always considered myself a writer. I giggle to myself when I hear that question. Writing used to make my stomach hurt. I did, in fact, do plenty of writing. I wrote essays,  reports, and even a Masters’ thesis. It wasn’t until I got sick, however, that I began to view writing as a friend; as a support; and as an expression of my experience.

When I was in the hospital having my stem-cell transplant  an idea for a children’s story came to me one night and begged to be written.  It was about a pig who was asked to go on a quest. He didn’t really want to go, but the quest asked for him and he had to rise to the occasion. This  story proved to be a useful framework for my experience.  It wasn’t a literary masterpiece, but it was a helpful companion that allowed me to construct my experience in a way that gave me energy and hope.

Sometimes I think that the creative bug bit because I finally had something to write about; I had ‘worthwhile’ subject matter. But then in my travels today, I came across a paper about textile artists with long-term health problems discussing the creative process. I haven’t read the whole thing yet, but one sentence caught my eye in the summary.

…several participants reported that illness did not only inspire artwork through distress and loss, but through sharpening perceptions, heightening emotional sensitivity and confronting them with the deeper issues of life.

These words leapt out at me as they resonated with my experience perfectly. When I was really sick, I started noticing things more; noticing  and then wanting to capture them. I was seeing differently. I was also asking different questions than before, and wrangled with those questions in my writing.

I couldn’t really talk directly about how I was feeling at the time because I believed, unconsciously, that to do so might unravel me completely. But the writing allowed these emotions to express themselves in a back door manner.

It feels as if my illness turned on a switch that was just waiting to be activated. Perhaps all of us have a creative switch waiting to be activated under just the right circumstances. For some it will be illness, trauma or loss for others it will be love or joy or just simply change. I like to think that every one of us has this potential for creativity of some sort that is lying in wait.

What’s your switch?

Sam

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Ultra Sounds: My Creative Exploration of the Illness Experience

Dear readers,

Lately I have been reflecting on how I can best use this space. I started this blog as a result of my own positive experience with creativity as an outlet for dealing with a critical cancer-like illness. Over the last year-and-a-half I have been delighted with the submissions from around the world and the new connections I have made. I have discovered a world rich with people turning the pain and anxiety of their illnesses into beautiful and thoughtful creative pieces.

As I become more focused on my own writing I am  interested in sharing my personal thoughts both about my experience with the illness and my experience with the writing process. So it is time, again, to shift the focus of Ultra Sounds.

I will continue to discuss my experience at the chemo unit and provide the occasional belly laugh. I will also continue to share creative resources that I discover on the Internet. I will be discontinuing Ultra Sounds Mondays, but will still accept and post submissions as I receive them.

What will be new is that I will focus more on sharing with you the insights and questions that are emerging through my writing. Rooting around in my illness experience has raised some interesting issues for me. Additionally, it feels a bit like an anthropological experience to be entering the world of creative writing as a relative newbie. This experience I would also like to share.

So please welcome the new blog:

Ultra Sounds: My Creative Exploration of the Illness Experience

You may wonder where the word ‘cancer’ has gone from the title. My experience with amyloidosis is, indeed, reflective of the experience of some cancer patients. I attend a cancer hospital, I go to the chemo unit, the treatments I receive are similarly used by patients with multiple myeloma, the nearest cancer relative to amyloidosis. I think, however, that the experience of deep illness ranges beyond the world of cancer and I would like to crack open the discussion to include a more diverse expression of illness.

I hope you continue to enjoy this new and improved version. As always, your engagement in the conversation is encouraged.

All the best

Sam

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Belly Laugh Friday, November 23

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.

Sam

 

 

When my son, Zev, was younger he would be my belly ambassador. I remember one interaction in particular:

Sales clerk: Oh, when are you due?

Zev: My mama’s not pregnant.

The expression on the sales clerk’s face indicates that she thinks either Zev is playing an imaginative game or I have not yet explained to him the reality of the major change about to happen in our family. The look she gives Zev is somewhere between amused and condescending.

Sales clerk: Oh, she’s not is she?

Zev: No, she just has a big liver.

The sales clerk looks at me and at my belly sceptically and then back at Zev.

Sales clerk: A big liver?

Zev: Yes, but she’s going to be okay.

The sales clerk looks at me again and this time I nod in agreement with Zev. Her face registers a multitude of emotions – shock, horror, sympathy, curiosity and she appeals to me with her eyes to continue the conversation. But I believe Zev has summed it up nicely. I have a big liver and I’m going to be okay. So I just wish her a good day and toddle off with Zev.

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Belly Laugh Friday, November 9, 2012

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.

Sam

 

 

 

“Are you pregnant?” 7 year old Jason asks, looking wonderingly at my belly.

“No honey. I look pregnant. But I’m not. I just have a big liver.”

Jason considers.

“Polar bears must really love you” he says with a big grin.

“Why is that?”

“Because polar bears really like to eat liver.” He pronounces, his grin overtaking his face.

I was in love.

“Well, I’ll watch out for those polar bears,” I promised, grinning right back at him.

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Ultra Sounds Mondays, November 5, 2012

 

Good morning everyone. It’s a cold day here in Ontario, Canada. I’m pulling out my longjohns tonight!

No new posts for you today I am sad to say (c’mon people, I’m waiting to hear from you!) So instead I thought I would post some links to previous contributors, so you can catch up on what they are up to.

 

Amy Marash has a great new cartoon here.

More wonderful work from Anna Moriarty Lev here.

Barbara Crooker’s poem “November, Sky Full of Bruises” could have been written for me. It make me think back to a November 12 years ago.

Dorit Fuhg has added to her portfolio of Art for Cancer prints - gorgeous.

Check out the latest works of my hero Viola Moriarty here.

Charles Phelps-Penry posted a newer cancer poem in July that I really like.

 

Well there’s a start. It’s a fertile bunch of creators that have posted over this last year. I would love to post your creative work. Take a look at submissions guidelines and keep the creativity flowing.

 

Enjoy the rest of your Monday.

Sam

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Belly Laugh Friday

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.

Sam

For a while there was a restaurant in Chinatown in Toronto that I was visiting every week with the same group of people. We would see the same waiters every week and they became familiar with us.

One week, a waiter suddenly noticed my belly and began to make a big fuss over me. Before I knew it he was speaking babytalk (Cantonese babytalk mind you) to my belly. He started having a conversation with my non-existent unborn baby.

I frantically gestured “no” with my hands, but he was pretty absorbed in his conversation. One of the Cantonese-speaking members of my group finally intervened to tell him the truth of my belly.  The look of shock and horror that appeared on his face would have been comical if the poor man had not felt so terrible.

I kept reassuring him that it was fine, but of course couldn’t use my usual words of reassurance. My friend calmed him down best she could, but I think he wasn’t entirely convinced that I wasn’t making the whole thing up.