Princess Margaret Vignette II

Although many people will participate in this anthology who have no connection to Princess Margaret Hospital, it is still the epicentre of the project. My intention is to occasionally celebrate something wonderful about the hospital – a vignette – to give people a taste of what an incredible place it is.  I will try not to be too sentimental, but sometimes it’s hard when it comes to the people who have helped me there. Here is this week’s vignette: Manny the Chemo Nurse

There are many wonderful nurses in the chemo unit, but my particular favorite is Manny. Manny is probably everyone’s favorite. He’s  muscular, tattooed and carries a huge smile. Everyone knows Manny. He has endless energy and you can see how hard stillness is for him.

It is like poetry in motion to watch Manny work. He never stops, his eyes watchful, planning what to do next. He is economical with his movement, no wasted energy, but precise and confident. He never fails to get the vein first time, no muss, very little pain. My visits are short and snappy with Manny. No extra rituals beyond the minimum requirements.

This efficiency of movement would have served him well in the years that he spent moonlighting as chef and bartender.  He told me he was moved from the kitchen to behind the bar because of his energy and ability to entertain the customers the same way that he now entertains the patients. He would have been great up on the stage.

It t is because of him that the television in the chemo unit plays the food network instead of the 24 hours news channel. He is funny and kind and gives a party-like feeling to the unit even as he keeps patients flowing in and out like an efficient faucet.  You never feel rushed and always feel valued. You can also see that the dynamics between nurses is more lighthearted when Manny is there. He has an effect on the entire unit.

I was about to say “If only they were all like Manny”, but maybe he is better appreciated as a unique individual. Too much energy like his might make the place explode. We will enjoy one of him all we can.

Sam

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

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

Advocating for oneself

When I had the hullabaloo getting my drugs the other day at the chemo unit I reflected on how far I have come in advocating for myself. I think I was never a shrinking violet, but now I now have no compunction about asking for exactly what I need and when I need it. Maybe there’s something about being over 40 that gives me the chutzpah to state my case clearly and firmly.

Do I need an appointment time that can accommodate my schedule? I ask for it. Am I unhappy because I was assigned a yob of a doctor? I firmly ask not to see them again. This happened when we went down to the Mayo Clinic for a consultation. We were sloughed off onto a “fellow” (one of the higher level stages of training) who was your typical arrogant doctor. After a morning with him, I made a clear and firm request that we would not be seeing him again and would only talk to the doctor we had come to see. Voilà.  Problem solved.

Are my drugs not ready? I will go personally to the source to let them know that I have driven in 3 HOURS to get to my chemo appointment and would they please just give me my drugs. Don’t mess with me.

While this kind of self-advocacy has been good for me, I’m not sure how the staff at various institutions feel about me. Perhaps they think “Oh no, here she comes. You take her.” “No you take her, I dealt with her last time”. I do always try to be polite – just firm.

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

Waiting and waiting and waiting….sigh

I’m  ensconced at the chemo unit after a morning of mix-ups and “he saids” and “she saids”.  It’s hard not to get frustrated when someone’s goof  up means two extra hours of waiting and running around trying to get the necessary permissions to get the drug you need.

I keep taking deep breaths and reminding myself that I don’t have to put money out of pocket for this service and I am lucky to be here in this day and age when this drug is available. Finally getting to eat my lunch helps.

Fortunately I do not feel terrible or it would make this wait much more tortuous. I feel for the patients who get caught in these kinds of mix-ups or long waits who just feel terrible and would be better off lying on a bed somewhere.

On the train, if your train is more than a designated amount of time late, you are compensated with a free ticket. Maybe they should have a voucher system in the hospital. If you have to wait more than an hour past your appointed time, you get so many dollars in coupons at the Tim Horton’s downstairs (or at the gourmet coffee cart that I envision living in every clinic). As this money adds up, there will be a greater financial incentive to work out the hiccups that lead to delays.

There, why doesn’t the government ever consult me about these things.

Sam

Another place of creative joy

I found this  program in New York called the Creative Center:

The Creative Center: Arts in Healthcare is a 501(c)(3) nonprofit organization dedicated to bringing the creative arts to people with cancer, chronic illnesses, and through all stages of life.

The Creative Center is proud to have hospital artist-in-residence programs in more than 20 heathcare sites around the New York metropolitan area, free-of-charge art workshops every day of the week, an online gallery representing professional artists living with illness, and a training program bringing The Creative Center’s proven approach to arts in healthcare around the country.

Please go look at this site. I find it an incredibly exciting program and wish we had something like it at my hospital. You just feel inspired looking at their website!

http://www.thecreativecenter.org/tcc/

Sam

Cancer advertising

There is much money spent on public health announcements or activities to either discourage cancer-causing behaviour or to encourage preventative behaviour.

Here are  links to some of the more creative approaches:

This link is to a very clever ad to convey that men need only have a blood test to be tested for cancer:

http://www.creativity-swiss-made.com/?tag=prostate-cancer

In the United Arab Emirates, an innovative approach was used to encourage breast self-examination:

http://adsoftheworld.com/media/dm/friends_of_cancer_patients_stress_ball?size=_original

See what they did in New Zealand to increase awareness

http://www.guerrillapromos.com/2009/10/tumor-city.html

Here’s an ad that didn’t survive the censors

http://www.marketingmag.ca/news/marketer-news/new-colorectal-cancer-awareness-transit-ads-hit-roadblocks-25099

This is a site has some creative anti-smoking ads and displays. Some are not for the faint of heart

http://www.toxel.com/inspiration/2009/10/08/17-creative-anti-smoking-ads/

This is an old one, but one of my favorites

http://www.flickr.com/photos/grrl8trax/2270855308/

Sam

Creativity in action at Toronto General Hospital

The other day I had the chance to walk through a giant colon. Yes, you read correctly.  The colorectal cancer society has a travelling, giant, inflatable colon. You could walk through and see all of the nasty things that can happen in your colon – pretty gruesome. Eat lots of fibre!!

This was  extremely effective education presented in a non-traditional way. Maybe we can have the colon back for the book launch. That would certainly add an unexpected creative touch.

I don’t usually include pictures, but this one was worth sharing:

OOOHH – better than a haunted house.

Check it out if it ever travels to a hospital near you

Sam

Thank goodness for the sherpas, but you still have to climb the mountain

Almost every self-help guide to coping with a cancer diagnosis recommends surrounding yourself with a good support network. Of course I couldn’t imagine how I would cope without mine. They have been extraordinarily supportive and helpful.

What no one seems to tell you, however, is that no matter how wonderful your partner/parent/child/friend is, you still need to walk that path alone. One friend described her role as being my sherpa. I still had to climb that mountain, but she could be there helping me haul my stuff and finding the paths.

There is a limit to what they can do, however. Your support person cannot be your stunt double, standing in for you when you have to walk around a crowded waiting room half-naked in one of those blue hospital gowns or when you have to undergo a painful and scary procedure. You are really in it alone.

I wonder if this is a universal feeling? What have your experiences been? What is it like to be a support person for someone who is dealing with cancer and being on the “outside”?

It would be a very interesting avenue to explore through a creative work. There are complex feelings of isolation, separateness and impatience with other people’s inability to really understand what you’re going through. There are conflicting feelings of not wanting to talk about your illness because you feel that no one else can really understand and frustration that no one is asking how you are.

I think I hear a poem coming on…..

Sam