Category Archives: cancer

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Wednesday at the chemo unit, January 2, 2013

bar-mitzvah-boy-jack-rose-007

 

 

Happy New Year to all!

2013. It’s an awesome number to be writing. I was diagnosed in 2000, 13 years ago.

In the Jewish tradition, a boy or girl reaching the age of 13 enters into their adulthood (as celebrated with the Bar or Bat Mitzvah.) So this would mean that my illness is entering its mature years.

An adolescent who turns 13 is not really an adult yet. He or she still lives at home, is financially dependent and can’t fully participate in civil society. They usually do gain some autonomy, however, and start to act more like an adult.

Likewise, my disease is still living at home and is dependent on me for life. At the same time, it’s gained some autonomy. It can go out without me. It does not completely absorb me. It is my disease, it is not me.

Ideally, this gradual separation will one day result in the disease leaving home. But we all know that the trend these days is for kids to  return home to live with their parents when they can’t get a job. Maybe mine will go to medical school and look after me in my old age.

Sam

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Photosensitive

I just discovered a beautiful organization called Photosensitive

I will let them speak for themselves:

PhotoSensitive was founded in 1990 as a non-profit collective of photographers determined to explore how photography can contribute to social justice. Their idea was to bring together the photographic talents of a number of Toronto-based professional photographers, to harness the power of the camera to achieve social goals. Each photographer would bring his or her own vision to the subject; the sum of these visions would provide a compelling social comment.

The subject matter of their projects ranges from homelessness to child poverty. From HIV/Aids to Rwanda. They have two cancer-related projects: Cancer Connections and TIEd together (prostate cancer project). Their talented photographers build stories with their pictures, use their pictures to comment on issues and also to encourage the viewers to take action.

Their gallery contains an incredible collection of photographs which I encourage you to view.

Sam

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Art Cell Gallery

In August, I told you about a researcher/artist in England who makes art from the images of cancer cells. It turns out that she has started an art gallery at the  Cancer Research UK Cambridge Research Institute (CRUK CRI), that brings in related art work for the staff, patients and general public.  It is not all cancer related, but is another great example of bringing together science and creativity.

Learn more about the Art Cell Gallery at the following link:

http://www.stefaniereichelt-photographyandprints.com/artcellMoleculesAndPaint.html

Sam

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10 things I learned at the hospital

As the year draws to a close, I thought a bit of hospital wisdom might be in order. Based on the wildly successful book Ten Things I learned in Kindergarten, I thought I would share my list of Ten Things I Learned at the Hospital. 

1. If you have a doctor that is a yob, you can exchange for an upgrade:

Learning: You are in control of your own health care and do not have to put up with arrogance or incompetence.

2. On the 2nd floor of Princess Margaret Hospital, there is a secret washroom that is spacious, private and almost always clean

Learning: If you look hard enough, you will find the things you need.

3. It is okay to be late for appointments because the doctor or clinic is always running late (unless they’re not, which you will soon learn)

Learning: Don’t rush to wait.

4. You get into the clinic faster on the day you bring in the Christmas chocolates for the staff.

Learning: Kindness, especially in the form of chocolate, will bring you to mind more often. 

5. The second floor chemo unit is the only clinic that plays the Food Network on their TV rather than the 24 hour news channel.

Learning: We don’t have to spend our days surrounded by bad news. (Update: There is no longer a second floor chemo unit, so, sigh, no more food network).

6. The time when you finally get to take a nap while in the hospital, is a moment that a dutiful member of the clergy will arrive to bring you some good cheer.

Learning: Call before visiting.

7. Gnocchi with tomato cream sauce will taste like cardboard for the first few weeks after a stem cell transplant. In fact, just about everything will taste like cardboard except for grapefruit and cucumber.

Learning: Let go of expectations.

8. Ignoring a 24 hr urine collection bottle does not make it go away.

Learning: Procrastination doesn’t help you avoid unpleasantness.

9. The minute you are told not to eat something, you instantly develop and urgent craving for it.

Learning: Our minds can really play games with us.

10. The times when you feel good cannot be taken for granted and the low days do not last forever.

Learning: I repeat, let go of expectations.

 

Happy Holidays to everyone!

Sam

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Ultra Sounds Monday, December 19, 2011

This week’s submission is from Pam Birrell.  I love this poem in a multitude of ways, but won’t rattle on about it because it speaks for itself so eloquently. Please do comment, however, if it resonates for you.

Pam gives the following background on herself:

I am a 15 year breast cancer survivor.  I battled aggressive breast cancer at the age of 32.

I am an angel parent.  My middle child died of cancer 10 years ago at the age of 8.  He battled stage 4 neuroblastoma for 4 years.

Here is a poem that I wrote last year as I reflected on those who could stand to walk with us on this horrible journey.

A Blessing for Darkness

by Pam Birrell

Sit with me this dark night

Let a kind word escape from your frightened mouth

And fall through the chasm to my wounded soul

Let your thoughts be free of criticism and judgement

Let respect flood into every dark crevice

Let there be no guilt when we know there is no light tonight

Sit with me this dark night

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A full dance card

If you have a disease which affects multiple systems in your body or a complex illness , then you probably have a busy medical life.

Every time I see my principal doctor, I get a printout of my itinerary. Between treatment appointments, diagnostic tests and seeing the hematologist, liver doctor, kidney doctor, heart doctor, bone density doctor plus my gp, my dance card is pretty full. I could really use an agent to do my booking.

I feel well loved by my team of doctors, why else would they want to see me so often? I feel important , a woman on the run, places to see, needles to get, doctors to wait for. Who needs a career?

I think I hear another poem coming. Something about “ten cents a dance/my card is full/no wallflower am I /In such demand/ my feet grow weary…. Stay tuned for the rest

What does your dance card look like?

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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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

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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