Ottawa's Cancer Survivor Park

Here we were, on our way to see our urologist in Ottawa Hospital

I'm not sure about sunning myself on these!

to check the progress on this cancer we are confronting, and I spotted the statues. I was curious. We had over-budgeted time, which is the right thing to do, and we decided we should spend some on a drive about, rather than paying for parking!

Here is the cystoscopic procedure, I tend to take notes, take videos, or photos, as it keeps my mind on this, rather than getting upset with the whole thing. The black tube is the endoscope, taking a selfie!
 
Bladder from the inside from Jennifer Jilks on Vimeo.
Cystoscopy: to quote Dr. C's nurse, Leonard, "Make your bladder gladder!"
This nurse is a fabulous man, with an upbeat attitude, and very supportive of some very frail people under his wing. One woman on a stretcher was accompanied by some (stud muffin) patient transfer workers, her daughter, and an attendant. Everyone works together, and are highly respectful of their patients. Our doctor speaks up, as many of his patients are hard-of-hearing. He is fabulous.

The vocabulary around cancer

The park is interesting, but a bit creepy to my mind, and hubby's. Bloch's cancer was diagnosed in 1978. We've learned much more about cancer treatments since then. It begins with the first signage, explaining the purpose of the park and its foundation.

Mr. & Mrs. Bloch paid for this park
In 1978, Richard Bloch, co-founder and honorary chairman of the board of H & R Block, Inc. was diagnosed with “terminal” lung cancer. With the help of his wife, Annette, doctors who said he could beat the cancer, and his own determination, Bloch waged a bitter two-year war on the insidious disease. So dramatic was his fight and recovery that Bloch and his wife devoted their lives to helping others stricken with cancer.

What really upsets me is that they use warrior terminology. We're not the only ones upset with the language around cancer. Cancer is caused by our own cells growing wrong. Many of those with a diagnosis of cancer have raised the issue of language. Many of my hospice clients in Ontario are supported by family, and excellent staff.
Here are a couple of others who write of the language of cancer.

With Cancer, Let’s Face It: Words Are Inadequate

By DANA JENNINGS
'...after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.'
Seriously, the language of cancer is something we need to talk about ... The words we use to describe cancer make us feel bad about ourselves .

THE LANGUAGE OF CANCER

By Leah: 'Seriously, the language of cancer is something we need to talk about'

• I prefer Starbucks

As you know, I think the language we use around cancer is powerful, and important. I talk about a dance, not a fight. I talk about having had a cancer, singular, not cancer, the big scary thing.

Jack Layton didn't lose a fight: He died of cancer 

22 Aug 2011 – Did Jack Layton die from cancer because he didn't fight the disease hard ...noted that Mr. Layton “gave his fight against cancer everything he had." 

Back to the Cancer Survivors Park

As we made our way to view the statues, there was an ambulance, and two screaming Ottawa Police cars going by!
 
Cancer Survivers Park from Jennifer Jilks on Vimeo.

 In the US, with a different healthcare system, patients have to lobby insurance providers for adequate treatment, to find good doctors, and reimbursement for up-front fees. This isn't the case in Ontario. Our urologist is an excellent one, he usually has a student with him, and he highly-praised by all the people we met in the waiting room. he is a smart man, with an amazing 'bedside manner', and well-trained people around him. There were people is his waiting room sharing their stories, talking about their different cancer issues in the waiting room. One older man told us he'd had bladder cancer in 2006, and had had regular cystoscopes with great results. I helped an 88-year-old man put on his hospital gown. Our friend, at 84, is managing his bladder cancer.

What about those who will not survive? Are they 'losers?' I have many hospice clients who will succumb to cancer, but we do not say they 'lose their battle.' It isn't a battle. We have medical issues, tests, a diagnosis, and we either recover by eliminated the cancer cells our bodies create, or we come up with a treatment plan, and a management plan.

There are a number of huge cement rectangles, with various signs on them with some empowering words. They look like crypts to me, you can see them in the video. A young woman was stretched out on her belly on one of them, reading a book. It seemed disrespectful!

The sculptures are fantastic, as you can see, it's just the wrong message for those who will succumb to their cancer diagnosis. I've written about hope vs. false hope. As your journey progresses, you must change the things for which you are hopeful, when unrealistic hopes causes you to avoid living your best life, and enjoying each day. Too many, like my father and mother, spend their days being more ill than necessary, when chemo or radiation is chosen over quality of life.



Framing happiness: our attitude
There is a difference, you see, between hope and false hope, as well as exploring treatments that are hopeless and make you more sick than you already are. You cannot hold to every mysterious notion for a cure (as with the MS Zamboni treatments). You change what you hope for, managing your cancer diagnosis. You hopes must be revisioned into realistic ones: a good day, pain-free, eating as you please, hope for a visitor (or none!), some one to bring a meal, being able to get outdoors.

Chemo killed my mother, and radiation gave my dad an infection, while horribly decreasing his quality of life, as well as having him miss his late wife's funeral. Yes, most people can recover from cancer, but I do believe this USA-based groups gives the wrong message in many cases.


We kept driving about, just for fun.
This park is in an interesting part of Ottawa, with some HUGE homes!

BOOK REVIEW: Fireballs in my Eucharist: what families with cancer need to know

Sometimes, we just have to laugh. The title of this book didn't make sense at first. The patient thought she heard she had 'Fireballs in my Eucharist'. What she'd been told was that she had fibroids in her uterus.

From the publicist:

Fireballs, indeed

Dr. Pinzone quickly figured out she meant to say, “I have fibroids in my uterus.” In this moment of sudden clarity, he had another: Patients are dangerously uneducated and misinformed when it comes to the confusing and complex topic of cancer and its treatment.

I believe that this is a book more applicable to Americans than Canadians. Our Canadian universal healthcare system is vastly different than the United States healthcare, whereby people pay for care, and then must claim it back from their insurers (if they have healthcare insurance).

That said, navigating one's way through any system is much smoother if you have a sense of the journey you are about to take, if you can name the places you will go, if you have learned to speak the language, or have a translation book with you. Not all of us know the proper names for our body parts. This is a crime. We prepare for trips, by researching what we will need to take, where we will go, and what we have to do to protect ourselves. This is the same for healthcare systems. We need the vocabulary to handle these situations. Those who travel on a journey need to be able to ask for directions. Those journeying through disease trajectory need to read everything they can, in order to understand what is going right and when things are going wrong and you need help. The definitions at the back of the book really helps.

Another benefit of the book is that it explains how cancer cells form, and gets down to the basics of cancer cells, what they look like and how they are differentiated from 'normal' cells.
Here are normals cells.

And cancerous cells.

cells should grow and divide this way

Too often we use battle vocabulary, but if we know anything about cancer cells, they are produced by our own bodies, in response to stress, chemicals in the environment, pollution, fatty tissue hormones, and the like. There are no winners or losers, as we all die and dying isn't losing or failure. We manage our cancer as best we can.

I prefer to say:                "We are confronting cancer."

 In this book patients will discover:

1.       How to educate yourself about cancer

2.       How to navigate the medical system

3.       How to anticipate the mental and physical challenges

4.       How to leverage other life skills in the battle against cancer

These things can be the difference between life and death, and is especially relevant given the flood of newly insured patients entering into the healthcare marketplace with the enactment of the USA Affordable Care Act.

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book review blogs
@Barrie Summy

hearing aids can be small,
barely noticeable

Of course, doctors use words we might never have heard before. A diagnosis of cancer often renders one not only speechless, but hearing impaired (even if you do not have hearing issues). And many of us have hearing issues as it is. When we read, we predict what the next word might be. The same is true of hearing. My late mother, once she'd lost much of her hearing, would read lips and often answer my questions with answers that simply did not make sense. Too often, doctors speak quickly, quietly, and throw words at you without asking you if you understand what you have heard.

Depending upon the tact, and the attitude of the oncologist, it is a moment in time when we are in shock. I've been an escort for a client whose GP told her that her breast cancer had returned. Her words were comforting for both her patient and to my ears:

Hubby, pre-op!

"You've confronted cancer before and showed great strength. We'll work on this together and I am confident you will handle it well." 

This was a patient with several physical, and mental health issues. Her schizophrenia was being managed and her ODSP benefits were giving her much home support.

This is a good reason to take people with us when we go to see a doctor. My mother thought she had a particular type of cancer, but when I researched it, she'd misheard them. I wrote about his in my book: I kept on doing research on my own, but could not find anything on leukoplatia  (I learned later, in 2008 when I was researching for my book, that it was leukoplakia.  “Cancer in the groin” was covered, but it did not seem to apply to her situation.

I took this book with me when we went for the pre-op appointment for hubby's cancer surgery. He's since had his surgery, all went well, and we are in post-recovery. Thank you to all who have enquired! The healthcare system can work well for most!

Hubby's hospital bed,
happy to be home!

I like Fireballs in my Eucharist. 

It's not a big book (150 pages or so). It is well-written, and contains excellent advice. Advice I've written about a lot on my healthcare blog regarding Ontario healthcare:

Preparing for an appointment

How to advocate in the hospital

Questions to ask your physician

Hospitalization for seniors -what families need to know regarding hospitalisation and discharge

Before you dial 911

Muskoka Rocks Road Race

Hit the road in support of Camp Oochigeas! Here is a good cause I am happy to promote.

 Registration is now open for the 9th annual Muskoka Rocks Road Race. The event will be held in Minett, Muskoka, on Sunday, August 5.

CAMP OOCHIGEAS 1984, Camp Oochigeas has been providing kids with cancer and kids affected by childhood cancer a unique opportunity for growth through challenging, fun, enriching and magical experiences.
 Ooch could not offer this wonderful experience without the generous support of the Muskoka Rocks Road Races.

One hundred percent of proceeds will be donated to Camp Oochigeas, a camp for children affected by childhood cancer with facilities in Toronto at Ooch Downtown, SickKids Hospital, and at an overnight residential camp in Muskoka, Ontario. Over the past eight years, the race has raised more than $350,000, enough to cover the cost of sending one hundred children to camp. 

The race is expected to have 500-600 runners including elite athletes, Muskoka celebrities and families alike. The event features a 10k run, 5k run/walk, and the Magical Muskoka 1k Kids Run. Both amateurs and elites now know the race, which runs through rolling cottage country, as one of the most difficult 10k runs in Ontario.

Now more than 100 volunteers and event sponsors come together, making the annual Civic Long Weekend event possible.

 Camp Oochigeas does not receive any government funding and relies entirely on the generosity of donors and volunteers. “Camp Ooch is extremely grateful to Lynn and Laurel, the event sponsors, and participants who have provided crucial funding for almost a decade so that children from the Muskoka area and from across Ontario can experience camp while undergoing cancer treatment,” says Camp Ooch Executive Director, Alex Robertson. The race is set to kick off at 8:30 AM on Sunday, August 5 at the Peninsula Recreation Centre and a post race party with music and entertainment will be held in the same location. Click here: for registration.

View Larger Map Get Directions View Bird's Eye

The Pink machine

I've thought long and hard about this issue. The pink ribbon machine. Hi-jacked by many business owners, cancer fundraising is big business.

Why is it that people are reduced to: Cross-border surgery

 

Cancer patients are forced to mortgage their houses to pay for advanced U.S. techniques Canada won't fund

Why isn't more research money put into these causes? Because cancer has been hijacking research dollars, and many have donor fatigue. I read the book Pink Ribbons, Inc., now a documentary.

Mom in 2005

How running will find a cure is nonsensical. Those who do the fundraising claim it 'raises awareness', and encourages fundraising. To what end? However, where do the funds go, in each organization? The language of cancer ought to change.

Hi-jacking Mr. Jack Layton

Many who are facing cancer do not want to be labelled fighters. Mr. Layton engaged medical interventions to get rid of cancer. We truly must pay attention to language, listen, and understand what it means to those with cancer.

Certainly, my mother misunderstood her treatment and potential for cure. She knew the buzz words: radiation, chemotherapy, but did not ask questions or understand the truth about chemo: it killed her. You can read about our journey here, this is an excerpt from my book:
 The oncologist: back to Toronto

--August 17, 2005

"Highly revelatory—at times shocking—Pink Ribbons, Inc. challenges the commercialization of the breast cancer movement, its place in U.S. culture, and its influence on ideas of good citizenship, responsible consumption, and generosity. "

The author, Samantha King, is an associate professor of physical and health education and women’s studies at Queen’s University, in Kingston, Ontario. It is well-written, and an interesting read. It is, indeed, shocking, the amount of money sunk into 'research', with no promises of support or delivery of programs. If you donate, you must be sure to check out the background of the sponsors.

I would caution you in entering the 'race for the cure'. There are questions as to how much money goes to research, and how much should go to supporting those with cancer. The Canadian Cancer Society provides a range of services, for example: a lodge in which to stay, peer support, volunteer drivers, etc.). They are transparent in their financial statements.

Helping those with cancer – watch the video

Our information and support services help cancer patients and their caregivers by reducing anxiety and increasing hope. In this video healthcare professionals speak about the benefits of the services and former clients share how these services helped them through their cancer journey.

The Susan B. Komen foundation has raised more than a billion dollars. They charge big bucks to participate in their machine. The disease is being used for profit. Every marketing strategist in North America has at least thought about tying their product up in a pink ribbon.

Breast cancer has become the poster child of cause-related marketing campaigns - people walk, run and shop for 'the cure'. Each year, millions of dollars are raised in the name of breast cancer, but where does this money go and what does it actually achieve?


Sisters know first-hand cancer can be beaten  
However, through the experience they learned the disease is genetic and their family members are carriers, leaving them worried about the future for their children. That’s part of why they decided to come out to raise funds to help find a cure.


The recent Ottawa Run For The Cure raised $1.5 million dollars. How is it that this kind of money cannot find a cure? I believe we must put more money into prevention, treatment and services. We know how to reduce the risk of cancer, if not prevent it:
eat a balanced diet (mostly plants), reduce fats and alcohol, exercise, get enough sleep, manage stress. Yet marathon runners contract cancer, as well as those who do all of the above.
These sisters know that cancer is genetically heritable. How, then, could they have prevented it? Perhaps we need more genetic counselling. Perhaps those taking expensive, extreme in vitro fertilization should have the same counselling, rather than spending thousands of dollars to make a body get pregnant unnaturally.

Pink Ribbons, Inc. is a feature documentary that shows how the devastating reality of breast cancer, which marketing experts have labeled a "dream cause," has become obfuscated by a shiny, pink story of success.


For more information on this film, please visit Pink Ribbons, Inc. page or send an email toPinkRibbonsInc@nfb.ca.
Pink Ribbons, Inc. premieres at TIFF to a packed house | NFB.ca blog

12 Sep 2011

Hi-jacking Mr. Jack Layton

Amazing how the different groups, agencies, authors, have hi-jacked Mr. Layton. (Excuse the pun.) He is the unwilling poster boy for prostate cancer.

E-book about Jack Layton set to debut soon

...funeral, but the first book about Jack Layton will soon be on store shelves - or...if we were lucky enough to have Jack still with us, what would he be...youth initiatives, as designated by Jack Layton's widow Olivia Chow."
The book will be available by the end of September. All proceeds from the sale of the book "will be donated to aboriginal youth initiatives, as designated by Jack Layton's widow Olivia Chow." 

Meaning, the publisher will get its money back. This means that the book was in progress while he was dying. What are they thinking?

Jack Layton Tribute Page

cancer.ca

Canadian Cancer Society pays tribute to The Honourable Jack Layton, friend and cancer fighter.
They continue to speak of Layton's 'fight' against cancer. The Cancer Society has Facebook ads to bring attention to their cause. The Society is noble in that, aside from dumping money into administration for fundraisers (as opposed into research itself), they have amazing services for both those with cancer (volunteer drivers, peer counselling, research services), they also provide peer counsellors for people, like myself, who were dealing with cancer in their family.

Many who are facing cancer do not want to be labelled fighters. Mr. Layton engaged medical interventions to get rid of cancer. We truly must pay attention to language, and what it means to those with cancer.

There are no wins or losses, only lessons. Those who face this head-on must be given dignity.