Sunday, 29 June 2014

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

'...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 .


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


Roan said...

A friend of mine is currently fighting a valient fight against breast cancer. Very interesting post. Thanks for sharing.

Christine said...

wishing you continued strength in this difficult time Jenn.

Red said...

Most people are familiar with the fight and conquer stuff. The other voices have not been herd. More needs to be done to promote realistic hopes. You've been through it and are in it so you have a much closer view of the situation.

William Kendall said...

Keeping you in my thoughts, Jennifer. The disease has taken those in my family as well, including my mother a year ago.

I didn't know about this park.

EG CameraGirl said...

Interesting post, Jenn.