Wednesday, 5 February 2014

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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@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

    Sarah Laurence said...

    Fine review and excellent advice on bringing a second set of ears to doctor appointments. As the title shows, gallows humor helps too.

    Kay L. Davies said...

    That's a pretty happy smile for a pre-op patient! Glad he is doing well.
    I can sure understand the title of that book, Jenn. I often mis-hear things, especially when Dick and I are watching TV together, so I'm always asking dumb questions, like "Why did he say he wants a banana?" when someone has said something completely different, not even "I wear a bandana" but "My son went to Kansas" or something.
    Drives me bonkers.
    Luv, K

    Barrie said...

    Love the title! And I think you're absolutely right. Once the doctors says the word "cancer", you panic and stop listening. Glad to hear your husband is doing well. I've been following his progress. Thank you for reviewing, Jenn!