Unseen, unheard: the commonly shared lived experience of patients

by Carolyn Thomas  ♥ @HeartSisters

At first, I was surprised that so many women living with breast cancer were following my Heart Sisters blog. I’ve never had breast cancer and I rarely write about breast cancer (except here, for example, on the known link between breast cancer treatment and subsequent heart disease). Yet what I was soon to learn was that heart patients have lots in common with cancer patients, or with anybody else who has been blindsided by a serious medical crisis. Although the diagnosis may be different, we can face the same shock, fear, confusion, pain and exhaustion experienced by all who suddenly know what it’s like to become a patient.

Abigail Johnston is one of those breast cancer patients. We follow each other’s blogs. She was a 38-year old lawyer and mother of two boys when she was diagnosed with Stage IV Metatastatic Breast Cancer (MBC) in 2017. She writes about this on her compelling blog, No Half Measures from her home in Florida.  Every word of her recent post called “Unseen and Unheard  hit home for me.        .       Continue reading “Unseen, unheard: the commonly shared lived experience of patients”

False hope: better than no hope?

by Carolyn Thomas      @HeartSisters

My former colleagues in palliative care often spoke about the concept of hope as being a fluid, ever-changing state of being. When we’re suddenly face-to-face with a frightening medical crisis, for example, we hope at first that maybe the diagnostic tests were wrong. When the diagnosis is confirmed, we hope that this treatment/this procedure/ this drug will be the cure. But if we’re not cured, we hope that our symptoms can be managed so we don’t suffer. If we do get worse, we hope that our suffering won’t become a burden to our families. Then we hope that after we’re gone, our loved ones will be taken care of.

There was never talk about “no hope”.  There is always hope.  But our hope changes.     .             . Continue reading “False hope: better than no hope?”

“Do I belong here?” Unintended barriers to cardiac rehabilitation

by Carolyn Thomas     @HeartSisters

It was 10 a.m. sharp when I walked into the gym where my cardiac rehabilitation classes were about to begin. The group’s coordinator was a friendly former cardiac nurse who now spent her mornings with freshly-diagnosed heart patients in the rehab program. She greeted me warmly, and toured me around the facility, introducing me to my fellow cardiac rehab buddies. And “fellow” was the apt word: it turned out that in that particular class, I was the only female heart patient in a gym filled with men. Old men. Old men who all happened to be golfers – which I would soon learn was the sole topic of their conversations.  My initial reaction was: “Do I belong here?”        .             .     Continue reading ““Do I belong here?” Unintended barriers to cardiac rehabilitation”

Behaviour change: if it’s so ‘easy’, why do so many studies show it won’t last?

by Carolyn Thomas      @HeartSisters

Many centuries ago, while I was a volunteer run leader at our local YM-YWCA annual Marathon Run Clinic, my assigned running group each January was the 10-minute milers, whom I affectionately dubbed The Turtles. Our motto: “No course too short, no pace too slow.”   My group members were typically either former runners slowly returning after an injury, or people who were brand new to running. The newbies were as enthusiastic as their freshly-made New Year’s resolutions:  one, for example, declared to me that this was the year that he was finally going to quit smoking, lose 30 pounds, and run a marathon.

To which I replied: “Honey, pick ONE. . .”     .           .  Continue reading “Behaviour change: if it’s so ‘easy’, why do so many studies show it won’t last?”

The bumpy road of the freshly-diagnosed

by Carolyn Thomas        @HeartSisters

bridge-2490738_1280You probably already know that it can be a scary road indeed leading from the moment you hear that initial diagnosis until the day you are able to start thinking of yourself as a person first, who just happens to be a patient. Until then, it’s a bumpy road to recovery, often with more downs than ups, as I’ve written about here and here, for example. But researchers in Spain suggest that there are often four predictably distinct stages in a recovery roadmap. Continue reading “The bumpy road of the freshly-diagnosed”

Walking away vs. trying harder: quitting revisited

by Carolyn Thomas     @HeartSisters

When gymnast Simone Biles made the shocking decision to opt out of the women’s team final at the Tokyo Olympics, blowhard pundits (like the insufferable Piers Morgan) declared that there is “nothing heroic or brave about quitting.”

Simone explained that she needed to “focus on my mental health and not jeopardize my health and well-being”.  Even for narcissistic blowhards, Morgan’s response to her decision was out of line. Sometimes, walking away can be the wisest and most thoughtful choice we could possibly make.      .      .       .              . Continue reading “Walking away vs. trying harder: quitting revisited”