Category: Living with heart disease

posts here focus on the “new normal” you’ll discover once you get home from hospital and the reality starts to sink in

Revisiting: “All I want for Christmas is NOT in a gift box”

~ Carolyn Thomas ~ 21 Comments

by Carolyn Thomas     ♥    @HeartSisters 

My family tells me I’m “impossible” when it comes to picking out a gift for me. I am rarely able to offer them even a single helpful hint. Instead, I plead with them most years not to buy me “more stuff”.  I don’t want stuff. One only has to visit the average yard sale to witness the inevitable future graveyard of all that stuff. Bread machines. Chia pets. Exercise bikes. Candles. Aside from absolute necessities of life (like groceries or my paper crafting supplies), there are few things I now need or want.

Well, there are things I need and want, but hardly any of them come from a store or in gift boxes. I made a list of these last December. Let’s revisit that list to see if Santa was paying attention.        Continue reading “Revisiting: “All I want for Christmas is NOT in a gift box”” →

Unseen, unheard: the commonly shared lived experience of patients

~ Carolyn Thomas ~ 17 Comments

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?

~ Carolyn Thomas ~ 14 Comments

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

~ Carolyn Thomas ~ 23 Comments

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” →