Patients’ blog

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Maggie Keresteci is a caregiver to her sibling who lives with a life altering disease and is committed to advocating for solutions that will improve the lives of Canadian patients and their caregivers.

 

 

"Coming together is a beginning;

keeping together is progress;

working together is success."

These words of Henry Ford, that bastion of business innovation, have been taking up space in my mind for the last few weeks, as I have contemplated the emerging world of patient and caregiver partnership in Canada. ...continue reading →

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Brianna Cheng is a MSc Epidemiology student in the Class of 2020 at McGill University.

 

 

 

is it possible to mourn the living?

 

time’s grasp on youth seems ever loose

while draining those already

shaking

dithering

moaning

clutching that metal receptacle

you cursed and swore ...continue reading →

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Marcy White is a writer and special needs advocate.

 

In just one year, my son, Jacob, was put on Bi-Pap in the PICU on four separate occasions. Only a respiratory therapist was allowed to put the device on him or make adjustments when he was in the hospital. On the first occasion, he was not allowed on any other hospital unit while dependent on Bi-Pap. On subsequent occasions, he could transfer to the General Pediatrics unit as long as his Bi-Pap needs remained stable but, should his Bi-Pap needs increase, he would be transferred back to the PICU. ...continue reading →

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Ray Schachter is a lawyer in Vancouver. He is on the Executive Committee of the Global Sepsis Alliance and Canadian Sepsis Foundation

 

In March 1996, I was a healthy, fit 50-year-old man enjoying life with a young family.  A month later, I was in an induced coma fighting for my life against acute septic shock accompanied by severe adult respiratory distress syndrome (ARDS) and multi-joint and -organ dysfunction which frequently accompanies sepsis.  My sepsis was brought on by Group A Streptococcus (Strep A) in my bloodstream which compromised almost all my joints.

My trajectory which led to acute sepsis is not unusual.  On Day 1, I had a very severe, but short-lived, bout of extremely high fever (40.5 degrees Celsius), followed by excruciating hip pain the following day.

By Day 3, the hip pain had become unbearable.  That evening, we called my family doctor’s on-call service and a doctor came to the house at midnight.  The physician felt my condition was osteoarthritis and prescribed anti-inflammatories.

On Day 4, my wife became so concerned that she called a doctor who was a family friend.  ...continue reading →

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Sarah Currie lives in Ottawa, Ontario

 

I changed jobs this week. On Monday, my first day, when I should have been primarily concerned with learning the office microwave-cleaning rota and orienting myself to a new Xerox print centre, I was a little preoccupied. At 8 pm on Sunday, I found out that my father had fallen, broken his hip, undergone emergency surgery, and was in isolation in a hospital in southwestern Ontario. Details were fuzzy. Hospital staff would not share much with my aunt, my father’s sister. He had managed to call her on Sunday morning, 24 hours after his fall, once he had come round after anaesthesia. He needed her to go to his house to make sure my mom was okay. My mom wasn’t answering the phone.

Unanswered phone calls are not uncommon at my parents’ house. My father is quite hard of hearing, after spending 37 years as an infantry officer. My mother tends not to answer the phone because she is self-conscious. She has a severe cognitive disability ...continue reading →

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This story is about my family’s experience with PAD (Physician Assisted Dying). Our hope is that it will be of some help to others following, or contemplating following, the same path.

 

In the fall of 2015 my brother, Curt, age 62, was diagnosed with incurable prostate cancer. He had been overseas for a number of years and by the time he came to us he was skin and bones, couldn’t walk, suffered from hallucinations and vision issues as well as bone and joint pain. The hospital doctors got him stabilized and resolved the hallucination and visions issues but held out no hope for curing the cancer. We were very lucky to secure him a bed at a hospice facility in a state in which PAD is legal. I cannot say enough about how wonderful and supportive they were to Curt and the rest of his family and we all feel a huge debt of gratitude for their efforts. I am not naming this facility or state because, although everything they did was perfectly legal and above board, the staff expressed a desire to fly under the radar regarding their participation in the process. This position reinforces the reality that PAD is still a very controversial endeavor ...continue reading →

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dprDawn Richards provides project management consultant services to the Canadian organization Network of Networks (N2). She also works as a patient consultant for other organizations.

 

Have you ever wondered what clinical trials are? How they work? What the potential benefits and risks are? If a clinical trial is an option for you or someone you know we hope that a new website called Itstartswithme.ca (Cacommenceavecmoi.ca) will answer a number of these questions for you, and help you make an informed decision about clinical trials. The website also includes some questions to ask if you’re interested in becoming a participant as well as what to expect, and a large glossary of terms.

ItStartsWithMe.ca was created by the Network of Networks (N2), a Canadian organization that represents organizations that carry out clinical research ...continue reading →

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PeggyPeggy Cumming, is a wife, mother, grandmother of 6, sister, niece, cousin and friend, as well as a teacher - retired after 34 years in the classroom - and an athlete.  This is her last blog, a year on from her diagnosis of lung cancer.

 

My last CMAJ blog was written and posted in April, 2015, when I was anxiously waiting the results from a CT scan of my lungs, following surgical and oncology treatment for non-smokers’ lung cancer. I’m overjoyed and relieved to write that the CT scan shows that my lungs are clear, that there is no evidence of disease. Now, I am emotionally free to get on with my life, to try to overcome the residual side effects of chemotherapy, and to regain some of the strength and fitness that I have lost.

I wish it were just that easy! As happened thirty years ago, following treatment for breast cancer, I now find myself asking, “Why me?’ not the unanswerable Why Me? that one asks when first diagnosed, but the Why Me? that follows successful treatment ...continue reading →

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Graeme RockerGraeme Rocker is a professor at Dalhousie University in Halifax

Editor’s note: Part I of this series appeared as a Humanities article in CMAJ; parts II , III and IV appeared on CMAJ Blogs.

 

At six months and counting, life has mostly returned to normal, although persistent heaviness in dependent parts still creates intermittent discomfort. A long bicycle ride with insufficient padding had me worrying about Fournier’s gangrene for days. Wearing old lycra with my new contours, I did a brutal number on one upper thigh and side of scrotum. ...continue reading →

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Janet_W_cropJanet Whitehead works and lives in Vancouver, BC. She is the mother of 3 children and has a granddaughter.

 

Five years ago I was diagnosed with lung cancer. I had most of my left lung and lymph nodes removed in my first surgery and tumours removed from my right lung in a second surgery three months later. I’ve never smoked.

It was a huge shock. Like most people, I thought only people who smoked got lung cancer. But that’s not the case.

Through my husband’s work, I am aware of radon gas and the fact that it is a leading cause of lung cancer. We sent radon detectors to the two homes where we had lived in eastern Canada. One of the homes, located in the heart of Ottawa, tested a staggering 16 times above the Health Canada radon guideline ...continue reading →