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Understanding Clinical Trials: A Jargon Buster Guide

December 2, 2019 in , , , , , , , , , , , , , , , , , , , , , , /by

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they […]

Ten Things I Wish I Had Known When I was Diagnosed with Breast Cancer

October 21, 2019 in , , , /by

As soon as the first golden leaves of autumn appear on the trees a feeling of sadness starts to descend over me. I’m catapulted back over the years to a late September day. A day that’s etched forever on my mind. The day I was diagnosed with breast cancer. In the weeks that followed my […]

Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes

September 27, 2019 in , /by

A familiar name on the tip of your tongue, keys misplaced, a train of thought derailed in the middle of a sentence. If what I’ve just described sounds familiar, you may be experiencing symptoms of “chemobrain” – a name for the cognitive (how you process and recall information) difficulties associated with cancer treatment. Although one […]

Beating Burnout: Self-Care Strategies for Patient Advocates

August 23, 2019 in , /by

As patient advocates we are highly motivated to make things better for others. Our commitment and passion for the work we do can lead us to take on more activities with ever-increasing demands on our time and energy. All of this we do willingly, but this work doesn’t happen without a degree of personal cost. […]

How Do You Deal With Cancer Guilt?

July 26, 2019 in , /by

It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.”  Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air […]

After Cancer, Ambushed By Depression

June 28, 2019 in , , , , , , , , , , , , , , , , , /by

At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens […]

Patient Advocacy: How to Create a Visually Compelling Message

May 28, 2019 in , /by

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change. An effective advocacy message is credible, clear and convincing.  When it comes to creating content to support your message, the type of content you create matters. […]

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

April 24, 2019 in , , , , , , , , , /by

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died? It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard […]

Patient Participation in Research: Towards Meaningful Engagement

March 26, 2019 in , /by

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of […]

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

February 25, 2019 in , , /by

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list […]

Tips on Finding a New Job or Changing Career after Cancer Treatment

January 23, 2019 in , , , , , , , , , , , , , , , , , , /by

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to […]

Returning To Work During or After Cancer Treatment: Part 2

December 20, 2018 in , , , , , , , , , , , , , , , , , /by

This is the second part of a three-part series which deals with common concerns on returning to work after a cancer diagnosis. In Part 1 of this series, I shared some tips with you on how to prepare for your re-entry into the workplace. In this article we will look at practical ways to handle […]

Returning To Work After Cancer Treatment. Part 1: Preparing the Ground

November 26, 2018 in , , , , , , , , , , , , , , , , /by

This month’s article is the first in a three-part series which deals with common concerns on returning to work after a cancer diagnosis and offers practical solutions for helping with your re-entry into the workplace. A diagnosis of cancer is a profound disruption in our lives, leaving no area untouched. Cancer impacts our family life, […]

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

October 19, 2018 in , , , , , , , , , , , , /by

It’s October and the pink frenzy is in full force.  Breast Cancer Awareness Month (BCAM) is impossible to miss given the pink ribbon avalanche that arrives each Fall.  While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is  nevertheless […]

A Patient Engagement Manifesto– 6 Principles of Partnership

September 19, 2018 in , /by

Recently I presented at a conference on the topic of patient engagement. I spoke to the audience, mainly comprised of digital technology start-ups, about the need to find ways to engage patients meaningfully in healthcare design.  Too many developers think they understand what patients need, but in reality, many appear to be motivated more by […]