Weekly Round-Up: The Patient Expertise Edition


Time for this week’s round-up of the best of the blog posts which I’ve read over the past week. These are the posts that have moved me, taught me something, inspired me, and which I’ve wanted to share with you. Don’t forget if you have written a post which you would like readers to see, just leave a comment below.

Many of you reading this blog are passionate healthcare advocates and this week’s edition of the round-up is dedicated to your tireless advocacy and acknowledges the expertise you share with the world.

Speaking and writing on patient involvement in research is one of the hats I wear. In fact, I’m putting together this round-up at the airport as I wait for a flight to Europe to speak at a conference on this very topic. So this week, it was of great interest to me to read two stand-out posts in the blogosphere on this theme. The first from UK-based Sally Crowe is a powerful evocation of the highly personal nature of Patient and Public Involvement and the second is from Candian Isabel Jordan on the nature of expertise. If this is a topic that interests you then both are must-reads.

Amy and Nancy share their thoughts on the recently updated breast cancer genetic testing guidelines from the American Society of Breast Surgeons.

Dr Attai posts the results of a recently published which assessed primary care physician (PCP) knowledge about breast cancer treatment decisions, and their comfort level with having treatment option discussions with their patients.

On the same theme of decision-making, Karin writes of the mental and emotional cost to us in making cancer treatment choices.  And here’s a great post from Terri on honoring all choices and decisions after mastectomy.

Sarah is dealing with hair loss during chemotherapy.

As someone who is currently struggling with my weight and healthy eating, I really appreciate Cathy‘s balanced advice on how to look after your diet.

While JoAnn writes of the side-effects of Tamoxifen, Margaret wonders where she will find reassurance now she is coming off the drug.

Liz shares a  moving reflection on getting the news of No Evidence of Disease:

I can not explain what it’s like to live a life turned-upside down, to fight to bask in the light of good news in this moment, despite the darkness that certainly lies ahead. Yes, it’s a cold and broken hallelujah.

Exciting news as A Fresh Chapter expands to Kenya.

Happy one-year blogoversary to Juliet this week.

Lovely post from Siobhan on the power of music to heal and connect.

Barbara’s post on the toxicity of the work environment that some of us have encountered after a cancer diagnosis resonated with me this week.

Connie shares a reflection on the importance of  ‘sisterhood’ (or ‘brotherhood’) community of support in our lives.

Sally shares the naked truth this week – both literally and metaphorically speaking!

Ann Marie Otis is facing her fears head-on in her latest post.

Becky is looking forward to a year of transitions.

Tammy reflects on six years since she was diagnosed with metastatic breast cancer.

Finally  this week, I leave you with a quote from Johanna from her story of being diagnosed with a recurrence of breast cancer:

Lebanese poet Khalil Gibran wrote:

Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”

But I say unto you, they are inseparable.

Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

The field of kindness doesn’t die. Summon it. Your strength is deeper than you know.

Until next week,

In a world where you can be many things..

Be Kind

Yours with much love always,

Marie xxx