Weekly Round Up: Things To Know Edition

It’s been a whistle-stop working tour of Europe and the US over the past six weeks for me. Travel is always enjoyable, but it’s exhausting too, especially when it’s focused on work. I’ve missed keeping up to date with your blogs and so it feels good today to finally have time again to catch up and produce another weekly round-up.

I found myself nodding in vigorous agreement with Jamie, as I read her post on “Cancer FOMO”. As she explains it “thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO” Perhaps a solution to this will be found in Ann Marie Otis‘ latest venture “Wisdo”? In the spirit of things I wish I had known beforehand, check out Rebecca‘s very useful tips for chemo; Terri‘s helpful list of 5 things to look for in a hospital and plastic reconstructive surgeon (PRS)  Carrie‘s 15 Things I Didn’t Know About Breast Cancer Before I Got Breast Cancer.

Meanwhile Cancer Curmudgeon wonders if there is a need (yes!) for a repository (wiki-style) of knowledge and views that are not mainstream in cancer land – a handy reference point for the newly diagnosed who don’t fit the current stereotype of breast cancer patient.

Beth Gainer shares information about Cancer Harbors, a new online service that helps people who’ve had cancer navigate survivorship. Founded by Alene Nitzky, a personal trainer and nurse with oncology expertise, Cancer Harbors is designed to help survivors — whether they are just coming out of treatment or have been out of treatment for a while.

Did you experience difficulty resuming work after cancer? If so, Chris would like to hear from you.

Less than 5 percent of adult cancer patients overall participate in clinical trials, and the rate is even lower for patients from minority populations. Lisa tackles the question of why more people don’t engage in clinical trials in a recent post on her blog.

Jen wrote something on her blog earlier last month which really resonated with me. It’s something I have spoken and written about in relation to my own blog over the years. I never wanted this blog to be “just” about breast cancer, but also to include the issues that we as women face together, whether we have breast cancer or not.  Jen’s friend Ginelle captures my thoughts on this when she said, “It’s not just about your cancer or anyone’s cancer. I think of it almost as the struggles we face as women.”

Lisey has coined a fantastic new word “Cangry” which perfectly describes the anger felt by not just the person with cancer, but those who are close to her too. Cangry can simmer under the surface for long after treatment has ended. Cangry can erupt violently many months later. Cangry needs to be acknowledge to be dealt with.

Lots of good information on Triple Negative Breast Cancer on Eileen‘s latest blog.

Belated birthday wishes to Sharon who turned fifty last month and reminds us to embrace the privilege of growing older. As a companion piece read the wonderful post by Ann Silberman who got to mark some joy-filled milestones with her family recently. In her own words:

So my advice for you newly diagnosed metsters is, as it has always been, to take each day as it comes.  You indeed have a sword hanging over your head, but don’t give it power.  It will drop one day, or maybe, just maybe, you will be in the lucky 2% and it never does.  I just know that staring at it above all the time means you miss the joy below.

Both Lori‘s and AnneMarie Ciccarella‘s excitement is infectious as they share news about how we all can contribute to a global cancer initiative called Cancer Base – check it out and take part.

More excitement with the announcement that #BCSM co-founder Alicia Staley, has been selected to participate in
Vice President Joe Biden’s cancer moonshot summit (see also Vickie‘s post on how you participate in the cancer moonshot).

Catherine celebrates Canada Day with pride in her country.

Don’t let anyone minimise your grief. Grief comes in many different ways is the powerful message Helen shares on her blog.

Penny‘s poignant post on how the small things become big will strike a chord in many reading it.

Laura has been sharing some deeply moving thoughts on metastatic breast cancer. She writes, “I’m terminal, but surprisingly not dead yet. It’s a strange place to be.” I was particularly struck by her quote from  Toronto artist Teva Harrison, who writes, “I occupy the liminal spaces, slipping between unnoticed. It’s like living in the shadows.”

Margaret shares her diet for cutting her risk of diabetes and staying healthy.

If you’re on Facebook you’ll be aware of the “Memories” feature which pops up as a reminder of what you were doing on the same day at a previous date. For some people these are happy memories – for others, a reminder of something that has been lost. Kimberly shares her thoughts on the latter in her latest blog.

While we’ve come a long way in openly discussing breast cancer, Katie writes of another subject society would prefer to keep quiet.

Audrey has written about dealing with the side-effects of cancer medication and making decisions which are right for you, which may not always fit current medical advice – not an easy choice to make, but fundamentally your choice to make when you are properly informed.

It’s been six weeks since Jody Schoger died and her loss is understandably still keenly felt, as Kathi‘s loving tribute to her shows.

Excellent post by Kate on “good” cancers vs “bad” cancers.

Elizabeth is deeply disturbed by the level of hostility, fear, and anger which has suffused her country lately and she makes a plea for more compassion: “Fear, anger, shame, selfishness, and sadness are shared parts of our human experience. But so are joy, curiosity, hope, compassion, and charity. Together, we are more than the sum of our parts.” On the same theme, read Brandi‘s heart-breaking poem.

I was fascinated to learn from Elaine about a new web app that helps cancer patients live longer and better.

I totally identify with A Lil Earthquake‘s frustration at Tamoxifen induced weight gain.

Becky makes a plea to researchers who use information gathered from reading patient blogs, to acknowledge the contribution to research bloggers (often unknowingly) make.

There are several divergent opinions in cancer land which elicit very strong views. One of these is the “stay positive” exhortation to cancer patients. Both Caroline and Nancy have similarly strong views on this and while Flo has a different take on the topic,  I feel it’s equally valid. I’m not part of the positive thinking brigade but I know we all different and we need to find what works for us. As Deb Ragosta writes, “we all deal with adversity in different ways, but there is no right way to process a cancer diagnosis. It’s different for every patient, every family member and every friend.”  The great thing about the blogosphere is that we can express divergent views; we don’t have to fit a certain mould.  The main thing is that we respect each other’s right to be different.

When thinking positively seems a step to far for people to say in the face of death,  they sometimes resort to “stay strong”. Beth Caldwell has a few choice words for those who say that to her!

Finally this week, I always love it when virtual friends become “real friends” and meet in real life. It was so lovely to read about Detrice, Rosemary, and Ally meeting for the first time.

Until next week,

Yours in friendship,

Marie xxx