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Today, on  National Cancer Survivors Day, I am asking the question who are cancer survivors and is it really necessary to set aside a day to celebrate survivorship?

The terms cancer survivor and cancer survivorship  have different meanings to different people, and how we refer to this growing population of people living with cancer has stirred some controversy. Here is just a sample of some of those in the blogosphere for whom the term survivor is an uncomfortable label:

I don’t like labels very much. I tend to avoid them whenever I can. The survivor label is one that makes me uncomfortable for various reasons ~ Nancy’s Point

I am conflicted about the term survivor.  To me, a survivor is a person who has been utterly victimized, who is powerless and suffering at the hands of something or someone that is about as close to pure darkness as exists in the world. ~ Uneasy Pink 

I’m not comfortable with that word, “survivor,” which connotes some sort of superhero who has battled and defeated the demon known as cancer….The problem is that on a subliminal level (or maybe not too subliminal), there’s a blame game going on: those who survive did something heroic; those who don’t survive just weren’t tough enough ~ Calling The Shots

Survivor, to me, sounds too triumphal, too final, like it’s finished – all over. But breast cancer is not like that – as I am finding – now approaching four years from diagnosis ~ Being Sarah

So, I am faced with a dilemma. I use the term cancer survivor but I too am sensitive to labels and words and their meaning, particularly those that make the wearer feel victimized and helpless. But what should we call this phase for those of us for whom active cancer treatment has ended? No one has yet come up with an all-encompassing term to cover it, apart from survivor.

Perhaps you too struggle with the label. Or do you embrace it as a sign of having come through a trial and survived? What if you are living with metastatic cancer? Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?

My next question to you is do we need to set aside a day to celebrate survivorship? Is it perhaps too triumphalism? What of those who didn’t “survive” cancer on this day?  Or is it a good thing to have a day when we unite together in a show of solidarity of our collective survivorship?

I don’t have the answers to these questions, but I would love to discuss them with you, so please join in the discussion and let us know what you think of National Cancer Survivors Day and survivorship.

Related Posts

Defining survivorship

Why words matter

Survivor loneliness of women after breast cancer

The story doesn’t end here…

Cara Novy-Bennewitz

I regularly get requests to review books on breast cancer and when Cara Novy- Bennewitz sent me an advance copy of her book, Diagnosis: Breast Cancer: The Best Action Plan for Navigating Your Journey, I was delighted to be able to review a book by someone I had come to know online.

Now at this point you may be thinking what’s so special about yet another breast cancer book hitting our shelves, but let me tell you this book is special! What makes Diagnosis: Breast Cancer stand out from the rest is how eminently practical and down to earth it is, and Cara’s remarkable ability to distil complicated and often overwhelming information into an easy to understand and digestible format.

This guide helps the reader organize their thoughts and to formulate a step by step action plan by giving them the tools they need. Standout features include worksheets to help you keep track of all your paperwork and medical expenses, information on understanding your pathology report (something I am still confused about 7 years later) practical guides to treatment options and much more.

I found myself reading Diagnosis: Breast Cancer while thinking how much I wished this book had been available to me at the time of my own diagnosis. My collection of appointment cards, information booklets, receipts, and other documents I gathered throughout treatment were disorganized and frankly unhelpful. I felt overwhelmed with the complexities of decisions to be made and unfamiliar medical jargon.  Imagine having a tool to hand which would help you plan and keep in control of your information at a time when you feel so overwhelmed and confused?  Well, this book is it, and I cannot recommend it highly enough.

Next week I will be featuring an interview with Cara, who in addition to being the author of this wonderful book,  is a breast cancer survivor and a certified cancer exercise specialist and medical ambassador for The American Cancer Society. Cara will also be giving away a copy of her book to one lucky reader.  So stay tuned…

Click on image to read the reviews of Diagnosis: Breast Cancer on Amazon

Weekly Round-Up

girl_with_lassoTime for this week’s round-up of the best of the blogs 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. Remember, if you have written or read a post recently which you would like me to share with readers, then please leave a comment below.

I am starting off with a round-up of the bloggers who took up Anne Marie’s writing challenge to us this week. Here is what she prompted us to think and write about:

What are those phrases, those words, those things you’ve heard spoken (or written) that have caused you to become irritated?  Annoyed?  Angered to the “I’ll seriously hurt you” point?  Gotten cranky over?  Were they said to you?  About you?

Jan answered the writing challenge on her blog and made the excellent point that she counters the insensitivity by educating the public through her talks and presentations. Beth made me laugh out loud as I read her responses to the insensitive comments that have been said to her – be warned! some of them are jaw droppingly crass. And Lori’s contribution to the debate is both eloquent and intelligent  – another must read.

Lois continues the series of posts, interspersed with her poignant and beautiful poetry about losing her mother. I find it heartbreaking to read these, but am also grateful to find what is in my heart echoed in her words.

Poetry is also the order of the day on The Paw Paw Salad blog and Yvonne’s mother is the subject of her latest post, as she recounts the love and care which goes into the packages crafted lovingly by her mother for her.  There is a lot to ponder in Yvonne’s post, and I encourage you to read it and reflect on its contents.

Isn’t it wonderful when we learn new things about our friends in the blogosphere and find ourselves saying I never knew you did that – and so it is with Jackie this week, who revealed herself as a biker chick. I loved how she draws analogies between how motorcycle riding is like breast cancer.

Debbie hosted her first guest blogger this week,  Annette Ramke, co-author of Kicking Cancer in the Kitchen : The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer.

Kathi is crowdsourcing opinions on breast reconstruction on her blog and her post will be of great help to those who are about to go down this same road. I thought her method of  choosing a surgeon to perform the operation makes a lot of sense.

Florence has shared an incredible story with readers about how cancer taught one woman to love life again and Lani has a moving tribute to another cancer loss to our world on her blog.

Renn has found a post on her blog that she wrote exactly a year ago, just after her cancer diagnosis, but before her treatment began. As I said in my comment to her, I think it’s incredible when we can look back on how far we have come on our journey through our writings. Nancy’s Point is also reflecting on her own journey with cancer as she writes about how the painful memories of her bilateral mastectomy live on  – a theme also echoed in Bringing Up Goliath.

And now I want to introduce you all to a new (to the round-up) blog by Audrey Birt. Audrey is the Director for Scotland of Breakthrough Breast Cancer and has recently been diagnosed for a second time with early breast cancer. This week, she writes about mindfulness and music – a wonderful combination indeed.

School’s out for summer and Nancy‘s anticipation and excitement at the summer days ahead is infectious. “When you are looking forward to the promise of something you have come a long way forward on your journey” wrote one of Nancy’s readers and I think it is a wonderfully true statement. I hope wherever you are in the world, that too will make happy memories this summer with your loved ones.

Yours with love

Marie xxx

I am so pleased that Anne Marie has taken up my call for writing prompts and her challenge ties in nicely with yesterday’s Why Words Matter theme.

Here is Anne Marie’s writing prompt

What are those phrases, those words, those things you’ve heard spoken (or written) that have caused you to become irritated?  Annoyed?  Angered to the “I’ll seriously hurt you” point?  Gotten cranky over?  Were they said to you?  About you?

Check out Anne Marie’s response here.

So, I am going to join in with Anne Marie, not with one but with several “helpful” things said to me in my fertility challenges over the past 4 years.

“It’s God’s Will” (doesn’t help me)

“You could always adopt” (complicated by age and history of cancer)

“Just relax and it will happen”  (you try relaxing under this kind of stress)

“You are so lucky to have all this free time to do what you want and go where you want without kids hanging out of you” (but we want kids hanging out of us)

People don’t mean to be hurtful when they say these things to couples struggling with infertility, but nevertheless their words wound more than they realize. I am putting this out there as a plea for sensitivity when speaking to your childless friends. If you find yourself at a loss what to say or an impulse to offer advice, don’t. Just say a heartfelt “I’m sorry” and that will suffice..believe me.

Why Words Matter

Did Robin Gibb lose his battle with cancer?

Last week on their blogs, both AnneMarie and Lori wrote about the power of words and indeed this is a subject I have written about myself in the past.  I believe it is important that we raise awareness of the need for more sensitivity to how words, phrases and labels matter, but despite our raising our voices, it seems this message still isn’t getting through.

In a recent newspaper article by British journalist and broadcaster, Jenni Murray, she bemoans the bellicose language used to announce Bee Gee, Robin Gibb’s death.

It was sad to hear of his death. But at the same time it is infuriating to read and hear, over and over.. that he “has lost his battle with cancer..I’m at a loss to know why, despite a number of us who’ve been through the dread diagnosis and subsequent treatment pointing out that such pugilistic terminology is entirely inappropriate, we continue to be given the impression that death from cancer is somehow an indication of failure to have the moral fibre to fight and defeat it.

Jenni Murray was diagnosed with breast cancer a few years ago and goes on to say, “supposing I’d crowed about my “victory” or put my survival down to the power of positive thought. What impact would that have had on the young women who had a more virulent strain and knew they were dying? “

It was interesting to read the comments from readers, many of whom agreed with Murray. (although inevitably there were those who disagreed vehemently).

Mightyatom9 writes:

Whenever cancer is mentioned in the media, I know, with a sinking heart, that the words battle, fight and being positive cannot be far behind. Cancer is an illness, not a military campaign - some people get better, others do not.

For me, the expectation that I should always be positive was a terrible burden.  I felt guilty and inadequate that I couldn’t be brave and I used to think, if the cancer came back, people would blame me because  I hadn’t been positive enough.  Can I really be the only person to have felt this way? I must be, if all I read and hear in the media are anything to go by.

No-one is more surprised than I that I am still here 13 years after being treated for a very aggressive Stage II cancer.  I take no credit for it – my survival is down to my good fortune and superb medical care

And kmlydon makes the point

Jenni Murray’s piece says something that desperately needs saying.  The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. A much better way to conceptualize cancer is to speak of “living with it,” for as well and as long as one can…why don’t we all agree to say that a person died after living with cancer for X amount of time?

Dr Don Dizon writing this week in ASCO Connection,  the professional networking site for ASCO’s worldwide oncology community told us how he has become more “ sensitive to words and phrases, particularly when they are used in reference to patients, treatment, and circumstances surrounding recurrent disease…we as an oncology community must commit to a concerted effort to monitor the language of oncology. Words are powerful, and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

Words matter – do you agree?

Many of you will know of, and some of you will have joined me in taking part in the WEGO Health Activist Writer’s Montha month dedicated to the art of writing about health.

I absolutely loved the challenge and the places it took me on my writing journey. It was also wonderful to read and see where others went on their own journeys.

I was surprised and delighted to be chosen as the most inspiring writer of the challenge – an honor indeed, as to me each one of the participants was incredibly inspiring.

Many of you had said that you would have liked to have joined in with the challenge, but a month of writing daily was too much of a commitment. I can understand that – so it has been fun to join in since then with random challenges set by bloggers such as Jenn and Renn (nice rhyming there).  And it got me wondering… how many of you would be interested in continuing with these occasional writing prompts?

Let me know what you think and if you would be interested in hosting a writing challenge on your blog?

Mindful Monday

Instructions for life: Pay attention. Be astonished. Tell about it.

~Mary Oliver~