When I see professional football players wearing pink cleats, gloves and ribbons in honor of Breast Cancer Awareness Month, I am impressed. I love that with the power of marketing and merchandising, millions of people now associate the color pink with the not so colorful disease of breast cancer. I love that macho sports heroes are man enough to wear the color pink in honor of their wives, mothers, sisters, and brothers. It’s a wonder that the NFL has decided this is good strategy for their league.[i]
As I write this blog today, 1500 people in America will die of cancer.[ii] If that number of casualties was a daily war statistic it would be all over the news. But breast cancer is a family issue that primarily affects women, not an issue of “national security,” so instead, we get the color pink.
I could write a political blog about how all politics are personal, but today, I want to talk about just the personal – about you, me, and people with cancer. I want to write about cancer during treatment, and also the long arc of cancer’s effect.
Six years ago I was told that I had breast cancer. I was shocked and blindsided, this news arriving on the occasion of my first ever mammogram. I never got to the “routine” part of mammogram; this was the first time I ever stepped up to the machine. “You are the poster child for early detection,” the radiologist who read the digital picture, said. I was 41 years old, with an infant and a toddler, a small business owner with dependent employees and an international consulting practice.
I was fit, busy, and not at all thinking about my physical health, or my vulnerability. It was so out of the blue, and the practical implications felt so enormous, I was literally speechless. In a manner of speaking, this speechlessness has carried on until today, as this is the first time I have spoken/written publicly about my cancer.
My Wake Up Call
In our work and writings, we speak about wake up calls.[iii] A wake up call is a moment in time, an event, literally, when you “wake up” and have to take a look at your life.
My breast cancer journey has been one for me.
For the first nine months the “call,” in this case, was loud and assertive as I had two surgeries, underwent treatment, lost my hair, had my white blood count drop so low I was hospitalized for weeks at a time, went code blue from a drug allergy I never knew I had, had to set my professional practice aside and accept help in ways I had never imagined. I was in a serious state of dis-ease. There really was no way to avoid the realization that something was happening in my life. The “wake up call” aspect took place more slowly as the impact of the situation sank in.
The sudden interruption to my life as I was living it, initially, felt cruel and scary. I was outraged at how “inconvenient” this situation was for me. Honestly, that was my first visceral reaction.
I was thrown into a healthcare system that saved my life, but wasn’t kind.
I had a profound loss of my professional identity. (This turned out to be more fear than actual, but when I was in it, it felt very, very real.) Normally, a physically strong person, having been an active athlete all my life, I was now very weak. A career scholar-practitioner, I now could neither practice, nor think, my mind was so clouded by the medications. Life continued around me as I became a bystander to anything that wasn’t about me.
My physical needs narrowed my perception, demanding that I focus primarily on breathing, walking, sleeping.
I wasn’t able to be the parent, partner, professional or friend I wanted to be. For the first time in my life, my needs overtook my ability to be there for others. I say all this because I want you to appreciate the complexity cancer brings into our lives; how the affect of cancer is so much more than a physical ailment to be medically addressed, or emotionally addressed through fundraising and football players wearing pink shoes.
“The Big C”
Last night my partner and I watched two episodes of the HBO series, “The Big C.” It is a fabulous series I watch with a bit of a cringe in me. As we watch it, the show evokes memories and sparks conversations about cancer’s affect on us. Laura Linney plays a middle-aged woman, Cathy, living with stage 4 melanoma. The series so wonderfully shows life with cancer. With cancer and the specter of death in the room all the time, life is mundane, and profound, simultaneously.
I “woke up” over time, and am still metaphorically, rubbing my eyes and waking to the life I live. This extended experience of self awareness has heightened my recognition of my core values.
Almost every day, I feel the absence of the anxiety I used to live with when I thought what I was doing was the most important thing to be doing.
Before cancer, I lived mindfully, but maybe not so attuned to the heart of my matter – to the relationships I am in at home and at work. These days, I live with a palpable sense of what is important to me, and a visceral belief that even when I die, everything will be ok.
As I journeyed through my period of active engagement with breast cancer, what I noticed was how many people were affected by my illness. People cared, people wondered, people were inconvenienced, scared, missed and worried about me. People rose to the occasion, or ducked out the back too triggered, frightened or awkward feeling to engage.
My Breast Cancer Social Web exercise
Here is an exercise you can do to become more aware of the people in your life who may be affected by breast cancer. Put the “patient” in the middle and work out from there. Taking a few minutes to fill out your Breast Cancer Social Web will help you be more intentional and mindful of the different perspectives and players. Click here for the exercise.
Now, that you have a more clear sense of who is in the web, here are some tips that will help you best manage the opportunities and challenge of breast cancer in your social web. I want to offer these tips to take our collective conversation about breast cancer further than pink merchandise or football players’ uniforms. I want to speak to people with cancer and their families, and to friends and associates of affected people.[iv]
Fran Johnston’s Tips for Friends, Associates, Family and Self during Breast Cancer:
1) Friends and Associates: You are critical in this conversation. When I was dealing with the disease, my friends and associates rose to the occasion. I had a major client who graciously accepted my substitute consultants even though they had expected me; many other clients of our firm expressed sympathy and offered whatever help they could, including introductions to superstar surgeons, access to support networks, articles, etc.
We discovered the underground network of people affected by cancer as professional associates told us their cancer stories and empathized with me, and with Annie, my friend and business partner who shouldered an even bigger load. The offers of support mattered more than these clients might have imagined. My friends delivered meals, offered to babysit, helped us find a nanny.
In my extended social web, unexpected individuals rallied and delivered support in many different forms, people sympathized and sent cards. The cards mattered because they helped remind me that I hadn’t been forgotten as I stepped off the professional train. People I didn’t even know have been affected by my cancer journey. Money was raised, miles walked, t-shirts purchased, and importantly, stories shared.
Friends and Associates Tip #1: Notice people in your life who have loved ones currently dealing with cancer. Ask about the situation, inquire about the impact, express your empathy using stories from your own life.
Friends and Associates Tip #2: Be generous in your expectations as people and groups shift due to unexpected health issues. These small and large acts of kindness during stressful and uncertain times help to steady the suffering system/group/family.
Friends and Associates Tip #3: Old fashioned, uncomplicated acts of community matter – bring food, take the children, scan for needs.
Friends and Associates Tip #4: Keep walking, raising money and talking about breast cancer. Pink matters. We need better drugs, emotional support for affected people, and education. Early detection saves lives.
2) Family and partners: The closer we are to the person living with cancer, the greater our daily awareness usually is. One of the most powerful elements of “The Big C,” is the portrayals of Cathy’s husband, son, and brother. When I was in treatment, my partner, Laura, worried about me, took care of me, shouldered more child caring activities and lost a working partner in running the household.
I tried, but now with the power of hindsight, I can’t remember anything about the kitchen remodel we were doing at the time, and I know the house was a mess. Other peoples’ lives move on, too. I regret not being more emotionally present for my dying father-in-law and my partner and her siblings who were losing their Dad. I know my sisters were impacted by my cancer – one was recovering from her own cancer treatments and could have used more support from me, and the other must have been overwhelmed by the fact that her two sisters were simultaneously dealing with breast cancer.
Family Family#1: Take care of yourself – emotionally, physically, and relationally. The only reason my cancer was discovered was because my sister insisted that I get tested. I had been taking care of her during her treatments, and then boom, I was in my own cancer story. Cancer affects families.
Family Tip #2: Talk about your feelings with each other and friends. Partners, sisters, nieces, daughters and sons, can all become aware of their own vulnerability both to the loss of their loved one, but also to cancer themselves. This conversation may come quickly and easily or could be a wake up call that lingers just out of consciousness.
Family Tip #3: Practice Hope while Remaining Present: The future is always uncertain, and especially with illness. Hopeful thoughts that are also respectful of the present reality, spark positive emotions. Positive emotions in turn have been proven to have health benefits.
The scientific medical community is duty bound to give you the “truth” about any number of possible negative outcomes and/or side effects that could occur. Hold the potential negatives lightly, while intently imagining the best. Stay optimistic.
3) People with Cancer: Finally, I want to speak to my fellow cancer journeyers. Each of our situations is different because of disease profile, personal responses to stress, support systems, and approaches to life. Despite all these differences, we share an experience that touches us in many ways and over a long period of time. I find I am still learning from this wake up call. My physical self is forever altered – I was cut, radiated, and chemically altered at the cellular level. My skin, muscle, nerve endings and flesh have changed. My metabolism shifted. My hormonal system went haywire. I am still alive.
Six years later, I am adjusting and growing. I am not the same person I was before breast cancer. I am stronger in a holistic sense. I am more clear about the value I place on my physical health, emotionally I am stronger for now realizing more about who I am, my spiritual self is definitely more developed from facing my own mortality and appreciating the love and support that appeared when I needed it. Relationally, I hope that my greater mindful attention to the key relationships in my life, and the new ones that I form, communicates the love that I feel.
My wake up call guides me consciously almost every day. Each day, I try to pay attention. I am mindfully awake, aware and attuned to the people I am with, to the decisions I am making, to the choices I see. Because of cancer, I don’t take life or health for granted. I have realized cancer’s affect is not only one of life and death, but of health and wellness. I acknowledge my fear of recurrence, not primarily because of questions of mortality, but because treatment sucks. This awareness helps me be grateful for every cancer treatment free day I have, and empathetic for my fellow cancer (or other serious illness) journeyers who are in the midst of life saving treatments.
At this point in my journey, I offer the following tips to this special group of people.
Person with Cancer Tip #1: Listen to the wake up call when the time is right. Wake up calls can be sudden or subtle. Let your cancer experience direct your attention to what matters the most to you. Prioritize the fact that it’s your life, try and make it what you want.
Person with Cancer Tip #2: Accept love. The “c” word gets peoples’ attention. Let the attention that is loving, compassionate and kind, enter your psyche and world. Notice the love, skip the troublesome people who let you down. Lean into love—that is the energy that helps us heal and grow.
Person with Cancer Tip#3: Talk about it. People learn from stories, and grow from telling them. When the subject seems appropriate, or you are moved to speak, open up and start listening and talking with your family, friends, associates and even strangers. You will grow, they will learn, and our underground network will be strengthened.
Fran can be reached at email@example.com
[ii] National Institutes of Health http://seer.cancer.gov/csr/1975_2007/results_single/sect_01_table.01.pdf
McKee, Annie, Boyatzis, Richard, Johnston, Frances (2008). Becoming a Resonant Leader: Develop your emotional intelligence, renew your relationships, sustain your effectiveness. Boston: HBR Press.
[iv] I am consciously not using the word “patient” or “survivor” as within the breast cancer circle there are differences of opinion about the meaning of these words.