Maintaining a sense of ourselves is one of the great unanticipated challenges of cancer treatment. When you have a brief illness or accident that lays you up for even a few weeks, it pales in comparison to the months or years of treatments we endure as cancer patients. Our bodies and capacities are compromised –– sometimes permanently altered. Friends and family disappoint or leave us. Our work goes undone.
Our changing selves may be less recognizable to those around us. Our appearance is altered, our habits changed. But staying recognizable to ourselves — that is what keeps the cancer from metastasizing to our identities.
Up until now, I have been so immersed in my own struggle, I haven’t had much room to take in other people’s stories beyond the blog posts I read. My friend Sarah sent me the book she wrote about her breast cancer and treatment, and I have finally had the capacity to take it in.
Sarah’s book is about many things, but in large part, it is about maintaining an identity across the years and trials of being a cancer patient.
Sarah is an artist, a gardener, a runner, a maker of beautiful things. Her book gives an account of her journey from diagnosis, treatment, and beyond that is unusually vivid and highly personal. It is an emotional story, told by somebody with a keen sensitivity to her own experiences and feelings.
As with so many of us, Sarah’s cancer upends her life. She immediately feels the intrusion on her identity:
My life is full-time breast cancer now. There is no space for anything else. Researching treatments, mainly, and thinking a lot. [...] Where did my life go? I feel down. How can I recover a sense of me, a sense of pleasure and things that aren’t cancer related?
As she adjusts to this new self, she articulates the discomfort so many of us feel:
It’s summer now and everywhere I look I see women withtwo breasts and I find it so depressing. I am only four months since diagnosis and have been through so much already. [...]
I have cried in joy at the pleasure of being alive. I have cried in pain over the loss of my breast. I have cried deep into the night, I have lain awake worrying about death, my death. I have felt isolated and alone, I have wept in hospital waiting rooms, I have nervously examined my own blood as it goes off to be tested, wondering if I could see anything wrong with it, how my own body has let me down like this.
The life of a patient leaves her feeling lost, like she is becoming somebody unrecognizable:
Spending the day in pyjamas. I didn’t even possess pyjamas before breast cancer. Why would I? I would never laze around for days on end. Ever. Am I turning into a slob?
Like so many of us, she notices others’ awkwardness in interacting with her:
I look so well, it seems to confuse people. I’ve been ignored by people, who walked straight past hoping I wouldn’t notice; and then there are those who pat my shoulder and look at me with a sort of pity that seems to imply that I might die soon. Is that what they think?
Even medical people struggle to bridge the divide between the healthy and the ill. In one episode, Sarah tries to be understanding of a consulting surgeon. He, like many of his colleagues, has no idea what she is experiencing.
I try to be nice to him, but I’m not getting through here. No, I think he has absolutely no idea what it feels like to get a cancer diagnosis, to lose a breast, to face treatment decisions that are weighted with life and death statistics, and the emotional impact of all that. To have this chemical and surgical menopauase. Just what it feels like, I can tell he has no idea.
The power of Sarah’s story is how she never stops being Sarah. She remains inquisitive, reflective, passionate, sensitive, taking classes in botany, sewing her own new beautiful bras, knitting, camping on the coast with her beloved Ronnie.
There is no time left for artifice, for superficial niceness, for anything that does not fill my heart with complete joy.
At the book’s end, Sarah makes it through her treatment. Even then, she frames her experience in her own terms, giving it her own meaning. She rejects the term survivor. As she says:
I don’t feel like a ‘survivor’, I don’t feel I want to be in a ‘special’ club, I don’t feel that I am in any way special because of the disease I happened to have had.
As I read Being Sarah, I found myself this book to be mandatory for all who work on oncology wards. We are lucky when we have medical people who are empathetic to our experiences, but in my own estimation, it is beyond the grasp of too many of the doctors and nurses we encounter.
I am not alone in my assessment of the value of this memoir. Sarah’s book won a commendation by the British Medical Association Medical Book Awards.
Sarah describes the emotional life of a cancer patient beautifully. I kept having those moments of recognition, of having my own experiences reflected back in a new light. Even where my experiences diverged from hers, I found her honesty gripping and raw. Like the rough coastlines and beautiful gardens that bring Sarah delight, her story has a wild, natural beauty that reminds us of the unexpected tenacity of life.
I haven’t been blogging as much lately. On my facebook page and on twitter, I have continued my work as a curator of cancer stories, focusing on social and emotional issues in particular. My own cancer treatment has happily taken a backseat to my very full life, but I enjoy monitoring the internet for information and insights, and keeping up with the wonderful people I have met via social media.
These relationships are rewarding. They help me harvest the wisdom of my experience and share it with those who are earlier on. They allow me to learn from others whose experiences differ from my own, putting my own in perspective and helping me better understand.
But mostly, we lend each other support. We celebrate good news and send comfort with the bad. It takes time, yes. But it is time well spent.
Why do we, who are finished with the Big Treatment, want –– or even need –– to take time to pause and notice? What does it mean to let in the sad, happy, beautiful, heartbreaking, and absurd parts of of our friends’ situations? Why not just move on?
I read this poem last night and found it helpful in explaining.
I have always had a healthy carpe diem streak in me. I like to let loose and have fun.
Less than two months before my diagnosis, I had a conference in Amsterdam. In addition to attending scholarly talks and meeting with colleagues, I enjoyed the city with friends.
The boat ride pictured below was particularly memorable. Cruising through the canals with a bottle of wine is so lovely.
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I had cancer in this picture. I had no idea.
I am gearing up for surgery on Thursday. I am, in the words of my middle child, getting ready to be pulled under by the cancer sea once again.
Only this time, I have had some warning. I have some of my health and fitness back again. Instead of the shock of diagnosis with the uncertainty of the treatment, I know I’m going in for some pain, but I will get something on the other end.
I’ve managed the prospect of more suffering by trying to use a principle of opposites: I’m filling up on Happy.
In fact, I’ve been on a bit of a carpe diem bender.
My family & I took off for a long weekend at the beach.
A week later, I had a work trip to Rome. Once again, in between official duties, I found opportunities to have some fun.
Can you see the Coliseum in the background?
I ate yummy food and saw beautiful art.
That granita was amazing.
Then, as if that weren’t enough, I went back to Holland to give a talk at a university.
Of course, I managed to fit in some fun.
Look! I’m back in the same boat!
As a final hurrah this past weekend, the girls and I went to a Taylor Swift concert. She is their musical idol.
Watching my daughters grinning from ear to ear, singing every word as they watched her show, filled my mother’s heart with loving joy.
Could it get any better?
Actually, yes.
Two seats away from my eldest sat Martina McBride. She is a hero for many of us cancer survivors.
She wrote an amazing song called “I’m gonna love you through it” that seriously could be written for me.
I went up to her and let her know how much her song meant to me. She was incredibly gracious.
Meeting Martina reminded me that I can get loved through this part, too.
When my body is hurting in the coming weeks, I will be able to close my eyes and bring up lots of great moments.
Trust me. I’m having fun, but I will never, ever say that cancer is a gift.
Life, on the other hand, with all it has to offer, most certainly is.
———–
If you haven’t seen Martina McBride’s video, get out your hanky and watch it now:
“♪ Cancer don’t discriminate or care that you’re just 38 with three kids who need you in their lives.. ♪.”
Twenty five years ago, I began a friendship that broadened my world. A French exchange student stayed with us in our home. I enjoyed showing her my 15 year old’s version of America for the summer. Soon afterward, I got to take a tour of her 18 year old’s version of France.
I spent two summers abroad with her family. My French became strong enough for me to enter the advanced French literature seminar in college.
But I haven’t been to France in over two decades.
J’ai beaucoup perdu.
This past weekend, a little bit of France came to me. I had another lovely visit with my French friend (that’s how she signed her letters back in the day and continues to sign her emails now).
Only this time, she brought her family.
I didn’t know what it would be like to try to summon up all that dormant vocabulary and grammar, especially after the number chemo did to my brain.
I’ll be honest, it felt a bit rough at first. Lots of misconjugated verbs and comment dit-on‘s.
My friend and I can weave in and out of all sort of versions of Franglais, but her two girls and husband counted on me for some French conversation. Not to mention my own family. My husband speaks fairly functional French but the kids needed to be let in on the action. I found myself playing the role of translator quite a bit.
But then, I crossed over to actually producing thoughts in French, to hearing myself what the song and rhythm of the language should be without having to overthink each utterance. Every time a synapse connected and a word came back –– pop!–– I wanted to do a fist pump.
Becoming plural — having a we to talk about –– was not the only significant change to my language in the past 20 years. As teenagers we spoke in singular tenses — je et tu — but now we are very, very plural.
In part, the gaps in my vocabulary reflected the changes in the world –– I needed words for “email,” “going online,” “googling.”
But the missing words also reflected changes in my own life. I need much more medical vocabulary now that I am a 40 year old cancer survivor than I did as a 20 year old college student with a Eurail pass and a backpack.
I have picked up some of the vocabulary from reading the blog Maison du Cancer and by tweeting with the amazing French survivors that we often refer to as les Cathies, Catherine Cerisey and Catherine Malhouitre. So I knew radiothérapie, chimiothérapie. But I needed some help describing consultations with le chirurgien. That word is a mouthful.
All of these words rushing forward, all of these blanks to fill in: it made me remember, once again, how deeply our language is connected to who we are.
Why, for example, is there no good French translation for “silly” but English is so impoverished when it comes to food that we need to borrow French words like gourmet and the even better gourmand?
There are whole swaths of experience that can be kept at bay when we have no words to describe them.
Which is, in part, why I blog. We share our stories and put words to the otherwise indescribable experiences cancer brings to us.
When we tell our stories, they are no longer invisible. We learn from each other and invent the words and images we need to feel seen.
Our stories become a part of a collective strength, and then we are no longer alone.
