The following is a blog I wrote a couple weeks ago for Cancer Fight Club. It is about a Metastatic and Advanced Young Adult Cancer Retreat I went to last year. I have for a while, been trying to get my head around what that few days have meant to me. How important it is to make connections. How that foundation and being part of that community has allowed me to feel confident in who I now am. It has taken me a year to start to process what was a very unexpected and profound experience. This retreat came about because a dear friend of mine Alicia Murchant spoke out about how the cancer experience is different for those of us with advanced and metastatic disease and we need programming and support that reflects those differences.
It was there that I first felt it. Sitting in an intimate and understated room in the middle of a forest surrounded by unfamiliar faces. Gentle teasing, warm smiles and laughter filled the room and seemed to bounce off the walls. I was part of a community. I had a place to belong. That feeling of belonging was reflected in the faces of my peers. In their affection and warmth towards me – a stranger – and towards each other.
A hearty laugh erupted from a young woman with sparkling eyes as she got up from her seat and playfully teased one of the facilitators about a new tattoo. The facilitator laughed. The room laughed. There was empowerment and community in that laughter. There was strength in the playfulness. Intuitively I felt accepted and embraced and part of a whole. Finally I could release my filters. I could drop the barriers that I had built to protect myself. In that moment I was free from the self imposed guilt I felt when I told my story exposing cancer’s underbelly. The dark side of cancer. The cancer that no one likes to talk about. Cancer that is incurable and eventually terminal. In that moment, I became a member of a community. A group of people connected by something that we cannot change or control.
There is something about social gatherings that always scares the crap out of me. I usually arrive filled with nervous anticipation. Afraid of the unknown. Afraid of feeling like an outsider even when I’m facing a gathering of like-minded people. This may stem from the fact that I am often unsure of my ability to make connections. Afraid of not being vulnerable enough and being too detached. That I won’t be able to let people in. My husband is my character foil. He flourishes in groups both big and small. He anticipates social gatherings with a sense of ease, excitement and confidence. I will often find myself blurting out to someone in forced casual awkwardness “So this weather…” This is usually followed by the sound of my feet shuffling as I try to force a smile.
It was with this nervous anticipation that I, accompanied by my husband and a close friend with advanced ovarian cancer entered La Petite Auberge de Jouvence in the Eastern Townships. We were early, which is usual when travelling with my husband. The building felt warm, intimate and inviting. A wood fire crackled and reflected off the comfortable seating. A wide panorama of windows revealed that we were situated deep in a forest and overlooking a creek. I settled down by the fireplace and awaited the group’s arrival. Unlike the majority of participants we had driven from Toronto. We had found childcare, my husband had taken time off work, and we had driven 7 hours because this weekend was important. This weekend I hoped to create connections and be part of a community.
I am 37 years old and I have stage four, metastatic breast cancer. This is the bad kind of breast cancer that no one really talks about. It is incurable and will ultimately take my life. As with most young people my age I am in the thick of my life. I have two small children and a budding career as an architect. Until cancer I was healthy, active and ambitious. I had patiently begun to build my life. I had even started to discover the things that drive me and that make me dream without limits. My life was just starting to take flight when in an instant the world crashed at my feet. The diagnosis of metastatic breast cancer pilfered my drive, my dreams, my future, my identity and my ability to make connections. From the very moment the words “incurable” and “you will eventually die” crept from the strained lips of my oncologist, I felt alone. Alone in a community who loved me. Alone with my grieving husband. Alone with my grieving friends and family. Alone in my own grief.
It was my husband who initiated outside support for me. I was too enveloped by grief and anxiety to reach out. He contacted friends, family and established connections with various cancer organizations. I went to local events, young adult networking groups, conferences, lunches, art classes, meditation courses and film festivals and found each time I would leave feeling more isolated and in tears. Maybe it was the awkward silence when I disclosed my diagnosis. Maybe it was when someone would change the subject when I tried to talk about my anger, my fears, my sadness. Maybe it was when I was directed to be more positive when I tried to face my mortality. Maybe it was when speaker after speaker told only stories that reinforced cancer as something to move on from. Somewhere within those moments I started to build walls and barriers to protect how vulnerable and alone I felt.
It was there, in the Eastern Townships, sitting safely in that room, in a group of my peers that I finally felt free to grieve, to laugh, to put words to my inner demons. I began to allow myself to address my pain and my guilt. It was in this community that I finally began to break down my barriers and focus on living. There were late nights filled with laughter, long walks that fostered connections. We talked and listened. We found the freedom to discuss our dreams, our ambitions, our darkness, our families, our struggles and our accomplishments. We gave space for individual grief and for group grief. We laughed till we cried and cried till we laughed. We felt empowered in silences. Empowerment in our acceptance. Empowerment in our voices. Empowerment in our vulnerability. Somewhere between the structured and unstructured. Somewhere between the laughter and the tears we found community. I found community and most importantly I found myself.
In that moment, in that room, I found my strength. I found my voice.
Categories: My guest blog from another site, Stories
Anna – This is beautiful, poignant, and real. Thank you for sharing it. We met at OMG and I have been following much of your writing. I’m about to embark on designing a customized Fresh Chapter program for the metastatic breast cancer community, and I am learning so much from reading your posts. Thank you for being willing to share your story and I hope our paths cross again soon. Terri
This part really resonated with me: Maybe it was the awkward silence when I disclosed my diagnosis. Maybe it was when someone would change the subject when I tried to talk about my anger, my fears, my sadness. Maybe it was when I was directed to be more positive when I tried to face my mortality. Maybe it was when speaker after speaker told only stories that reinforced cancer as something to move on from. Somewhere within those moments I started to build walls and barriers to protect how vulnerable and alone I felt.
I’m an 11 yr bc mets survivor. I have tried support groups and online communities and yes it is great to ‘find your tribe’ as it were. But I caution against putting too many eggs in one basket… Because this community will also break your heart… You will make some of the deepest and closest connections ever with some who also share your interests, passions and vales. But someone inevitably gets hurt as the ravages of the disease takes it’s toll.
So 11 years on and the passage you wrote continues to describe how I feel.
All is not lost! I have had time to pursue my interests and passions beyond my expectations. I started a Bookclub which celebrates ten yrs in 2015, I have travelled extensively and hope to do more (though not as strong as I was), I explored art and art history experimenting with various media before finding a special affiliation with beading and various related crafts. Mainly self taught, I am now quite proficient.
My point… I do hope you have found yourself… And you have also found a way to bring yourself peace. The creative and meditative aspects of beading and jewellery making do it for me. What will it be for you?
Thank you for your post. That passage referenced above was spot on and unfortunately will continue to be so. Our society continues to have difficulty with death and only those closet will take the time to learn how to listen and talk about it with you.
Meantime may the researchers have the breakthrough we need to truly make this a chronic not terminal illness.
thanks for share it
This is beautiful, and so deeply honest. I hope you are doing well.
My scans came back NED again.. which is great. Its funny I’m finding as each scan come the more debilitating it is waiting for the results. I keep getting more and more invested in “just one more cycle… all I need is one more cycle” its just never enough. I can’t help it I’m addicted to be being able to be fully present and alive!