On Sharing the Journey

When I was diagnosed with breast cancer, I had to do a crash course in getting comfortable with the fact of cancer in my life and figuring out how to be in relation to our friends, family and colleagues. I had always been deeply uncomfortable about cancer - and have always thought the worst when I heard that someone has cancer.

The question we faced was how open we wanted to be bout my cancer (and about Angie’s serious injury). In the end, we chose to be very open: this was what was happening in our lives and to know us (and care for us) meant sharing the information. We invited everyone close to us (liberally interpreted) to join us on the journey. We didn't tell everyone we know only those we felt were within our circle of caring. It took time and energy on our part to do so, but we so received much helpful, sustaining energy in return. We also recognized that everyone takes their own approach about how open to be about their cancer. The choice is very personal and contextual.

We have made several observations about this process.

First, accompanying a person on their cancer journey is at their invitation. This is not something others should barge into or take control over: the person with cancer gets to set some boundaries. We found it easier to be inclusive and fairly open about how things were with us and what we needed. People shared experiences with us of the burden (and blockages) they’d felt when friends had told them they had cancer but asked them to tell no-one else. We think there is also a ‘natural catchment zone’ for the news rather than it spreading virally.

Secondly, even with an invitation and openness, not everyone has the capacity to come along with you. There is emotion and risk in sharing a cancer journey. Recognizing this element has given me some insight to my (in)actions with some friends or colleagues who've had cancer. The heart-break of losing my brother to cancer (when he was 22) and my mother (when I was 33) and other close relatives left me with little capacity to take the risk of new cancer journeys. Seeing this has allowed me to forgive myself and I hope, allowed me to reopen my own heart to others who face cancer in my communities of friends, family and work. I had no choice about whether to go on my own cancer journey, of course. I am so grateful for those who could go with me.

We have realized that there are many dimensions to a person’s choice about sharing the news and reaching out to others. [1] We have also come to see that there are gifts from an open approach for us and for our community. There are also some surprising challenges and deep learning.

Sharing the news and keeping our community up to date, demystified cancer and dialled down everyone’s discomfort. We organized an Open House to gather our community after I was diagnosed and about to begin treatment. An unanticipated gift of the Open House - and of the letters that I sent as the journey unfolded - was to 'normalize' or at least demystify my cancer. It helped to break down their fears and discomfort (and my own) – I was the same person, just with cancer. They could relate to me in much the same way. It also lifted the curtain on cancer treatment. A frequent response to my letters was been "thanks for letting us know what it's like" - the treatment process, daily life during treatment.

Of course, telling people involves an undertaking to keep them informed of developments. I wrote email updates every six weeks or so, mixing the news of daily life with the information on my treatments and how I was responding to them. I included a dollop of humour and reflection to make them easy to read and not a missive of dread.

We also came to see that sharing a cancer journey is a reciprocal process that affected our friends and family too. This can be a good thing. Nicolas Christakis, talking about making positive changes but I think applicable to other changes or responses, has put it this way:

It’s very important for people to understand that when [someone] makes a positive change in their lives it doesn’t just affect them. It affects everyone they know and many of the people that those people know and many of the people that those people in turn know. If you make a positive change in your life it actually ripples through the social fabric and comes to benefit many other people. This recognition that we are all connected and that in our connectedness we affect each other’s lives I think is a very fundamental and moving observation of our humanity.[2]

Coming along is also risky and emotional. It means confronting our own fears and being open to change in the relationship. At the meta-level, the journey risks the grief of losing someone you love and care about. In the nitty-gritty of the journey itself, relationships with the person with cancer can change. We needed to rely on people when we were very vulnerable. I needed a french-speaking friend with me as my dressings were changed and surgical drains removed due to my lack of confidence with one of the locum CLSC nurses. This vulnerability was new on both sides of the relationship. The upside was that it was very comforting and deepened friendships.

Our good friend Norah put it thus in a short period of reflection during our 'champagne toast' to celebrate the end of my treatments in January, 2017:

Looking back, our thought process possibly went from "what a terrible thing that happened to them" to "that could also happen to me." Because of their generosity of spirit and hospitality, we can now say, "if they can do it, I possibly could too." You were both challenged and stretched to accept our offerings - small things, practical things, wisdom and we were able to support you. We have grown closer to you, to each other and grown in our capacity to believe in our own resilience in the face of.......

Interestingly, we didn’t worry about any stigma from telling others. Rather we felt an immense outpouring of love and support. From this side of the treatment journey, I’ve come to realize that many of our friends and family knew how arduous and life changing my treatments would be for me – far better than I knew at the time or was willing to anticipate. They also knew that it would be hard on both of us and we needed a bit of ‘wrapping in [the] cotton wool’ of love and practical care.

Cancer doesn’t just ‘end’, allowing me to resume my life ‘as it was before’. It becomes an integral part of ‘my story’. And, I’m glad that the thread of who I am remains unbroken – indeed much stronger – as a result of sharing my cancer journey with my community of caring.[3]

Notes:

[1] An article in The New York Times touched on this question in early March, 2017. See Bruce Feiler, “Whom Do You Tell When You’re Sick? Maybe Everyone You Know, New York Times, March 4, 2017, online at https://www.nytimes.com/2017/03/04/style/health-sick-illness-medical-conditions-social-media.html?smprod=nytcore-ipad&smid=nytcore-ipad-share&_r=0

[2] Nicholas Christakis, Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives, quoted by Eric Barker on his blog at http://www.bakadesuyo.com/2015/07/awesome-life/.

[3] Emily McDowell has a great encouragement card – proclaiming “I promise never to refer to your illness as a journey – unless someone takes you on a cruise”. While the sentiment makes me laugh and I get her point about euphemisms and comforting phrases, I have experienced my cancer and associated treatments as a particularly intense period of my life narrative. I’ve appreciated the intense engagement of my caring community with me during this time. So, I am comfortable with using the term “cancer journey” as a descriptor of this part of my life story.