The evolution of writing during a cancer journey

As we embark on our cancer journey, writing can be a way to help us understand, work out issues, and help us accept and come to terms with our fate. The wide variety of blogs and discussion fora, whether religious or secular in outlook, optimistic or pessimistic in tone, medical or emotional in emphasis, all reflect the richness of our individual lives, circumstances and perspectives.

My cancer journey was no different. As my journey progressed, so did my ‘writing journey,’ allowing me to reflect upon what my getting cancer meant to me, to my family and close friends. I had no idea at the beginning where my writing would take me, and what levels it would address, but somehow a flow and direction emerged.

As Steve Jobs said: “You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever.”

As I look back and reflect, I can see that my writing progressed through a number of levels:

Medical. I needed to track my symptoms, reactions and ‘how I was feeling’ to be able to work effectively with my medical team. While straightforward, such tracking allowed me to exercise a measure of control at a time of surrender of overall surrender: to my medical team, to my treatment, to my cancer. Medical tracking helped me become a more educated, and thus empowered, patient, reinforcing that feeling of being more in control.

Sharing. Having worked in a large government organization, I had seen examples where colleagues were silent about their illness or absence, leading to unhealthy speculation and questions. My approach was to send short weekly email updates to my staff and colleagues, to allow those interested to know what was happening (those not interested could press ‘delete’).  This approach also worked for close family and friends, allowing people to know how I was doing without feeling intrusive. This also allowed me to feel more in control, at least of my ‘messaging.’ These updates later formed the basis for my blog.

Reflection. As I continued along my journey, the bigger questions (e.g., ‘what it all means’) and the smaller (e.g., working with your medical team) became more interesting, and were expressed in reflection pieces, more thoughtful weekly updates and eventually a ‘clipping service’ of articles that spoke to me. This emerged after a few months of treatment; nothing liked enforced hospital or rest time to provide the opportunity for these broader reflections. Working with MD Anderson’s Cancerwise on issues of interest to them also motivated a variety of practical tips and broader concerns. My confidence in sharing these reflections increased, with less concern for what others may or many not think, and more willingness to put things ‘out there.’ Many of my readings, whether on religion, spirituality, meaning, or good fiction, helped inform these reflections.

This evolution was matched by the form of my writing. I started off with a clear separation of private and public information but, as time passed, this distinction was increasingly blurred. The main ‘instruments’ I used were, which again evolved over time:

Journal. My private record of what was happening, both in a medical and emotional sense: a mix of the prosaic (information for my medical team) and the profound (what I was feeling, what worried me, my family etc). Being private, I could write more honestly than in my public messages, and writing things down, as many have found, helps reduce the ‘churning’ in one’s mind of often unsolvable questions. For the first six months or so, my journal was key to keeping me sane and focussed, helping me manage all the worries and doubts that I felt, in addition to the prosaic function of tracking information needed by my medical team.

Email updates. As noted earlier, weekly emails to staff and colleagues helped manage the normal workplace (and human) concerns and questions about how I was doing.

Blog updates. About two months in, during a break in chemo, somewhat bored, and interested in blogging, I turned the weekly emails into a blog, initially not searchable given I was not yet ready to share my story with the wider world. I let people know when my weekly update was up, but after a while, I dropped that as the people who were interested could subscribe directly. My weekly updates broadened from the medical updates to capturing what books I was reading and what films I was watching (a number of colleagues were jealous of my reading list!). After a while, I opened my blog to the public, as a way to reach to the wider community of people living with cancer.

Deeper reflections. In addition to writing a number of reflection pieces, for both MD Anderson’s Cancerwise and my blog, the frankness and depth of my updates increased dramatically as my lymphoma relapsed after about a year. In particular, working through the decision process whether or not to proceed with a riskier, allogeneic stem cell transplant was both a private and public process, with a high degree of candour and openness about my discussions with my medical team. This continued post-transplant; my weekly updates changed from an average of a few hundred words to about 1,000 words. At times, this reflected the issues I was facing, at other times, a book that particularly moved or interested me. At this time, my private journal became more of a medical log, as I was working through the bigger issues on my blog.

Blog “clipping service.” Around the same time, realizing that I was doing regular web searches on cancer and related issues, I started daily posting of these articles, with some personal comments. This complemented my deeper weekly updates and helped expand my readership.

Creating Living with Cancer: A Journey. Talking with friends one night, aspiring writers all, I decided to try to turn the blog into a coherent book. While the easy – but mind-numbing – part was largely cut-and-paste, having it edited and revised for book format, and completing some addition sections and writing a conclusion, provided me with a more coherent and comprehensive understanding of my journey. To my surprise, I had written over 100,000 words. While the book is far from a best seller, it provided me with a sense of accomplishment and closure, in addition to teaching me some of the intricacies of self-publishing.

All aspects of my journey – medical, emotional, and relationships – were characterized by learning and evolving, often improvising as my treatment and thinking evolved. My writing was no different; in hindsight, it may appear coherent but none of this was mapped out from the beginning.

I suspect for most of us, whether writing through cancer or some other serious illness or chronic disease, this improvisation, this feeling our way, is natural. However, as we start, we are likely to start thinking about why we write, who we are writing for, and how much we wish to share. A journey has to start somewhere after all, recognizing that the destination is uncertain, with possible changes in our route getting there.

Andrew Griffith is a cancer survivor who blogs at My Lymphoma Journey.  He can be reached on Twitter @lymphomajourney.

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  • meyati

    Mine has been filing complaints about lack of basic lab work-filing complaints that the health system didn’t make a DNR accessible. I told them that they were acting like I’d commit suicide if I got a DNR order, but I didn’t need their permission to commit suicide, I was fully capable of doing it myself, it took me 2 years-they now have one on the Home Page- Then getting rid of a doctor that was on another planet, he wanted 2 remove the right side of my face-bone included, wouldn’t answer basic questions of what would happen to me-where would my body be, how long to get a prosthetic face, etc. Oh, the letters I wrote about him to administrators and agencies.

    • http://twitter.com/LymphomaJourney Andrew Griffith

      Sorry to hear about the less creative and enjoyable side of writing. Sometimes needed, but doesn’t help when you have to deal with this.

      • meyati

        And if I say-at least this might help other patients-the stupid shrinks and counselors usually say that a person has a god complex or something. I learned early to play dumb on that one. I say-huh-what do you mean? How would I know? Did you watch “The Christmas Story”? Where Ralphie wants a Red Rider BB gun? and his aunt makes him pink bunny pajamas? The aunt cares for him, and she’s skilled in her calling, but she doesn’t understand Ralphie at all. To me, I’m Ralphie-and the counselors are like the aunt. I have to look at the general intent and move on. One keeps insisting on sitting in on a Doctor’s visit with me-several different doctors-one Dr. brought it up that he told the counselors he didn’t want a counselor there. I checked with the chaplain-the only one that doesn’t seem to have a complex or burnout-to find out my rights. One question I asked was if the counselors talked to doctors-and I hope they can, so they stay out of my face. I have surgery scars and radiation burns inside my nose. I’ll probably be putting radiation treatment cream inside my nose for the rest of my life. I go up to sign a medical release for another Dr. fill out more paper work, and these people say-”Remember don’t touch your nose at all; you might get an infection.” It’s like water dripping on a rock. It’s like trying to talk to a drunk, so I say, “OK” I’d be healthier if I didn’t have to be around so many sick people.

  • http://twitter.com/LymphomaJourney Andrew Griffith

    Thanks for sharing and your comments. Couldn’t agree with you more on finding something creative to do. Sorry to hear that you are not doing well. Best wishes.

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