Organize the Journey

I’ve always had good intentions to stay organized. I have vowed to be prepared, punctual, and keep my promises. For the most part I’ve been able to live up to my own expectations. Despite having the reputation of being the last to show at a family function, I’ve been called “the organizational guru” at work. I could rattle off my jammed calendar in mere minutes, and I could find a specific piece of information in the blink of eye – well, maybe that last one is a slight exaggeration – but I considered myself fairly on top of it.

Keeping Track: Christy Soholt has just returned to work after a parental leave with her first child, a whole new organizational challenge.
Photo by Eugene, 3ten

Until May 7, 2008 after a visit with my family doctor, I went thinking she would tell me that the biopsy of “my lump” (as I affectionately called it) proved to be nothing to worry about. Instead I came home with a stack of literature on breast cancer. Thus began my love-hate relationship with documenting the hundreds of details of my cancer journey.

Shocked at my diagnosis, particularly at my young age of 28, I had a lot of questions. A lot. I had not ever been close to anyone on a cancer journey and I had no idea what to expect. Thankfully my cancer care staff blew me out of the water with answers. All the information I could possibly need and then some; a four-hour explanation of my specific diagnosis and treatment plan, supported by a handout with additional information. The first meeting was followed by another appointment with another specialist, and a seminar that would help me with that issue, oh, and a clinical trial that would be perfect, and a support group that would be worth meeting, and so on. In just a few short months, I was buried under a mountain of information and overwhelmed by an appointment schedule I could not keep track of.

Four short months later, my Dad heard the dreaded words “you have cancer” when he was diagnosed with non-Hodgkins lymphoma. Just like that, there were now two cancer journeys in my immediate family of four to keep track of. Being the seasoned expert on the subject that I now was, I accompanied him and Mom as much as possible to his seemingly endless appointments, trying to write down anything that would make sense, remembering to ask the hundreds of questions that had been going through all our minds, and now trying to make sense of a new mountain of handouts. Complete with side-effects of treatment, cancer was taking over my life, and my house.

Eventually the handouts and books made their way into a pretty pink box I purchased for that purpose. Now my office desk had a box with the fitting saying “everything is possible” on it where there was once a stack of papers. Somehow this small change in organization helped me feel like I was taking control of something that felt out of control before. Mom found her own system for Dad’s records – a very large file folder. And while my box was sorted by subject, Mom’s was organized by date. Both systems seemed to help us manage the cancer journey just a little bit better.

Then there was the matter of a slew of new appointments and contacts. From doctor appointments to support group contacts to self-help seminars and treatment dates, being a cancer patient seemed to be a full-time job. I laugh when I think about my naiveté at diagnosis, thinking I was going to continue working through my illness. Bless those who can make that happen, I was lucky to make it to the lab for blood work on time! My solution was low-tech; a quick trip to a stationary store and I was armed with a pocket calendar and a pencil that tucked into my purse. At a quick glance I now not only knew what the next day and month had in store, but I had my key contacts close at hand. I could jot down my questions as they came to me, and I could take more control of my journey. Mom’s system for Dad was similar and though it’s not revolutionary, having this sort of system for my personal life was a brand new idea to me.

After treatment, I turned my passion for a cancer-free future into a career by joining the Alberta Cancer Foundation team. Understanding that information, support, contacts, appointments and more is a large component of the cancer journey, we at the Foundation wanted to give patients a gift to help ease this burden. After sorting through my box, reviewing my pocket calendar, and consulting researchers, nurses, volunteers, patient education specialists, nutritionists, and more, the

My Journey patient journal and file folder gift was born. I am so pleased that the foundation offers this package to all patients throughout the province, and I hope it will help patients navigate and take control of their journey. Patients can pick up a copy, free of charge at any Alberta Cancer Foundation office.
I would not wish anyone this difficult journey. I hope in some small way that my journey and book helps ease others.