Be Proactive, Informed and Organized
One day, the humdrum concerns of work; the next day, cancer. Suddenly cast into a new system with a great deal at stake. A new team of doctors to meet. A raft of appointments and tests. Results to assimilate. Decisions to make. Informed consent to give. Knowledge fields far from the realm of the law and education. Expenses and prescriptions to be tracked. And, a sudden change (even loss) of identity. In response, I decided to get organized and educated. And I surprised myself by taking a proactive and determined approach to each step of the journey. Here are some of the things I did – some of them may be helpful depending on your own style.
Introducing Myself
I wrote a short overview ‘about me’ which I gave to my doctors. Some brief personal details (age, weight, non-smoker, non-drinker, golfer, work) and immediate medical history (being diagnosed: when, how) and general medical history. Medications I take (you’ll be amazed how often you need to provide this information). A family history, particularly, the recurrent thread of cancer.
I also prepared two other one-page documents so I would have information at my fingertips if needed. I took them with me to appointments. The first page had the ‘the numbers’: health card, hospital file number, blood type, family physician contact details, health care coverage numbers; address. The second page had the names and contact details of all my doctors and other health care providers in case I needed to provide these details.
Getting Organized
As noted, there is a lot of paperwork to keep in a straight line. I adopted a system consisting of a binder and ‘permanent folders’. Inspiration from the binder came from a Very Organized Person, Lisa Bonchek Adams and her “must-have binder: my key to being an organized patient (or caregiver)”. I have since learned that she was a prolific and engaging writer and breast cancer blogger. Her recommended system can be accessed here: https://cancerkn.com/the-must-have-binder-my-key-to-being-an-organized-patient-or-caregiver/
I read through her suggestions and adapted her ideas to match my needs and detail tolerance level (which is lower than hers) and the Canadian health care system. To me, it seemed that some information would be better kept in folders. This included files that didn’t need to be taken to the hospital (e.g., Health coverage claims, information about drugs) or which seemed better kept together and taken as needed (e.g., pathology reports and diagnostic test CDs). For this information, I used folders. I splurged at bit and got fancy coloured folders with elastic closures (Exacompta) and a file box: The Cancer Files.
Dialling in to Information and Research
Everyone has their own interest level in learning more about cancer and their cancer in particular. I have a friend who is an eminent and meticulous scholar. When she was diagnosed with breast cancer, she had no interest in detailed knowledge. It was up to her physicians to know their stuff. Asked how many lymph nodes were affected, her answer to me and others was “lots and lots, I never asked.” Other people try to learn everything. I’d like to think I was in the middle. I was very conscious that reading a few articles doesn't make anyone an expert on breast cancer. Rather, I wanted to learn what was necessary to make good choices about my treatment, to be able to advocate for the best health care options, and to have a good sense of my situation (prognosis, likely side-effects and after-effects).
There are many, many websites offering information. Many excellent Foundations with websites. Fabulous forums for women with breast cancer to share their experiences and their questions. And lots of lower quality websites. Sites that encourage alternatives to scientific medicine. Sites that claim miraculous results from certain herbs and supplements. Sites that purport to report on breakthrough or suppressed research. It’s a jungle out there. As Emily McDowell has put in on one card in her empathy card series, a good friend "will never try to sell you on some random treatment I read about on the Internet."[1] A lot of googling, sifting, filtering and reviewing is needed.
I found that www.breastcancer.org suited me perfectly. It is moderated by scientists and cancer specialists. It provides focused, clear explanations on treatments and drugs. It sets out ideas about managing side effects. And, it has a moderated blog Q and A. I also used other sites as relevant.
I also set ‘breast cancer’ as an interest in my news aggregator (ios App: news360 at https://news360.com/) on my iPad. It brought me a range of current news about breast cancer. I subjected it to the same kind of filtering and quality assessment as the web generally. However it was very useful. As an academic with access to research databases, I could access the original studies referred to and read them directly.[2] For example, it led me to very recently updated guidelines on radiation where there are fewer than 4 lymph nodes positive for cancer. Carefully reading the study helped me discuss my situation with my doctors as part of deciding whether or not I should have radiation (ultimately, I opted to do so).
Preparing for Appointments
I always went to appointments with a list of questions related to the topic of the meetings. This helped me stay on track particularly when I wasn’t feeling particularly ‘on top of my game’ during chemotherapy. It helped me to be more (but still calmly and nicely IMHO) assertive and proactive instead of deferring to whatever the doctor wanted to tell me. Usually I had a friend with me who would take notes or I would take notes. I had a smaller ‘daily’ binder with me with information pertinent to the subject.
Remember: “[you are] the master of your fate: you are the captain of your soul.” (William Henley, Invictus)
[1] See the whole series at https://emilymcdowell.com/collections/empathy-cards
[2] The following link provides a helpful overview of how to read a scientific/medical study: Jennifer Raff, "How to read and understand a scientific paper: a guide for non-scientists", at http://blogs.lse.ac.uk/impactofsocialsciences/2016/05/09/how-to-read-and-understand-a-scientific-paper-a-guide-for-non-scientists/
