I’ve worked with quite a few patients with Stage IV Metastatic Breast Cancer (MBC) over the past several years who were attempting to address and educate insurance companies, health, life and disability, as well as governmental entities like Social Security and even their own doctors. One of the first things I tell each person I work with is to get a notebook and a pen and keep it with them at all times for the length of time a cycle of medication is for them (this is usually in 3 or 4 week intervals). Any time they experience anything related to their treatment, they are to whip out that notebook and record it. If the person has a caregiver, I suggest that the caregiver does the same so they can compare notes.
What does this accomplish?
Each of us living with MBC adjust to a myriad of side effects all day long that we have all normalized, plus we all take a variety of medication to manage those challenges. Having such fatigue that taking a shower is exhausting becomes expected. Forgetting names or words or entire events becomes commonplace and we can no longer be relied upon to follow through. Tingling or burning sensations in our feet and hands; nausea or GI issues at many inopportune times. The joint pain from AIs can be awful and prevent a great deal of movement. And so many more that I haven’t thought of because, you know, chemo-brain affects me quite a bit as well.
We live with all of these things and more, every single day, and I haven’t mentioned any of the psychological affects, the triggers that we work through, the fear, the effort it takes to walk back into the clinics, the infusion centers, the doctor’s offices, knowing that every time, someone hurts us, knowing that every time, we may get the worst news yet again.
Truly documenting all we each handle day in and day out would take tomes and reams and reams of paper to do justice to this project. And yet, it is worth the effort I have found since the vast majority of the people who have done this faithfully for a cycle or maybe two get a lot of benefits that I didn’t envision when I came up with the idea.
First of all, it benefits the patient and their families to see on paper what has been going on. Perhaps that knowledge can lead to understanding, better support, and seeking remedies or adjusting medication. Quality of Life (QOL) is, I believe, something that gets short shrift and it is nearly impossible to truly improve QOL without data and knowing what to change.
So the assignment first benefits the patient and their families.
Secondly, keeping track of these details during one cycle allows the patient to be able to make adjustments for future cycles. Perhaps taking medication at night rather than in the morning makes more sense. Perhaps taking medication a few hours apart from other medication versus swallowing everything in the morning makes more sense. When data is kept carefully, the patterns that emerge may provide answers to many different struggles.
Yet another benefit for the patient and their families.
Third, our medical team only knows what we tell them about our experiences at home. Sure, they can extrapolate and fill in blanks based on our bloodwork or how we look/sound, but without information about our experiences, they are in the dark. Keeping a symptom diary and providing that information or a summary to the patient’s medical team could result in more targeted and specific care.
Fourth, for those people who do not deal with MBC patients regularly or maybe even cancer patients, they have no frame of reference. Most of the employees at insurance companies and the government agencies are attempting to do their job while solidly in the dark. A detailed symptom diary or summary could mean the difference between a good experience with the agency/company or having to expend vast amounts of energy attempting to explain. Plus, a diary kept in this way is likely admissible in Court and the risk managers at a savvy company is always looking out for the types of evidence that could come back to bite them in the end.
Fifth, patterns or information a patient discovers when keeping data contemporaneously could allow that patient to help educate other patients about what to expect and perhaps even pharmaceutical companies looking to refine and improve patient experiences.
Data, it all comes down to data.
And so I’m taking my own advice and I’m starting a symptom diary and also tracking the medication I’m taking for the various side effects in an effort to drill down on what’s happening and what medication is necessary to manage how I’m feeling. Maybe we’ll find some answers as to the cause of some debilitating migraines. Maybe it will help my own caregivers and family see a bit more about my experiences.
Maybe. Stay tuned.