Author: Becky

This post is a continuation on my discussion about Patient Health Literacy. The narrative that resulted from this study has been published on Amazon. See my Memoir page. The original source that I used for my study can be found at https://bcbecky.com.

In reviewing the posts categorized as Navigating the healthcare system, I constructed the following themes: (1) learning processes, (2) taking control, (3) dealing with insurance, and (4) waiting. The theme learning processes applies to posts where I describe the different interactions I’m having with healthcare providers. The theme taking control applies to posts where I voice my need to empower myself or others by exerting some form of control over a situation. The theme dealing with insurance applies to posts where I write about issues insurance coverage of medication and treatments. The theme waiting applies to posts where I write about issues with waiting for various test results or treatments. I discuss each of these themes in more detail in the in the following sections.

Learning Processes

In the beginning I had no understanding of how the medical system worked with respect to cancer treatment. My understanding came only from what I saw on television and from an acquaintance that I sailed with 15 years ago who happened to be a medical oncologist. From that, I knew that there were different types of oncologist, but I did not understand that breast cancer treatment typically begins with surgery. Throughout the blog, I explore and share my interactions with the medical system, as I learn to negotiate it.

In Canada, I likely would not have had much choice in where I received treatment. I also would not have thought that a I had any choice in surgeon or oncologist. I would go to who I was referred to. In the US, and specifically in the area where I live, there are multiple providers. In some ways insurance affects where you get treatment, but I had really good insurance that allowed me the option of choosing. After hearing the words ‘you have cancer’ I felt an immediate sense of lack of control. The ability to choose a healthcare provider, although stressful and a completely new process for me, was also a way to exert some control over the situation.

As all the processes were new to me, I explained them in detail as they occurred. For example, in A long day (June 19, 2014), I explain the process of the appointment with the surgeon as well as the “whirs, honks, and other sounds” associated with my first experience with magnetic resonance imaging (MRI). I continue with the description of processes on my first day of chemotherapy, where I also include images that provide visual documentation of the process (First day of chemo, July 7, 2014). Further, in This too shall pass (July 16, 2014), I describe how:

In addition to describing the medical process, I also described what I learned about the process of gathering information from my care team. In I had to give myself permission to nap (July 9, 2014), I outline what I learned about how nurses and physicians provide different levels of information:

My analysis also shows that, in addition to describing the processes as I recalled them, I also wrote about my observations regarding medical education from the interpersonal perspective:

Finally, when I was hospitalized after surgery, I described my experience with hospital processes, specifically how a private room meant that my husband could stay the night with me, and the quality and process of getting food: “One thing that impressed me about the university hospital is that they use a room service model for food. The menu is quite good, and so far, the food has been good. The food is locally sourced where possible, and there are organic options” (An update from the hospital, November 20, 2014).

Taking Control

From the beginning I tried to take control by booking appointments for a second opinion from the university healthcare system. Here I was immediately frustrated at an inability to get an appointment without a confirmed pathology. Fortunately, they did guarantee me an appointment when the pathology results were confirmed (The speed of things, June 15, 2014). After getting an appointment, the act itself of seeking a second opinion and making a choice as to where to get healthcare were ways that I could take control (Double-mastectomy and chemo, June 19, 2014).

When I began to experience some odd side effects, specifically blisters on my hands, that were not resolving, we made the decision to go to the emergency room. This was in part so that we could experience the process of the emergency room at a time when we were not overly stressed – that is, “while I was happily ambulatory and not ‘really sick’, just in case I needed the services at a later time” (Not without incident, July 13, 2014). Further, in Engaged patient in a hospital gown? (September 27, 2014), I describe the process of a typical doctors’ appointment – and how I take as much control as I can during those appointments, in this case by wearing a hoody over the hospital gown.

Dealing with Insurance

The role of insurance in the treatment for breast cancer both surprised and outraged me. I was surprised when one of the first things the surgeon told me, after telling me he recommended a double mastectomy, was the ‘good news’ that insurance was required to pay for reconstruction (How do you prepare to lose a body part?, June 15, 2014). I was surprised when the oncologist mentioned that “it also takes about a week to get approvals from the insurance company” (Caution – this one talks a bit about death, June 21, 2014) before I could start chemotherapy.

We ran into issues with insurance and treatment after my first day of chemotherapy, which required the white blood cell booster Neulasta to be administered the following day. Insurance changed the way in which it was to be delivered (Pains with the American System, July 7, 2014). Finally, with a slightly more nuanced understanding of the way insurance impacts healthcare in the United States, I write a response to a New York Times article expressing my concern “that research stated like this gives insurance companies a reason not to pay for the surgery, when it may be in the best interest of the individual” (Bilateral mastectomies, July 28, 2014).

Waiting

Waiting was something that I ran into from the very beginning. First it was waiting for the pathology results, as I could not make an appointment at the university cancer center without confirmed pathology (The speed of things, June 16, 2013). When we were deciding on where to get treatment, we knew that we would be spending more time waiting at the university cancer center. We took waiting into consideration when making our decision, specifically I write:

As I went through treatment, there were many occasions where I describe what I felt to be excessive wait times. For example, “It turned into a long day. We had a delay seeing the nurse practitioner to get sign off on chemo – unfortunately that turned into a three-hour delay. Then we had a delay on the saline drip for rehydration, which added another additional hour” (AC Cycle 4, August 19, 2014).

As we became more familiar with processes, we became more efficient with our time, developing strategies to reduce the amount of time we spent waiting. When I became more confident in myself as a patient advocate, I learned to identify problems in the system and articulate them to management in hopes of resolving the issue. For example, in Learning to assert myself, (October 29, 2014), I write:

Summary

Nursing research shows that supporting breast cancer patients with navigating the healthcare system can improve many aspects of the care that patients receive (Robinson-White, Conroy, Slavish, & Rosenzweig, 2010). My analysis of the category Navigating the healthcare system shows that I had regular interactions with the healthcare system, and there were spikes in my interactions associated with receiving pathology results, starting chemotherapy, exploring surgery options, and surgery itself. Under the category Navigating the healthcare system, I constructed the following four themes: (1) learning processes, (2) taking control, (3) dealing with insurance, and (4) waiting. As I learned the processes associated with receiving cancer care, I wrote about them. When I was able to, I sought ways that I could take control over my interactions with the healthcare system. Unfortunately, there were two areas of challenge with my experience with the healthcare system, dealing with insurance and what felt like unnecessary waiting.

Each person experiences breast cancer differently. This difference is in part related to the variable nature of the disease, but also the different healthcare systems where the patient is seeking treatment. The nursing profession has attempted to address this complexity with the creation of formal nurse navigators that help guide cancer patients through the healthcare system (Case, 2011). Unfortunately, not all healthcare systems have nurse navigators. In addition, the nurse navigators are often not fellow breast cancer survivors. This means that they cannot fully appreciate what it means to live with the illnesses associated with breast cancer and its treatments. The nurses are also insiders within the system, with knowledge and privileges that patients do not have. This can lead to a gap in what information the patient needs. Patients experiencing critical or chronic illness have a need to learn how to navigate the healthcare system from a patient perspective.

This post is a continuation on my discussion about Patient Health Literacy. The narrative that resulted from this study has been published on Amazon. See my Memoir page. The original source that I used for my study can be found at https://bcbecky.com.

From among the 237 blog posts, I coded 92/237 (38.8%) with the category, Learning about the disease. The distribution of number of days per week that I wrote one or more posts that were coded as Learning about the disease, Figure 4, shows interactions almost every week. This is particularly interesting because it shows that the learning did not just happen at diagnosis, rather I continued to learn and share my learnings throughout the study period.

In reviewing the posts categorized as Learning about the disease, I constructed the following themes: (1) sourcing experts, (2) sourcing the Internet, (3) sourcing academic articles, and (4) sourcing peers. The theme sourcing experts applies to posts where I echo the information I receive from healthcare providers. The theme sourcing the Internet applies to posts where I include information from trusted Internet sources. The theme sourcing academic articles applies to posts where I include references to academic literature. The theme sourcing peers applies to posts where I describe information that I have gathered from peers such as through support group meetings. Peer sources includes blog posts of other cancer survivors. I discussion each of these themes in more detail in the in the following sections.

Sourcing experts

When I was initially diagnosed, I knew very little about breast cancer. In my early posts I would parrot back of the words I heard from my healthcare providers. For example, in It all started… (June 14, 2014) I say, “I’ve been told that the majority of women who get breast cancer do not have relatives with cancer”. As I gather more specific information, I include my interpretation and feelings associated with the information I’m receiving. For example, in Double-Mastectomy and chemo (June 19, 2014), I write not just about the disease characteristics, but also what those characteristics mean and how that translates into a treatment plan. At this point, I am echoing the information the I received from an oncologist. I’m not referencing any other source. More importantly, in this post I’m not just talking about the data itself (that is the pathology), I’m also talking about what that data means and how that information affects the recommended treatment options.

Sourcing the Internet

Within support groups, I often heard the women say to someone who is newly diagnosed ‘do not look at the Internet’. And yet, it was the Internet that I went to when I needed to look up medical terminology. When interpreting my pathology report, I tell readers of my blog that if they want more information on how to understand pathology reports, to look at http://breastcander.org. I refer to this site several times within the blog, as it provided useful information regarding breast cancer and treatment options.

When I wanted a description of medical terms, or when I wanted to validate something that I heard from either support groups or healthcare providers, I went to trusted sites on the Internet. In Significance of dates and getting ready for chemo (June 26, 2014), I write about my reflections on the chemotherapy preparation class that my husband and I attended. I share a couple of resources: a book that I found to be not very useful; and, a website, http://chemocare.com, that was very useful. I find it particularly interesting that advice is often given to ‘not look at the internet’, and yet the better and more current resources shared are those found on websites rather than books, which quickly become outdated.

Sourcing academic articles

Initially, I was unable to read academic sources, rather, I relied on my husband to do that research. However, when I had to make a decision regarding surgery, I reached into the academic literature to do an analysis on what the surgery and the expected results of neoadjuvant chemotherapy. For example, in Breast reconstruction – academic analysis (September 22, 2014), I write about the knowledge I gained through reading academic articles relating to the type of breast reconstruction surgery I was debating. In addition to sharing some of the key findings from the academic articles, I also shared terminology definitions such as “Autologous reconstruction is reconstruction that involves the patient’s own tissue (e.g. DIEP flap, TRAM flap).” In Pathological Complete Response (September 23, 2014), I write about the knowledge I gained, and my interpretation of academic articles associated with the expected outcomes of neo-adjuvant chemotherapy. I not only provide key findings, but I provide my commentary on the findings. I’m sharing both the findings from the articles and my interpretation of that information and how it applies to my situation.

Sourcing peers

In addition to healthcare providers, friends connected me to a fellow breast cancer survivor. I see echoes of conversations I had with here in my blog, for example when I say “choose who you want to trust, and then trust them” (A long day, June 19, 2014). By the time I was to start treatment, I was familiar with some of the expectations around treatment. For example, in This too shall pass (July 16, 2014), I say that “during support group last Saturday, one of the ladies explained what the Neulasta bone point felt like. I had been warned.”

Perhaps the biggest benefit from support groups was the normalization of medical terminology and the generic breast cancer treatment process. Specifically, in A photo shoot and getting ready for surgery (November 18, 2014), I write about the process of the surgery. I specifically talk about the “injection of some nuclear isotope into each breast that helps to identify the sentinel node, and the insertion of wires to guide the surgeon to the exact location of each of the tumors”. By the time I wrote about the procedure, the concepts had been ‘normalized’ for me. I had heard about it so many times at support group that I came to think of the process as ‘normal’. It was just something that I needed to do. Further, in Breast reconstruction – Academic analysis (September 22, 2014), I point to another blogger’s post before I refer to the academic literature: “First off, I should start by pointing out an important blog post written by Nancy Stordahl on why breast reconstruction is not a boob job (2013). When looking at patient satisfaction, I focused on post-cancer reconstruction which is a lot more complex than cosmetic reconstruction.”

I don’t share a lot of the medical information that I received in support group. In part because I often validated this information with my healthcare provider and then reported it in my blog as being from my healthcare provider. In Flyin’ (November 26, 2014), I write about information that I learned from various support groups pertaining to lymphedema, and then how I looked into the academic research about it, sharing some key points from the research. Here I am showing how the information I received through support group helps me know what to look up, but also how I do not directly trust the information in support group, rather I look to more trustworthy sources.

Summary

In order for patients to be partners with their healthcare team in making appropriate decisions, patients need disease-specific information (Wallberg et al., 2000). When I was diagnosed, I knew almost nothing about breast cancer. I needed to use multiple sources in order to learn about the disease. My analysis of the category Learning about the disease shows that I continued to learn about the disease throughout the treatment process. Under the category of Learning about the disease, I constructed the following four themes (1) sourcing experts, (2) sourcing the Internet, (3) sourcing academic articles, and (4) sourcing peers. Within these information sources, I did not only share the information directly, I also shared the way in which I was interpreting the information. In addition, as time progressed, I increased where I received my information, using multiple sources to validate what I was learning.

I began my learning about breast cancer through information I received directly from expert sources, that is my healthcare providers. When I needed clarification on terminology or more detailed medical information, I sought out trusted Internet sources. When I was ready to read academic literature, I searched the literature for information that would help me make treatment decisions. The different information and advice sources sometimes overlapped, where at other times they didn’t. I had to learn how to discern not only where I could get information, but also what types of information I could get from where, and how reliable that information was. There were so many nuances to information that I didn’t always appreciate at the time, and some that I still don’t appreciate. Throughout the process I negotiated the information that I received from expert sources, Internet sources, and academic sources. Although I gathered information from peer sources, I did not directly trust that information, rather I used trusted sources to validate what I had learned through peer sources. Patients experiencing critical or chronic illness have a need to learn appropriate sources for different types of information to help them learn about the disease and what it means to live with the disease.

Where do you find your health information? What sources do you find reliable? Where do you learn about how to live with the disease?

This post is a continuation on my discussion about Patient Health Literacy. The narrative that resulted from this study has been published on Amazon. See my Memoir page. The original source that I used for my study can be found at https://bcbecky.com.

From among the 237 blog posts, I coded 163 (68.8%) with the category, Developing coping mechanisms. The distribution of the number of days per week that I wrote one or more posts that were coded as Developing coping mechanisms, Figure 2, shows that from the very beginning and throughout treatment I blogged about coping mechanisms. There are dips that align with the weeks where I wrote fewer posts overall and can be attributed to times where I was travelling or having surgery.

In reviewing the posts categorized as Developing coping mechanisms, I constructed the following themes: (1) blogging, (2) exercising, (3) social networking, and (4) seeking control. The theme blogging applies to posts where I write about or reflect upon the act of blogging. The theme exercising applies to posts where I write about exercising including hiking and being in nature. The theme social networking applies to posts where I write about connections with others that provide me support. The theme seeking control applies to posts where I am writing about ways that I try to find aspects of disease experience where I can create a sense of control. I discuss these themes in more details in the following sections.

Blogging

In the beginning, I highlight that I began blogging as a way to share my thoughts, as I was a blogger before diagnosis, I found myself wanting to write and share my experiences as a way to process what was happening to me, specifically I say “I shall look at this blog as a journal into lived experience, combining medical jargon with lived-experience of someone with breast cancer” (It all started …, June 14, 2014). A few days after diagnosis, I discovered another benefit to blogging, specifically that I didn’t have to keep telling people what was going on. I wrote “Mostly I’m pointing people to my blog, just so I don’t have to keep saying it. There is an emotional toll that occurs on both sides. Some people want to reach out and talk, but I’m not there yet. I cannot talk about it.” (A tough day, June 17, 2014). Later, I write about my intention to use my blog as a way to exercise my brain when I was worried about the effects of chemotherapy on my cognitive function. I wrote: “I shall keep up my ‘exercise’ and try to write regularly. I can only hope that my words continue to make sense and continue to demonstrate some level of cognitive competence” (Reflection on chemo brain, September 15, 2014).

I talk explicitly about the blogging process at the beginning of the treatment process, but then stop writing about the blogging process as treatment progressed. This suggests that my reflections on blogging itself became normalized as treatment progressed, that is, that I no longer felt it necessary to reflect on how blogging was affecting me. 

Exercising

From the beginning, I recognized exercise as a priority, noting that I wanted to get as strong as possible before treatment began. Specifically, I say:

As time progressed, I added hiking to my repertoire of exercise. I especially found exercising in nature as a way to feel both physically and mentally better. I highlight the effect of hiking in a grove of ancient redwood trees:

Unfortunately, the side effects of chemotherapy caught up to me as I had mouth sores that made it impossible for me to effectively hydrate, which in turn curtailed my ability to exercise (Not talking = not blogging, August 30, 2014). After surgery, I returned to regular exercise as a way to recover:

Further, post-surgery I was thankful for all the time I spent exercising during chemotherapy, because “when I took my first steps, my legs were strong. It made a huge difference to how quickly I was able to move, and how quickly I’ve been able to walk.” (A small cup of coffee, January 2, 2014).

Social Networking

Initially, I was very hesitant about joining any breast cancer communities. It was my husband who pushed me to attend my first support group meeting, only a few days after my diagnosis. In Support group (June 22, 2014), I express how attending the support group helped me learn to talk about my cancer. I had to say it out loud. It also gave me a space to talk about breast cancer with others who understood what I was going through.

Further, in Joining the cancer blogsphere (July 6, 2014), I expressed my hesitation in joining the breast cancer blogosphere:

Despite my hesitance to reach out to new support communities, my posts show that I did reach out to my pre-existing social networks for support. For example, when I found that I needed support to overcome inertia and side effects in order to exercise, I called on friends to help keep me accountable and help me get off the couch using a personal Facebook exercise support group (Significance of dates and getting ready for chemo, June 26, 2014).

Further, the importance of social networking as a coping mechanism was suggested when I blogged about the role of social media in my process of gathering information about breast cancer and treatment options. In Social media and patient engagement (October 29, 2014), I outline what type of information I gathered from social media:

In addition to using my social network for outside support, my blog also highlighted the importance of having a caregiver to provide support when I was not able to make decisions for myself. The impacts of cancer and chemotherapy on my mental capacity meant that I could no longer troubleshoot when unexpected events occurred. My husband, Scott, was my rock and was there to ensure continuity of care. After my first surgery, where he could stay the night in my hospital room which “turned out to be very useful, as several times I benefitted from having a patient advocate (things like helping when I needed to use the toilet). It also meant that he was here for most of the doctor and nurse visits.” (An update from the hospital, November 20, 2014). Further, caregiver support was highlighted when I blogged about the challenges of returning home after my second surgery:

Seeking Control

Initially one of the ways I exhibited the theme seeking control was through intentionally finding ways to have fun. This became an explicit activity. I knew that if I didn’t find ways to have fun then treatment would be very difficult: “One of the things that causes that natural high for me is sailing. So, we are looking for ways to go sailing regularly. However, sailing can be very physically demanding, which will likely be a challenge. This Saturday, we are headed up to the city to go sailing on a 2003 America’s Cup boat.” (Priorities, June 18, 2014).

In addition to intentional fun, I also had to explicitly give myself permission to do things. Initially, it was giving myself permission to nap (I had to give myself permission to nap, July 9, 2014). As the idea of surgery approached “I have given myself permission to go into surgery kicking and screaming. I’m OK with not being calm and collected when I get rolled into surgery. It is natural to not want to deal with it.” (I’m scared, September 17, 2014).

After I began chemotherapy treatment, one of the ways I attempted to regain a sense of control was to shave my head prior to losing all my hair. I explain this decision:

Further, to help plan for chemotherapy side effects, I created a chart of my symptoms, see Image 1, which I used to help predict when I was going to experience the different side effects in future chemotherapy cycles. I also used the chart to determine which steps I should take to proactively reduce the impact of the side effects (Mouth sores & first cycle symptoms, July 20, 2014).

Perhaps one of the more pragmatic attempts at seeking control was through planning. Unfortunately, the unpredictable nature of chemotherapy treatment meant that some of the plans I had originally made, specifically my original plans for a trip to Hawaii, would no longer work. Additional planning was required regarding the new treatment schedule:

Finally, the post-surgery posts in seeking control relate to advocating for myself during interactions with the healthcare system. Specifically, I wrote about negotiating with a resident regarding a surgical side effect, and my unwillingness (non-compliance) to take her recommendation:

Summary

One of the important aspects of health-related self-efficacy around cancer care is the need for the patient to develop coping mechanism (Papadakos, 2017). In my theme analysis of the category Developing coping mechanisms, I show that I continually developed coping mechanisms throughout treatment. Under the category of Developing coping mechanisms, I constructed four themes (1) blogging, (2) exercise, (3) social networking, and (4) seeking control. Blogging was initially a way in which to help me process and share my treatment decisions. Later, blogging became a way of exercising my mind, where physical exercise provided a way for me to feel physically and mentally better. Throughout the study period, I found support in both face-to-face and online social networks. The theme social networks also included support that I received from my husband and primary caregiver. Finally, I blogged about the ways in which I sought control, including intentionally planning fun activities and travel. Control seeking was also expressed through self-advocacy.

My analysis of the category Developing coping mechanisms showed that I continually developed coping mechanisms throughout treatments. Although each individual chooses to cope in different ways (Al-Azri, Al-Awisi, & Al-Moundhri, 2009), blogs such as mine provide a great resource for discovering what coping mechanisms might be useful. A practice that I developed through my experience was to develop coping mechanisms such as blogging, social networking, exercising, and seeking control. Patients experiencing critical or chronic illness have a need to develop coping mechanisms in order to learn how to live with illness.

References

Al‐Azri, M., Al‐Awisi, H., & Al‐Moundhri, M. (2009). Coping with a diagnosis of breast cancer‐literature review and implications for developing countries. The breast journal, 15(6), 615-622.

Papadakos, J. K. (2017). The Association of Health Literacy and Self-Efficacy to Cancer Chemotherapy Self-Management Behaviours and Health Service Utilization. Doctor of Philosophy.

Are you a patient? Do these coping mechanisms align with your experience? What other types of coping mechanisms did you develop?