Rebecca J. Hogue

Category: 1 Health Literacy

  • Navigating the Healthcare System

    Navigating the Healthcare System

    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.

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    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:

    They don’t give you much other than anti-nausea meds for the first cycle, and they wait for you to call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.
    Images fromFirst day of chemo, July 7, 2014

    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:

    Nurses tend to provide advice on the extreme side of things. For example, absolutely no alcohol, no swimming, no biking. They tend to provide advice based upon the worst-case scenario, but also discount mental health. The need to exercise is important to my mental health. The oncologist is good – he explains the chemo cycle – and says it is OK to swim the first week, but as my white blood counts get low to stop swimming until the counts return.

    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:

    What has been interesting is that this seems to be part of the learning process. Those who are most empathetic are the attending surgeons. The residents are still learning, so their interactions can feel a little mechanical – they are still trying to figure out the best ways to make connections with patients, but also the best ways to describe things. By the time they are fellows, you see a higher level of confidence in their ability to provide patient education – and you start to see information that is more customization to your specific case. The attending surgeons seem to be the best at tailoring their discussions to your specific situation.

    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:

    In the first couple weeks after diagnosis, I had decided where I was going to get treatment. I based this, in part, on where I felt comfortable – but also who provided me with the most options. I really liked being in a teaching setting and having access to more specialists – but that was balanced with knowing that I would spend more time in waiting rooms and receive less fancy care (e.g. the infusion treatment center doesn’t provide lunch).

    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:

    Today, I asked for a supervisor.
    You see, I had an appointment. The online system showed my appointment as 9:15. I was told to arrive 30-minutes prior to my appointment (which is a bit excessive). I arrived 25-minute prior to my appointment (8:50). When I was still waiting at 9:30, I went to talk to the receptionist. Anytime I’m asked to wait more than 15-minutes, I want to know why I’m waiting (that is a lesson I have learned here – in Canada I would just wait in silence – it is interesting how asking goes against my ingrained behaviour). I found out that my actual appointment was at 9:45. The online system had already added 30-minutes, and the person who made the appointment for me added another 30-minutes. This is in part why patients spend excessive amounts of time waiting.

    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.

  • Learning about the disease

    Learning about 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 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.

    Number of days per week that a post was written that has been categorized as Learning about the disease.

    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?

  • Developing Coping Mechanisms

    Developing Coping Mechanisms

    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.

    Figure 2: Number of days per week that a post was written that has been categorized as Developing coping mechanisms.

    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:

    My number one priority pre-surgery is biking. That is, back when I thought I might have cancer (after my family doc appointment) the one thing I decided was that I would train so that I was in the best physical shape possible before surgery/chemo. I want to make sure I’m going into this as strong as possible. For me this means allocating 2-3 hour a day (or more) for biking.
    (Priorities, June 18, 2014).
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    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:

    I find peace in nature, so today we spent some time communing with nature. We went for a walk in the Redwoods up at Big Basin Redwoods State park. We walked for 9km, that’s a record for me. Big Basin Redwoods is perhaps one of my favourite places. The trees are literally 1000s of years old. There is a peace when you are walking and touching these ancient trees – some with battle scars from fires long past. They are survivors.
    (Why me? … it is what it is, June 23, 2014)
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    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:

    Recovery is still a long road. My hematocrit tanked again (lower than ever). I find myself easily out of breath while walking or climbing a single flight of stairs. My incisions are healing well. I still have a couple of drains which I’ll probably have until next Monday as they are still producing a fair amount of fluid. For the next week, we shall take one step at a time, trying to increase my walking distance and awaiting the day when I can get back on the bike.
    (The end of active treatment, December 29, 2014).
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    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:

    I have strong online relationships. I am part of several online communities where I find strength and much needed support. But, to join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.
    (Joining the cancer blogsphere, July 6, 2014)
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    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:

    I have been reflecting on social media and the type of information I get from social media. I use social media to get a sense of the ‘lived experience’ of a given treatment. When I reach out and ask, I receive experiences from others as well as a boat load of advice. This information is often very useful in helping me better gauge what to expect, but also in helping me ask questions of my healthcare team.
    (Social media and patient engagement, October 29, 2014)
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    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:

    When we got home one of the biggest challenges was figuring out all the medications and a schedule that allows us to create an efficient process. I can now better appreciate why it felt like the nurses were giving me various pills on an almost hourly basis. Someone asked how many? I’m at 17 different meds, with 11 different dose times. The goal in setting up a schedule was to optimize pain medications and reduce the number of times in the day I’m taking drugs, while still respecting various drug interactions. This isn’t something that is easily done by the pharmacy, as the pharmacy doesn’t deal with all the over-the-counter meds that are also prescribed (e.g. I’m prescribed certain vitamins which aren’t provided by the pharmacy).
    (Getting organized at home, December 23, 2014)
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    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:

    If you haven’t done a chemo that causes hair loss you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair, then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments. When you have an opportunity to take control and do something on your own terms, it can be important for some people to take control.
    (In for an emotional day, July 17, 2014)
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    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).

    Image 1: Chart indicating the timeline of anticipated chemotherapy side effects.

    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:

    I’m actually of quite mixed emotions. This plan works for me – it lets me still get in a trip to Hawaii before the first surgery, and a trip to visit my parents before the second surgery. We ran through the schedules last night, and it even looks like my friends from Nova Scotia can still join us in Hawaii (yay). The extra chemo gets me that much closer to finishing the protocol (which calls for 12 sessions of Taxol – in the end I’ll have 9 sessions). Part of me doesn’t want the extra two chemo sessions – I’d just like to stop chemo and go on with the surgery, but another part says – what if those extra two are the difference between beating this thing and not? Will those two extra sessions be extra insurance against recurrence? Metastasis? Of course, we don’t know. We have no way of knowing whether or not a couple more sessions of chemo will make any difference what so ever. But to align with the surgery schedules, it is best that I am in chemo right up until three weeks before surgery. And then I get four weeks between the first surgery and the second surgery. I’m happy for a little extra time to ensure that I’ve healed.”
    (Temper tantrums, October 15, 2014)
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    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:

    Sensing my non-compliance, she asked if I was okay with the plan. I said “no, how about we watch and wait? — because I am passing some urine, I’m not completely blocked — it is just taking time and not flowing properly”. I don’t completely trust the resident’s opinion. I want to hear it from someone with more experience.  
    (Ya no!, November 23, 2014)
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    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?

  • A different lens #patientnarratives

    A different lens #patientnarratives

    An article in the BMJ blog about The transformative power of patient narratives in healthcare education crossed my stream today. This timing could not be more appropriate as I am working on the discussion for my dissertation and working through the concept of health literacy.

    From the article, Baines, Denniston, and Munro (2018, July 8), highlight three ways that patient narratives have value in healthcare education:

    1. we should not deny the subjective nature of patient narratives; it is not a weakness, but a strength
    2. we should strive to improve the opportunity and accessibility of narrative provision and receipt for both patients and educators
    3. we should seek to develop a culture of value, acceptance and transparency

    The issue of value is the one that I have struggled with. I look at my illness blog and know that it has value. It has been valuable for me as a patient, but also valuable to many other patients. The illness blog genre helps patients better understand what it means to live with illness and how to cope with the various side effects of illness and treatment. One might argue that there is valuable medical knowledge within the blogosphere.

    That being said, I am also taking a totally different lens when I look at the value in patient narrative. I am not looking at it from the perspective of the healthcare system or medical education. I am not arguing for the value in that context. I leave that to others. I am arguing that the patient narrative has value to other patients (and caregivers, family, and friends). The patient narrative focuses on the illness experience, not the disease. Medical education and the healthcare system is focused on the disease. In many ways, the illness experience is beyond their scope.

    I agree that there is value in patient narrative for medical education – but the value is different. It is looking at the illness experience through the lens of treating the disease. Where patient narrative and peer-to-peer sharing of experience can help patients better live with illness. It can help patients understand what it means to live with illness. If you haven’t experienced it, then you don’t understand it in the same visceral way that someone who has gone through it does.

    For a lot of my early stages of research, I was frustrated with needing to make the argument that patient narrative is valuable. I struggled with the frustration of the ideas of “evidence based” and “gold standard”, which all equate to quantitative (measurable), as being the only form of value in medicine and medical practice. I wanted to scream to say that illness experience matters too. My experience could help you be a better doctor. But now, I realize that I am making the wrong argument. I do not need to participate in that particular struggle. To me, the greater value in patient narrative is in the value it provides to other patients who are struggling to learn how to live with illness.

    Feature image by Valentin Salja on Unsplash.

  • The relationship between oppression and empowerment?

    The relationship between oppression and empowerment?

    Is there a relationship between oppression and empowerment?

    I am noticing that as I code my research narrative that often even within the same post, I write about an oppression but then I write about what I am doing to empower myself as a result of the oppression.

    Take for example my blog post entitled How do I be an ‘engaged patient’ in a hospital gown? (September 27, 2014). In the post I describe the challenge as a patient when wearing a hospital gown. I explain how the declothing and gowning is an oppression, especially when the patient is left in the gown unnecessarily – throughout the entire consultation.

    Within the same post I also describe my solution to the problem. I describe how I bring a hoodie and wear that over the gown. I have a zipper, so that it can be easily removed when it needs to be, but also can be easily put back on, so that I’m dressed throughout the interaction. I create a way to empower myself as a reaction to the oppression. 

    Is empowerment needed if there is no oppression? Can there be empowerment without oppression?

  • Oppression of the disease and its treatment

    Oppression of the disease and its treatment

    In looking at health literacy from a socio-cultural and critical perspective, one of the themes I’m looking at is oppression. I had originally thought that I’d be looking at my experience and how the healthcare system (e.g. providers, insurance companies) was oppressing me – although I questioned the term oppression in part because the healthcare system was also providing me with care. There were some aspects of the system that were setup to privilege the providers at the cost of oppressing the patients (e.g. the excessive amount of time patients spend in waiting rooms). This is where I thought I would be going with the theme of oppression.

    My work doing actor-network theory research has shown me how non-human actors (in some cases objects or software) can have influence. As I re-read through my research narrative, it occurs to me that in the same way as software can influence behaviour, the disease itself can be a non-human source of oppression, as can the treatment for the disease. Yes, these things are created by humans (but then so is software), but the actor (or influencer) of the phenomena under study could be a non-human actor.

    “It started at about 5pm last night, I felt these pulsing pains up my spine. By 8pm last night, they were excruciating whenever I was in the seated position.” 

    (This too shall pass, July 16, 2014). 

    Now, as I re-read through my research narrative, more so than the healthcare system, I see additional causes of oppression – the disease itself and the treatments for the disease. Initially, I had only been considering the actors as those that were people or corporations. I had not considered that in a healthcare sense, that there were non-human actors — diseases and treatments.

    When I look at the disease and treatment, I can see clearly the oppression that they exerted – and even four years later they continue to exert. I no longer have a question about whether or not the word oppression is an appropriate one. With breast cancer, both the disease itself and the treatments for the disease are sources of oppression.

    Feature image CC0 via Pixabay.

  • My experience of health literacy

    My experience of health literacy

    I had a realization the other day that will help with the final sections of my dissertation.

    The current, most often cited, definition of health literacy is defined by The National Academies of Sciences, Engineering, and Medicine (2004) as:

    “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions” (p.16). 

    Further, Digital Health Literacy, is defined at:

    “the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem” (Norman & Skinner, 2008, para. 6).

    I had thought that in my dissertation I was looking to redefine health literacy from a patient perspective. I had thought that what I was trying to create was something that might be adopted by others. However, I now realize that I’m not looking at a general definition. I’m looking to figure out what my definition is.

    I know that the research I’m doing is interpretive, and in no way am I trying to make generalizations, and yet, I had not internalized that when it came to this definition. I had thought that when I get to writing my discussion chapter that it would all just come together and I’d have this magic definition that would be adopted or something. But that doesn’t make sense. What I will have is my story and my experience of health literacy. It won’t even be a definition – rather it will be an articulation of experience that I somehow abstract into a conceptual framework or something like that.

    I’m looking forward to getting to that chapter. I’m currently working on a chapter that looks at my experience of health literacy through the lenses of critical literacy and socio-cultural literacy. Once I’ve done that, I will take everything that I’ve written and analyzed, and somehow bring it all together. That is the part I’m looking forward to – that building of some conceptualization based upon my themes and the different lenses of the story. It is nice to be excited about my dissertation again 🙂

  • We need to talk about ethics and social media: a conversation

    We need to talk about ethics and social media: a conversation

    I had been told that the book release was imminent, but I didn’t really believe it. Then, earlier this week my Google Scholar alert popup up with the book Chapter that I coauthored: We need to talk about ethics and social media: a conversation.

    Last summer Marie Ennis O’Connor and I spent many mornings/evenings having conversations about the ethical use of patient information that is shared on social media. We brought our thoughts together in a book chapter titled “We need to talk about ethics and social media: a conversation”.

    It is nice seeing the article online (I don’t have a print version yet). But even nicer was the memory of time spent with Marie writing the chapter. The time we spent working out the format, and figuring out how it would all come together. We spent a lot of team reading the seconds out loud to each other. We also had to work through regional language quirks.

    I’m a Canadian living in California, she is Irish living in Ireland. In Canada we have family doctors, in the USA we have Primary Care Physicians, and the Ireland they have General Practitioners. We have specialists, they have consultants. In many ways the systems provide the same structured services, but the names are different and there are nuances.

    The most important part of the entire process for me was spending time with Marie working on something that was meaningful for both of us. I’m so glad to finally be able to share it with others.

    Reference:

    Hogue, R. J., & Ennis-O’Connor, M. We need to talk about ethics and social media: a conversation. ETHICS FROM THE GROUND UP, 103.

  • Greater themes

    In reading today’s post by Carolyn Thomas at Heart Sisters, she talks about a show on CBC Radio (Michael Enright’s Sunday Edition), and how the interviewer highlighted that illness narratives were not just about the facts of the illness, but also addressed bigger life questions.

    That got me thinking about what my illness narrative is about, and what might make it interesting not just to those who have breast cancer, but also to a more general audience. Dealing with a critical incident, that has you contemplating your own mortality certainly brings in themes of larger life questions.

    One of the themes that I have in life is the tension between “living for the moment” and “saving for the future”. This is a constant theme in my life – but I’m not sure that comes out in my dissertation draft of my illness narrative. That narrative is too focused on the acute time in treatment when there is no plan for the future, as there is no ability to think beyond a 2-3 month horizon. I recall after active treatment struggling with how to think and plan for events beyond three months.

    One of the big life themes that I do address is that of exploring and expressing my values and how my values directly affect my treatment decisions. This really shows in my struggle to decide on breast reconstruction. I struggled with the role my vanity was playing in the decision. I recall the anger and arguments I was making, and realize that I was working really hard to convince myself of the decision, but the decision didn’t feel right inside. In the end, with the help of my surgeon, I changed my mind. I am thankful for that help. I can think of how others might interpret her behaviour as pushy, but for me it was the push I needed to really test my conviction in the decision I had made. I’m glad that I changed my mind.

    That brings me back to themes. I need to do some more thinking on the greater themes. My dissertation really focuses on the “knowledge” related themes, looking at what knowledges I was imparting on my blog. It doesn’t delve deeper to look at the larger life themes that I’m addressing. I am not wondering if that is part of the discussion that needs to happen in my discussion chapter (the one big chapter I have left to write). The change in focus that highlights that the story isn’t just about the knowledge that is being imparted, but that the illness story is also about larger life questions.

  • An update, a bit about project LEAD, and request for ed tech resources

    It has been a long time since I’ve posted to this blog. In April or May, we put my PhD on hold for 8 months so that I can care for my mother, who at the time was diagnosed with stage 4 kidney cancer. I lived with her most of the time, with a couple of short trips back to California to deal with my health issues, until she passed away on July 1st. Then we spend a couple of weeks trying to get her house and affairs in order. Since my dad passed almost 2 years ago, we are now in need of dealing with the estate. In many ways it isn’t that complicated, but still it is time consuming.

    I did do some academic professional development last week. I attended the week long Project LEAD Institute sponsored by the National Breast Cancer Coalition (NBCC). I learned a lot about the science around breast cancer as well as how different types of research are done. I’m particularly fascinated with epidemiology – it is a field that is exploding with access to new electronic data sources.

    This fall I’ll be teaching two classes at uMass-Boston: (1) Foundations in instructional design and learning technology, and (2) The design and instruction of online courses. It will be great to set students up for success in the program in the first course, and then see them again towards the end of their degree in the second course. I’m also looking forward to wrapping my brain around the latest trends in instructional design and online learning. Right now I’m feel a little out of touch – but I suspect that will change pretty quickly once I get back to some semblance of normalcy.

    If you have any suggestions for the latest trends in learning technology – what the hot tools of today – I’d be happy to hear your suggestions. What tools to you use in your teaching?

  • Privilege and equity in health care

    I shared the other day the idea the for the privileged equity feels like oppression.

    It occurred to me that this is in part why I am scared at the idea of moving back to Canada and relying on the Canadian healthcare system. The Canadian system is a good one. It is mostly equitable. It suffers from the same issues as most, in that people in rural areas don’t get as good care as those who live closer to major medical centres. That issue exists in the US too.

    But, at the moment, I’m extremely privileged when it comes to healthcare. I have good insurance. For the most part, I have access to excellent doctors, and I can afford my medicines. I have learned to use my privilege to get good healthcare.

    Going back to a more equitable system means I will lose my privilege. I will need to learn to navigate a different system. I will still have some privilege because of my education, but it will be much less than I have at the moment, in the vary inequitable American system.

     

  • Precision social media support – an #epatient example

    In early January, I joined Christopher at Just Talking for a podcast. One of the topics that came up during the podcast was the role of social media (and in my case Facebook groups) as patient support when going through illness.

    I spoke of my experience with Facebook groups relating to my choices are breast cancer surgery. Early in my treatment I was certain that I was not going to opt for reconstruction. I joined this awesome Facebook group called Flat and Fabulous. The women in it were a constant source of support, not just around the decision to go without reconstruction, but also on other aspects of learning to live with breast cancer and managing side effects of chemotherapy. I know that at any time of day I could post a message and I’d receive encouraging and informative responses.

    When I decided that I would opt for reconstruction after all, I had to leave the flat and fabulous group. Their guidelines were clear – they were there to support those who chose not to reconstruct. They were not making any judgement or value statements, just that they have a clear niche and want to keep it that way. And so, I left the group, and found another group – this time, the group I sought out was one that supported the specific type of reconstruction surgery I was having. This too proved to be very valuable to me, as I had 24/7 access to women who knew what I was going through. When I had a weird symptom I could ask, is this normal? Is this something I should call my doctor about immediately? or is it something that can wait until the next appointment? The group helped me prepare for my surgery and helped me be better prepared for what I would be experiencing in the aftermath of the surgery – all the little (and not so little) things the doctors forget to tell you.

    What is interesting about this is that I was about to find Facebook groups that aligned with where I was in treatment, and that as my treatment changed, I was able to find groups that aligned with those changes.

    In the pod cast, Christopher mentioned a connection to the concept behind precision medicine. The idea being that rather than giving one treatment for everyone, that we use some characteristic (in the case of precision medicine it is molecular makeup of tumors) to determine treatment. So, it is isn’t a one-size-fits-all, but rather a more personalized approach. In some ways, social media can provide this. In my case, it was with Facebook groups – there are so many different Facebook groups around the different areas and treatments for breast cancer that I was able to move from one group to the next when I needed to. I could find one or more groups that supported me in the stage / phase that I was in. When the group no longer aligned with my needs (or treatment choices), I was able to find another group that worked better for me.

    It makes me wonder if others who use social media for health support, if they do the same thing? Is the movement from one group to the next common?

  • Health Literacy repositioned

    I recently read an article on health literacy by Uta Papen: Papen, U. (2009). Literacy, Learning and Health–A social practices view of health literacy. Literacy and Numeracy Studies: An international journal in the education and training of adults, 16(2-1), 19-34. Retrieved from https://epress.lib.uts.edu.au/journals/index.php/lnj/article/download/1275/1326.

    The dominant view is that health literacy is an ability possessed by individuals (Weiss et al 1995, Baker et al 1999, Nielsen-Bohlman, Panzer and Kindig 2004, Lurie and Parker 2007). It consists of a set of competencies transferable to different contexts. Because health literacy is treated as being context-independent, it is assumed to be measurable through abstract tests. Accordingly, there is much research into patients’ levels of health literacy, this being seen as a prerequisite for developing new tools to teach health literacy. ~(Papen, 2009, p.20).

    The measurable idea is an interesting one. There are a lot of research articles that ‘measure’ health literacy. One focus of health literacy research and practice is to look at how medical terms are labeled / described and to make the language used more patient friendly. I think this is a good thing, but it is also a vary narrow aspect of what health literacy is. It only focuses on the basic reading / comprehension aspect of health literacy but does not look at health literacy from the lens of self-advocacy / self-efficacy.

    Rather than the dominant (very post-positivist, anything can be measured) view, Papen takes a position on health literacy that approaches health literacy as a practice – and more specifically, a social practice.

    The study was grounded in a view of health literacy as social practice. Accordingly, we talked about health literacy ‘practices’ rather than health literacy ‘skills’. Setting aside the notion of skills, we were able to explore what people do with reading and writing rather than to ‘assess’ how good (or bad) they are are what they are doing. This is not to say, however, that we are not interested in people’s abilities. But we did not define these as narrow skills. Rather we conceptualized them as context-bound and changing competencies, some of which, as I will show below, were not located in individuals but in groups and social networks. ~(Papen, 2009, p.21-22).

    She takes this one step further, and looks at how health literacy can exist in networks – so not just in the individual. The idea is that when you have a health problem, you don’t just look to yourself for knowledge, sometimes the knowledge you need exists and is shared within your network. Your network is what contains the knowledge you need to make your ‘informed’ decision.

    …health literacy is often ‘distributed’. By this I mean that it is not simply a property or an attribute of an individual, but that it is shared knowledge and expertise. It resides in the patient’s social network. An individual’s health literacy could thus be seen as the sum of what she knows and is able to do herself and what she is able to achieve with the support from friends, family and other significant people in her environment. ~(Papen, 2009, p.27)

    Reading this brought me back to the connectivist learning theory, and the idea that knowledge can reside within networks, not just within people. One of the principles of connectivist learning learning is that ‘knowledge rests in networks’ – and this distributed definition of health literacy is an example of how knowledge exists within the network.

    Prior to reading this example, I didn’t really ‘get’ the connectivist idea of knowledge resting in networks. But now I do. I know first hand how my social networks helped to ‘inform’ my health decisions. I cannot say that one person or even a group of people help to inform the decision – rather it was the network as a whole, together. This too links to concepts of complexity, where the network together is more than just the sum of the parts – it is a thing into and of itself.

     

  • breast cancer bootcamp

    At the BCC annual conference yesterday, one of the speakers, Dr. David Spiegel, mentioned that patients have much less anxiety if they take time at the beginning to make informed treatment decisions. One of the challenges that we run into when we are told we have cancer is the desire / fear / need to do something about it quickly. IMHO, the early detection rhetoric helps increase this need to do something about it quickly. The message we receive is that if you cancer you need to rush into treatment. However, this is not always the best course of action.

    Note, that I’m not an oncologist or cancer doctor. There are some cases where that rush is indicated, but in many cases, the cancer does not grow so fast that waiting a week or two will have a dramatic impact. Often you end up waiting that week or two anyways – while you wait for detailed pathology results, various scan results, maybe even genetic test results, and insurance approvals (yes that too is part of the process).

    There is a time in that window where patients could do some kind of educational intervention that helps them learn to make more informed decisions, and make decision based upon their personal values, rather than being forced into decision that doctors make for the patient – doctors who often just met the patient and are making decision based upon disease characteristics alone, rather than a combination of disease characteristics and patients longer term life and health goals.

    This got me thinking – wouldn’t it be nice to have some form of cancer boot camp – where once you are told you have cancer, while you wait for appointments and test results, that you could do some of that important identity and values work, as well as gain some knowledge about the disease itself, that would help you make better treatment decisions – better decisions that will help you with longer term happiness?

    When I talk to other survivors about things they wished they knew and understood, I often here things like – I wish I understood that I had choices. I wish I understood that I didn’t need to urgent jump to treatment, that I had even a little bit of time to think through things. I wish I understood some of the true long term impacts of the decisions I was making. I wish I understood some of the side effects better. I wish I understood that sometimes choosing a doctor is about figuring out who you have chemistry with, not necessary who is ‘best rated’.

    There are so many different aspects that are address a little in support groups, but a lot that is not. And support groups are often short duration – 90-minutes once a week or once a month. Wouldn’t it be nice if in that crazy time before you have a solid treatment plan, that there was some kind of experience – a mix of educational, emotional, and spiritual – to help you better deal with the diagnosis and make better decisions? Wouldn’t think help you live better with those decisions?

    I found myself thinking that this is the type of work I’d like to be doing. I’d like to be helping coach women through that process. One of the challenges is that women rarely make it to support organizations, like BCC, when they are in that state. They usually do exactly what they are told by the first doctor they see because of fear – because the rhetoric says that early detection (and therefore quick treatment) saves lives. They end up in support groups after all that has already happened – after critical decisions have already been made – and after they find themselves struggling to live with those decisions or find themselves wishing they were given more options. But in order to get that education (or boot camp) to happen sooner in the process, the diagnosing physicians need to buy into the need for it. They need to be willing to address the fact that they, the diagnosing physicians, are not necessarily the best person to be making these life altering decisions (their job is to outline options, and provide recommendations, but not make the decisions – they are not the ones who need to live with the decisions). In the new world of medicine, where patients have access to information but also to each other through support groups and social media platforms, physicians need to learn ways to ceed control, and support providing patients with the right tools to help the patient make the right decision for the patient – the decision that will lead to longer term acceptance of the situation.

    What do you think of the idea of a breast cancer bootcamp for newly diagnosed? Would it be something that could work in an online format? What type of information and what type of reflection activities would you think would be of value? If you have breast cancer, what did you wish you knew before you began treatment?

  • Critical health literacy, statistics, and treatment decisions

    I was asked to choose between ACT chemotherapy and TC chemotherapy. Both were shown to be as effective, so the decision was mine. In making the decision, I looked at the potential side effects of each, as well as what the standard of care would be in Canada. Further, I looked at the literature and saw that there was more data on the ACT regime. I used that information together with knowledge of how my body reacts to things and my gut-feelings to decide on the ACT chemotherapy. The medical oncologist confirmed my decision by saying that 80% of women who need chemotherapy for hormone positive breast cancer get ACT chemo.

    Now that I am much further out from the decision, I can see the problem with this statistic and some of the other data I used to make the decision. At the time, I felt comforted by knowing that this was a chemotherapy regime that was used in other places, and that it was common. If 80% of others were getting it, then it had to be the best choice right?

    The problem is that the statistic is skewed by time. The longer a treatment is available, the higher the statistic will be. In addition, the longer a treatment option is available the more 5 year and long-term survival data there is (academic measures of treatment used in evidence-based medicine). Once a treatment becomes standard of care internationally, the number of people that get that treatment becomes much higher than other options. It means that newer treatments will always have lower numbers – at least until they are proven to be more effective and take over as standard of care. So, the percentage of other people who have had that treatment isn’t necessarily a useful number when it is used to make the treatment decision. Further, the older a treatment is, the more likely there is long-term survival data on that treatment. It doesn’t mean the treatment is better, it just means there is more data about it!

    I also did not appreciate that looking to the standard of care decision was also not the best information for making my decision. It was comforting to know, but I didn’t appreciate that newer treatments take time to become the standard of care. So the newer treatment might actually be a better choice, but the statistics and standard of care data are not data that would support choosing the newer treatment options.

    This is one place where the practice of “evidence-based medicine” can fall apart when it comes to decisions in care. The evidence will almost always suggest the older treatment options. There is a bias towards the older and better understood option. That is a nuance that was not appreciated by me, an academic, when I was in the position to have to make the treatment decision. It was not something that anyone pointed out to me.

    I think this might also be an important factor when promoting clinical trials. In order to advance care, clinical trials are important, and often provide better treatment options – or at least that is their goal. However, patients can shy away from them in part because of a misunderstanding of the data, and not appreciating the biases associated with the current standard of care.

    Another non-medical place where I see this bias is on YouTube – I have been using YouTube for years to provide how-to tutorials for technology. My most viewed video is an old one. But because it has been there for years, it has a much higher view count than newer and better versions of the same tutorial. The higher hit count of the older one causes more people to watch the older one, which in turn increases the hit count more. The newer one cannot catch up. There is a bias towards the older one because it has a history. It has been available longer and therefore has had more time to get hits. I see this bias all over the internet. Whenever an already known entity needs to compete with something new – the older known entity goes into the competition with a bias because of its history.

    I think this is another way in which we can look at health literacy from a critical perspective – what are the biases in the data itself?

  • Study idea: Comparing pt peer SE advice with care team SE advice in MBC pts

    While I was hiking yesterday I had a thought for a study I’d like to do – or at least research whether anyone else has already done it. Of course, I cannot even think about it until I’m finished with my dissertation research, but I thought I’d write it here so that I don’t forget, but also to see what others thought about it. If anyone has any suggestions on where / how one might get some funding to study this I’d love your suggestions. A grant of some type would give the study some legitimacy, however, at this time I’m not affiliated with anyplace that could do that.

    Anyways, more to the point, the study idea. The title would be something like: Comparing online peer-to-peer support with oncology care team support relating to chemotherapy side effects in metastatic breast cancer patients.

    Part of what got me thinking about this has been conversations with my friend Lori Wallace. She has metastatic breast cancer (MBC) and is very involved in the patient online communities. When she learns something that might be helpful, she makes a note of it.

    When Lori begins a new chemotherapy regime, she looks up her notes and asks others about the side effects. She recently started Xeloda, which has a common side effect of “hand and foot syndrome”, where the skin on the hands and feet get paper thing and dry – the folks at Chemocare describe it as similar to having a sunburn on your hands and feet. One of the suggestions she had learned from her support group was to take 400mg of vitamin E. This is something her oncologist, who is truly amazing, had never heard of. Lori describes it as “It makes a subtle difference, but it HELPS and that’s a big deal. It’s the difference between walking with with painful feet and walking with bloody, raw painful feet. Feet hurt either way, but with Vit E, it’s at least possible to baby the feet a few days, then do normal things and “beat them up” without all ones skin peeling of and bloody fissures.”

    Another thing that Lori learned from her support group was that Ritalin could help with the debilitating fatigue she was experiencing. It turns out that her oncologist had heard of it, but that it is not approved for that purpose. As a result, her oncologist could not suggest it. In the end, Lori went to one of her other doctors (palliative care or family medicine) in order to get the prescription.

    These are just two examples of the type of information that patients are gleaning from each other through online support groups. It isn’t necessarily that the health care team doesn’t know – more that they are not empowered to share – but also that they don’t always have the time or motivation to seek out ways to reduce some of the sometimes rare side effects of a given chemotherapy regime. Patients on the other hand are motivated to find that information. When you are suffering, you reach out to those who understand and appreciate your pain, and can offer some ideas on how to make your life better.

    I want to highlight that this is very different than snake oil type “cures”. This is not people who have no experience with the illness lecturing on what might work – rather it is people that do know exactly what it is like to live with the illness or side effect, and can share the things that make a “subtle” difference that really is the difference between having a good day and having a bad one – and when your days are few, every good one matters.

    I also want to highlight that the information received isn’t always useful and in some cases does cause harm. This is part of the balancing act patients of critical and chronic illness need to learn how to navigate.

    For a research study, I was thinking of looking at what knowledges MBC patients share in their online support groups, and how that compares to the knowledge they gain from their healthcare teams. I’d also like to contrast that with the information that oncology teams receive from formal healthcare training (e.g. continuing medical education courses and conferences). I want to articulate the role that online support groups play that is beyond providing social support. We know that social support is provided by these groups, but there is also medical information provided. There is also patient empowerment support. There are real suggestions that make a huge difference in quality of life for patients. I’d like to look at this and formalize what is happening within these communities and associate it with the role of ePatients in the future of medical care.

    Now, my question for my readers, does this sound like a needed/good study idea? Does anyone have any idea of organizations that might be willing to fund such a study? 

     

     

     

  • Survivor of the journey

    I struggle a little with my choice of words – in part because others are so challenged by it. I’ve talked about the battle metaphor and my challenge it with. Now I find myself reflecting on the words Survivor and Journey.

    I chose to identify as a breast cancer survivor. I use the term survivor for lack of a better word. It is the word the most people understand. It doesn’t feel authentic for me because I will not know if I survived breast cancer until I die of something else. It is also a word that is hurtful to dear friends of mine – those with metastatic breast cancer who are living today but know that they will not survive breast cancer. For them, the disease is terminal. I have an internal struggle when I use that word, but alas, I use it because it is a term that other people understand.

    Journey is another one of those words. Every time I write the word journey I think of Emily McDowell’s empathy care “Illness is not a Journey”. And she is right, illness is an experience. Calling it a journey puts some pressure for the need for personal growth. Sure, some people do grow, and have spiritual awakenings as a result of their cancer experience, but not everyone does, and no survivor should be expected to have a magical transformation.

    But then I am stuck for another word. I don’t have a better option to explain my experience – especially when I’m writing it in the form of an autoethnography, where there is specific insight and knowledge coming from the articulation of the experience. A journey is to travel from one place to another. For me, the experience of breast cancer was a journey – a form of transformation. From a purely academic perspective, I see that I have transformed (maybe grown). I see value in different types of research. Would that have happened without the cancer experience? Maybe, but likely not to the same extent that it has.

    The interesting thing is that with time I will learn to own the words the I chose. I have learned to own it when I call myself a survivor. I just haven’t yet chosen to own the word journey.

    What do you call your experience with illness? Do you like or dislike the word journey?

  • Remission society and mourning my fantasy future

    I apologies to those who read all my blogs, as I am cross posting this. I’d love to hear answers from the various readers of my different blogs.

    I want to connect two ideas: the idea of remission society as described by Arthur Frank (1995), and the concept of the fantasy future that I learned while on a cancer care retreat at Commonweal (February 2016).

    Frank (1995) explains that anyone with a chronic illness lives in the remission society. Frank (1995) describes how “in modernist thought people are well or sick. Sickness and wellness shift definitively as to which is foreground and which is background at any given moment. In the remission society the foreground and background of sickness and health constantly shade into each other” (p.9). I interpret this as the way in which I shall never not be a cancer survivor. Breast cancer is a sickness that will always be part of my identity, regardless of how healthy I am at any given moment. It also will always affect my wellness. I will never be well in the same way I was well before cancer. I may be in remission, where I am not sick but nor am I well. I think of remission as this space in-between, or perhaps above or below, not on the same axis as the well or sick dichotomy.

    In order to deal with my emotional wellness, I needed to address the loss of my place in the well category in the well or sick dichotomy. While in active treatment, I was clearly in the sick category; however, once chemotherapy and surgery where done, and the last of the known cancer was removed from my body, I was no longer in the sick category, but also was not in the well category. I was in remission. It was learning of the falseness of this dichotomy that helped me move beyond it. During a group therapy session, the therapist made a reference to the idea of a fantasy future. That is, the concept that all futures are a form of fantasy. We imagine what our future life might entail (e.g. growing old together, remaining in perfect health), but the reality of life is never what we had imagined. A big part of my emotional healing was to forgive my body for the loss of my fantasy future.

    Another part of this reality, and one that I’m still working on, is that it should help me focus more on the present. What is in the now, and the short term future, rather than the long term future. This is, in theory, to help reduce anxiety today, but focusing on today rather than focusing on the uncertainties of tomorrow. However, this of course causes the problem I describe in my paradoxical future. Where I struggle with the challenging balance between planning for the future and seizing the day.

    Perhaps that is in part what it means to be in the remission society (as opposed to being sick)? When I was clearly sick, my focus was on a very short timespan. I saw life on very short horizons – tomorrow, next week, next month – never more than three months. I just couldn’t plan that far in advance. But now, after I have mostly healed from chemotherapy and surgery (I say mostly, because some of the damage will never be healed), I see the potential for those horizons. It is because I see them only as potential and not concrete that I run into the paradox. Sure anyone who is well will say that they don’t see the future in concrete terms, but in the scale between potential and concrete, a well person sees the future a lot more concretely and someone who is sick, who only has a sense of potential for the future. In this world of remission society, I’m somewhere in the paradoxical middle. Afraid to have a fantasy future, because I got burned by that idea.

    Do you have a fantasy future? How concrete is your sense of future?

    Feature image CC0 via MaxPixel.

  • Paradox of Patient Empowerment and Care

    I find myself looking at all my past experience, and making connections between what I know as an educator, and PhD student, to what I have experienced as a patient with critical/chronic illness. Leading off from Autumm Caines’ post about Virtually Connecting focus groups, I want to chat a little more about the paradox of patient empowerment and care. I watched the first focus group and attended the second and third. It was during the third focus group that I was challenged on using a famous Audre Lorde quote “you cannot dismantle the master’s house with the master’s tools” – that challenge led to an ah-ha moment for me – the paradox of patient empowerment and care.

    When we talk about the need to empower patients, we talk about patients taking an active role in their healthcare. This is a challenge the often very paternalistic healthcare system – where we as patients are suppose to do what we are told. The language often used is that of “compliance”. It goes further to sometimes even blame the patient. We hear things like “the patient failed to respond to this medication”, rather than “the medication failed the patient”. Language matters.

    In one breath, I see patient empowerment as giving patients a larger voice in the healthcare system. I talk about medicine being practiced with patients rather than on patients.

    On a side note, I wonder how much of this is an American view point – where here you often (if you live in a populated area and have the privilege of good health insurance) get to choose who provides your healthcare? This is the land of second and sometimes even third opinions – but it is also the land of shopping for healthcare providers that align with your needs/personality, etc. The choice of provider affects the culture. I do think the empowerment situation is somewhat different in a socialized system, where you don’t have the choices in who you see (at least not to the same extent). In Canada, the gatekeeper is your family medicine physician (primary care physician or PCP). When you need a specialist, you go through your PCP. In the US, at least from my experience, your insurance company plays a much larger role of gatekeeper. Your insurance company determines if your PCP needs to make a referral or if you can self-refer. Your insurance company (and bank account) determine which providers are in-network – and which ones you can afford to see. In many cases, self-referral is what happens. When I was diagnosed with cancer, once I had a confirmed pathology, I could self-refer to any surgeon or oncologist. I didn’t need my PCP to make the referral.

    Where do I see the paradox? I see it in the need for the healthcare system to provide care. When you are in the middle of a health crisis, you need to know that the healthcare system is going to care for you. You need the maternalistic sense that someone(s) has your best interests in mind, and that they will ensure you are cared for. When you are in crisis, you don’t need, nor do you really want empowerment. You need care.

    Going back to the Audre Lorde quote “you cannot dismantle the master’s house with the master’s tools”, the patient empowerment movement isn’t so much about dismantling the tools completely, although it is about dismantling some of the paternalistic tendencies in the system. There are times when we need the use of the master’s tools. We need the expertise of our physicians and other allied health professionals. We rely on them for care. But when we are not in crisis, we also need to know that our voices are heard.

    In online teaching, we talk about the transition of teacher from “sage on the stage” to “guide on the side”. In many ways, this is the transition that empowered patients are looking for in healthcare. They want their physicians to be guides rather than sages. The expertise is desired, but also the recognition that patients carry prior knowledge and expertise. I like to use the phrase “I am an expert in my body”. My medical oncologist is an expert in breast cancer and the pharmaceutical treatments for it, but he is not an expert in my body. I am the one that is living in it.

    Do you see a paradox between patient empowerment and care? How is patient empowerment different in socialized medicine settings? 

  • Oppression?

    Maha Bali’s latest blog post on Unpacking terms around equity, power and privilege has got me thinking (actually, I was thinking about it just yesterday, but her post has prompted me to write more about it!). I’m slowly making my way through Freire’s Pedagogy of the Oppressed.

    “But their perception of themselves as oppressed is impaired by their submission in the reality of oppression” (p. 45)

    I’m trying to put this all in context to my research – looking at my lived experience as a breast cancer patient. I am struggling with some of the language. Is what patients experience oppression or is it simply a power imbalance – which doesn’t necessarily mean oppression? But then Freire has me asking myself if my perception is impairing my ability to see the reality?

    Is it oppression when the end goal is caregiving rather than profit making? The purpose of the healthcare system is to care for patients, although there is certainly a level of profit making that is at play. In the US, there are a lot of times when your insurance affects your treatment options. Insurance companies seem to be the ones holding the power here, rather than medical professionals. In that essence, it is both the physicians / care providers and the patients who are in the subservient /oppressed role.

    “the oppressed, who have adapted to the structures of domination in which they are immersed, and have become resigned to it, are inhibited from waging the struggle for freedom so long as they feel incapable of running the risks it requires” (p. 47).

    As a patient, there is a risk of me rocking the boat too much. If you complain too loudly in the US system, you run the risk of being fired by your healthcare providers. That being said, if your healthcare providers suck too much, you often have the ability to change providers. If the ACA (Affordable Care Act otherwise known as Obamacare) gets revoked, then there is a huge risk of the patients who are the worse off already, being unable to get insurance. This adds a layer to the disempowerment of patients. In Canada, what I’ve seen in this situation, is that the patient just loses access to care completely. If you complain loudly enough, doctors stop seeing you – and you don’t always have options (especially if you are located in a rural setting).

    Another place where I personally see struggle is around wait times. In the US, I am privileged to have good insurance. This means that I have easy access to healthcare. In many cases, the wait times are short. I’ve come to the expectation that I get responses from my care team within 48-hours of sending in an email requires. That type of response is unheard of in Canada (frankly, so is emailing care providers!). If I need to wait a couple months for a procedure or specialist appointment, I find myself complaining – but the reality it, my privilege in the US means that I have access that far exceeds what I’d get in Canada.

    Canada has a much more equitable system, but it suffers from huge wait times. In Canada, the only privilege I carry is that I’m educated enough to ask questions. I’m able to figure out aspects of the system that others cannot, and yet I’m still placed in the queue just like everyone else. My privilege does not buy my way to the front of the line, but it does give me the information I need to ask the necessary questions to ensure that I’m waiting in the shortest line.

    And so, I’m in the position of having adapted to the structures of domination, and I know a fair bit about how to play the games I need to play to get things done. With that, I’m hesitant to want to rock the boat, for fear that it would impact my personal healthcare.

     

    “Any situation in which ‘A’ objectively exploits ‘B’ or hinders his or her pursuit of self-affirmation as a responsible person is one of oppression” (p. 55)

    So this goes right back to my original question. When I’m looking at the patient experience within the healthcare systems, is that one of oppression? The system is intended do provide care, not exploitation. There are definitely power imbalances within the system, but does a power imbalance mean oppression? What do you think?

  • Patient Health Literacies

    In Arthur Frank’s (1995) seminal book The Wounded Storyteller, he cautions “On rare occasions when I have taught this book, students’ biggest initial difficulty is to stop reframing everything ill people say into a question of how some health-care worker might respond.” (Location 115)

    I often find myself falling into that trap. I find myself thinking about my research, and the focus on peer-to-peer patient learning, and yet seem to feel that the value in the research is in the change in how health-care workers respond. Really, my focus should be a change in how my work can help patients and caregivers find agency within the healthcare system.

    This idea of value of knowledge (or value of literacy) is something that Brian Street talks about in Social Literacies: The Schooling of literacy. I talked a little about it in my post on critical digital health literacy. In the chapter I’m reading now, Street (1995) talks about how the definition of what literacy is (the value proposition) is defined by the dominant culture. When we talk of a critical literacy, we are turning that around and looking at it from the perspective of the non-dominant – perhaps those who are seen as not literate.

    In the health literacy context, we see the definition of digital health literacy from the perspective of healthcare systems –  “the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem” (Norman & Skinner, 2008, para. 6). To me, this definition feels like what health professional want patients to have, not what patients necessarily want or need. The health literacy definition is from the perspective of the dominant culture. It is also very solution oriented – as if there were only one solution to the “health problem”. The human body is complex. It is a complex system. There are many different ways in which to approach a health problem, and not all of those involve solutions.

    Now if I look at it from my perspective as a patient, and not a healthcare professional, I can see literacies in a different light. If I look at what I consider important to be “health literate” from a patient perspective, I’d say:

    1. Understanding the disease well enough to explain it to both non-medical professionals and medical professionals (knowing that the language of the medical profession is not the same as the language used by the general population).
    2. Understanding the healthcare system well enough to get the care you are looking for. This in part means knowing who to ask which questions to, and knowing even what things are available to you as a patient. Understanding the hierarchies within the healthcare system helps to ensure you are asking the right people the right questions.
    3. Knowing where to go to get support from peers.
    4. Knowing how to identify individual experiences of disease experience versus generalized experiences. That is, developing an understanding of what aspects are typical and what aspects are unique to the individual experiencing the disease.
    5. Understanding the disease well enough to search for information on the internet, and discern appropriate sources of information (e.g. being able to identify snail oil).

    My question to you is, as a patient, what you see as the important things YOU need to know in order to manage your personal health? 

    Feature image: By NASA/MSFC/David Higginbotham – NASA Image of the Day, Public Domain, Link

  • The News

    Bumping and screeching, the plane finally lands.  I’m operating on very little sleep. I’m exhausted and hungry. I turn on my phone. I try to text my Aunt letting her know that we have arrived, however, the text keeps failing. I wait rather impatiently as the phone reset and the plane taxis toward the gate. Finally I manage to get the text to send, “We have landed”. She replies with “Meet us near the Tim Hortons. Go out the doors and walk to the right”. I comment to the gentleman sitting next to me how ironic that while waiting at a US airport a Canadian would be getting a coffee at Tim Horton’s—a rather ubiquitous donut and coffee chain in Canada.
    We exit the plane and stop at the first restroom. We then follow the signs towards baggage claim. We seem to have landed at the furthest gate from the exit. We have carried-on all our bags, so we don’t need to pick up baggage. We can leave the airport and head directly to the hospital. My Aunt texts “I will meet you in baggage claim”. The change in pickup directions doesn’t register as anything special in my mind.
    My left arm is hurting. I mention to my husband that I should put on a compression sleeve so that it doesn’t swell, as it is prone to lymphedema. He suggests that we pause there – still within the secure part of the airport – so that I can put it on now. I agree that it is better that I get it on before any swelling happens. If my arm does swell it can take months to get back to normal. I see a bench, so we stop and I dig out a compression sleeve from my backpack and put it on. I feel like we are keeping my Aunt waiting, and we need to keep moving towards baggage claim.
    We exit security to discover we are on the upper departures level of the airport. We follow the signs to the escalator. We hop on with our roller bags behind us. We are both scanning the baggage area looking for my Aunt. My husband spots her first and waves. She waves back and moves to greet us as we step off the escalator.
    I step off the escalator and take a few steps towards my Aunt. I reach over to give her a hug of greeting. I give my She whispers in my ear: “I am sorry honey, your father passed 10 minutes ago.”

    Recently, I hosted a couple of ePatient conversations about “Making the private public: Why we blog about illness” (see Virtually Connecting ePatients). This last week has me thinking more and more about why I blog – both here and about illness. Last year, when I reflected on why I blog on my Breast Cancer blog, I talked about blogging as a way to communicate to many people, but also blogging as a way to meet my compulsion to write.

    Now, I’m reflecting again on why I blog (and why I write). There is more to it that what I had previously written. I used my breast cancer blog as a way to tell my loved ones (and the world) what I wanted done if I died. I wanted it recorded someplace so that everyone knew, and there was no doubt or question – not that I anticipated any, just that it blogging it helped to make things easier for my loved ones in the event of my death.

    Another thing that drives me to write, and to blog, is when things keep replaying in my brain (e.g. the story above). Writing them down seems to work well to help stop the replay. It helps me process what happened, but also helps stop the flashbacks and tears associated with the flashbacks. The tears still roll as a read the passage above, but it is no longer repeating itself in my brain over-and-over. Somehow putting it on a page and sharing it, helps me move passed the flashbacks and reduces the intensity of the emotion. I think this is an important reflection on my blogging, as a lot of my breast cancer experience was a trauma, and blogging helped me deal with the trauma.

    Feature Images: Dad’s first fish after we moved to BC in 1976.

  • Tears of fear

    I scan over the document that she hands me, and immediately my eyes fixate on one word malignant. An uncontrollable wave of emotion hits me. Tears start streaming from my eyes. Just at that moment, the ultrasound tech opens the door to the waiting room and calls my name. She introduces herself but I totally miss her name. I cannot think about anything except that word–malignant.

    “Please remove everything from the waist up and put on the gown with the opening in the front”. She then goes to step out of the room. I look around searching for a box of tissues, and cannot see them. I stop her from leaving asking for the tissues, as tears fall from my eyes and my nose starts to drip. I hate that nose dripping feeling that comes with tears.

    I wipe the tears from my eyes, blow my nose, and take off my shirt and tank top. I put on the gown with the opening at the front, not bothering to tie it up so that the tie doesn’t get in the way of the exam. The tech left me a warm blanket. I lay on the exam bed and put the warm blanket over me. The warm blanket is such a nice touch, it feels like a hug.

    The tech returns to the room, “I’m going to scan your left breast. Do you feel something?” I show here exactly where the lump is that I’m feeling. Lump, it is such a loaded word. Just like malignant. It doesn’t really describe what I feel. I feel an area of hardening inside my left breast near my underarm. It is only noticeable if you press it. I feel my breast and find the hard spot. I show the ultrasound tech and she takes a marker and marks my skin.

    “Please roll onto your right side, I will place this foam cushion behind your back to make it more comfortable. Also, please lift your left arm above your head.” I do as I’m told. The cushion makes it easier for me to relax in the awkward position necessary for the exam. Tears are falling from my eyes again. I lose all sense of feeling. At some point she squirts the ultrasound gel on my skin but I don’t feel it. She starts the scan, and I watch the screen. The areas of white and black swirl on the screen. She stops occasionally to hit a button and take a still picture of what is on the screen. The entire exam takes less than two minutes.

    “I’m going to show the images to my boss, the radiologist, and she will come in and possibly do more scans, and let you know what she sees”.

    I am paralyzed with fear. Tears rolling down my eyes. I remember the words “the radiologist wants to see you”. Words from the day my world got turned upside down. The words I never want to hear again.

    The radiologist, a lovely lady with long curly hair, walks into the room introducing herself. Again, I do not catch her name, tears pouring down my eyes. “The good new is, that I see nothing of concern on the scans. No signs of cancer, no signs of swollen lymph nodes. We will be happy to scan anytime if you notice any changes.” It was the changes that brought me here. I take a deep breath and let out another wave of tears, this time they are tears of relief rather than tears of fear.

    I tell the radiologist “thank you for coming in and giving me good news. It is nice to have a radiologist tell you something good rather than only the bad stuff”.

    Although there is very little use of the term within the academic literature, within the cancer blogosphere this phenomena is known as scanxiety–referring to the fear of scans after a cancer diagnosis. I do not recall when I first heard the term, but I immediately understood what it mean. The anxiety around getting scans and awaiting the results of scans. This is especially the case after a cancer diagnosis, when scans are often the only means of determine whether or not your cancer has returned or whether or not it has progressed (gotten worse).

    I recall reading about scanxiety (sorry, try as I might I could not find a reliable source), that it was not so much about the fear of results, but rather the memories of past tests and past test results. I think my experience this last week is a demonstration of exactly that. I was pretty certain that what I was feeling was scar tissue; however, walking into the ultrasound room for my first breast scan since surgery back in December 2014, brought back a flood of memories, a flood of intense sadness, a flood of fear.

    The story above is based on my week this last week. I wrote it in a different format – one that I’m playing with. It is part of my experimenting with a new voice when working on evocative authethnography.

    What did you think? Did the story communicate at least some of the emotions associated with scanxiety? Was it more effective that just describing it, which is pretty much what I did in the two paragraphs following the story. 

    Feature image Public Domain available from Wikimedia Commons.

  • Emotional reactions to reading narrative analysis of cancer experience

    In preparing my new dissertation study proposal, I was tasked with reading a book chapter on narrative research – specifically:

    Josselson, R. (2011). Narrative research: Constructing, deconstructing, and reconstructing story. In F. J. Wertz, K. Charmaz, & L. M. McMullen (Eds.), Five ways of doing qualitative analysis: Phenomenological psychology, grounded theory, discourse analysis, narrative research, and intuitive inquiry (pp. 224-242). New York, NY: Guilford Press.

    The chapter describes what narrative analysis is, but also provides a specific example of narrative analysis. This is where I ran into challenges. The example given involved the analysis of an interview of a cancer patient about the losses and identity crisis she experienced as a result of her cancer diagnosis and treatment. As I read through the example, I found myself completely relating to the quotes from the interview. I found the journey through this persons cancer experience had a lot of parallels to my journey. It was emotionally difficult to read, as each paragraph brought back a flood of new memories and their associated emotions. I was very aware of what was happening as I read. This reaction was such an unexpected one. I find it difficult to think back to how I might have read the chapter before with a dissociated passive interest, rather than an emotionally charged interest.

    What was clear through the reading and description of the analysis process was that the researcher doing the analysis was an outsider. She was looking in at the interview text without emotion. The words on the page represented a text or story that was disassociated from the person who was telling the story. The analysis felt cold and disconnected. It was analytical. To me, it felt wrong. It felt like the researcher was trying to assign meaning to the words of the research participant without knowing what it meant to go through the experience. There was a distance between the analysis results and the participant interview data.

    It was reading this that served to outline the difference between ethnography and autoethnography. Ethnography is done from the perspective of an outsider. The researcher is looking in and observing what is going on, but is not themselves a part of what is happening. In some cases, this disassociated view provides an understanding and perspective that an insider cannot see.  However, as an outsider the researcher can only see what can be observed. The researcher cannot truly understand the experience of participant because they are not the participant. They are not an insider.

    It also helped me to better position my research. I see even more now how I am in a unique position as a blogger and breast cancer survivor to understand the culture and phenomenon (illness blogging) that I will be studying. The lens through which I interpret the stories that I collect will be directly influenced and connected to my experience as a breast cancer survivor and blogger.

    What this also highlighted was that what looks like an innocent example about a cancer experience is something that will affect me in an emotional way. The reading of the Josselson chapter taught me not only about narrative analysis, but also taught me that stories of cancer have a deep impact on me personally. I have an emotional attachment to the story in a way that someone who has never had cancer cannot understand. I am an insider.

  • Social media and ePatient blogging – a Virtually Connecting special issue

    When Dr. Michelle Schira Hagerman (@mshagerman) asked me to speak to her class about my experience as an ePatient blogger and my upcoming PhD research I thought it would be a great opportunity to facilitate an expansion to Virtually Connecting. I have wanted to do more in Virtually Connecting in the ePatient space since we did the first sessions at the Queens University of Belfast ePatient blogging and microblogging conference last September.

    In the discussion, I talk about the impact illness blogging (http://bcbecky.com) has had on me, but also the ethical and identity implications of blogging about illness. I mention a free course I created to help those who might want to blog through their illness (http://shouldiblog.org). I mention a twitter chat that helped me get connected and talk about breast cancer (#bcsm). We also touch on the learning theories that influence my research, specifically connectivism and cognitive flexibility theory – both of which I’ll be writing more about as I prepare my PhD ethics proposal and dissertation.

    I look forward to doing more Virtually Connecting sessions within the ePatient (patient engagement and advocacy space). The next session in this area is being planned as part of the Medical Humanities stream at the American Society of Geographers (AAG) conference at the end of March.

    Here is the video of our discussion:

  • Shivering in a paper gown…

    I am very proud to have had a chapter that I wrote included in this anthology (“Breasts that aren’t Breast”). I’ll be attending the book launch on Thursday evening in downtown San Francisco – if you are local and want me to pick up a copy for you, let me know.

    About the Book: Shivering in a Paper Gown

    In a moving, honest and raw style, thirty young women tell their stories about the aftermath of living with breast cancer. Far from the trite and saccharine, the authors’ combination of dark humor, sass and solidarity throughout the challenges of a life-threatening disease shine through.

    The book’s authors have many stories to share—stitching broken and scarred bodies back together, reconstructing identities, denying and confronting and accepting death. The authors reveal the realities of life, through and with cancer, as they learn how to survive and in the process, how to live.

    The personal narrative stories beg the reader to step into the space that cancer has razed, to consider what is most beloved and cherished, and to ask what the sum of one’s life will be. This anthology is relevant to cancer survivors and those who have gone through trauma. While the authors’ common bond is cancer, the stories cover the topics of: body image, parenting, spirituality, social support, emotional renewal and end of life choices.

    For every book sold, a woman going through breast cancer will receive monthly support group services through the Bay Area Young Survivors (BAYS). BAYS is a support and action group for young women in the San Francisco Bay Area who are living with breast cancer and were diagnosed before the age of forty-five. The goal of BAYS is to break the isolation of living with breast cancer, by providing a community built on compassion, understanding, hope, and inspiration.

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