BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Health Literacy

  • Relational and activity based identities

    Relational and activity based identities

    Basilica of Saint Simeon Stylites

    I’m currently reading Teaching, Learning, Literacy in Our High-Risk High-Tech World: A Framework for Becoming Human by James Paul Gee (2017). In it, he talks about two types of identity (at least to the point that I’ve read so far).

    First is activity-based identity. These are the identities we have based about activities that we choose. For example, I’m a blogger. I identify as a blogger. This is an activity-based identity. It is based upon something that I do, and more so, something that I choose to do.

    Second is relational identities. These are based on categories that are attributed to us. For example, I am Canadian. That is a relational identity. I was born in Canada, and am a citizen of that country.

    In the world that I was thrust, I am also a cancer survivor. That is a relational identity. I did not choose to be a cancer survivor, rather, by nature of a diagnosis of cancer I became a cancer survivor.

    I chose to use that new identity as cancer survivor to become an ePatient (a patient who is equipped, enabled, empowered, and engaged in healthcare). Being an ePatient is an activity-based identity. I’m not an expert ePatient – not yet anyways, but I am an ePatient. It represents a group of people and culture in which I have chosen to be a part of.

    Now, Gee also talks about how sometimes we choose to reclaim relational identities to make them our own. I see this with cancer survivors all the time, trying to figure out what this new identity means, but also finding meaning in it. I chose to use the term cancer survivor, largely because it is something people understand. It isn’t a label that I would have chosen myself, but it does effectively tell people that I am part of the group of people who have experienced cancer as a patient.

    On a side note, at one point Gee mentions “Saint Simeon Stylites (A.D. 390–459) was an ascetic who lived for 37 years on a small platform atop a pillar near Aleppo in Syria. He inspired a 6-century-long succession of stylitoe, or pillar hermits (Lent, 2008).” (p.97). I thought I’d share a feature image of what was left of the pillar that Saint Simeon Stylites stood upon. We visited it in December 2008 when we were in Aleppo Syria.

    I’m not sure what all this means yet – just that I needed to write about it. I needed to blog about it – because I am a blogger and that is what I do.

  • Self-awareness as health literacy

    I was walking with my friend Lori today and among the many things we chatted about, one of them was health literacy – the topic for my PhD dissertation. I had talked a bit about how health literacy isn’t just a skill but rather it is a practice. I read an article by Uta Papen that talked about health literacy as social practice.

    The article mentions a different frame of reference for defining health literacy – specifically:

    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 at what they are doing. This is not to say, however, that we were not interested in people’s abilities. But we did not define these as narrow skills. Rather we conceptualised 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).

    One thing that came up in our conversation was the importance of self-awareness and body-awareness as a health literacy. Both Lori and I are very aware of our bodies – sometimes this can be rather uncanny. Lori has felt her cancer growing (she has metastatic breast cancer), and has noticed tumors growing before they show up on scans. She is highly aware of when things are not right. This often reminds me of the multiple intelligences theory – and how one of the intelligences surrounds body awareness, but I don’t completely buy it, as I do think that to at least some extent this awareness can be learned.

    Our discussion turned towards health literacy, and I found myself asking, is this sense of body awareness or self-awareness a health literacy? Is this something that patients (or people in general) should consider developing – a broader awareness of what is happening within their bodies, but also learning how to express those changes in language that others understand?

    And now that gets me thinking about communications issues between patients and doctors (or other healthcare providers). I can recall several times when I have described what I am feeling in a way that has been misinterpretted by healthcare practitioners. Or when I hear them use a term and I think I know what it means, and so I use it to describe what is happening to me, and that description then leads us down a wrong path … so that maybe my awareness was actually a problem.

    Hmmm… I’m not sure anymore.

    Should people be more aware of what is happening in their bodies? Or is perhaps, willful ignorance also a strategy?

    In that very same article, I also wrote myself a note that ‘Passivity could be an intentional expression of self advocacy‘. I’m pretty sure I’ve talked about this idea before. If you are intentionally abdicating decision making, then that can be seen as self-advocacy, as it is in an intentional choice. Abdicating decision making is only a problem when it is not intentional.

    What is amusing is that this blog post has meandered from one thought to another, loosely connected and yet somewhat disconnected. This is exactly how my conversations with Lori go … we walk and we talk … we have some good ideas, and not so good ideas … either way, it is a great way to spend an afternoon.

     

  • What I wish I knew sooner about prescription meds #patienthealthliteracy

    I have been living in the US for almost 4 years, and am just now learning something about how to reduce some of my crazy medication costs. When I ran into a problem with my blood-pressure meds where the generics contained gluten so I had to pay extra for the brand name. At the time, I complained loudly about the increased cost, but no one mentioned to me that I should search the manufacturer’s website for discount cards – no one!

    It wasn’t until my husband was told about a coupon that I realized that I should be checking for coupons for all my brand name prescriptions – I have a few – like the miracle drug, Horizant, that significantly reduces my neuropathy pain. I am just now learning that for a year, I can save – rather than paying $240/3 months, I could pay $25/mo or $75 / 3 months with a prescription coupon card from the manufacturer.

    This is an area where having patient health literacy makes a big difference. If you don’t know to look, you don’t look. It never occurred to me that I could be saving that much money on prescription medication.

    Now I’m going through my medication list and have promised myself that anytime I see a huge co-pay (meaning it isn’t a generic), then I will go to the manufacturer’s website and see if there is a discount card. That two-minute search can save me a ton of money.

  • 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?

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