BC Becky

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

Author: Rebecca – @rjhogue

  • 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.

  • And alternative CV #unboundeq #altcv

    I have been reflecting on the alternative CV activity in the Equity Unbound course for over a week now.

    I tried to do something visual, but that just wasn’t working for me.

    I found myself asking, what are my values? Or, what am I most proud of? Right now that answer is that I was seen as a good caregiver and a good friend. Those mean the world to me. So much more than any academic credential.

    I’m trying to figure out how to look forward, and figure out what I want my new CV to look like. I’m still working on self-care, after a traumatic 5-months of caregiving.

    Another blog that I follow, asked the question What is your greatest strength? I too have been thinking of this. What comes to my mind immediately is cooking. Again a form of hospitality, a form of caregiving.

    Now, for the alternative CV, I want to link those values to what I do – which is teach. I see now that is an important part of my teaching practice is hospitality. It is making students who are nervous or uncertain feel comfortable, and then building up their self-confidence. When they leave my class, I feel like I have succeeded if they leave with a sense of pride and amazement of what they achieved. It is they that did it, not me. I simply gave them the opportunity to demonstrate their potential. I love that.

    I’m still figuring out what I’m going to do with my life now, but I’m moving forward. I’m working on some self-care. I’m teaching again and loving it. It still feels like every day I’m lifting sandbags, but with each day the bags are getting lighter, and I’m moving just a little bit faster.

    Perhaps, that is my greatest strength – tenacity. Sometimes progress is slow and frustrating, but I keep going – and with that, I’m headed out for a hike ?

  • 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.

  • 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.

  • 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?

  • Experience, expression, and meaning making

    I’m finding myself in a bit of a challenging position right now. I don’t know if it is a funk – or just kind of stuck. Typically, when this happens I go for a nice long hike and sort it out while I walk and commune with nature. However, after recent toe surgery (which is healing nicely), I cannot yet walk – and so, I’m going to try to express some of my thoughts in writing.

    One of my research questions is “What was my lived experience as a breast cancer blogger?” I realize that even with my narrative chapter – written in the form of blog posts from my time in treatment for breast cancer, I’m not really answering the question. In part, I don’t talk to the blogging aspect of the question at all, but also, how can one express lived experience? I think I have asked an unanswerable question – which is written a little in academic-ese – as the term “lived experience” is something meaningful to academics and signifies that what I’m answering is an ethnography.

    In the book Networked Cancer: Affect, Narrative, and Measurement (Stage, 2017), the author asks “Should [illness] narratives be understood as expressing life with an illness”? The question here is that of expression rather than experience. Narratives are necessarily only part of the story. Some narrative embellish, while others gloss over. There is always a reason or purpose behind the narrative. The narrative can never be the experience. In that way, I’m not asked “What was my lived experience”, so much is “how might my breast cancer treatment experience be expressed as a blog-formatted narrative?” That, indeed, is the question that chapter 4 of my dissertation answers. Maybe, part of my challenge is that I’m struggling with a nebulous question, which then makes it more difficult to defend the answer.

    The next part of my dissertation looks at what knowledges I shared on my blog, looking at the question “What knowledges did I share through blogging about my breast cancer experience?” My blog itself (http://bcbecky.com) is the data source (not to be confused with the blog-formatted narrative). More specifically, I’m using the blog posts from June 14, 2014 through February 3, 2015 – all 237 of them! as data. I’m looking at what types of things I shared on the blog – what things that could be considered forms of knowledge. Now, one could devolve very quickly into a philosophical question of – what is knowledge – which frankly, would cause me to have my eyes gloss over and make me question why I’m doing this whole PhD thing anyways – but to get it back on track, I asked myself the question – “what types of things did I share on my blog?”, leaving the definition of “thing” rather loose – looking more for patterns than anything else.

    This is how I came to the major categories in my theme research – which I then looked at each theme in more depth and drilled down again – looking at subthemes.

    The problem I’m challenged with now, is looking at the data and analyzing it as if I were not the person who lived the expressed experience in the first place. I listen to other’s comments on some of my posts and am fascinated by how much they see in my posts – but then I realize what they are seeing is not what I was expressing – nor does it have any meaning for me. It is an attempt at making meaning from the text that is written, when what I’m trying to do is make meaning out of the experience I lived – and I’m not sure those two things align – maybe they do – maybe, I’ll think though it and push through the resistance I’m feeling, and it will all click together – it has happened before!

    The sentence that really sticks out is this “it is an attempt at making meaning from the text, rather than making meaning from the experience“. Perhaps, I’m coming back to an impossible question – just like it is impossible to answer “what is my lived-experience”, it may also be impossible for me to make meaning from the text – frankly, I always hated that part of English class, where we attempted to analyze novels and such – attempting to derive some deep meaning from a written text, when each person interprets the text differently (and I didn’t ever really clue in that the goal in school was to figure out what the teacher interpreted from the text, because it was never really my interpretation that was being solicited – but that is an aside).

    The question I have now to answer is, where it is that I’m trying to find meaning in this process? My supervisors tell me that I have to not just present the data/results, I also need to explain what those results mean to me – I need to describe the meaning. It is OK for others to see meaning in my text that is different than the meaning I see. When I doubt myself, it is often because I am doubting that I can ever see the same meaning as someone else is seeing – but I am realizing as I type, that I do not need to see the same meaning. That doubt (and impostor syndrome) comes from misunderstanding – it comes from a voice in the back of my head that is telling me that I’m missing the meaning that others see, and that somehow, the meaning that I see is less worthy / less valuable than the meaning that others see – when really, the goal is not to find “the meaning the teacher wants me to find” like back in high school, but rather to find my own meaning in the data. I need to ask what does this data mean to me, and then explain what that meaning is and why I find it meaning that – I don’t need to be deheartened because I don’t see the meaning that others see.

    Now, I just need to figure out – what is my meaning – when I find themes and subthemes, I need to ask the question – what does this theme mean to me? Not what does this theme mean in general. However, I need to write it as if I’m answering the question “what does this mean (in general)” – because I’m writing the results of something that is supposed to be some form of “this is what I found, this is what it means” … and the formalized research report format leaves out the “to me” in the way it is written (and hence leads people to believe the data is less biased then it really is) … but that is another issue … so my next step is asking, what does this mean … and being OK if it means less or different things to me then it does to others who are reading my dissertation … because, the goal is my meaning making …

     

  • 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?

  • Health literacy as a patients job

    An article on Simplifying patient communication can lead to better health outcomes by Eve Becker, crossed my stream today. I was struck by this statement:

    “Enter the field of health literacy, which aims to help physicians increase patient communication, speak in plain language and write clear prescriptions with easy-to-understand instructions.”

    I found myself wondering why the field of health literacy was defined by something physicians need to, rather than something that needs a more systematic approach. I don’t think of health literacy as a physicians job, I think of it as a patients job.

    I also wonder, why don’t we teach health literacy in school? At one point or another, everyone will get a prescription from a doctor. Why don’t we teach, in health class, how to fill a prescription and what the different directions might mean?

    Patient with chronic or critical illness have special health literacy needs. Their interactions with the healthcare system are much more complex. These patients need to develop a special type of health literacy. This is what I’m trying to figure out with my dissertation. What are the things that patients of critical/chronic illness need to learn, and how do they go about it? I do not see health literacy as a physicians job, I see it as a patients.

  • Is it critical if you don’t also question the value?

    Thanks to Marie’s weekly round-up, I was lead to a post on Critical Health Literacy by the Breast Cancer Consortium. Initially, I really liked that they were tackling the idea of critical health literacy, but then as I read through the post I felt like something was off. I realized that they were defining critical in a narrow way. They linked critical health literacy directly with evidence medicine and a need for patients to understand the ways evidence-based medicine works in order to help patients make healthcare decisions. Sounds fine, except …

    The word ‘critical’ has a completely different meaning when taken in the context of social science. It isn’t about evaluating sources for their scientific merits, rather it is about critically examining sources to appreciate the biases that go into the sources – and this critical examination includes examining the biases that go into the scientific-based sources.

    Philosophically, the scientific worldview is that there is a one truth – and that it is possible to do science in an unbiased way, where in critical theory there is an appreciation that there is no such thing as unbiased. It is impossible to do things without bias, as each thing we do involves so many individual decisions, that you cannot completely remove bias.

    I’m challenged also by the different value systems at play here. One of the value systems that I am constantly fighting is the view that scientific knowledge is more value than non-scientific knowledge – you see this in medical research when you hear things like how randomized control trials (RCT) are the gold-standard. It puts a value for that type of knowledge generation which doesn’t necessarily apply to all situations. It doesn’t account for the complexity or variability of human bodies. Even in a RCT, someone gets to decide what variables are being measured. Someone gets to decided what it means to be successful. Those decisions impact the inherent biases in the RCT results.

    The scientific method attempts to take the human element out of the equation, and yet, when we are dealing with healthcare is it all about the human element. So, a narrow definition of critical health literacy that privileges scientific knowledge without questioning it, is a definition that is fundamentally missing the critical worldview.

    I think health literacy needs to look beyond what science has to offer, and needs also to look at what other social sciences and humanities can offer – health literacy should be looking at ways to improve the human condition, not just to improve some criteria that some group of people (e.g. physicians, researchers) deem to be important.

    What I’m calling for is a critical look at critical health literacy!

css.php