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Introduction (30 sec) Hello, I’m Rebecca Hogue. I’m a PhD Candidate in the faculty of Education at the University of Ottawa in Ottawa Canada. My PhD specialization will be in Health Professions Education - although my interest is more specifically in the ways that patients develop health literacies. Although I study in Ottawa, I’m currently living in Sunnyvale California and I teach online at uMass-Boston. In addition to being a PhD Candidate, I am also a breast cancer survivor and a blogger.
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Health Literacy and Illness Blogging (1.5 min) Norman & Skinner (2008) define digital health literacy as “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” (para. 6). Street (1995) highlights that literacy is not just learning of new skills but also involves “profound changes in people’s sense of identity and then what they took to be the basis of knowledge” (p.31). In the context of health literacy, the patient’s identity and role shift from a passive patient who follows doctor’s orders, to a patient who works with their healthcare team to come up with treatment plans that work.
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The far majority of research on illness blogs has been done in the health sciences and allied health professions. The research has largely focused on either lack of medical correctness of illness blogs or how blogs can be mined for information to improve healthcare. Further, the research is completed by researchers who are neither bloggers nor patients of the illnesses they are studying. It became clear to me that there is a lack of research that looks at illness blogs from a patient perspective. The current literature on patient blogging defines ‘knowledge’ in the context of medicine, rather than in the context of patient experience. There is a need for more research that looks into what ‘knowledge’ is created and shared between patients.
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Methodology (1.5 min) I am conducting an autoethnographic study. My primary source of data is my personal illness blog, found at BCBecky.com. From early diagnosis through active treatment and survivorship, I maintained a detailed account of my experience as a breast cancer survivor, sometimes blogging as many as three times per day. Data analysis involves a thematic analysis of the content of the first 16-months of my blog. I am looking for both emerging themes, but also ways in which I demonstrated my increased knowledge and advocacy associated with being a breast cancer survivor.
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I am retelling my illness story into a narrative format that aligns with what Bochner & Ellis (2016) call evocative autoethnography. Key themes that are emerging from my research include (1) negotiating identity, (2) exploring body image changes, (3) making decisions, (4) understanding side effects, (5) developing coping mechanisms, and (6) negotiating the medical system. I shall now share with you a few of my stories in the form of blog posts. I’ve indicated on the slide image which themes are expressed within the specific post itself.
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Queen of Wishful Thinking (3 minutes) August 29, 2014
When it comes to the entire surgery process, I find myself falling into the realm of ‘queen of wishful thinking’. I had convinced myself that ‘flat’ was what I wanted. I joined a great supportive Facebook group ‘Flat & Fabulous’ and found that I was creating a new vision of myself that involved a beautiful flat chest – but it also involved a beautiful flat abdomen with no extra body fat. My reality is that I shall always being carrying extra body fat. I’m in great physical shape now, and yet I still have 40% body fat. I already eat right and get lots of exercise.
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As I age, I’m destined to gain a few more pounds, not lose them, and when you add in the early onset menopause that is part of the long-term treatment for hormone positive breast cancer, my battle to keep my weight from increasing is all uphill. Realistic expectations of mastectomy without reconstruction with my body type means having a concave space under my arms and on my chest where currently I have fatty breast tissue. Not ‘flat’ space there, rather concave space! Reconstruction would be required to put some fat there, otherwise, the only thing covering my ribs will be a thin layer of skin. I now need to do some serious reflection. What do I really want to look like after surgery? Long-term what do I want my body to be, in order to have a positive body image? What is a reasonable lifestyle for me to maintain?
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I need to ensure that I’m not setting up unrealistic expectations of myself. I can not expect that magically, after double-mastectomy surgery that my body fat will just suddenly reduce itself. That I’ll magically be reformed into this skinny girl with no breasts and awesomely toned body – that is just me being completely unrealistic. I’m now looking at reconstruction options. I’m strongly considering the procedure that involves re-allocation of my own body tissues. In addition, I’m looking at immediate reconstruction since I will have already completed chemo. The surgeries that involve using my own tissue mean longer surgery, longer hospital stay, plus longer recovery time. But from the reading I’ve done so far, I’m an ideal candidate. I have enough extra body fat, but not too much. It will be interesting to see what the plastic surgeon has to say. I’m in wait mode for a few weeks – while I recover from my last AC chemo and subject myself to the first couple of rounds of T-chemo. One step at a time!
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I’m Scared (1 min) September 17, 2014 I went for a bike ride and the exercise made the neuropathy in my feet worse! Unfortunately, my ride today will likely be my last ride until after Taxol chemo. In addition to making the neuropathy worse, my sense of disorientation is not ideal when riding. I feel like things move too fast. I shall miss it, but alas, it may be time to start looking into indoor exercise options.
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On Monday, my oncologist mentioned that if the neuropathy gets too bad, we will stop chemo and move up the surgery date – that scares the heck out of me. I have things planned – I have plane tickets booked. I don’t want to have to change my plans … I want to continue to feel like I am in control of this process … so today I’m scared. The thought of surgery scares me. 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.
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Breast that are not breasts1 (3 min) January 27, 2015
I have breasts that are not breasts. They look like breasts. They feel like breasts. But are they really breasts? When I look down, my chest appears normal. But, my nipples no longer have sensation or reaction. My chest does not recognize or feel its own boundaries.
1 This story was published in the anthology “Shivering in a Paper Gown”
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Imagine what your face feels like after going to the dentist for a filling. You know your face is still there, but it does not have feeling. After breast cancer and surgeries, I look down and see that my breasts are there. I touch them with my hands. I feel that they are warm. But they are numb—just like after the dentist. Only, my body will never re-grow nerves there. I will never have feeling in my chest again. I first noticed the lack of sensation when I was carrying a box upstairs. The box was light, but bulky. When I held it, I had no sense of where my body ended. I could not tell how much pressure I was using with my arms, because I could not sense the pressure on my chest. I was reminded of it again when I did a chair massage at the Cancer Center. When I climbed into the chair and leaned forward, I had to visually check to see if I was positioned correctly. I did not have the sensory cues to tell me that I was leaning against something.
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It is odd not having feeling in my chest. It seems as though, for many of us breast cancer patients, our surgeons never mentioned this, and I have no recollection of my surgeon mentioning it. I had read about it, so I thought I was prepared, but really, I was not. While not having sensation in my chest means that I cannot feel the horrible wounds as they heal, it is still disconcerting. Having had a flap reconstruction that took part of my stomach tissue to recreate my breasts, my breasts are truly a part of my body, my blood flows through them, they are warm, and yet, they do not have feeling. The impact of not having feeling is starting to settle in. Eight weeks after surgery, I am finally allowed to lie on my stomach. The first time I try it, I feel very scared. Am I causing harm? Is there something underneath, which, unknowingly to me, might poke into me? Am I tearing open my wound? How do I possibly get comfortable when I cannot feel?
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When I ask about what a breast self-exam looks like with flap-reconstructed breasts, both my breast surgeon and my oncologist tell me, “They are not breasts.” I have breasts that are not breasts.
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When do I get to say I had breast cancer?(2.5 min) February 3, 2015
Yesterday, I started taking tamoxifen. This is a medication that blocks your body’s production of estrogen – which is what was feeding my cancer.
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I was struggling with the idea of tamoxifen until just the other day. My mother-in-law has been trying to convince me for months that tamoxifen isn’t evil. It is nothing like chemotherapy or surgery – rather just something that you do - you take a pill each day. But then she said something that helped me reconceptualize it – she likened it to hormonal birth control pills. I had no trouble taking hormonal birth control, so why should I have difficulty with tamoxifen? For me, that worked. I can do this. In talking with another survivor about tamoxifen yesterday, her comment was that the information in the packaging says it is to treat ‘breast cancer’, but she doesn’t have breast cancer anymore. My thought exactly. When do I get to start saying that I had breast cancer rather than I have breast cancer? In my mind, that date was December 17, 2014 – the day that I had a double mastectomy and the last of my three tumors was removed. So, I don’t have breast cancer, I had it.
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That being said, I’m still undergoing treatment as a result of breast cancer. My cancer surgery is done. I’ve graduated to 6-month checkups with my breast surgeon. My chemotherapy is done. However, my reconstruction is not yet finished. I still have a couple of gaping wounds that will definitely require another surgery to clean up. I’m weak from the chemotherapy and the surgery. I’ve lost a lot of my muscle mass. I’m working on getting it all back, but recovery is anything but over. So, although I’m done the active treatment for the cancer, I’m not done the treatment as a result of the cancer. I may no longer have breast cancer, but it certain feels like I do.
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Conclusion (1 min) The current literature around the usefulness of illness blogs focuses on the benefits or hindrances associated with the technical medical knowledge that is transmitted through patient blogging. Healthcare professionals focus on providing patients with technical medical knowledge. Having never experienced the disease themselves, they are not in a position to share what it means to really live with the disease.
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My study demonstrates, that when viewed from a patient perspective, there is knowledge around (1) negotiating identity, (2) exploring body image changes, (3) making decisions, (4) understanding side effects, (5) developing coping mechanisms, and (6) negotiating the medical system that is highly valuable to patients who are living with the illness experience. These new areas of knowledge I call patient health literacies.