BC Becky

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

Category: Opinion

  • Blogs as a ‘service’ not a ‘treatment’

    Blogs as a ‘service’ not a ‘treatment’

    On the virtually connecting session yesterday we talked about the role blogging might play in healthcare. One question that Susan Adam’s (@edtechsight) asks us was how to educate patients about blogs (or inspire them to participate in the blogosphere)? She mentioned seeing something like a pamphlet or patient handout that talked about the role of blogs in healthcare – sort of like the various handouts on support groups relating to various illnesses or public service announcements.

    It occurred to me while reading an article about the “lack of scientific knowledge of illness blog practices and their utility during illness within the healthcare disciplines” (Heilferty, 2009, p. 1546), that the problem is the need to see the utility of blogging as a “treatment” rather than a “service”. I rant a bit about the issue with “scientific knowledge” being applied to narrative practice in a blog post on my other blog. My point here is that I see blogging and the use of blogs as a ‘service’ that might be offered to patients, rather than treatment. Blogs are not a ‘cure’ for some form of aliment – although they do have some curative powers in the mental health space – a part of their value is the service they provide to help healthcare providers, caregivers, and other patients better understand the nuances of the illness experience. One example I like to give is relating to chemotherapy. Websites will tell you about side effects. They might even give you a few tips on managing those side effects. But they won’t give the plethora of real tips that come from reading real experiences. Things like having a separate towel to dry your head after a shower while your hair is falling out.

    I also don’t necessarily think all patient need to read blogs. After my diagnosis, I wasn’t able to read blogs. It was probably three months before I started reading them. However, my husband did read blogs. Caregivers need to have a sense of what you are going through too. Blogs really help caregivers better understand what it means to go through the illness, on a much more thorough level than what any healthcare provider or website can articulate. My husband used blogs to help understand what I might be going through – but also get practical tips for how he might better support me throughout my treatment. When I was ready, he pointed me to a few great blogs, which got me started reading other blogs and then connecting to the blogosphere.

    But getting back the service. The role I see of blogs in healthcare in the short-term future is the same as fitness classes and chair massages. These are services that are provided by our healthcare centers (e.g. Stanford Supportive Care program provides a variety of educational sessions as well as yoga classes, gym classes, and chair massage in the waiting rooms). I see a session on the role of blogs in digital health literacy as an important service that healthcare organizations can provided for their patients. I don’t see it as a treatment provided by a doctor or nurse – at least not yet. I do hope for the day when we have a good health blog search engine (researchers are working on it) where patient could use blogs to easily find meaningful health information. I don’t know that it will ever happen. For now, I think we need to do more to teach patients what types of information is appropriate in health blogs, and where to find a few good ones (to get them started).

    Reference:

    Heilferty, C. M. (2009). Toward a theory of online communication in illness: concept analysis of illness blogs. J Adv Nurs, 65(7), 1539-1547. doi:10.1111/j.1365-2648.2009.04996.x

    Feature image CC0 by Pixabay

  • Talking about blogging with bloggers #vcept

    Talking about blogging with bloggers #vcept

    I’m excited that on Thursday I’ll get to meet a bunch of illness (health) bloggers that I have followed for some time (e.g. Marie Ennis O’Connor (https://journeyingbeyondbreastcancer.com/), Beth Gainer (http://bethgainer.com/), Caroline Frankovich Ronten (http://carolinemfr.blogspot.ca/), Britni Brown O’Donnell (https://bestliaryouknow.wordpress.com/), Alicia Staley (http://www.awesomecancersurvivor.com/), Terri Coutee (http://diepcjourney.com/), and Scott Johnston (https://scottx5.wordpress.com/) . I’ll be meeting them virtually, but synchronously using Google Hangouts on Air video chat. We’ll be talking about why we blog as part of a new project I’m working on with Virtually Connecting.

    If you are curious about why we chose to blog, you can watch the hangout from the Virtually Connecting YouTube channel embedded in the event announcement: http://virtuallyconnecting.org/announcements/making-the-private-public-why-we-chose-to-blog-a-vcept-discussion/

    I hope to be hosting more of these discussions over the next year or so, exploring the digital health literacies used by ePatients. If you have a topic you want us to talk about or you want to participant in a discussion, leave me a comment or note.

  • When you use my data, please say thank-you

    When you use my data, please say thank-you

    I’m working on a systematic literature review based upon researchers that use breast cancer blogs. This particular review was inspired by a comment written by Caroline on my blog post about the Usage guidelines for researchers who use blogs. In the comment Caroline mentions that “I would never have thought my blog could be used in research.” This has inspired me to look at how researchers are using breast cancer blogs, so that I could better highlight the different uses of the data. On June 16, 2016 I did a Google Scholar search for articles that mention “breast cancer” and mention “blog” or “weblog”. I listed the results from the first 20 pages of articles in a spreadsheet. I’m wading through them now alphabetically. Many are false positive hits (e.g. the articles don’t mention breast cancer blogs in any way). There are, however, some very interesting articles and I’ll be posting some of my reflections on the articles as I go through them. I’m particularly intrigued by the variety of fields of study that use breast cancer blogs in their research (e.g. feminist studies, communication, public health, nursing, computer science). I’m also interested in the different approaches to the ethics used in by the different fields of study.

    I was further inspired by a comment left by JF on my post about citing versus anonymizing blogs, where she highlights the importance of recognizing the labor that goes into writing blogs. I think this is a point I feel the need to emphasize. In many cases there is a space in the publication to acknowledge and thank people who helped with the article. Often researchers use this to acknowledge those who provided peer reviews or other academic guidance in the research. For students or new career scholars they recognize the guidance of their supervisors. I have yet to see an article (I’m going through alphabetically and I’m only on D, so there is hope yet) where the researcher acknowledges the work of the bloggers. To researchers, public blogs are seen as a free data source that they can use for their research. They seem to miss that this “free” data source is the result of 1000s of hours of labor on the part of the bloggers they are studying. They should at least add a “thank you to the bloggers who contributed their lived experiences that provided a source of data for this study”.

    And so, I put this out there for anyone who uses any of my blogs for research purposes. I don’t feel the need for you to necessarily ask my permission, as I am posting publicly. I do, however, ask that you in some way acknowledge that the “free” data source you are using is the result of many hours of my time. I give to you willingly my experiences, all I ask is that you say thank-you.

    Feature image: By Ashashyou (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

  • The costs of treatment

    The costs of treatment

    I’ve been thinking at lot lately about the costs of treatment. For the moment I have good insurance, so I can see the bills but I don’t need to worry about them – at least not right now. Each year our medical insurance changes, things get eroded, what was covered last year may not be covered next year. The systems in both Canada and the US are designed to bankrupt you before they allow you to access your care on compassionate grounds.

    I’m technical finished treatment, but in reality I’m not. It is something that many women with ER+/PR+ breast cancer find hugely annoying. After the dose dense chemo comes hormone therapy. The therapy can be one pill a day for 5, 10, or more years. The younger you are the more complicated this gets. The first choice therapy failed me. Patients don’t fail treatments, treatments fail patients – language matters.  The second round option is quite a bit more expensive and is inconvenient. The daily pills are cheap and easy to take. But because of my age I also need to do ovarian suppression, which luckily for me is a shot once every 3 months (some people do it monthly). For this intramuscular shot my insurance company is charged $36,000. Then every six months they add on an additional medication to help rebuild my bones as the daily pill can cause bone loss. So every six months another $10,000 is added to the bill. So that is $92,000 in treatment per year. This does not include all the doctors visits. This treatment regime is currently expected to run for 10 years – although it seems that the treatment options change, and there is some talk of extending the hormone therapy even longer for some people. Since I had three primary tumors – all hormone positive – I’m an anomaly.

    It bugs me but this cost of treatment has got me thinking about whether I should have an oophorectomy (removal of ovaries). That would mean I could skip the shot every three months. If I had a BRCA mutation, then an oophorectomy would be a standard of care, because in addition to increased risk of beast cancer, BRCA also brings a significant increased risk of ovarian cancer. But that isn’t me. So for me the only reason to remove my ovaries would be cost and convenience. Neither of those things seem like a valid reason to remove a body part. But the idea keeps crossing my mind as we look to the future. Can I maintain the shots every 3 months? To add to the issue the last shot I had hit a nerve or something in my gluten, which is now being treated with physical therapy. It has been almost 2 months since that shot and I’m still feeling it. Fortunately the first two times I didn’t have that problem. So, I’m hoping that it won’t happen again, but it is weighing on me. I’m hesitant about getting the next round of shots. Wondering if I can delay them a little. Wondering if they are really necessary. Wondering if it makes more sense to remove my ovaries and avoid the shots. I’d still need the every 6 month bone strengthen shot but that is not intramuscular.

    At the survivorship appointment we had with the nurse practitioner, she emphasized that hormone therapy was just as important as chemotherapy in reducing the risk of recurrence. For many women surgery and hormone therapy are their only treatments. It can be very effective. But it isn’t without its side effects, and it isn’t without its inconveniences and costs.

    For now I’m slogging my way forward, one pill/shot at a time.

  • Citing vs anonymizing blogs in research

    Citing vs anonymizing blogs in research

    As many of you know, I’m both a blogger and an academic. I’m looking at doing my research on breast cancer blogs. As a result, I’m reading a lot of academic literature surrounding illness blogs in general, and breast cancer blogs specifically. There is a practice within some research communities to anonymize blog text – that is, to quote it but not attribute it to the blogger or provide a link to the blog. In other communities blogs are considered publications like any other publication and the text is attributed as such.

    I’m wondering what other breast cancer bloggers think of the various practices? If a researcher wanted to use your blog for a study would you like to know about it? Would you like to contribute in some way? Would you like any quotes to link back to your blog, or would you be OK with your quotes being attributed as “one blogger says” without your name?

    I’m preparing a letter to the editor / commentary on the various practices in the literature, and I would really like to understand what other bloggers think of the practices, so that I am not injecting just my opinions on the matter.

    Please note that any responses to the post in the comments may be used for the letter / commentary, and that if I chose to use your quote I will contact you via the email you provide to get your permission.

  • On healthy privilege and prevention

    On healthy privilege and prevention

    Prevention: the action of stopping something from happening or arising. ~Google Definition.

    Words matter. I find that certain words really make me cringe. One of those words is the word prevention. Why? Because prevention means that we know what causes something. It means that we have a way to actually prevent it from happening.

    Another concept that I ran across this week was that of healthy privilege. See ‘Healthy Privilege: When you just can’t imagine being sick‘. The key to this idea is that if you have never been really sick and never seen/cared-for a loved one that is really sick, you cannot really appreciate what it means. There are a few great posts that try to explain some of the impacts, like the spoon theory (love this), but really, until I had cancer I could not appreciate what it meant to have cancer. I very much had healthy-privilege.

    So what does healthy-privilege have to do with prevention. I find that prevention is a word that healthy people use to help them feel better. Once you’ve had a serious disease, then prevention doesn’t make you feel any better. In some cases, prevention makes you feel like you did something wrong. If it isn’t something that is preventable, because we don’t know what causes it, then prevention isn’t the right word. The right word is usually ‘risk-reduction’ (OK, it is a phrase not a word). My point is, we might know of some correlations that can tell us what might reduce our risk, but we do not know how to prevent it. So prevention isn’t the right word.

    The word appeared in the context of things that can be done to reduce the risk of breast cancer recurrence (once you have been diagnosed). Prevention of recurrence makes no sense because we don’t know what causes breast cancer to come back. We do things that help reduce the risk of recurrence, but there is no guarantee.

    People who do everything right still get breast cancer. People who do everything ‘right’ still progress to stage IV (terminal). People who do everything right still die from breast cancer. There is no known way to ‘prevent’ it. Science has taught us that there are some things that correlate to a lower chance of recurrence. Correlation is not causation. Just because those who do something are less likely, doesn’t mean that the something prevents it.

    So please, please, pretty please, stop using the word prevention when you really mean reduce the risk. And especially stop using the word prevention when referring to someone who does not have healthy-privilege, that is, someone who has already gone through the cancer process or who is going through it now. We do not need to be made to feel like we did something wrong!

     

  • A new perspective on sleep

    A new perspective on sleep

    One of the side effects of various hormone therapies is disruption of sleep. I also have sleep apnea (thank-you surgery and hormone therapy!), so I see a sleep doctor. I didn’t like the clinic I was at originally, so I moved to a new one and I love the new doctor. She spent an hour with me (initial consult) listening to me and then giving me some advice on ways in which to think of sleep.

    What really struck me was that she was really good at listening to me. Picked out some tidbits based upon the stories that I was telling, and gave me advice that involved making small changes to my thinking and my activities that so far have had a huge impact.

    The bit of advice that really stuck with me was to change my perspective on sleep. Rather than thinking of sleep as restorative, think of sleep as something that our body accumulates during the day. The more you do (like exercise), the more sleep your body will accumulate. If you are healing, your sleep stores are a little bigger. If you try to sleep when you haven’t accumulated enough sleep, then you will sleep poorly. The hormone therapy (in my case aromatase inhibitors) can reduce the rate in which sleep is accumulated. So, I need to spend less time in bed.

    I find that I am now focusing on quality sleep rather than quantity sleep. I don’t try and sleep unless I’m tired. This has given me more hours to do things, which is good. It has also meant that the time I do spend sleeping is more productive too. I’m actually better rested now that I’m not trying to sleep too much.

    For me, changing the perspective has really helped.  If you are local to the Bay Area and want a recommendation for a great sleep doctor, email me.

     

  • My meds are making me sick … #celiac

    My meds are making me sick … #celiac

    I’m looking for some help in understanding how laws work in the US (sorry I’m a Canadian living in the US). I am so frustrated and annoyed. I’m frustrated at the lack of disclosure of gluten in drugs, and I’m annoyed that I didn’t do my due diligence and check for myself before taking medication from an unfamiliar manufacturer.

    I want to better understand how to follow a bill/act that is trying to get made into law. Specifically, I want to know what is happening with the Gluten in Medicine Disclosure Act.

    I am feeling seriously crappy after taking blood pressure medication for the last week. It was a refill, so it was a change in manufacturer of the generic that got me into trouble. I have been getting sicker and sicker – and so I finally got around to calling the manufacturer. Their voice message was “we do not disclose the ingredients in any of our products” Period. So they are officially on the black list – avoid anything manufactured by Roxane Laboratories period! Since this was the one significant change my diet over the last week, I’m pretty darn certain it is the cause of my problems. Ugg.

    And so now I’m stuck. It is the weekend and I cannot figure out what I should be doing regarding my blood pressure medications. Fortunately I have a few pills left from the older prescription (lower dose, different manufacturer). I cannot 100% confirm that the other pills are gluten free, but I can say that the type of sick I am now (stomach sick) didn’t happen with the other manufacturer. I won’t name them here because I haven’t called them yet.

    Monday the pharmacist is going to try and figure out if there is a generic or even brand name of the medication that is gluten free. If so, then I’ll get that. If not, it’s back to the cardiologist for a different med.

    Just got this updated link: https://www.govtrack.us/congress/bills/114/hr3648 Not liking the note about 0% chance of it being enacted 🙁

  • The bait and switch (ugg)

    The bait and switch (ugg)

    It appears I got caught by the bait and switch when it comes to my prescriptions. I got a message from ExpressScripts telling me that I could save money by moving my prescriptions to their service (they are also the provider of my prescription plan). The theory was, that I cannot get a 90-day supply of any of my meds from a retail pharmacy. So, every month I need to get my prescriptions filled, and every month I have a $10 co-pay for generics and $40 co-pay for brand names. With ExpressScripts, they promised me a 90-day supply for a $25 co-pay. This had the benefit of me not needing to refill nearly as often and that I’d pay less too.

    With that, I switched. Then I noticed that I was paying more than $10 for a 30-day prescription. It didn’t make sense. I looked at the details. Seems that I have a $25 co-pay for any generic from Express Scripts and $100 for brand names. At the retail store, it is $10 and $40. The thing is Express Scripts won’t give me a 90-day supply of most of my meds. Even the ones they mentioned in the nice letter they sent me. So the “savings” that they are reporting in the letter are not possible because they won’t issue me a 90-day supply. In the end, I ended up paying more for much less service. It takes them 10-15 days to fill a prescription. I can get it at my retail pharmacy in about an hour for most things, a day for things they need to special order. I love the people at the local retail pharmacy, but I spend way too much time waiting in line their. They are so painfully slow to process and do checkout. Since many of my prescriptions renew at different times of the month, it means that I’m spending too much time in line once or twice a week, every week.

    I’m trying out a new service (NimbleRx – my referral code:WvEKKZ) which delivers my prescriptions. From my insurance perspective, they are no different than any other retail pharmacy. I only get a 30-day supply, but I also only have a $10 co-pay. And they deliver. So, in theory, I can go online and request something and it will arrive at my door the same day. I say, in theory, because they appear to be a pretty new service and are experiencing some growing pains with their website. They have, however, been good to call me when they had problems. I’ll give them a try for the next month or two and see how that goes. I’m just so very annoyed with the whole switcheroo that happened with ExpressScripts! Ugg.

  • On being selfish

    This morning, as I read Beth’s blog post about Mindfulness, Uncertainty, and Courage – I was struck by this particular quote:

    I’ve got to ignore my inner voices that tell me I’m selfish for thinking of myself so much.

    It made me a little angry. Why is it that in our society when a women tries to take care of herself, it is deemed as a selfish act? For some reason, when men take care of themselves it is seen simply as self-care, and a good thing. And yet when women do it, we are being ‘selfish’… ugh …

    The funny thing is that selfishness has been a bit of a theme in my writing these last couple of days. In my other blog, I wrote ask Is my research selfish? In short, my answer was yes. I think that all research is in some ways selfish. It is a privilege to be able to do research and to study things that are of great interest to you. And yet in that context, being selfish is OK. Actually, in the context of PhD studies it is encouraged and I would argue necessary. If you do not have a selfish passion for the topic of your study, you will have a difficult time completing it successfully.

    This whole discussion on selfishness reminds me of advice that I often given those newly diagnosed, especially those who have children at home. I give them permission to be selfish. It is something that they often need to hear, in order to allow themselves the ability to care for themselves during treatment. But why does self-care have to come with such a stigmatized label that is called selfishness?

     

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