BC Becky

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

Category: medx

  • In-Training

    Back at Medicine X Ed, one of the speakers mentioned an online journal that was written and run by medical students, called In-Training. I tweeted out asking if they would accept articles written by patients? I was encouraged to submit something. And so, I’ve been reflecting on various experiences to see if they might be valuable to share specifically with medical students.

    Moments ago, my first article went live. It is a really short piece where I talked about my trip to the emergency room – you can read it here: Teachable Moments: An Evening in the Emergency Room.

    As I reflect back on my experiences of the last year and half, I have a few other stories that are likely worthy of articles. I’m glad I’ve found a venue for publication of them (besides this blog).

    Just as I was about to give up and not post something for today’s #nablopomo, I got the announcement that my article was live 🙂 … just goes to show how even when you are experiencing blog writers block, the universe throws you something to talk about …

  • “we are all patients” … NOT #medx

    One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”.

    This caused me to tweet out:

    I had not really thought about the problem with this rhetoric before, but when I heard the statement I felt it. The emotional me recoiled at the statement. I felt that my experiences as someone who has undergone diagnosis and treatment for breast cancer, and someone who is figuring out how to navigate hormone therapy and celiac disease, who has spent the better part of the last year and half attending to two or more healthcare related appointments each week, was discounted as “normal”. My experience was in no way unique or special. Saying that “we are all patients” is saying that the patient experience is something that is normal.

    Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not.

    What really struck me though, was that my response to the statement was an emotional one. It wasn’t rational Becky disagreeing with the statement. It was emotional Becky feeling like my experience as a patient had been silenced and discounted. That my story was no longer an important story to be told. I was no longer an epatient ‘expert’.

    Of course, academic me knows better. Academic me heard it and saw a parallel to the ‘all lives matter’ argument that is sometimes used to silence the #blacklivesmatter movement. If you are not familiar with what is wrong with the ‘All lives matter’ argument, please read this great article by David Bedrick – What’s the Matter with ‘All Lives Matter’.  It is, perhaps, because I had read that article that I saw the parallel in what was happening at Medicine X Ed.

    I’m kind of sad that my tweet didn’t get more favorites or retweets. I think it is important that we stop saying ‘we are all patients’ at medical conferences and within medical education. Unless you’ve experience critical/chronic illness, you cannot even begin to imagine what it means to be a patient.

  • Virtually Connecting at QUB ePatient Conference (#qubept)

    After all the excited from the ALTC Conference in Manchester, I flew back to Belfast to attend a conference on ePatient – The medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease (#qubept). It was a small conference of about 30 attendees. You would not have known how small it was by the very active twitter backchannel – which Marie Ennis O’Connor has storified here: Day 1 Storify, Day 2 Storify.

    For Virtually Connecting, this conference represented our first experience outside of Educational Technology. Personally, I think the area of patient engagement is one that could benefit a lot from this type of short but powerful conversation. We did two hangouts, one at the beginning of the conference and another at the end.

    Wondering what ePatients are? Watch the first video and learn a bit about what the conference was all about. The discussion included mentions about the need for improved digital literacy skills, which is something I try to address in my ShouldIBlog.org free course (which was mentioned a few times during the conference).

    In the hangout, AnneMarie Cunningham mentions Liz O’riordan’s blog: Breast Surgeon with Breast Cancer.

    The pre-conference hangout stars:

    Onsite: Rebecca Hogue, AnneMarie Cunningham, and Steven Wilson
    Online: Autumm Caines, Kate Bowles, Marie Ennis O’Connor, and Terri Coutee

    In the post-conference hangout we talked about the idea of needing to make a change from Patient-centered care to Patient networked care – and idea that was brought up during the second keynote by Julie Kennedy. In the after show (after the onsite folks left) Stacey Tinianov highlights the gap in patient voices, specifically those who are not digitally connected.

    Watch the post conference hangout, starring:

    Online: Suzan Koseoglu, Marie Ennis O’Connor, Stacey Tinianov, Alene Nitzky, and Annette McKinnon
    Onsite:Rebecca Hogue, Cathy Ure, and AnneMarie Cunningham

    What this experience has taught us is that Virtually Connecting has value outside of Educational Technology conferences. It has also help to point out a need within the ePatient community to help foster connections between ePatients. It also has highlighted the desire to connect patients to clinicians (e.g. physicians, nurses, etc).

    I’m not sure yet what the next steps will be for Virtually Connecting within the ePatient space. I’m open to suggestions. Please leave a comment with your ideas.

  • QUB ePatient Conference and Virtually Connecting


    I mentioned in a previous post that we’ll be trying to do some virtually connecting at the conference I’m presenting at in Belfast. The conference is “QUB ePatients Conference: The medical, ethical, and legal repercussions of blogging and micro-blogging experiences of illness and disease“.  I am really excited to report that we have two sessions setup. If anyone wants to join a Google Hangout (video conference) to interact with our guest speakers.

    We have two sessions planned. If you’d like to join in virtually, just send me an email or tweet – either to me (rhogue@pobox.com, @rjhogue) or to virtually connecting (info@virtuallyconnecting.org, @vconnecting). We’d love to have a bunch of people virtually join us on our first experiment with a non-educational technology conference.

    Friday, September 11 – 10:45 am UK, 5:45am EDT, 7:45pm Sydney
    Guest speakers: Dr. AnneMarie Cunningham (keynote speaker) & Dr. Steven Wilson (conference chair)
    This session is scheduled for just before the conference begins. We will get a preview of the keynote as well as talk about what types of things we can expect to learn at the QUB ePatients conference.

    Saturday, September 12 – 3:45 pm UK, 10:45 am in EDT, 12:45 am in Sydney
    Guest speakers: Marie Ennis O’Connor (@jbbc), Cathy Ure (@cathyure) and myself (@rjhogue)
    This session is with breast cancer bloggers. We will talk about the lived experience of blogging through major illness. We will reflect on the major lessons learned at the conference.

    Want to know more about what Virtually Connecting is all about. Read our Prof Hacker article, the reflection piece by Michael Berman, or the reflection piece by Autumm Caines.

    Like what we are doing and want to get involved – you can Join us here.

  • How do I be an ‘engaged patient’ in a hospital gown? #medx

    Since my diagnosis with breast cancer, I’ve seen many different specialists (breast surgeon, medical oncologist, chemo dermatologist, plastic surgeon). My doctors appointments have gone something like this.

    1. Medical assistant takes my vitals
    2. Medical assistant directs me to remove clothing (usually waist up) and put on a gown (opening in front)
    3. I wait for the doctor. In the worst case, I waited over 2 hours .. but typically I wait about 10 minutes.
    4. Doctor comes in and talks to me (anywhere from 10 minutes to over an hour depending on the type of appointment)
    5. Doctor examines me (takes 1-5 minutes)
    6. Appointment ends and then I get dressed

    I recall those first appointments. I remember feeling awkward talking to the doctor while I was undressed. I found it odd that the doctor would do the entire consulting/discussion (with appointments that were 30+ minutes involving a fair bit of question and answer) while I was undressed. I find myself wondering if this is an oncology thing or an American thing? I can tell you one thing, it isn’t a setup that encourages patient engagement. It wasn’t until a friend mentioned it, that I realized the power dynamic at play here. By being the patient, I’m already in a lower ‘power’ position in the healthcare system. By having me remove my clothes, that just increases the imbalance (or ensures the imbalance is maintained). It isn’t conducive to a collaborative dialogue, nor does it encourage me to be engaged.

    Now, in Canada, I cannot talk about oncology, only primary care. In the primary care setting, the doctor first comes in and talks to me. If an exam is needed, the doctor steps out of the room while I undress and put on a gown. The doctor returns to do the examine and talks a little bit, then leaves while I get dressed. If further discussion is needed, it happens after I’m dressed. I never have those awkward moments where the doctor is explaining something to me and I’m sitting there in a hospital gown trying to ask questions and absorb all the new information I’m getting. It just doesn’t happen.

    I have learned how the system works here (Stanford Women’s Cancer Center). I now bring with me a hoodie that zips up the front. After changing into the gown, I put my hoodie on. When the doctor comes in, I can ask all the questions I need to ask and feel comfortable sitting in the chair (not on the exam table). With my hoodie on overtop of my gown, I don’t feel like I’m undressed, and I don’t get cold. When it comes time for the exam, I can easily unzip and remove the hoodie. With my hoodie zipped up, I’m not sitting there half exposed while trying to have a conversation with my doctor. I feel a lot more empowered and a lot more comfortable.

    I have learned how to work-around the system to ensure that I’m empowered – but I cannot help wonder why the system is the way that it is? I suppose there is an argument that it saves time, but really, given the back-and-forth and other things that are going on, especially in a teaching setting, I don’t think it actually makes a difference. Perhaps this is just a legacy practice from a time when the patient’s feelings were not considered, and with the push to have engaged patients, perhaps we need to start rethinking these processes with the patient in mind?

  • The conversation project – and some end-of-life thoughts #medx

    One of the bits of recommended “reading” in the Patient Engagement Design MOOC I’m taking is about The Conversation Project. The video talks about the importance of having conversations about what you want your end-of-life to look like. So that when your care givers are facing decisions, they know what you really want. I’m not sure why, but I was reminded of Randy Pausch Last Lecture: Achieving Your Childhood Dreams (if you haven’t seen it, I highly recommend it).

    I’ve had a few of these end-of-life discussions with Scott – when the thoughts come up, I usually share them with him first, before I blog about them. I choose to blog about them. In part, this is so that the rest of my family also know what I want, but also, so that if the time comes, there is a written record of what I want. I know I should do a bunch of legal paperwork – we’ll need to do some of that paperwork before I go for surgery in December – but for all those little details, I have chosen to document them here. More specifically, I talk about how I want my ashes spread in the volcano on the Big Island of Hawaii.

    I haven’t yet talked about what treatment I want during surgery. There are several things that might come about during my double-mastectomy, especially if I opt for reconstruction. Several of the treatment decisions are automatic and documented clearly in the consent protocol. I will consent to a double-mastectomy and sentinel-node biopsy. If the sentinel nodes have cancer, then they will continue with an axillary lymph node dissection. Because I’ve had neo-adjuvant chemo, they will be more aggressive with auxiliary lymph node dissection if they find cancer – as it means the chemo didn’t kill it. The cancer part of the surgery is actually the easy part, as the protocol is pretty clear. The questions will come if there are complications surrounding reconstruction (assuming I go that route).

    I’m not actually ready to provide detailed directions on what I want in that area – as it will depend a lot on how the discussion goes with the plastic surgeon. I need to know what my real options are, and what options make the most sense. Until I have more information, I won’t be able to say what I want.

    Now, if there are complications during the surgery, I would take the same approach as “Joe Neyer” in the video. However, his approach doesn’t really apply unless, at some point, I am diagnosed with metastatic disease. At that point, I would want a directive that involved ensuring quality of life. People can live for many years (8-10) with metastatic disease, but for me that is only worth it if the treatments to keep the disease in remission both work and don’t totally suck. But that isn’t a bridge I need to cross yet. After surgery, I’m still hoping to hear that I’ll be declared NED (No-Evidence-of-Disease).

    If I have complications during the surgery that mean I’ll need to struggle to survive, then I would still want them. I’m not ready to die yet. Actually, I still think of myself as rather healthy – so despite the cancer, I’m healthy. As my energy returns and I bounce back from chemo, I hope to start demonstrating how healthy I am!

     

  • Wanting to be part of something bigger #medx

    I so want for my experience to be part of something bigger than just me going through cancer. I want it to be used to help learn more about cancer, or to help teach medical students, or something – pretty much anything – to make this experience something that others can learn from.

    I do think there is room for patient experiences in medical education – I just haven’t figured out how to make my experience be one of those experiences that gets to count. Interesting that as I wrote this, a note about the Stanford Medical X conference crossed my twitter stream. This is a conference that is at the intersection of medical education and emerging technologies – it sounds perfect for me! It was last weekend, so I’m sad that I missed it 🙁 I’m going to have to keep a close eye on their site, eagerly awaiting an announcement on how I might be involved in the conference next year!

    In another interesting twist, a few weeks ago I came across a free online course (MOOC) on Patient Engagement Design. I figured I might as well sign up, as it would give me a better sense of what physicians think of what I’ve been calling patient advocacy – but I’m wondering if the better term is patient activation (seems like a weird choice of words to me – like I’m a robot that needs to be turned on) – anyway, at least part of the reason for attending the course is to learn the lingo. I’m particularly interested in the intersection of patient education and social media – and perhaps I’m a good person to be studying this?

    I do find it curious that the MOOC does not include any form of “statement of accomplishment”. It has been placed on the internet, and runs for free, but there is nothing put in place to motivate students to complete. As design characteristics of MOOCs is something that I typically would feature in my other blog, I expect that I work through this course I’ll be cross posting my reflections to – http://rjh.goingeast.ca.

    PS: MOOC stands for “massively open online course” … it has been a bit of a phenomenon in higher education over the last 2-3 years. I’ve been rather involved in a few of the MOOCs and done some research (and co-authored some articles) in this area.

     

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