BC Becky

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

Tag: @rjhogue

  • The psychology of names

    It is interesting how the way we call things has a direct effect on our emotions. Yesterday it was the term ‘hospital bed’. Mom is having trouble getting into and out of bed. Mostly it is painful for her. The occupational therapist recommended a hospital bed because it would provide side rails that would make it much easier for her to turn over and get up. However, the term ‘hospital bed’ has such a negative connotation that her immediate reaction was no. Once the name of the bed was expressed as “an adjustable bed with rails” or the term I liked “mobility bed” which says what it does not what it is, her outlook getting the new bed changed. We will have one delivered today. OHIP pays for the first three months of rental. After that point, she can opt to rent it or purchase one herself. Either way, this option allows for her to try it out and see if it helps before spending money.

    The other name we got yesterday was the preliminary results of the biopsy. I don’t have the specific details yet. Her family doctor has said he will give us a copy of the full report once it comes in, which should be sometime today. The doctor called and told us “renal cell carcinoma” (RCC). This is what we were expecting based upon the scans. What we don’t know is what type of RCC? The other bit of information that the pathology will provide is the rate of growth of the tumours.  So, it doesn’t feel like we know anything new, but we have a definitive name. It is cancer. It is renal cell carcinoma (otherwise known as kidney cancer). For those that want to know more about stage 4 kidney cancer, Healthline has a good article.

    Mom’s outlook is not bad. Her comment is more “it is what it is”. She doesn’t want to be in pain. With the pain mostly under control, she is happy to get back to living her life. The diagnosis is giving her a chance to put her affairs in order. I am hoping that the first line treatment increases her quality of life. We have a cruise booked for August that I hope we can still go on. I’m glad that I am able to have difficult conversations without freaking out (mostly).

  • 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.

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