It’s been a few days since I got back from San Antonio and I’ve had a chance to think more about the aftermath of the week away. It’s always a big ask of my husband and my parents for me to be gone in light of the child care requirements at home and I’m thankful that they worked together to ensure that I could take time out of our usual schedule to attend the conference in person. I alway get more out of attending a conference in person rather than listening at home — so much happens between the presentations.
Conferences focused on the medical community have a particular audience in mind when they put together their program. And the audience is not primarily the patients. Over the last few years since I’ve been attending medical conferences, I do think the conference organizers are doing a better job of ensuring that the presentations, while focused on the medical community, are also calibrated in terms of language knowing the patients are listening. It’s also a good time to be teaching the medical professionals what language to use that is the most respectful of those of us receiving the fruits of their labors. Many medical professionals inadvertently use language that can be difficult for patients — for instance, saying that a patient failed a drug rather than that the medication failed the patient; or calibrating or “right-sizing” a dose rather than escalation or de-escalation of a dose. It may take the medical professional a few extra minutes to ensure that they are using patient-friendly language, but that effort is truly worth it.
But all of that said, it is hard to attend these conferences because I always have to be “on,” always trying to listen to what everyone is saying and translating it in my own mind to truly hear what is being said, and always looking for networking or connection opportunities. For this introvert, that takes a LOT of energy and more so this year because of the fatigue and GI challenges caused by my current regimen.
As I transition back to the “normal” routine and start to think about those things that are more applicable to my life and the clinical decisions that I’ll be making in the future with my medical team, there honestly wasn’t much that stuck out for me. It is good to see the progress being made, but it is also really demoralizing to see how little will actually affect me personally or those that I know directly. To go to these conferences, to advocate for what is best for patients, to push for the language and the end points that will be more accessible, all of this is for the benefit of people in the future.
And that can be a really heavy lift.
I was able to get the recordings of my panel discussion, that of living with cancer in this COVID saturated world and I’ll share those recordings below. I am thankful to have gone, I’m thankful to have spent time with some amazing advocates and human beings, I’m thankful to have connected with medical professionals who may be good contacts going forward, and I’m thankful to have had some time away. I am also thankful to be home with my guys and sleeping in my own bed, even if there are bony elbows and bony knees. 😉
Here’s the recording of my “talk” where I highlighted how COVID has created struggles for us while living with young children and how we have gotten vaccinated:
During the Q&A, most of the questions were directed at the medical professionals rather than to the patients on the panel, but I did add a perspective at the end about how decision making about the vaccine was a challenge because of the lack of information and how #MedTwitter was part of my decision-making:
And now onto celebrating the holidays with my family and spending some down time with this being the last week of school for 2021. I’ll be back to a normal posting routine in the new year, but taking a bit of a break for now.
See you in 2022.