Use Your Young Adult Cancer Story To Make An Impact

lens into wilderness

Want to learn to tell your story to help make change?

In a 90 minute, online and interactive workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy.  Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you.  The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Monday, April 27th. 3-4:30 pm PT / 5-6:30 pm CT / 6-7:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! 🙂 ]

What if I’ve taken the workshop already?  At this time, the workshop has not changed between sessions.  When we have a ‘Round 2’ version of the workshop we’ll be sure to let you know!

March’s How To Tell Your Story To Make Change Workshop!

microphone

Want to learn to tell your story to help make change?

In a 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Thursday, March 19th. 3-4:30 pm PT / 5-6:30 pm CT / 6-7:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! 🙂 ]

What if I’ve taken the workshop already?  At this time, the workshop has not changed in between sessions.  When we have a ‘Round 2’ version of the workshop we’ll be sure to let you know!

Help End Surprise Billing

old fashioned telephone

Here at Lacuna Loft, we find it extremely important to let you know when something comes across our radar which impacts you and other young adult cancer survivors like you.  Today is one of those days!  We just learned of this advocacy opportunity from LLS and needed to share!  Take action TODAY!

If you’ve ever received a medical bill that you weren’t expecting, you probably felt confused, worried – maybe even angry. And you’re not alone.

Surprise billing has become widespread and can have a huge impact on cancer patients and their families. It’s what happens when a patient who has insurance visits an in-network provider or facility, thinking they’re covered. But at some point during the visit, they see a doctor or get a lab test that is out-of-network – without even knowing it.

Then, weeks later, they get the bill – and it can total thousands of dollars that they weren’t expecting to pay for the care they received.

Surprise billing can be financially devastating. It is absolutely crucial that lawmakers take action to protect patients.

Right now, Congress is considering legislation that would protect patients from surprise medical bills without increasing their costs. Call your representative right now and tell them to stand with cancer patients and put an end to surprise billing: Dial 1-844-906-0789 for more information and to be connected to your representative’s office.

Cancer patients have enough on their plate without having to worry about unexpected medical bills. Congress needs to end surprise billing to protect patients, no matter where they live or what plan they have.

There is strong bipartisan support for a solution to surprise billing – and this is a key moment. As congressional committees are debating legislation next week, we need them to hear from you that you expect them to get this done.

Your member of Congress needs to hear from you: It’s time to put an end to surprise medical billing that can financially devastate cancer patients.
Call 1-844-906-0789 now.

Record Your Important Health Conversations With Abridge

Lacuna Loft is always on the lookout for resources, tools, and other organizations who are helping the young adult cancer community.  We like partnering with them and we LOVE sharing them with you!  Today, I’m super excited to share a great new app that was recently released by Abridge.

Their app lets you record a conversation with your doctor, then it transcribes the verbal conversation into text, and picks out the really important parts.  You can easily tap on any medical moment to replay that specific part of the audio, so you can quickly get to the part you want to relisten to. This makes it so you can easily go back to confirm details you missed, or share the conversation with someone who wasn’t able to be there with you. Plus, the app maintains your privacy and never sells your data! The info you record is for your eyes only (or for whoever you specifically share it with) to better stay on top of all of those details you get at a doctor’s visit.

Our CEO, Mallory, and one of our program participants, Megs, recently tried out the app and are sharing their thoughts with us today!  Plus, you can scroll to the bottom of this post to see an easy gif describing the app!

Megs:

I’m excited to share my experience with this new cancer app called Abridge. The app helps patients and their caregivers record their health conversations with healthcare providers. It then takes those verbal conversations, transcribes them, and picks out the really important parts.

It was easy to register. More importantly, it was super easy to use.

I used it for my appointment with my palliative care doctor. I simply asked my nurse and then doctor if I could record our discussion. I pulled up the app and hit the record button. BOOM!

You can pause it and then keep recording until you’re completely done with the appointment. Once you hit the done button, you can save it and input a title for the recording. The app will work its magic and gather the important insights from the conversations with your healthcare providers.

Then it produces a transcription of every word spoken highlighting important keywords. The type is clear. It breaks down the conversation and timestamps it.

From there, you can share it with your family and anyone else who has downloaded the app. You can write a message, which is optional, input their email address and the app sends the message. The receiver of the message will see your personal message and then directions to download the app and register. Once registered, they can hit play and listen to your recording.

I’m impressed with this app. I find it a necessary tool for every doctor appointment. We’re often hit with so much information when talking with our doctors that we can miss other key information. This app captures every word. It allows us to fully process what is said in each visit afterward.

I highly recommend this app to every cancer patient and their caregivers. It will take the pressure off trying to take notes during the appointment so you can be fully present in the moment.

Mallory:

I tried out the Abridge app at an appointment with my OBGYN.  I was able to easily start the recording with a simple press of a button and it picked up both my own audio and that of my physician.  The app made it really easy to go back and look at what my doctor had suggested…my appointment was later in the afternoon and my attention span isn’t always as good after lunch. 😉  I was also able to email a link to the recording to my husband who wasn’t able to go with me.  The app made sharing my appointment’s transcription and audio very straight forward.

Later in the week, I actually used the app again to record my half of a phone conversation with another doctor, one taking care of a family member of mine.  I sometimes get off the phone with her and realize that I remember more of my own questions than I do her responses.  While the app could only pick up my audio, I basically repeated back to her everything she suggested so the app recording could pick it up (and so I could go back and look at it later!).  In the call, the dosage of both medications my family member needs was being changed,  as well as how often to take them.  Later in the afternoon, I realized that I couldn’t remember which new instructions belonged to which medication.  I was able to readily go into Abridge and check both the audio and the transcription to safely check what the physician had told me.  It saved me a call to the doctor’s office, because we all know how long that turn around time could be, and it gave me peace of mind right away.

I’d highly recommend this app.  It’s easy, right there on your smartphone, and takes all of the guesswork out of what details I could recall after an important health conversation with my doctor!

And that’s it!  Two recommendations for a great new tool to help you take better charge of your own healthcare.  Download the app today and let us know how you’re finding it!

Sign Up For The How To Turn Your Story Into Change Workshop

water drops

Join the next How to Turn Your Story Into Change Workshop!  (Note, we used to call this program ‘How to Turn Your Story Into Advocacy’!)

In this 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into change. Change comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into change.

Who: young adult cancer patients, survivors, and caregivers.

When: Thursday, August 22nd. 5-6:30 pm PT / 7-8:30 pm CT / 8-9:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

If you’ve already taken part in this particular workshop, this month’s event isn’t for you. But! We’ll be figuring out a follow up to the workshop in the coming months and will let you know when that is announced.

Share Your Young Adult Cancer Voice

pen

Anyone who has written with Lacuna Loft during a session of our Unspoken Ink: Young Adult Cancer Creative Writing Workshop has heard me say how powerful I believe the voices of young survivors and caregivers to be.  These voices, these stories, have the power to tear down the isolation someone feels when they’ve never met another survivor their age, when they live too far away to seek survivorship support, and every situation in between.

Interested in sharing your story?  Lacuna Loft shares stories ranging from all sorts of topics: fertility, cooking, parenting, DIY, self-advocacy, survivorship, caregiving, and more…all with young adult cancer in mind.  Fill out the form below and we’ll get in touch with you!