Impact of Cancer Study

woman jumping

My name is Jess and I am a PhD researcher working at Edge Hill University in Liverpool in the UK.  My PhD study is investigating the psychological impact of cancer in teenagers and young adults who were diagnosed in their teenage and young adult years.  Particularly, I am looking at the psychological impact in survivors who are in recent remission (received confirmation of no evidence of disease within the last 2 years).  It is my hope that this will lead to the development of an intervention in order to better support teenagers and young people transitioning back to their previously held lives.

Right now, I am looking for individuals to take part in a questionnaire study looking at the psychological impact of your cancer experience.  It can be completed anonymously online and should take no more than 15-20 minutes.

If you are:

  • currently aged 18-30
  • were diagnosed with cancer between 16 and 25
  • have received confirmation of no evidence of disease within the last two years
  • were not diagnosed with a brain/CNS tumour
  • did not receive any form of cranial radiation
  • were not diagnosed with a mental health condition prior to your cancer diagnosis

then you are eligible to take part!  Please follow this link to take part.

If you are unsure of anything or have any questions, please don’t hesitate to email me at popeje@edgehill.ac.uk

Black Lives Matter

Lacuna Loft has waited to offer our own words over the past week.  As an organization led by a white woman, I have spent this time listening, learning, and unlearning so much about how I was brought up, how the world actually works, and how myself and Lacuna Loft fit into that complicated puzzle.

The fact of the matter is though, that Lacuna Loft must announce where we stand, how we feel, as an organization, in this tumultuous time.

Black Lives Matter.

Our virtual doors have always been open to anyone facing cancer as a young adult.  For the past 5 years, young adult cancer patients, survivors, and caregivers have spent time in our virtual rooms connecting with one another, validating one another’s experiences, and showing up for each other when other survivors present were at their lowest points experiencing cancer and working hard at survivorship.  In our programs, people share their words and their experiences with courage and vulnerability.  Together, we have left space for strong words and strong circumstances with grace, offering love at each point along the way.

But today, that is not enough.  Today and every day from now on, Lacuna Loft recognizes that Black Lives have been left out of conversations around health, housing, fair and just treatment with police, and more.  Lacuna Loft and I will continue to listen, seek to provide support in an anti-racist way, continue to include young adult cancer survivors of color in our conversations, and we will collectively continue to learn and unlearn.

Lacuna Loft stands with Black Lives.  Black Lives Matter.

  • Mallory Casperson, CEO + Founder

 

Cancer Care Study For Young Adults

Lacuna Loft loves sharing research opportunities with you so today we’re passing along this fabulous study again being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.

Learn.  Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.

Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.

If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.

1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.

2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care

3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.

Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.

Learn To Make Change With Your Young Adult Cancer Story

wave

Want to learn to tell your story to make change?

In a 2-hour, 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.

The program is open to young adult cancer patients, survivors, and caregivers and is scheduled for Tuesday, May 26th. 2:30-4:30 pm PT / 4:30-6:30 pm CT / 5:30-7:30 pm ET.

When you sign up for the workshop, you’ll get a confirmation from the system that you’ve registered. 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.  A ‘Round 2’ of the workshop is in process though and we’ll debut it in the fall!

Lacuna Loft Is Five!

cupcakes in a row

The last 5 years have been an incredible ride.  Lacuna Loft was granted our nonprofit status 5 years ago in April…I was just about to move to California and had very little idea of what was in store for me, much less the brand new organization I was leading.  Over the last 5 years, I have had the privilege of connecting with thousands of other young adults who have faced cancer courageously and without hesitation.  We have come together in Lacuna Loft’s virtual rooms, sharing joys and sorrows, comforting one another, and lending empathic ears.  The power of our collective voices, the power of hearing that single voice who could validate our experience, is immeasurable.

Thank you for your presence.  Thank you for your love.  Thank you for your generosity with one another.

For that next young adult diagnosed with cancer, consider giving $5 for 5 years.

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]$5 for 5 years[/button]

With warmth,

Mallory

Tailoring Pain Questionnaires To Cancer Patient Preferences

woman sitting on ground

If you’ve been around Lacuna Loft for any length of time, you know how we love pointing you towards new tools and new research.  Today we’re letting you in on an easy and very impactful research opportunity with Fred Hutch researchers!

Many people living with cancer experience symptoms – including pain – which can last for years after cancer treatment. The best, and often only, way to assess post-treatment symptoms in survivors is by using patient-reported outcomes (PROs). PROs are questionnaire-based measures that ask patients directly about their symptoms and feelings. In this study we aim to develop PROs that are tailored to, and hence potentially meaningful for, individual patients. We are looking for adult cancer survivors with pain in the US to complete two surveys over one week.

For more information and to see if you are eligible, please go here.

What Else Are We All Missing?

camel in the desert

Hello!  Lacuna Loft has always lived in the online realm of program delivery and more and more organizations are moving their in-person programs online too.  The times we are experiencing are crazy and chaotic and intense…and here at Lacuna Loft, we think that having as many opportunities as possible to get the resources and support you deserve, the better.

With that said, what are we missing?  What type of program have you been craving but you just can’t find it anywhere?

Looking For Support And Medical Information Through COVID-19?

stack of papers

Over the last month, a group of patient advocacy organizations, patient experts, and healthcare professionals have come together with the mission to share COVID-19 related resources and information for adolescents and young adult cancer patients, survivors, and healthcare professionals who work with this unique population.  Finding credible resources and information for adolescent and young adult cancer patients and survivors during the COVID-19 crisis can be difficult.  There is just so much out there right now!

The website this coalition developed now provides a listing of resources and programs that are provided by leading patient advocacy groups specializing in adolescents and young adults affected by cancer.

If you’re looking for programs available during the social distancing happening during COVID or if you’re looking for information specific to your diagnosis or treatment (or the diagnosis/treatment of your patients), look no further than covidayacancer.org!

If you know of programs that aren’t on the list, let us know!  The site will be continually updated both on the patient resources side and the provider resources side.  Life is changing day by day and the patient and provider resources and support are changing too.  We are all stronger together and this coalition is there for you the entire way!

A Gabfest? Join Us For A Gabfest!

confetti

Elephants and Tea and Lacuna Loft are partnering together on a week-long, online conference…

YA Cancer Gabfest: A Week of Interactive Survivorship Crash Courses for Facing Cancer.  Come spill tea with us no matter where you are!

Throughout the week of December 7th, we’ll offer opportunities to connect with other young adults facing cancer in webinars, hangouts, interactive sessions, chances for movement, and more. We are busy behind the scenes getting everything squared away but in the meantime, we want to hear from you!

Please fill out this quick survey and let us know what sorts of courses, discussions, topics, you name it, you want to have!

Young Adults Cancer Care Interview Study

kaiser and dana farber poster

Lacuna Loft loves sharing research opportunities with you so today we’re passing along a fabulous study being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.

Learn.  Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.

Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.

If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.

1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.

2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care

3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.

Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.