We looking to raise greater awareness about some of the issues that affect real people experiencing a lung cancer diagnosis.
In conjunction with the survey we have posted, we would also like to hear from you directly in your own words. The following video survey will allow you to record a video response on your phone, tablet or computer. Your responses will be used to put together short videos on each of the four areas, which will be used by Free to Breathe and HealthUnlocked to help raise awareness around these issues. The finished videos will also be shared in the community.
If you are interested in taking part but want more information, please reply to this thread. Alternatively, follow the instructions below!
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Instructions:
If you have experience with any of the four areas below and want to share your story, simply enter the survey and give a short response to the area or areas relevant to you. It is okay to not respond to a question if it does not apply to you or if you are not comfortable providing an answer. We’ve included some talking points for each area to give you an idea of what you can say, but please feel free to address the area as it relates to your experience.
The simplest way to answer these questions is on your phone or tablet. You will have to use the Verbate app but it is a very quick download and you can delete it once we have received your videos. Click the link below from your phone or tablet to get started.
Alternatively, you can upload your responses from your computer. First, please record your videos with a camera or webcam. Then click the link above from your computer and select ‘I want to upload an existing video from my desktop’. Enter your email address and press ‘Join Survey’. Click on each question and you’ll be able to upload the answer you recorded.
If you encounter any problems with the app or have any questions at all about Verbate, please email hello@verbate.com and someone will get back to you right away.
The four areas:
Area 1: Engagement within the Lung Cancer Community
→ Have you been engaged in the wider lung cancer community since your diagnosis and how has that impacted your experience with the condition?
Some areas you might touch on are:
If you have been able to connect with someone else living with lung cancer, how and what impact did that have for you?
Have you or your family participated in any events to raise money or support for the lung cancer community?
How important is it to you to try to change the future of lung cancer for others? (ie. by raising awareness, funding research, etc)
If you were speaking to someone just diagnosed with lung cancer, what would you tell them?
Area 2: Scanxiety
→ Many individuals experience a great deal of anxiety around upcoming or recent lung scans - have you been affected by this and do you have any specific coping mechanisms?
Some areas you might touch on are:
Have you experienced anxiety before your scan or after (before you hear your results)?
What are ways you cope with scanxiety?
What advice would you want others in the lung cancer community to know about scanxiety?
Area 3: Fear of being told there are no treatment options left
→ Lung cancer remains a disease where too many patients reach a point where they are told there are no treatment options left. Is this a fear and if so, how do you cope?
Some areas you might touch on are:
Has your healthcare team talked to you about options if your first line treatment stops working?
If you are living with lung cancer and still being treated, how often do you worry about finding out your treatment is no longer working?
Do you have hope that ongoing research will be able to make a difference for your lung cancer?
Area 4: Dealing with emotions surrounding a lung cancer diagnosis: grieving, stigma, or end of life
→ A multitude of emotions can accompany a lung cancer diagnosis. How have you dealt with the emotional impacts of this disease?
Some areas you might touch on are:
Have you spoken with someone about any sense of loss or grief related to your lung cancer?
How have you dealt with any feelings of sadness or isolation after your diagnosis?
Have you ever felt that family, friends, coworkers, etc were less supportive of you because of your diagnosis of lung cancer as compared to another type of cancer?
Have you ever spoken to your family about end of life issues?
Have you ever been referred to a social worker, psychologist, or psychiatrist to help you deal with your diagnosis and if so, was this helpful?
Chemotherapy after Lobectomy
Has anyone received the Covid-19 Vaccine while taking Immunotherapy?
A large injection of hope required. Please.
Immunotherapy Stage IV
NED means I should feel happy, right?
