Get Loud

ayacsm

Did you know, once a month there are several tweet chats you can join to stretch your young adult cancer patient and survivor advocate muscles alongside Lacuna Loft?  Whether you’re looking to talk about young adult cancer in general, or want something slightly more focused like metastatic cancer, there are tweet chats and online communities everywhere you turn.  These tweet chats are a great place to chat with other young adult cancer survivors and healthcare professionals.  Lacuna Loft is active in two of them, in particular.  #AYACSM is the adolescent and young adult cancer societal movement and #MAYACC is the metastatic and advanced young adult cancer community.  #AYACSM’s next tweet chat is happening on September 25th @ 9 pm ET while #MAYACC’s next tweet chat is happening on September 13 @ 9 pm ET.

Never joined a tweet chat before?  Here are some logistics!

All you need to join is a twitter account!  Seriously, it is that easy.  Then, a few minutes before the tweet chat is to begin, go to ‘tweetdeck.com’ and log in using your twitter account.  On the left-hand column, there will be a menu toolbar.  In the search window, type in #ayacsm (or another hashtag for the tweet chat you’d like to join) and hit enter.  A new toolbar will appear with an ‘add column’ button at the bottom.  Click that button.  This will allow you to instantaneously see when someone has added a comment, answered/asked a question, or otherwise engaged with that hashtag (which is how you follow along with the tweet chat).  Whenever you’d like to join in the chat, click on the ‘New Tweet’ button on the left-hand toolbar and tweet away!  Always remember to add the hashtag of the tweet chat at the end of each tweet you send.  (In the #ayacsm tweet chat, always add ‘#ayacsm’ to the end of each tweet.)  This will make sure that your tweets are included in the tweet chat!

(You can also use these columns in Tweetdeck to search for any other hashtag you’d like.  Lacuna Loft pays special attention to #yacancer, #yarally, #caregivers, and others.)

We hope to see you in a few weeks at the #AYACSM and the #MAYACC tweet chats!

Like any other tweet chats or hashtags?  Let us know which ones you frequent!

Be Your Own Advocate! No Excuses!

be your own advocate

As a 2x breast cancer survivor I just want women to be aware of their breast health and know what’s normal for them. Don’t rely solely on your doctors, take responsibility for your own breast health. Truthfully take responsibility for your health and wellness PERIOD! Most of us don’t see our physicians unless we are sick and even then we sometimes try to just push though. We as women tend to put our own health off because we are so focused on our families, work, and day-to-day life. In order to be at our best we must take the best care of ourselves. You are your own best advocate!

I myself was fairly healthy at the time of my diagnosis. I had a healthy pregnancy the year before, breast-fed my one year old at the time. I feel like I knew my body fairly well. I’m sure my husband would have noticed any thing out of the norm (he’s a breast man… lol). I knew the risks that I faced, my mother being a two-time breast cancer survivor herself. By the way, it’s important to know your family medical history when it comes to breast cancer. In fact I knew that I needed to have a mammogram done for that specific reason alone. I had to wait until I was finished breast-feeding my baby girl before I could have one, so as soon as I could I requested a mammogram. I never felt any lumps or noticed anything out of the norm for me, so I had absolutely no worries. Low and behold the doctor saw some micro calcification on my images in the left breast and sent me for a biopsy which resulted in my initial diagnosis.

Screenshot_2015-03-14-10-01-48-1

image via Keep A Breast

My second diagnoses came six months later. I had an intense itch on the right breast around the nipple and areola and thought that it was just an allergic reaction to the clothing detergent I was using. I also had a milky discharge and thinking it was due to having breast-fed my baby. After a couple of weeks of these symptoms going on I felt like something just wasn’t right. I made an appointment with my breast surgeon to figure out what was going on. She didn’t feel anything out of the ordinary, but with my persistence, ordered a mammogram and ultrasound. Both came back not showing anything abnormal. I still insisted that something was not right, I knew in my heart something was wrong. I had an upcoming surgery to have breast reduction on the right breast to become more symmetrical after my left breast mastectomy. This decision most likely saved my life. I knew that breast tissue is typically sent to pathology for testing, especially after a breast cancer diagnosis. Thank God for my plastic surgeon, he did just that! That lead to my second diagnosis of breast cancer. It’s so important to know what’s normal for you and to make yourself be heard by your doctors. No one knows your body like you do.  Please, advocate for yourself, you may be the one that saves your own life!

I am by no means a doctor, I can only share my experiences and what I’ve learned through my journey.

Did self-advocacy make a difference in your cancer diagnosis or cancer care?  Always speak up for yourself!

Looking To Speak With Young Caregivers!

young adult caregivers

Today we are helping spread the word for a PhD student looking to speak with young adult caregivers. Check out her announcement!

Are you aged 18-25? Do you provide unpaid care, support, or assistance to someone with a health condition or disability? If so, I want to hear your story!

My PhD research at the University of Birmingham is focusing on identity development in young adult caregivers in the United States and United Kingdom. This research seeks to understand the ways a young adult’s identity may have been shaped through caregiving, and to learn more about how to better support young adult caregivers as they transition into adulthood. Participating in this research is a great way for young adult caregivers to share their story to a warm and friendly listening ear whilst also providing information on what support they need. To learn more about my research and my own caregiving story, please watch the video link.

Are you:
–  18-25 years old
–  Providing unpaid care, support, and assistance to a family member (s) with a health condition such as a physical or learning disability, mental illness, and/or other conditions that require support (e.g. substance misuse, HIV/AIDS, dementia and Alzheimer’s, and injuries sustained through military service).

If so, please get in touch!

Feylyn M. Lewis, M.A.
Email: FML402@bham.ac.uk
Twitter: @FeylynLewis
Telephone: 615-638-8281

Our Founder Interviewed By Cure Magazine!

cure magazine

Our founder, Mallory, was recently interviewed by Cure Magazine for an article on young adult cancer.  In the article, the on-going discussion of whether cancer is becoming trendy is examined.

Now we open up the question to you all!  What do you think of these movies and shows on the Hollywood scene that depict young adult cancer?  I have to admit that I am a believer in the show, Chasing Life.  I have issues with a lot of the rest though I’m open to new ways of looking at the world!  What do you think?  Yay?  Nay?

You can read the entire Cure Magazine article here!

image via

The Current Face Of Advocacy

young adult cancer advocacy

The world around us is changing.  Smart phones make instant communication a reality and a necessity.  Learning to be a better advocate in the midst of all of this constant noise can be a challenge.  Organizations around the world, supporting different causes are up to this task and are slowly coming up with more and more creative ways to cut through the crap and help affect real change.  Young adult cancer advocacy requires this same initiative and drive.

I wrote about this and more on the Scar Stories blog.

better advocates 2

You can read the full article here!

Have any thoughts about young adult cancer advocacy that you’d like to share?

Our Founder On The Stupid Cancer Show!

the stupid cancer show

Did you know that there is an awesome radio show just for young adult cancer survivors and caregivers?  It’s a weekly radio show/podcast/dose of awesomeness put on by Stupid Cancer called the Stupid Cancer Show.

I had a great time talking with Matthew Zachary, Founder and CEO of Stupid Cancer, last week.  He is a dynamic personality who immediately makes you feel at ease and excited to be present.  I met him at the Critical Mass conference last year and then again at CancerCon a few months ago.  We talked about my past as a Rocket Scientist, going from being a caregiver to being a cancer survivor, Matthew’s current series in the US News & World Report, fertility and emotional support, and so much more.  Connecting with other young adult cancer survivors is a powerful thing…whether you’re in person, online, or on a radio show.

More about the show in general…

“Produced by Stupid Cancer, the Stupid Cancer Radio Show is a multi-award-winning talk radio podcast that has given voice to the young adult cancer movement and elevated the cause into the global spotlight.”

You can hear the whole episode here or here!  The entire episode (and the whole series of episodes) is super informative and entertaining.

CancerCon In Quotations

As we’ve already talked about, CancerCon was an amazing experience.  So many survivors.  So many advocates.  So many friendly faces.  I will definitely be going back next year.

Here are a few glances at the magic of CancerCon…in quotes from the weekend.  I didn’t add who said the quotation.  If you see one of your own though, and you want credit for the awesome quote (or you want it removed) just shoot me an email!  Sometimes I’ll provide a bit of explanation but sometimes I don’t think its necessary.  The event was intense and powerful and so many great things were said.

This is where we all learn to be tough, brave, bitches.”

“The two of us are brave bastards.”

“We are no longer B-list subplots!” – talking about how young adults with cancer used to be the on-the-side characters while their support system received the main spotlight

“I feel like I crammed a nonprofit degree up my ass.” – oh Matthew Zachary, I can definitely relate to this one!

“You have so much permission to be pissed as hell…but you have an opportunity now…you are not alone.” – talking about Instapeer, check it out!

OSW = Oh Shit Window

“73,000 young adults diagnosed per year, 1 every 8 minutes.  Let’s be there for them.  Let’s be there for us.”

“Colorado, you are the healthiest state and you should be proud of that and you have no goddamn humidity in your air!”

“If you follow the rules, you’re doing something wrong.”

“Now I share my story like a boss.” – in reference to sharing your story once you feel in a place to do so

“Whenever I’m stressed, I watch kitten videos on youtube.”

“I don’t sit in that shit boat.”

“I’ve been getting so used to being open and excited about everyone I meet at the conference that I almost knocked on that stranger’s car window just to show them that we were eating donuts too…but I stifled it” … “I know!  I just have this urge to go up to someone and start talking about fertility” – this one is paraphrased…and the conversation was hilarious

Have any more from the weekend?  I’ll definitely add them!

Welcome To National Young Adult Cancer Awareness Week!

national young adult cancer awareness week

Yep!  April 6-10, 2015 is National Young Adult Cancer Awareness Week!

With the knowledge of this, here is my next question…what should we do (as patients, advocates, and organizations) to bring awareness to young adult cancer and all of its topics?  How do you think we should be pushing the envelope to better educate, inform, and reach out about the importance of providing age-appropriate resources to young adult cancer patients, survivors, and caregivers?

Last Thursday there was another tweet chat edition of #ayacsm.  (the next one is April 19th at 8 pm ET if you want to join!)  This great group is comprised of ya cancer organizations, young adult survivors + caregivers, as well as health care providers.  The question remains though, how do we continue to bring in more young adult cancer survivors + caregivers into our tribe?  What kinds of resources are/were you craving as a young adult cancer survivor or caregiver?  If you found the resources that you wanted, how did you arrive there?

How can we continue to build awareness about all of the specific needs that young adult cancer survivors + caregivers require?

Together we can build power, strength, and knowledge!  #ThisisAYACancer

For more information about what is happening this week for National Young Adult Cancer Awareness Week, check out this information from Livestrong.

Paula Abdul Asking You To Check Yourself!

cancer prevention

More and more attention is being paid to not only curing cancer but also preventing it.  While doing self checks does not reduce your risk of a cancer diagnosis, it greatly increases the chance that a cancer will be found early.  Since 1992, Avon has been leading a crusade against breast cancer.  In this great video, the legendary Paula Abdul tells us to Check Yourself!  Cancer prevention for the win!

https://www.youtube.com/watch?v=fMBhbgT8cZE

Have you participated in the Avon walk to end breast cancer or another event through a cancer charity?  Do you check yourself for cancer prevention?

Image via

Death With Dignity

I’ve seen this story all over the news for the past week and decided that I could no longer stay silent.  Lacuna Loft needed to add something to the cultural conversation here about allowing people to experience death with dignity…that everyone deserves the cancer community’s unconditional support regardless of your feelings on their choices.

A 29 year old woman, Brittany Maynard was diagnosed with a Stage IV Glioblastoma.  She has decided that she will end her life with dignity when the time is right for her.

I think that all should remember that this story is heartbreaking.  The death of a loved one, whether by natural causes or death with dignity, is heartbreaking.

My mother had this same cancer.  She lived 18 months past her diagnosis.  I’m not sure I would have agreed with her if she had made the same decision as Brittany but allowing my mother to die at her own pace was also the most difficult thing I have ever experienced.

To learn more about Brittany’s story follow this link.

Brittany, please know we are all behind you.