On Saturday, December 5th I had the amazing honor of not only being around amazing people, but I got to do it all proudly representing AnCan as well! I attended the Pushing Past Cancer: Stronger Together Virtual AYA Summit presented by UCLA Health AYA Cancer Program, UC Davis Comprehensive Cancer Center, and Stupid Cancer.
AYA stands for Adolescent and Young Adult in the cancer community, and I hope the terminology will extend in all of medicine. The age range is typically around 15-39, but up to 45 is being more widely accepted now. Our population has a lot of specific issues that pediatric and adult sides of oncology can’t fully reach. Dating, fertility, sexual health, work, college, and mental health are big concerns in our community.
I really enjoyed the conference tackling these issues in a way that’s comfortable for us. My favorite webinar was “Mental Health After Treatment” with Dr. Valentina Ogaryan (Licensed Clinical Psychologist at UCLA Simms Mann Center for Integrative Oncology). She talked about how important support is at any part of a cancer diagnosis. A neat term she used was “the support squad” (which is a great shout out to millennials!), and explained what yours could look like.
One of the closing panels about “What I’d Wish I’d Known…” was just incredible. To hear my peers voice the same feelings I had, and continue to have, was affirming and encouraging. No matter what the diagnosis, we still share similar anxieties and experiences.
An awesome highlight of the day was my team (The Orange Blossoms, because we all had a connection to the color orange, mine is my hair color!) won second place at the trivia after party. Fun fact: a lot of us here at AnCan love trivia games, and I had a lively conversation with Rickand Kim Stroeh about it. An AnCan trivia night would certainly be filled with stiff competition.
Stay tuned, because we will be offering even more support for AYA’s in the upcoming year. We have lots of great things in the works, and I can’t wait to share them with you. We’d love to be a member of your support squad.
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
I love how Susan discussed the importance of Virtual Support Groups for caregivers, and how it enables the caregiver to get the support they need without having to leave their loved one. She tells the story of how the AnCan Caregiver support group formed from our Virtual Prostate Cancer Support Group, and appreciated our founder Rick Davis for not only providing support groups for prostate cancer, but recognizing the caregiver needs support too.
Susan voiced so many issues caregivers have within the healthcare system. She expressed how providers need to realize that while this may be “their millionth time”, it’s the caregivers first time in this space. Communication is so important with everyone involved in the care of an individual. She also talked about a very painful moment where she felt abandoned by the oncology team. Fellow Caregivers Virtual Support Group moderator Renata Louwers spoke of Susan’s experience:
“I think your story about feeling abandoned by the oncology group is such a powerful one and all too real. I’m glad you talked about it. I know providers certainly don’t set out to leave patients and families feeling that way, but it can often feel that way.”
We know Susan and all our other moderators will bring positive change in this area!
You’ll also hear Susan’s advice on Palliative care (plus why you should go sooner, rather than later.), communication agreements, and remembering a loved one during the holidays.
Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
On our second edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had the pleasure of having the ovarian cancer community share their perspectives with us.
On Wednesday July 29th, with an excellent discussion moderated by Dr. Pamela Munster (co-leader of the esteemed UCSF Center for BRCA Research), and top medical experts in the field Dr. Jocelyn Chapman (Board certified Gynecologic Oncologist at UCSF), and Beth Peshkin MS, CGC (Professor of Oncology and the Director of Genetic Counseling at Georgetown Lombardi Comprehensive Cancer Center).
We were so thrilled to have our own Ovarian Cancer Virtual Support Group moderator Ilana Feuchter (of NOCC) welcome our guests and attendees. Most important of all, we had wonderful family members of all kinds share vulnerable and honest conversations about their own “talks”. Maria Ciesla and her daughter, Alex Cornwell. Ni Guttenfelder, and her sister Leigha. Elena Solomon, and her daughter Liz Solomon. And the McConnell family, with Craig, Ross, and Corey.
There were many laughs, tears, and heartfelt moments. Including great answers to your questions by our experts. We want to thank our co-sponsors Sharsheret, NOCC (National Ovarian Cancer Coalition), FORCE (Facing Our Risk of Cancer Empowered), and UCSF Helen Diller Family Comprehensive Cancer Center.
Watch this incredible webinar, here:
For information on our peer-led video chat OVARIAN CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
