Tag: patient advocate

Virtual Attendance at World Urban Forum 2022

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This past week, beginning June 26 and running through June 30, 2022, world leaders of all ages and levels of leadership gathered in Katowice, Poland for #WUF11. It was thrilling to be in virtual attendance at the World Urban Forum 2022. What I learned, who I connected with, and what inspired me is summarized in this blog post. Why I Attended World Urban Forum Virtually Let me give you a bit of background on the purpose of the World Urban Forum. Here is the explanation than from the organization on their website. The WUF was established in 2001 by the United Nations to examine one of the most pressing issues facing the world today: rapid ubanisation and its impact on communities, cities, economies, climate change and policies. The first WUF was held in Nairobi, Kenya in 2002 and has been held around the world ever since. World Urban Forum At Continue Reading →

Going Home: A Breast Reconstruction Advocate’s Story of Love and Loss

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Fall has been a roller coaster of emotions for me from love to loss. There are times in our lives when we seem to be floating through events, whether good or bad, simply putting one foot in front of the other and moving forward. I garner strength surrounding myself with the love of friends and family during these times. This is the account of my Journey and the symbolism behind the phrase, “Going Home”. The moving van pulled up to our home in late October to load and pack our household goods. We packed our car with as much as we could cram into it for the 1650 miles road trip to our new home. The evening before we left, I received a phone call from my Mom. I choked back tears as I talked to her about Dad. The hospice nurse assessed his vitals and we knew he had Continue Reading →

Breast Cancer: Why We Choose to Be Patient Advocates

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I recently took part in an online meeting with two friends and fellow patient advocates. We met through the Project LEAD Institute program in July of 2017. Why did we apply for scholarship and attend this intensive week of the study of breast cancer biology? We all want further training to improve our advocacy knowledge base, so we could better serve our communities. The focus of our discussion at our online meeting; “Why do we choose to be patient advocates”? Kirstin, Jennifer, and I remain close friends. We talk frequently via phone chats, texts, and emails and ask each other for advice. We seek resources when we cannot find them for our community who might be in need. Opportunities for new learning, conferences to attend, and sharing new studies are just a few of the advocacy tools we share with each other to stay on top of our game. Our Continue Reading →

Breast Reconstruction. Taking Control Despite the Risks and Complications

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Patients who chose breast reconstruction often feel they are taking control despite the risks and complications associated with the surgery. I hear comments from patients after having breast reconstruction who have encountered complications including, seromas, wound healing issues, hernias, multiple surgeries, and yet, are very happy with their decision to reconstruct their breasts. Many feel it gave them control. Why? It gave them the opportunity to rebuild a body part lost after being diagnosed with breast cancer or deciding on prophylactic surgery due to a genetic mutation. An article in the New York Times reported on complications after various types of breast reconstruction surgeries including both implants and numerous forms of autologous (using your own tissue) reconstruction. A multicenter cohort study referenced in the article in JAMA stated: Reconstruction may be associated with a high risk for complications, but successful reconstruction may still be achieved in most patients. Women electing Continue Reading →

DIEP flap Patient Advocate Prepares for PSTM17

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I am a DIEP flap patient advocate currently doing final tweaks and changes in preparation for Plastic Surgery the Meeting, PSTM17.  Wheels will be off the ground early Thursday morning to fly out to Orlando. PSTM17 will be held at the Orange County Convention Center for a five-day event full of education sprinkled with a bit of fun around the Walt Disney World theme park. Last year at PSTM16 in Los Angeles, I walked into the LA Convention Center amazed and overwhelmed, feeling like a little girl walking into Disney World for the first time. I wondered around both wide-eyed and a bit frightened at times since that was my first medical conference. Everyone was welcoming and friendly from staff, vendors, to all the plastic surgeons I was finally able to meet after “knowing” them only through social media. The classes I attended were so beneficial to my mission of Continue Reading →

Livestrong First Class: Exercise after DIEP flap Breast Reconstruction

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Today was the first class of the Livestrong program.  I am a patient advocate for DIEP flap breast reconstruction and decided to document various points during this three-month program to give others in my community an idea of what to expect.  I do know each program is set up a bit differently and not all YMCAs across the country have the program.  I was told today it is worth calling the Livestrong Program to see if there is another facility in the area other than the YMCA.  They might be doing something similar. Today’s agenda at my YMCA: Meet and greet: Introduce yourself by saying something positive that has made you smile and happy in the past six months. My response: “My grandson, because he always makes me smile!” Filling out forms: The forms will help the trainers assess our various levels and abilities once we begin personalized training. T-shirts: Continue Reading →

My Experience as a LEAD Graduate

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I want to share my experience and what it means to be a Project LEAD Institute graduate and patient advocate. Application for scholarship and letters of recommendation must be submitted to be accepted into the program.  The Project LEAD Institute strongly supports the education and involvement of patient advocates in both research, action, and the education of the community they serve, locally and nationally. This is a portion of a statement from the web page giving you a sense and focus of the LEAD graduate program: The Project LEAD® Institute is a six-day intensive science course for breast cancer advocates covering the basics of cancer biology, genetics, epidemiology, research design and advocacy. I learned about the program through two fellow breast cancer survivors, Michael Singer, a male breast cancer survivor, and Terry Arnold, an advocate for the Inflammatory Breast Cancer Community.  I met them both at SABCS, San Antonio Breast Cancer Symposium 2016.  They Continue Reading →