One increasingly important realization by healthcare professionals is the need to both engage and encourage patients to participate in their care. The following story of recovery and healing from double mastectomy surgery is told by Ev, a grandmother of nine, mother of three and wife to husband Will of 44 years. I asked Ev and Will to share their story because, I was fortunate to be included in Will’s weekly updates during and after Ev’s surgery. Each message not only gave reassurance to family members near and far that she was doing well, but ended with an inspirational blessing for all; the family’s faith first and foremost in Ev’s healing process. Their faith was a silent but strong part of the care team, and their strength as a couple was a beautiful testament of what teamwork and love can do for a marriage and the trials that life presents.
I include Ev’s words unedited, as she hopes they will help another breast cancer patient facing a similar surgery–to find answers to questions, insight to questions they may not know they have, and to find the same peace be it through faith, a loving caregiver or a skilled care team. Ev had all three–the trifecta of healing for her, and as a result, many, many happy people including her nine happy grandchildren, Ev’s daughters, and her partner in life, Will.
What do I do now? I was growing quiet impatient with follow-up doctor visits regarding questionable mammograms, ultra sound screenings, MRIs and biopsies during the 4 years since I was first diagnosed and treated for breast cancer. My husband, Will, and I were also seeing physical changes (dimpling and caving in of the skin) which was now occurring in the breast where lymphedema was prominent and seemed impossible to alleviate. I had gone to physical therapy and done exercises at home for two years. It didn’t work. The lymphatic system in the breast barely worked. The left breast tissue was ruined by radiation and very angry. My practical problem was regarding bras—being size E and weighing 148, I could barely tolerate wearing any bra I tried.
Dr. Moline, my original breast surgeon, said she could do nothing to fix the angry tissue except a mastectomy. She explained that it would be completely paid for by my existing insurance “to make the situation right” after cancer had struck. This was a big factor in my deciding whether or not to have a mastectomy. My oncologist advised me to have a double mastectomy to alleviate further testing of both breasts– “Nothing there, nothing to test.”
Dr. Moline gave me the names of three plastic surgeons. I choose the first and only one I visited. Dr. Williams was very clear, gave us several options, and sold my husband and me on the benefits of a double mastectomy with Tram Flap reconstruction of both breasts; this would all be done in one day during 10 hours of surgery. Dr. Moline would do the double mastectomy and Dr. Williams would do the Tram Flap with the help of her team.
Will was in total agreement. He was positive and started plotting what I might need for this huge surgery. We purchased a leather electric recliner not only for sitting but for sleeping the first week home. The electric mechanism was very helpful. Will purchased a hand-held shower hose with nozzle to fit in our shower and found a folding chair I could sit on for the first showers.
Our faith is very important to both of us so we relied on the Promises of God to make decisions, to live each day and not worry or loose the feeling of peace. Our family, neighbors, and church friends prayed, brought food, sent cards and flowers, (even new PJs), called and visited. Their sense was not of dismay or, “What are you doing?” Attitudes were positive and they seemed to believe and say, “You’ll get through this!” Three pastors visited us and read Psalms and assured us God was with us.
The day of surgery was a breeze for me. A hospital chaplain said a prayer for us before I went to surgery. Will was sent home and the hospital nurses and doctors called him every 2 hours with good updates. Our house is only 10 minutes away from the hospital so he was close. I remember seeing him about 8:30 pm. I was certain no surgery had been performed on me because I felt no pain or nausea. All I really felt was quite a bit of stiffness. I was checked every hour to make sure the blood vessels that had been moved were successfully reconnected and working to nourish the tissue that had been moved from my belly area to the breast area. I had nine drains. I was down to five drains when I left the hospital 5 days later. I lived on ice chips the first couple days, moved on to clear liquids, and ate a salad later on. I was able to get up and sit in a chair the third day. I remember moving myself that very short distance by myself; Will remembers it differently (he assisted). The nurse helped my attitude about getting up by saying, “The first time is the hardest, and after that it gets easier every time.” She was right. It did get easier. I walked slowly into the hospital bathroom and had a shower on day four. The nursing staff and doctors could not have been more professional. I tried to follow all the rules. I was a little bent forward for a couple days.
At home, Will removed all the smaller rugs on hardwood floors from the recliner to the bathroom. He had learned at the hospital from the nurses, how to empty, measure, and clean the drains. I had completely cleared my schedule and did nothing but rest, eat a bit, and sleep. Will was a remarkable nurse once again. He was willing and able to help me and brought his sense of “get it done” with a cheerful attitude. I was unable to keep track of my meds: Oxycodone for a few days, Ibuprofen 600 MG, and Acetaminophen, so Will took care of dosages and times. That was so helpful. Our closest friends and our family were updated daily with a quick sentence or two by email of my progress. Will was able to keep them informed and they appreciated a quick update. All the drains were removed by the end of the second week after surgery. The metal lanyard that held the drain bulbs against my belly was one of my only irritations. Metal is pretty hard. Do they make a plastic one?
I’m back doing most things except lifting much. I can’t lift my grandchildren but I can hold my 3 month old granddaughter. I can reach most things in my kitchen but found weeding last week a bit of a challenge. I have started taking my walks in the park where it is flat.
I am so delighted I had this big surgery. The chance for breast cancer is gone. A reduction in my breast size is also a huge blessing. A caring support group and husband not afraid to help with the recovery process make it all that much easier. I know for sure a top team of doctors can do successful surgery and make you comfortable, but God is the One who heals.
Following are leads from Resident Physician reflections after attending the first 2016 session of the Telluride Experience. Links are included back to the original posting on the Telluride Experience blog. Thanks to all who so courageously offered their stories from the front lines of care so that others can learn through them. It is by sharing our stories that we free another to tell theirs as well.
The Magic In Transparency
This phrase struck me as the perfect way to describe an experience I had my intern year. My first continuity ob patient had a fetal demise at 34 weeks. She was the first patient I had followed from the beginning of her pregnancy. I performed her dating ultrasound at 9 weeks. Unlike many of my patients, she and her husband faithfully came to every prenatal visit. She did not smoke, use drugs and followed the dietary guidelines. Her husband was the chatter one of the duo, while she would calmly take everything in at our visits. They both teared up when I told them they were having a girl at the 20 week ultrasound. They told me her name was Emma. More…
I was not going to share this but have been inspired by the courage of others around me. So thank you!
…In the first few days of Residency, we had a mandatory “Emotional Harm” meeting. I thought it was nice of them to do and always a good reminder. It focused on the empathy towards the patient and not losing our empathy when getting in the rhythm of dealing with similar situations and cases over and over again. I loved that they did this. This is something that is so important to remember and necessary to address.
Looking back however, I just wonder what about my emotional harm? Where are my resources? In this first 7 months of my residency experience two Senior Attendings committed suicide. I did not know the first, but I certainly knew the second. While there was heartfelt sadness and memorials to honor both, there was nothing else. No counseling offered to employees, no conversations, no checking in after some days, nothing at all. More…
Humility and Humanity
Humility and Humanity. This phrase stuck with me from Dan Ford’s talk. From medical school through residency it is drilled into us to be confident, un-phased, unemotional , these qualities are attributed to professionalism and success. Doctors are supposed to be infallible , so when we face an adverse outcome thats what we do instinctively. We become distant, listening to Helen, Sorrel and Dan thats the exact opposite of what patients need. Alienation only leads to prolongation of suffering for the patients family as well as the caregiver. Moving forward I hope to make these values a foundation of my practice.
Reading all the stories from my peers encouraged me to share as well, this was an amazing group of people and faculty. My first ICU night rotation as a PGY-2 I admitted a patient in DKA and septic shock. More…
As in Doha, SolidLine Media was along to capture the stories being told at The Telluride Experience: Sydney! Thanks to Greg, Michael, John, Ali and team for pulling this short video together utilizing movie magic across the continents in time for the Minister of Health herself to view it live in Sydney, at the Clinical Excellence Commission’s reception for students and faculty before we returned home last week.
Truly a great team effort by all to bring the reflections and voices of change to life.
It was only a matter of time before the Telluride Experience, which began as a labor of love by healthcare leader, Dave Mayer MD, almost twelve years ago came to Sydney, Australia. Kim Oates, MD, a local healthcare leader, Telluride faculty member and another who leads with love in the healthcare workplace, championed the experience for young healthcare professionals on the third continent this year.
Dave and Kim are two healthcare leaders who know what it means to put the patient first, what patient centered care really means, and they put that knowledge to the test in real life practice. Another gift both leaders possess is the ability to gently teach and guide, without sacrificing principles. They understand how hard it is for healthcare learners to rise above the medical culture because they have lived it. Today, Kim shared that the three hardest words in medicine are, “I don’t know,” and “Please help me.” Dave openly shares his own experience of being on the wrong side of medical harm when he was a resident physician. They both care deeply about patients. They also care deeply about educating young healthcare professionals to not only protect patients, but to also ensure these well-meaning nurses and doctors stay safe as well.
Healthcare needs more leaders like Kim and Dave, who lead with love. They never have to question the right and the wrong of a situation. Their hearts are their true north.
For more information on how to learn alongside healthcare leaders like Dave and Kim, as well as take home the lessons of the Telluride Experience, go to www.telluridesummercamp.com.
The Telluride Experience faculty has arrived at Q Station Sydney Harbour National Park, an idyllic Telluridesque location in Manly, Australia. The Telluride Experience: Sydney faculty and students will be tucked into this retreat location in Sydney’s National Park just across the water from the lights and cosmopolitan city of Sydney. Q Station and the National Park has a little bit of all Australian terrains, including Manly cove beachfront, bush land and the protection of a canopy of rainforest-like red gum trees.
These spectacular trees serve as home or rest to 150 different types of birds, and resemble our collective efforts at changing healthcare culture by also renewing themselves each year, as they shed their bark presenting a fresh, new salmon colored skin to the surrounding environment.
An old Quarantine Station protecting Australians from smallpox or other contagious disease potentially carried by those seeking to become citizens during the 1830s through 1984, this could not be a more fitting location to host what will be the epicenter of local of patient safety learning over the next four days. Last night, the group shared conversation, introductions and local food and wine to start the week, welcoming one another to yet another intimate and
International patient safety Telluride Experience. Join the conversation on social media, using #AELPS16.
After a very successful Academy for Emerging Leaders in Patient Safety: The Doha Experience (#AELPS16) workshop in Qatar last month, our faculty will now head to Sydney, Australia mid-April to continue sharing our Telluride Patient Safety Summer Camp curriculum with future healthcare leaders from around the world. Through the years, many Australian patient safety leaders, such as Cliff Hughes, Peter Kennedy and Kim Oates, have been regular attendees and teachers at our patient safety workshops in Telluride CO, Washington DC and Napa CA. The Clinical Excellence Commission (CEC) in New South Wales has also supported a number of young Australian physicians to attend our US patient safety immersive workshops. These young physicians have then gone on to assume quality and safety leadership roles at their institutions upon returning home.
Kim Oates, emeritus professor and Director, Undergraduate Quality and Safety Education at the University of Sydney and Carrie Marr, Chief Executive, at the CEC are the visionary leaders bringing the Academy for Emerging Leaders in Patient Safety: The Sydney Experience program to Australia. The Sydney Experience team includes fellow CEC and Australian healthcare leaders such as Telluride Alum Sarah Dalton MD, and first time attendees, May Wong and Teresa Mastroserio. Thanks to the generous support of the Avant Mutual Group, the major medical defense group in Australia, the Division of Midwifery and Nursing, New South Wales Health, and the CEC, over thirty young medical and nursing leaders will be able to attend #AELPS16: The Sydney Experience, an immersive, four-day patient safety education program. The program has also received significant support from Minister Jillian Skinner, New South Wales Minister for Health, who will attend the last day of The Sydney Experience, and will address both learners and faculty.
We are both honored and energized by the opportunity to distribute our patient safety education curriculum to those at home and around the world who have similar passion of finding new and better ways to deliver the highest quality, safest care to patients. In just two months time, we will welcome Qatari and Australian healthcare professionals into our now global Telluride Experience Alumni network. In 2016 alone, over 700 future healthcare leaders will attend one of many Telluride Experience Patient Safety Summer Camps around the world and become part of this growing network of dedicated and caring patient safety leaders.
On day three of our Academy for Emerging Leaders in Patient Safety…the Doha Experience, Dr. Seth Krevat, AVP for Patient Safety at MedStar Health, led discussions on the importance of in-depth Event Reviews, Care for the Caregiver, and Fair and Just Culture approaches to preventable harm events. Seth shared the event review process used at MedStar Health which was designed by experts in patient safety, human factors engineering and non-healthcare industry resilience leaders. This event review process has been adopted by AHRQ and AHA/HRET, and has been incorporated into the upcoming CandOR Toolkit being released shortly to US hospitals.
The young learners engaged in deep discussions around Fair and Just Culture – the balance between safety science and personal accountability. This topic followed interactive learning the previous day on human factors and system/process breakdowns. Similar to challenges we have in the US, the culture in the Middle East blames the individual first without a thorough understanding of all the causal factors leading up to an unanticipated event. After Seth showed the video, Annie’s Story: How A Systems Approach Can Change Safety Culture, and shared other case examples demonstrating how a good event review can disclose system breakdowns versus individual culpability, the young leaders gained a new appreciation of effective error reduction strategies. In the short clip that follows one of our young leaders, so empowered by the short three days with us, explains how she used what she learned to try to change her parents point of view on patient harm:
The passion and commitment of these future leaders to patient safety was inspiring for our US faculty, as well as for the leaders from the numerous Qatar healthcare institutions that participated in our sessions. I have no doubt this next generation of caregivers will be the change agents needed to achieve zero preventable harm across the world. We have seen many examples of their work already.
It was exciting to be in Qatar working collaboratively with others who are committed to “Educating the Young” as a powerful vehicle for change. Next stop for the Academy for Emerging Leaders in Patient Safety…The Sydney Australia Experience!