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Lorna's Story...finding purpose, finding joy!
Joan Didion said it best in her book The Year of Magical Thinking ‘Life changes in the instant’…the instant the sky fell in, the instant the world changed, the instant my daughter, Shanna, was diagnosed with cancer!
Shan’s symptoms were repeatedly misdiagnosed by the doctors. Cancer was not on their check list, not on their radar. They assumed the most common and did not rule out the most devastating. By the time Shan was accurately diagnosed, the cancer had time to spread beyond her breasts, to her bones, and to her liver. Despite Shan’s positive ‘let’s get this show on the road’ approach to the tests and treatments, and her oncologist’s prediction of hope, Shan lost her life to breast cancer a few months later. Shan was only 24.
The pain of my loss was indescribable, the sadness unimaginable. My heart was broken and my pain unbearable. The tears were relentless. I cried a sea of tears, but it was never enough. I was pushed to the depths of hell. Meager attempts to crawl out were met with a sharp return to the bottom. Initially, I described my grief like a rogue ocean wave. As I tried to reach shore, the waves would take the sand from under my feet, and assault my knees to the point where I was unable to stand. I would be taken out to sea again and again and again. I could not get to shore.
I wanted it to be me, not Shan, not my first born, not my little girl, but life is not kind. Shan was taken and I was left with the hard decision to survive or not. I was depressed and contemplated death. I realized through my lived experience, that I was gaining an understanding of mental illness, alcohol and drug abuse. You grasp at whatever will help reduce the pain. As much as I wanted the pain to subside, I could not embrace negative solutions. I had taught my children to love life. I knew Shan would want me to experience joy again. I had to try!
I knew I needed help and inner strength to get through my grief. I did not believe I could get over it, but hoped I could get through it. I would have to work hard, follow my heart and seek professional support. I went down three roads, one my own grief process, two preserving Shan’s memory and three, making a difference for young women following in Shan’s footsteps.
People often wonder what to say to family and friends experiencing grief. Sometimes the best thing to do is listen, listen and let the loved one guide you. And never underestimate the power of a hug!!
During my grief, I felt like I was running a marathon. I was frequently exhausted, falling to my knees and unable to run further. I needed support from the sidelines to provide me with the encouragement, nourishment and the strength to carry on. The support from counselors, family, close friends and Shan’s friends helped me to keep getting up, to keep running, and running and running. But I could not see a finish line.
I learned to trust my inner self to guide me through the steps of my grief. Relying on this intuition helped me know what to do next on both my spiritual journey and my personal grief. Feeling like a mad woman, I did one hundred and one things to preserve Shan’s memory. I read everything I could find on grief. All were important to me and my healing.
I was also encouraged by a colleague to use my nursing expertise and health promotion experience to take me down the third road. Finding purpose, making a difference for young women gave me a reason to get up in the morning, a tangible use of my skills and talents to improve outcomes for young women diagnosed with breast cancer, and perhaps someday help me find joy again.
At some point along the way moments of joy returned. I was able to enjoy a glass of wine, dinner with family, time with friends. My circle widened. I was able to find joy in music, reading, the natural world and, most importantly, the love of my grandsons.
In my twenties, I took up photography and had a passion for photographing wild flowers. This youthful love of nature resurfaced to support my healing, and helped me secure hope for the future. The process took me through a spiritual reflection and an important assessment of my grief.
Team Shan was established to educate young women about their breast cancer risk and breast health information. At the time, research on cancer in children and older adults had made some significant gains, but mortality data for young adults had not changed in over a quarter century. They were the forgotten generation, the lost tribe.
Team Shan set out to change the statistics, to improve outcomes for young women diagnosed with breast cancer. We used a public health approach to develop, implement and evaluate a breast cancer awareness campaign, here in the SW, to reach young women with their breast cancer risk and breast health information. Over the past twelve years, our social marketing model has been successful in reaching tens and tens of thousands of young women in communities, high schools, and on college and university campuses across Canada.
Young women have heard our messages, understood their breast cancer risk and gained knowledge that will last their lifetime. Young women have changed their self care behaviours and shared vital health information with family and friends.
One out of eight women in Canada will face breast cancer in her lifetime. There is currently no screening test available for young women. Young women need to self detect their breast cancer. They need to know their breasts, know the symptoms, know their normal, check their breasts and watch for changes. They need to be empowered to seek medical advice for unexplained and persistent changes. Team Shan is proud to have realized our goals for earlier detection and improved outcomes for young women diagnosed with the disease.
Young women have appreciated not being forgotten in breast cancer messaging and have thanked Team Shan for our efforts. Amy, one of the young women who reached out to Team Shan wrote: ‘I had stage 1 breast cancer…there is one organization I thank for my life. My early detection was due to Team Shan. I would not have been checking my breasts had it not been for the loss of Shan and her story. I thank Team Shan for running programs in Shan’s memory, for reminding me that breast cancer is not just a disease of older women. Thank you! Thank you! Thank you!’
Amy is now over five years cancer free, teaches fulltime, travels, enjoys time with family and friends and volunteers to help save sea turtles. These are the outcomes we hoped for and have achieved.
Through Team Shan I have also educated health care professionals through a number of strategies including resource sharing, professional presentations and publications.
I have also advocated strongly through national adolescent and young adult cancer initiatives and ongoing young adult cancer opportunities in Canada and beyond.
I have found joy in meeting young women across this country…beautiful, intelligent, young women that give me hope for the future. I have connected with other young adult cancer advocates and education professionals who want to make a difference for young adults. I have also had the opportunity to meet amazing young researchers, share their passion and support their efforts to change the landscape for young adults diagnosed with cancer.
I have found joy in the empathy and understanding of other mothers who have lost a child too soon. All of us mothers in a club that none of us wanted to join.
I have found renewed joy in the beauty of nature and in the wonders of wildlife. Nature has given me strength, a reason to live and helped me to find purpose.
Over time, as I reflected on my progress, I felt proud of both Team Shan successes and my resilience to survive, to live again. I finally saw the finish line!
Since Shan’s passing, there has been improvement in many steps of the young adult cancer journey…treatment, survivorship support, monitoring and more recently approaches to palliative care. My recent work advocating for improved palliative care for young people has been very special to me.
More work still needs to be done on prevention and early detection. Incidence of breast cancer in young women continues to rise. Prevention research is a critical component to future improvement in young adult cancer outcomes. Understanding the random and sporadic nature of the disease in young adults and increasing early detection are ongoing challenges. Challenges I continue to pursue with passion.
Shan loved to work with children, teaching them to swim, to skate or to play soccer. Shan wanted to help children ‘reach their potential and achieve their dreams.’ Shan wanted to teach and now it is her spirit that continues to teach young people to ‘love what they are doing, to have fun and to stay positive.’ Shan’s dreams were lost, but her dreams were the lifeline I held on to tightly to get through my grief.
I miss Shan every minute of every day, her smile that would radiate across this room, her infectious laugh, her kind and gentle spirit that helped to make this a better world. Shan is deeply missed, but her memory lives on through Team Shan and my efforts to make a positive difference, my renewed purpose and joy!
I leave my final words to another young woman who has reached out. “Your presentation was very informing and touching; even made me cry a little when you showed the slideshow of Shanna’s life. She was far too young, and had way too much to live for to have everything taken away. Even though I did not know her, from the pictures and your presentation she was a beautiful, adventurous young woman who loved life. I only wish she was here today to tell her story. It’s so nice to see she will live on through your presentations and information. I will be sure to pass this information onto my family and girlfriends. Thank you for enabling people to save their own life, and the lives of others! :)”