This time of the year, November 24, 2014, to be specific, brings me back the day that rocked my world and changed my life as I knew it. I had just turned 60. I was healthy and living my best life, and then BAM…..I was diagnosed with a Brain Tumor. It was a scary time and a time that caused me to face my mortality and fight the fight of my life. Now that I am on the other side, I am grateful to share the stories and experiences I have as a cancer patient to help people better navigate the complex healthcare system.
As time goes on, one of the things that I strive to better understand is how my husband handled the news that I had cancer. I know it hit him as hard as it hit me. Yet, during my journey, he was my advocate, my caregiver, and with me every step of the way. He was positive and never let me know how scared he was. The experience reinforced how much he loved me and stood by me when I needed him the most.
As a nurse advocate and case manager, I have met many caregivers.Each handles the challenges they face in their own ways and look to professionals; doctors, nurses, social workers, professional advocates for answers, support and empathy as they go through their own journey. I hope this post reminds all healthcare professionals that all need to care for the caregiver as well as the patient.
Several years ago, I met a couple – Sam and Susan Simon. Susan was diagnosed with Breast Cancer, and Sam was her caregiver or, as he calls her, his love partner. When Susan was diagnosed with Breast Cancer, Sam was devastated. He thought for sure, Susan was going to die. He knew that in order to help her through the process, he had to put his feelings on hold and be positive for her. Eleven years after the diagnosis – Susan was doing well – but Sam needed to find a way to express his feelings so he could heal.
Sam put pen to paper and wrote his story. He called it the Actual Dance. The story became a one-person play that Sam performed to national and international audiences. I was privileged to see the Play as part of a conference I was attending. The Actual Dance is told through the eyes and heart of Sam as he struggles with his worst fears in what everyone expects to be his wife’s losing battle to breast cancer. The story takes the audience on an emotional but uplifting journey that rewards them with an unexpected happy ending and a universal, life-affirming lesson of hope and faith.
The Play is a moving performance and an eye-opening view into the feelings and fears of the caregiver or love partner when the person they love takes sick. The story gave me an idea of what my husband went through as he supported me on my journey.
I have followed Sam and Susan over the years. The Play has been successful and performed in major cancer centers and other settings nationally and internationally. One day I saw an email from Sam and learned he had written a book to accompany the Play – both are named the Actual Dance. I replied to the email and congratulated Sam on the book. I asked Sam if he would have time for me to interview him and Susan to learn about the book and how it compliments the play. We set a date for the following week. On the day we met, I was recuperating from a procedure to remove a lesion on my forehead. I knew the bandage on my forehead would not be a good look but I did not want to cancel our appointment. We had a good discussion and I am grateful to them for their time.
In honor of National Caregivers month, I want to share my interview with Susan and Sam Simon. I hope you take the time to listen to the discussion. Once you listen, take the time to familiarize yourself with their story; visit their website where you can get to know them as I did through the Play and now their book. Click here to see the website. Click here to listen to the interview! Click here to learn more about the book.
Best to luck to all couples who are doing their own Dance. Take things one day at a time.
Thanks for reading Nurse Advocate. I hope you and your families have a Happy Thanksgiving!
Anne-this is a perfect explanation of a caregiver journey. My memory of hearing Tony’s diagnosis is forever etched on my brain….I was attending the spring DFW conference. So thankful that Cheryl Acres was there to support me.
Hello Anne–I remember vividly your personal cancer journey and how touched I was that you shared it openly with strength and generosity.
Here you are sharing once again through Sam and Susan. ..Susan is fortunate to have such a caring and sensitive “love partner”. Sam demonstrates selfless love and strength as he copes with perhaps his ultimate loss..that being truest love of a long term partner.
My thanks to you all for taking the time to share this most valuable and sensitive interview.
Kudos to you Anne for your wonderful work that continues to shape our case management community.
Sharing your health journey and those of others (including Sam & Susan Simon) is a credit to your dedication of helping countless individuals. I remain grateful for your friendship and optimism. Hope all your readers and of course you and Corky have a joyful, safe, and Happy Thanksgiving!
Having been my husband’s care giver with intensity for one year, then a one year hiatus before he was re-diagnosed with stage 4 melanoma, I have been there. He then underwent 3 years of auto-immune infusions and fortunately, for the most part, he was pretty independent, but tired and did not want to be alone. He expressed frequently, what does one with such a diagnosis and no-one compassionate to spend time with, do; how do they handle it? His demise was not from the melanoma per se, but from a massive heart attack. When he had decisions to make, I would give him input, reminding him he was of sound mind, it was his body, so final decisions needed to be made by him. He knew what I would do (as I told him), especially as a wife of 60 years and a RN, CCM. I was not the patient and let him decide, with his MDs, what was best.
In my role as a RN, CCM, LNC, I rarely dealt with cancer patients yet aware of treatments for cancer patients.
I followed your hospitalization and recovery to the remarkable person you are today, personally and professionally, although I did not know you directly at that time. Your courage and determination should be bottled and given to those who feel a cancer diagnosis is the end of their life immediately!
May you and yours be healthy and enjoy the upcoming holiday season.
Thank you for the wonderful story about one couples’ journey. I love the term “Love Partner” and feel such a sense of wonder for couples who step up for each other in this age when so many divorce. Heaven knows you and your husband are terrific examples of that, too.