Sandra Wade first e-mailed me on July 15, 2011. As you can see in the excerpts from her correspondence with me below, she asked me to contact her oncologist and let her know that as a breast cancer survivor, Sandra had suffered more than she should have, because she was not referred for rehabilitation services. I told her that I did not feel comfortable with contacting the oncologist, but with her permission, I would share her message with others who were not directly involved in her care. No cancer survivor should be told to “accept a new normal” without first being offered cancer rehabilitation services. The evidence-based need for cancer rehabilitation services in the majority of survivors is well documented.1
Sandra’s story is similar to those of many survivors who have not been screened for physical impairments and treated with appropriate rehabilitation interventions. Over the past few years, I have had the privilege of sharing her story (at my lectures) with thousands of healthcare professionals who have told me how compelling it was to hear the patient’s perspective. I hope her story will encourage you in your oncology work to better understand and support rehabilitation for high-quality cancer care.
The following letters are excerpts from Sandra’s e-mails to me over a period of several years.
July 15, 2011 Dear Dr Julie Silver, My heart is overwhelmed with emotion learning of the STAR [Survivorship Training and Rehabilitation] Program. My story is long and painful, so I will not go into my cancer journey thus far. I just want you to know that I have suffered unbelievably for 9 years with stage IV metastatic inflammatory breast cancer. I truly love my oncologist and therapist, but they need to know about your work. I have come close to suicide, because of my “experts’” lack of knowledge and inability to listen to me and to try to find help for me (and many others, I’m sure).
When I researched whether there was help for me, I was dumbfounded by how much help was available for patients with cancer, and had been for years. First I was relieved, then felt hurt, and now I’m unbelievably angry. I felt instinctively that there had to be help for people like me, I just was too sick to look or ask for it before now.
I can’t believe my “experts” did not know or even bother to look. I have suffered needlessly; it’s almost unforgivable. If I didn’t love my doctor so much, I’d probably start an awareness campaign to ensure some changes in the “business as usual: cut ‘em, burn ‘em, and poison ‘em.”
I don’t like being angry, especially with people who are great, and have saved my life. I’m too hurt, and I have too many other neglected issues; I can’t broach this topic with them. Could you just send them some information? I know there are other patients who will be eternally grateful.
God is good; I just discovered the Jupiter Medical Center and their newly initiated STAR Program. I have my first appointment this Monday.
October 19, 2011 (Sandra wrote the following note after the announcement of a statewide STAR Program initiative in Rhode Island.) Congratulations! You’ve just taken a huge step in making oncology rehab available to patients in our country. I pray for you and wish you the greatest success! I will be paying it forward.
October 23, 2012 If not for cancer rehabilitation, I would still be an invisible, voiceless person fighting cancer (and death), struggling alone, and probably still desperate for help. I’ve decided to spend the rest of my life writing about my journey—sharing the knowledge I learned and being an advocate for breast cancer survivors.
I have confronted my oncologist and demanded help that I needed.
September 21, 2013 I think “congratulations” are in order. I see the STAR Program popping up all over the place. I feel like I’m keeping in touch with you through all the announcements. What a wonderful thing you are doing for patients with cancer.
July 3, 2014 For 8.5 years I lived as if on “death row.” I was alive, but not living, almost an invalid, and there wasn’t much hope of my life ever getting better, according to my doctor(s). Sometimes I think my oncologist didn’t do a lot of things for me, because she and everyone else have been waiting for me to die. I’m not afraid of dying, but I don’t want to suffer. If I’m alive, I want to be engaged in and participate in life. I’ve gone from death row to having a life, a life worth living, because I found the STAR Program and other support. I have so much love in my life. I am truly blessed.
Epilogue, by Sandra Wade Oncology treatment has kept me alive—for that I am grateful. However, the ongoing and collateral damage has resulted in myriad medical conditions complicating my suffering and increasing my rehabilitation needs. Not surprisingly, I suffered from clinical depression, and was anxious and frustrated. I struggled with loss of independence, isolation, loneliness, and was bed-bound, unable to care for myself and needing help to do everything, including sitting up, getting out of bed, walking, bathing, and simple life activities.
I learned of the STAR Program online. Cancer rehabilitation validated my thoughts and feelings, and gave me the hope for a better quality of life.
I have great respect for my oncologist, but I will love my physiatrist for the rest of my life. She has helped reduce my pain (and pain medication) and improve my quality of life. I am eternally grateful.
Dr Silver is the founder of Oncology Rehab Partners (www.OncologyRehabPartners.com), which developed the STAR Program Certification, a service-line model for high-quality cancer rehabilitation care that has been adopted by more than 200 hospitals and cancer centers and is now available at nearly 1000 sites throughout the United States.
Sandra Wade is a breast cancer survivor and cancer rehabilitation advocate. She has written about her experience in the book, Chicken Soup for the Soul: Hope & Healing for Your Breast Cancer Journey, and has been interviewed by various media outlets. Her willingness to share her story and educate healthcare professionals about cancer rehabilitation from the patient’s perspective has had a considerable impact on advancing the field.
