Maggie’s Presentation to Saint Francis Hospital
I am giving thanks to God for my life and for this wonderful opportunity to meet with everyone who took the time out of their busy schedules to attend this meeting.
My name is Maggie Gardner, and I am the Executive Director of Gardner’s House. I have survived Breast Cancer twice, and I am here to tell you a bit about my journey and how it has affected my life.
I received my first cancer diagnosis between 1999 – 2000. I had to monitor my breast for 6 months after the mammogram did not show where the was located. Soon after, I underwent a partial mastectomy procedure. At that time, I had everything I needed to wage my battle against cancer: a wonderful job with benefits, money, and support from friends and family, as well as my wonderful residents where I worked at the Gables in Farmington. Having these important resources–this “safety net”, I call it–helped me to fight stronger, and recover faster, than I might have otherwise. I know this to be true, as I met with a recurrence of cancer in 2005, under very different life circumstance.
In 2005 I lost everything: a dear hospice patient, money, friends, and saw my marriage dissolve and my husband walk out, leaving me to face the challenges of cancer largely alone. The stress took its toll on my body, but also on my mind, as I then faced a severe depression, on top of the cancer, from financial strains, and social loss. God bless a wonderful doctor–Dr. Christie– who knew the distress I was under, and who set out to help me as I was fighting for my life in so many different ways.
Given my struggles at the time, it also would have helped enormously to have had the support and guidance of a social worker, although one was never assigned to me. I also expected that an agency like the American Cancer Society, for which I participated in fund-raising efforts in the past and which highlights as its mission to help persons in my situation, might be of assistance to me. However, my attempts to solicit their help were fruitless. I was similarly sent away from several foundations I contacted, and was told that, for various reasons, I did not qualify for services. I was operated upon, given pills, alerted about side-effects, and treated, for the most part, as a body. But at that point, the difficulties with my body were only part of the problem. I attended a monthly cancer support meeting at St. Francis Hospital, to ask — what could be done for the “other half of the person”—that is, the half whose social world had been turned upside-down, the half who could no longer smile and laugh, the half who could no longer afford her rent? I was told that these were private matters. But regardless of whether these matters are best considered private or not, why not simply have information and life-sustaining assistance readily available to those who need it? While I felt so terribly alone through what “treatment” I received in 2005, what I have discovered since is that I am not at all alone in the types of challenges I faced during my cancer experience. In point of fact, many of my difficulties are echoed in the President’s 2004 Cancer Panel Report published by the Department of Health and Human Services.
Though within the richest state, Hartford is among the poorest cities in the country, and health care disparities continue to be staggering. So many people with cancer are suffering without critical support and basic daily needs. We should not delude ourselves with the notion that these are “private matters” and apart from cancer care. Rather, it seems that this concept is used to justify inferior care of the person. More and more, organizations like the National Institute of Medicine and the Department of Health and Human Services highlight the fact that, for the majority of patients, difficulties arising from strained social support, income loss, and mental health care are not extraneous to the experience and treatment of cancer, but are really primary conditions, and must be dealt with accordingly by caregiver organizations.
How is it that in 2005 my needs as a person with cancer were ignored, disregarded? It is as if, despite the published and accepted mandates of national academies like the Institute of Medicine, there persists an illusion among treatment staff that care is doled out suitably and equitably, that everything is okay and life is fine because the body has been treated and the cancer controlled. But I beg to differ. As a cancer survivor, I can tell you in no uncertain terms, the life you knew before cancer is gone forever—one does not simply return back to the “way it was.” Instead, even if the cancer is treated, and removed, you are left to start anew, with the experience of this horrible disease and the toll it has taken upon your life ever-present in your mind. Without having the proper resources made available, you become all the more susceptible to compound loss and depression. For myself, I know that the statements made to me such as “That is another topic,” or “a private matter,” felt like rejections, making things only worse, adding to the insults I had already endured in body and soul. It was more than I could bear. I had to fight not to stay in that dark room and to stop myself from going insane.
On top of all this suffering, I should also note that I had a very bad experience in January 2007 when I went to have my six-month mammogram at the Breast Health Center on 95 Woodland Street. I told the person conducting the mammogram that I only have one “real” breast, on the right side, and that Dr. Christie requested the exam, and that it should only be conducted on the right side. I tried very hard to communicate this to the evaluator–to leave the left one alone–but she was determined to x-ray the left side, and convinced me that, even if there is an implant, no harm would come to it. I trusted her because she was the professional.
A few weeks later I notice that the cleavage I had was getting smaller, and went to see Dr. Christie. He took one look at it and said “it’s leaking.” So then I went to see the plastic surgeon, and he monitored it for a few more months. I even lost weight to see if I could get the right breast to match the left—but without success. I became lopsided and had to schedule yet another surgery. And like many, I find surgery a particularly exhausting ordeal. The pain of the healing is often what is most feared, but it also takes me weeks to recover proper cognitive functioning, as I feel myself in an unwanted and uncomfortable haze, straining to regain normal alertness and memory, which are, of course, key to the work I do in providing support to others.
This last surgery took place on Jan 23rd, 2008—I had had this area on my left side cut about 3 or 4 times before, and now I had to have it cut again. The nerves took some time to regenerate after cutting them again, and I was in tremendous discomfort, enduring sleepless nights, and very painful days. I was told that I would have to go back for yet another surgery to have the breast removed ! Not another surgery, I thought. So I opted to bear the pain.
I have seen precious little support from care providers for some of the most challenging parts of the cancer experience: the dread, the pain, the compromise in post-treatment functioning, the income loss—things that speak to basic needs, particularly for those who have limited financial resources. I have used my time during and in-between cancer experiences to pursue both formal and informal research. My formal research, through readings of governmental and other study documents, have shown me that I am in fact not alone in the types of situations that I have encountered; that hospital and other community care venues are notorious for falling short of addressing so many patients’ needs. Perhaps these organizations are already so overwhelmed by the complexities of the care they provide, that they do not know how or where to begin to provide care that addresses the “other half” of the patient – the person. But I do know how to do this, having learned in the most direct fashion through both my own experience and the nature of the support I have been able to provide to so many others like myself over the past few years. This “informal research” is comprised of the care experiences that Gardner’s House makes possible, and which the hospital cannot provide, such as attendance with patients at their cancer treatment appointments, commiserating in late-night telephone conversations about the common demons that haunt all persons with cancer, and witnessing the exchanges of understanding and support between the patients themselves.
Perhaps most health care organizations are too saddled with the complexities of medical provision to begin to even think of providing such personally-rendered services. But most are not given the invitation for collaboration by suitably addressing and inviting them join forces. Therefore, I am extending an invitation to St. Francis Hospital to partner with Gardner’s House for their cancer care services, as a means of addressing the needs of the person behind the cancer patient, whose life and soul have been forever changed by the cancer experience. Having worked for many years in health care myself, I believe that the staff–the physicians, administrators, and other personnel at St. Francis Hospital—truly do care about their patients, and even, on not infrequent occasions, fall in love with them as people. This is not lost upon me. Therefore, I know that you will take my invitation for partnership to heart, for the patient and person, who is discovering just today that she has cancer, who will be at your door soon, and who is about to embark on a journey that will forever change her life.