Hope is a potent ally for the patient with cancer, and it is a response that helps inform a patient's journey with cancer.
As an individual diagnosed more than 5 years ago with multiple myeloma, I have been struck by the reliance on the part of some cancer patients who place significant emphasis on clinical trials and research, and the desire to “battle and fight” the disease in order to seek cure and avoid untimely death. This emphasis also applies to healthcare providers and researchers, many of whom are the very originators of this focus. Offering hope supports that singular human need to achieve another state of being. As a need, hope is more than an emotional state with something that could be different in our lives.
Hope is a multifaceted human need that drives one to achieve or craft one’s life in a certain direction. More than a guide or roadmap for ourselves, our families, our friends and beyond, hope can influence the essence of very fundamental human behavior from birth to death.
There are many ways of examining the concept of hope as it applies to the cancer patient. At its very core, hope and the patient may be seen through the lens of the quality of life or lifestyle, a religious orientation and faith, and the belief in the human soul.
Hope can produce a quality of life which may be considered a lifestyle. That is, our daily behavior from birth onwards is built around a series of ideas, principles, concepts and other’s thoughts that from a belief system and ultimately organized as a lifestyle. While the concept of lifestyle is a complicated phenomenon, the idea of grouping the many forms of individual human behavior into a set of mostly observable behaviors can have, at its core, the idea of hope. Hope may well be the driving force as we traverse our way through life. And part of this is the idea that hope is an amazing gift from God which underlies the very essence of a positive quality of life or standard by which we live from birth to death.
In many organized religions, hope is part of the foundation of religious faith which is built around the omnipresent force commonly referred as the concept of God. And, as some religions have espoused, the human soul is the person’s window to God, which guides our thoughts and beliefs about our future, and ultimately to our understanding about the hereafter. Hope also helps to form three other aspects of human behavior.
These three beliefs are the belief in the human soul, belief in our own future, and finally, a belief in the hereafter. Aside from biological growth and development, the human being also learns, accepts, and inculcates into our being the beliefs in the human soul, our own future, and the hereafter forming our human core. Hope, then, becomes a primary vehicle for understanding human existence.
So, how do we make sense out of this? My own interest in this topic grew out of my volunteer work as a moderator for a digital support group for people with Blood Cancers.
This group is nationally supported by ANCAN, a cancer information organization. In my moderating work I was struck by the almost exclusive interest on the part of participants in medications they were taking, clinical trials they were participating in, details about their chemotherapy designs, and related topics.
Initially, I was shocked to listen to the conversation. As a psychologist, I had much more anticipated that discussion questions about, “What are you feeling? How are you coping? What is your family doing to help you? Are you ever angry about getting cancer? If so, how do you express yourself?” And to my professional amazement, these discussion points never came up and when asked if they were interested in talking about this, there was only some quiet grumbling.
The good news is that silence almost always works, so after a moment or two, one brave soul said, “you know, I always wanted to know what it will feel like when the “end” for me is near?”Understandably, this generated a good deal of healthy discussion. So, from a hope perspective perhaps what I call Medication Talk is really Help Talk organized in a way that is emotionally acceptable to the participants.
As mentioned earlier, hope can also be viewed as a form of quality of life or lifestyle in which some have built their style of living around the concept. Virtually everything they do involves some consideration of hope. One’s personal thinking about self, spouses, extended and close-in family, siblings, employers, friends and acquaintances, neighbors and virtually all others that we have contact with have hope woven into those relationships. Hope that it will remain the same, or that it will change for the better, or somehow be different. Hope is tightly woven into our very essence or being and is the principle upon which we judge and evaluate virtually all our thinking concerning the past, the present, and the future.
From a practical point of view, the concept of hope is difficult to understand, especially in the presence of catastrophic disease. Disease challenges us to live beyond the confines of the disease as we know it or come to understand it. One way of understanding this is to examine the emotional role of medications at the center of disease treatment, most especially cancer treatment. The principal advocates of this are first the practitioner who provides the diagnostic understanding of the disease and prescribes the medication to “fight” the disease.
And second are the patients who often develop an fixation around the current medication, the clinical research around new medications, and the overall effectiveness of both. What is interesting to note is this author’s own experience with his multiple oncology physicians wherein the regular monthly appointments are almost completely focused on the efficacy of the medications that fight the symptoms of the disease itself and the side-effects of the disease fighting medications. Only under a few rare circumstances have we have conversation about feelings, emotional coping strategies, and end-of-life expectations.
Hope is a complex concept that each of us has a multitude of thoughts about. Conceptually, hope may be characterized as a religious phenomenon involving the idea of God and eternal life. On the other hand, but clearly related, hope can be considered a common part of the human ego or the emotional and biological structure of the human person. Finally, while hope is thought to be a universal aspect of all persons, its parts and dimensions certainly have cultural components that differ for all human beings. How one defines hope is both individualistic and group or culturally determined.
Hope does not equal living per se. Some have the idea that if they go through life embracing hope that they are truly living. Yet, hope alone does not and could not define living.If all our ideas, actions, behaviors, thoughts, and the like are based solely on hope, then indeed we are deferring the present reality for the future which is, by definition, hope oriented. While living, meaning the past, present, and future, does contain elements of hope, it is the totality of the hope concept that is problematic as it could keep us from what is happening because we are focused only on hope elements for the future. It is a sort of childhood version of, “when I grow up, I’m going to be…”.Hope for the past, present, and future is necessary, but it is the totality of it that does not constitute living in and of itself.
As mentioned, hope feeds the soul with a sense of identity which enables the person to live beyond the current situation that individuals find themselves in. As humans, we are complex individuals who are relatedly close, but not a copy of one another. We are created with the idea of a soul or a sense of self that combines our past, present, and the future. This is best understood as a combination of behaviors, religious beliefs, thoughts, feelings, guidelines, cultural belief systems and the like that can structure how we think and behave. This is most especially the case as we contemplate future thoughts, wishes, desires, and behaviors. How our soul is developed will determine in part how we will behave in the future. And for many, our souls have an exceptionally large religious or spiritual component which serves to help guide us through all our days on Earth.
This is especially the case for those of us with a terminal illness whose end can and is predicted in terms of time-based sequences and levels of disease. The longer the time with the disease and its level provides a statistical determination of the average life span. Hence, the role of hope and its foundation in God becomes even more important to the cancer patient as one prepares for life hereafter. Perhaps the final and most significant statement about hope is the question about God being eternal life. As cancer patients and others face the probability of near death, the idea that God is about eternal life gathers increasing importance and meaning. As human beings facing imminent death, the idea of the hereafter takes on ever-increasing importance. And, for those of us raised with a concept of God as part of our intellect and being, at the very essence of hope then is an ever-strong belief that God is responsible for our hopeful belief in our daily existence and in the afterlife.
Hope is indeed a complex issue for all human beings to deal with. While this complexity applies to all human beings, it is particularly relevant to those whose illness or age is such that it is likely to be more imperative. Hope provides a livable statement about quality of life. As an alternative to the idea of hope as a pathway for disease-fighting, hope can provide a set of statements or directions to be followed for the living of a quality life. While the concrete approach determining a sort of mechanistic attitude is a normal human process, hope can be useful for conceptualizing a much broader approach to living. The dimensions of this are endless and usually involve other people, family, friends and perhaps even volunteering yourself to assisting others in need.
Even though cancer patients must follow a structured path of treatment for disease resolution, that path does not preclude additional elements which have a broader appeal and usefulness for the patient. In fact, an attitude of belief that the future may be pre-determined because of the disease, adding other dimensions like hope to one’s living can strengthen one’s approach and add richness to their quality living.
To this end then, hope is a gift and becomes the essence of a quality of life issue for us. We surround ourselves with the idea that hope is a gift, and one which has been nurtured by ourselves over time and often nurtured by other people in our lives. We have been taught or otherwise learned that the idea of hope provides one of the principle ways to achieve happiness in life even within the context of catastrophic disease. As we move through our own individual stages of development, hope is a human quality that enables us to create opportunities for positivity and peace of heart.