A Note from Sara M. Barton, The Practical Caregiver:
I recently met an incredible woman who offered me insight into what life is like for someone living with the disease. I found her to be a great motivator and a wonderful teacher — she makes such an effort to reach cancer survivors and to improve their lives in meaningful ways. That old cliche aside, this person really is a gift to the world. An amazing, sweet, thoughtful, funny package of wisdom and kindness, all rolled up into one very decent human being.
Life isn’t fair. Just when you think it’s all working out just fine, that word comes back again. Cancer. How I wish it were not so. How I wish I could make it better for her. The truth is we don’t really know where the road will take her, but we do know one thing. She will never be without love. Come what may, we are there and we care.
————————————————————————————–
Part Two:
I once dumped a social media and web designer for his unethical behavior. He actually thought it was appropriate for his clients to fabricate their credentials. As I sat in the trendy coffee shop and listened to his speech on how to embellish my profile for my website, as I watched that little shark smile glisten as the light landed on those pearly whites, I thought long and hard about how much I was willing to compromise myself. What was I willing to do to make a difference for families providing care to loved ones? I wasn’t willing to pretend to be something or someone I’m not.
I also dumped a business advisor, who made the mistake one day to, in his words, give me “a little tough love” — I had to formulate my business plan with the idea that I was going to build a local company, which I would then sell to some business people who had a vague background in managed care, no real commitment to caregiver education, and basically I would make some money, all while waving bye-bye to the people I most wanted to help. I have been working seven days a week for more than three years now, pulling together a plan for caregiver education that goes beyond the superficial efforts of agencies looking to sell a service. I spent years learning what I know, and I want that experience to matter in the real world. When I set out to share information, especially for cancer families, I have only one “sniff test” — when I put the information up, for all to see, can it actually help anyone?
Cancer is a very tricky business, especially now that cancer patients are becoming cancer survivors. There are so many issues involved in learning how to manage a disease over time. Cancer can be cruel. It can return again and again. How do families cope with that? How does a cancer patient stay motivated? What can we do to improve the quality of life for cancer patients and keep the joy handy?
I’m at that age where I know what I know. I was trained as an educator. I was trained in information science. I was trained in psychology. I did my first teaching practicum in the pediatrics department of a prestigious city hospital. I volunteered with cancer families. Over the years, I worked in a psychiatric admissions hospital with unmedicated and undermedicated psychiatric patients in crisis, in educational settings with students who have learning disabilities, and even with juvenile delinquents, some of whom were violent offenders. You won’t see a lot of degrees after my name or see me in the social pages with my arm around this socialite or that mucky-muck. I’ve been too busy in the trenches, trying to figure this thing out, using what I have learned about the human spirit over decades. My focus is specific — what can we do to improve the quality of life for cancer survivors and their families through education and information? How do we get this done and get it done right?
I’ve talked to cancer patients who think cancer caregivers are swell, but they just don’t really understand what it’s like to have cancer. I’ve talked to cancer caregivers who are at their wits’ end because they’re out of ideas on what to do. As an educator, I believe that there is a way to teach every concept under the sun. I know from working with students who have learning disabilities that the human mind is far more complex than we think and sometimes we have to bypass the usual routes to get the job done another way. What does this have to do with cancer? Think chemo brain and you begin to see the possibilities. Think about how the mind learns under stress and you begin to realize that we cannot afford to have fear drive the cancer bus, not if we want cancer families to thrive.
Some people are concrete in their thinking. These are typically goal-driven people. There is a challenge to be met and they meet it. In terms of managing cancer over time, these are the people who will look at milestones and markers. These are achievement people. They measure their success by what they manage to get done. How can we help them meet those goals while they survive cancer?
I also know that people who are creative thinkers are far more emotional in their approach to life. How they feel is more important than how things really are, because they want to enjoy life using all their senses. In terms of managing cancer over time, these are people who will look at the relationships they have and the satisfaction or lack of satisfaction they derive from them. These are experience people. How can we help them find the joy in life while they survive cancer?
And then there are the people who like to balance achievement and experience. They will look at the milestones and markers along side the experiences they have. They will be happy when the goals are met, but they will make an effort to stop and smell the roses. How can we help them to find satisfaction in the things they do and the relationships they have while they survive cancer?
These are three different educational modalities, when you are talking about teaching cancer families to thrive. Very often, there might be a cancer caregiver who is goal-oriented caring for a cancer survivor who is experience-oriented, or vice versa. The cancer caregiver focusing on milestones and markers can talk all he or she wants about how fabulous the numbers are, but when a cancer patient feels like crap, it really doesn’t matter. No amount of numbers talk is going to change how that patient faces the cancer. It’s an apples v. oranges situation. It’s not enough to provide fruit. You have to provide the right kind of fruit.
For a cancer patient who is too aware of the discomfort of cancer, whether it’s a physical symptom or an emotional reaction, it’s important to meet those needs, regardless of how good the Big Picture looks. Fatigue, nausea, an inability to eat, neuropathy…depression, isolation, frustration…these affect the perspective of a cancer patient in very real, very debilitating ways, and that is the need to be addressed. We should be asking, “Where does it hurt?” We should be addressing the real needs of the cancer patient in real time, whether it’s body, mind, or spirit. Talking about numbers when someone can’t think straight because of chemo brain doesn’t help. Tackling the issue of chemo brain does. Cancer caregivers can do more to help loved ones find real solutions to problems, but only if they are aware of the opportunities.
But what happens when a cancer patient is goal-driven and the caregiver is experience-driven? There’s still a disconnect. Some patients can take some really tough cancer symptoms and survive them because they see the light at the end of the tunnel in those milestones and markers. They’re in the zone, like marathoners, and they just rounded that last hill. Now they’re pacing themselves, keeping a little something in reserve. For caregivers who are focused on the experiences involved in cancer treatment, the sight of a loved one without hair, with that too pale skin stretched tight across the bones can produce real, palpable fear, a fear that won’t quit. “He’s really dying!” The truth is that cancer treatment can be extremely harsh and what it does to the human body can be scary. Managing the fear associated with cancer is critical, not only for the cancer patient, but for the caregiver. And far too many patients feel isolated. It’s not just that they withdraw because they are wounded by the devastation of the illness. Very often, they are pushed away, by people who just can’t handle cancer and its complications. We need to change that in real ways that make a difference.
And what role does survivor’s guilt play in cancer caregiving? How many cancer patients are helped by having their caregivers feel so helpless, so useless, that no one gets what’s needed? Cancer caregivers have to come to an understanding that the best way, the only way to truly help their loved ones is to be strong, to be the wind beneath the wings — birds gotta fly and so do cancer patients, but in their own way, with respect to their own capabilities. Cancer caregivers must empower their loved ones, not drag them down with guilt. Isn’t it better to find as many ways as you can to help your loved one be as comfortable and active with cancer than it is to sit in the dark together, feeling miserable? Do you help someone who is terrified by sharing that terror? Your job as a cancer caregiver is to spread light and to help a cancer patient navigate the rough terrain that is cancer. “Like a bridge over troubled water, I will lay me down….” Your job is to be there, at those critical moments, to make sure cancer patients get past those obstacles that stand between existing and thriving. It’s all about quality of life with cancer. And there is no real way to do that without asking the hard questions and doing the hard work. It takes commitment, compassion, and a desire to provide true comfort for the body, mind, and soul.
That’s a very big part of why I am so “difficult”. I actually believe that the more cancer families understand about the disease and how to manage it, how it affects the lives we lead, the better able we will be to come together and find that inner strength necessary to thrive with cancer.
As someone who was there in the early days of a lot of New Age philosophy in cancer treatment, I can tell you a few things you need to know about so-called metaphysical practices like Reiki and vibrational healing in the cancer world — what does and doesn’t work. There is far more involved in mind/body healing than just having a self-proclaimed Reiki master focus on one’s chakras or a vibrational healer wave a magic wand. In the medical setting, I have repeatedly witnessed individuals declaring patients healed through Reiki “massages”. I have no problem with people meditating. I have no problem with people believing in a higher power. I have no problem with people aligning their chakras or tuning into the great cosmos. But when it comes to cancer patients, there must be accountability. Doctors, nurses, therapists — they hold licenses to practice. They are accountable for their claims and they are expected to produce results that are measurable.When a doctor practices bad medicine, his or her treatment techniques, diagnosis, medication protocols, and ethical behaviors are examined. It’s one thing to talk a cancer patient into a calm state, to suggest the universe is at peace, to encourage a cancer patient to imagine being part of that wonderful healing energy. But far too often, metaphysical healers proclaim cancer patients physically transformed by their magical energies that are invisible to the naked eye, to the microscope. Imagine what it feels like for a cancer patient to be told that he or she has had the aura healed, only to find the cancer is more aggressive than ever. If a metaphysical healing fails, who’s to blame — the patient or the healer? Who vouches for the metaphysical healers working their magic in medical settings? And how do you prove responsibility, good or bad?
I once sat in a chemo room on more than one occasion, listening to a man who was telling other patients he was a Reiki master who could heal them, even as his own cancer had advanced. He wasn’t suggesting that it was the spirit that would be healed. No. He was telling patients he could heal their physical bodies and rid them of cancer. Sadly, he was not the exception to the rule. There were healthy Reiki masters walking about in the same cancer center, making similar claims. The hospital executive I contacted insisted that the program was carefully monitored and the Reiki masters were professing no supernatural powers. And yet, in conversation after conversation, the reality was quite different.
Which raises a very ethical issue in cancer care — if I claim, as I have witnessed many to do, that I have the proper energy to cleanse your aura, but your cancer returns, doesn’t that make you a double loser? Obviously you must have failed to accept my healing energy because you’re a person stuck in darkness. You allowed that cancer to grow back, despite my best efforts to heal you. How else is that recurrence explained?
When we employ metaphysical practices within medical centers inappropriately, we are sticking cancer families into a hole from which they cannot escape. It’s one thing to use it as a stress reliever, a symbolic gesture of mental and spiritual healing. It’s another to use it as a placebo for real medicine. We should be treating what really hurts by peeling away the layers of pain, panic, and perception.
So many cancer patients and their caregivers already wrestle with guilt over the disease. “What did I do to cause my cancer?” That’s about placing blame. It had to have happened for a reason, so what was the role of the patient in creating the climate that allowed cancer in? “Why did my loved one get it and I didn’t?” That’s about seeking some redress for the situation. The unfairness that is cancer isn’t really shared by the caregiver, and no amount of self-deprivation is going to balance the equation. It’s really all about finding healthy ways to empower the cancer patient by being strong as a cancer caregiver.
Real mind/body healing is far more complex than throwing cancer treatment and mind relaxation techniques together. We must deal with that darkness between — the fear, the worry, the rage. That’s all about communication. Cancer patients need to be able to talk about their feelings in a safe, secure environment. Cancer caregivers need to confront their own apprehension, guilt, disappointment, and sorrow in a safe, secure environment. When that relationship is tainted by preexisting difficulties, when things get so twisted that there is no way to de-tangle the mess, the loss is even greater. When the relationship between cancer patient and cancer caregiver is strengthened, the honesty can flow in positive, healthier ways. That’s real healing. When you hear a cancer patient say, “You get me…”, that’s when you know you’ve made a viable connection, a true bridge over troubled water.
So many cancer patients find their lives are changed by the disease in more than just physical ways. I’ve had cancer survivors tell me their families have written them out of the picture because it’s assumed they will die from the disease, sooner rather than later. How sad is that?
How many relationships have been imploded by a cancer diagnosis? “Do I stay or do I go?” It’s easy to say it’s wrong to walk away, but should anyone ever stay in a bad relationship because of guilt? Real mind/body work is all about fixing what’s actually broken, and that includes the perceptions and misperceptions about cancer and life before the disease crept in. Cancer is traumatic, and some cancers are more so than others. The better we understand the effects of the disease on the psyche, the better able we will be to meet the real needs of cancer families, especially as cancer patients are surviving longer.
My belief that we can and should do cancer caregiving better, my belief that it can be taught in more effective ways, my belief that we can better help cancer patients by understanding what they are going through in mind and body — that’s what makes me “difficult”. When I have an interviewer superficially charging through her schedule, looking for someone like me to “fill” an hour on her show, she’s not interested in what I have to say. I’m not a “name” in the cancer world. I’m no cancer VIP. She’s looking for someone who will talk about cancer for that time period. She’s more interested in the subject of cancer than in the actual conversation. In that sense, cancer becomes the tag, the label, the word bantered about.
I’m here to make a difference, a real difference. I know there are ways to help cancer families manage their lives in more meaningful ways, by coming together, by working together. I’m not prepared to go and sit in that truck, hoping someday things will get better. I’m not willing to settle for ordinary fixes, with people talking, talking, talking about cancer. I want to be there to make it happen. I want to teach real skills to real people, and I want to know these efforts make a positive difference for those who are willing to use them. That means opening up the world of cancer caregiving to share the knowledge and the learning.
For every cancer patient who has felt like a leper for having the bad fortune to contract the disease, believe that there are people like me out there who care. Every time your family falls short in supporting you, know that people like me are trying to bridge the gap. And for every cancer caregiver who is at a loss on what to do next and where to go, don’t stop trying to make life better for your loved one. Listen with your heart and your head. Hear the words. Read between the lines. Continue to reach out, even as you learn.
To all of you cancer families, this is my best advice. Learn from other cancer survivors. You will see failures and successes in varying degrees. Pay attention to what made them feel better. Pay attention to what made them feel worse. Pay attention to each other and know that cancer can be a lonely journey when it is not shared, so share it. Be there because it matters.