We’ve all heard about the Bucket List, that final game plan before the sands run out of the hourglass and life’s soap opera is over. But long before you reach that point in your caregiving duties, you should be helping your loved one to achieve on a smaller, less grandiose scale. That’s real cancer patient empowerment.
I can still remember my mother’s frustration two years before her lung cancer diagnosis. She kept complaining that she couldn’t breathe, that something had changed. Her pulmonologist pooh-poohed her concerns and instructed me to take my mother home, put her in a wheelchair, and take her for walks in the driveway when she wanted fresh air. And all the while, that tumor was growing inside her, cutting off her supply of oxygen.
Mind you, her physician was suffering from his own case of burnout. Too many terminal patients dying on him, a crisis of faith, and a mindset that when life is drawing to a close, you just stick the white flag in the air and surrender.
If you’ve ever hung around health care professionals long enough, you know they don’t walk on water. They have their own problems, just like the rest of the world, and sometimes when they suffer from emotional burnout, as was the case with this physician, it can cloud judgment. I say that, not to condemn the medical profession, but to point out that the first step to achieving real cancer patient empowerment is to have a physician who understands and embraces the concept. (I know they’re out there because those of us who advocate for patient empowerment have had the pleasure of knowing some of them — they are worth their weight in gold.)
I’m trained in Old School patient empowerment. I don’t believe in conning patients with slight of hand tricks or placebos. I’m not big on voodoo medicine or magic spirits to manage stress or pain. I believe that you fix what hurts as best you can — you utilize the services of a pain management specialist to control symptoms that affect quality of life, you understand the progressions and regressions of cancer management, and you get busy making life worthwhile. You don’t go worrying about whether a loved one is going to die six months down the road. You focus on what you can do right here, right now. That’s the phrase I want you to remember. Right here, right now.
Why is it so important to focus on what is currently happening? This is the time you have to help your loved one achieve things in real time. This is your window of opportunity. If you start thinking Bucket List, you’ll procrastinate, because a Bucket List is that grandiose wish inventory of final things to do before you die. Real cancer patient empowerment is helping your loved one function right here, right now.
That’s not to say you shouldn’t pick a trip or two, some fantastic adventure, and do it. I’m all for it, but while you’re planning that trip to the Alps to see where the fictional Heidi lived or you’re deciding between Fiji or Tahiti for that snorkeling trip (Me? I’d do both…), don’t forget to maximize what you have right here, right now.
In case you wondered what happened after my mother’s trip to the burned-out physician’s office, I’ll tell you. She did not go home resigned to that fate. She went home madder than hell. So mad, in fact, that she was determined not to follow his advice. Why? She wasn’t ready to do her Bucket List. She had too many things to do and she had another five years to do them. Think about that. Another 1,825 days. Another 43,800 hours.
If we had followed her physician’s advice, there are so many trips my mother never would have taken, activities she never would have enjoyed, skills she never would have acquired (she actually did learn to use a computer, despite the many tears of frustration), and laughter she never would have experienced. That concept of right here, right now kept her motivated through many physical struggles that plagued her. It was her incentive to keep trying, to persevere in the face of the Big Picture, that cancer had invaded her body and was determined to make inroads.
I learned the concept of right here, right now in college, when I worked in the pediatrics department of a big city hospital, back in the day when a cancer diagnosis meant most of the kids I met would not survive. When you work with children who are hooked up to IV tubes, machines pumping out powerful chemotherapy, and you’re not a medical professional, your job is to focus on the heart, mind, and spirit of the child because you know the doctors and nurses are working on the body.
Play therapy was one of my most important tools for learning about right here, right now. When you know that chemo has a kickback, when you know that it’s going to knock the stuffing out of a child when it finally courses through those tiny little veins, you go for the fun whenever you can. It’s really as simple as that. When I saw a child in an “up” moment, it was time to make the most of it. “Let’s play!” And when I saw a child in a “down” moment, it was all about the comfort. “I’m here.”
Working with kids who have catastrophic illnesses taught me much about life, laughter, and patient empowerment, because I very often saw instant success. That’s because kids love to have fun. It feels good to forget about cancer and all the crappy stuff that goes along with treatment. And when you can get a kid to giggle in a hospital bed, that’s just music to the ears. How can you not feel better when you hear that sound? It’s the sound of hope. It’s the sound of life.
Children naturally want to enjoy themselves, so much so that they throw themselves into the effort, even when they are ill. Most hospitalized kids are not really thrilled to be confined to bed because of physical limitations, and that’s why having the chance to stimulate them through activities, conversation, and opportunities for learning really does matter.
What’s the difference between kids with cancer wanting to have fun and adults with cancer wanting to have fun? In reality, not much. The activities often vary, but the idea is the same. When an adult receives that diagnosis, the first question is almost always, “How long do I have?” That’s that Big Picture, with the Bucket List of things to do before time runs out.
The right here, right now is the Little Picture, the ordinary everyday moments that we use to support our dreams, our goals, our achievements that make up the Big Picture. When we only think Big in our cancer outlook, we tend to think in terms of cure or catastrophe. The best or worst is yet to come. When we think Little, we create the opportunities that keep our loved ones going throughout cancer management. We maximize the days when the physical side effects of treatment are low and we minimize the direct impact of that disease. Think of it as a way to put it aside, so that cancer is not the “be all and end all” of your loved one’s life. Every little step away from the damage and destruction doesn’t just make it better for him or her. It also makes it better for you and everyone in the extended circle. These are the times we celebrate, because we don’t know what tomorrow will bring.
But even more important to real cancer patient empowerment is the understanding of what the right here, right now does for a patient’s psyche in terms of reducing depression, anxiety, fear, and that dread of the Great Unknown. The Big Picture can weigh heavily on our loved ones, empowering the cancer. If your loved one puts life on “pause” waiting for results that may or may not be positive, the quality of life is poor. The Little Picture can lighten that load, by empowering the cancer patient to remain as active and engaged as possible under the circumstances. That improves quality of life, regardless of the cancer’s course throughout treatment.
The philosophy of right here and right now is a way to help you and your loved one concentrate and focus on life. The curriculum is straight out of the School of You Only Go Around Once, So Do It Right. You are deliberately and mindfully choosing to make the most of what you have at this moment in time, to avoid regrets down the road.
The Big Picture and the Bucket List are almost involuntary reactions to a cancer diagnosis. We understand, when we run smack dab into this rude awakening, that life as we know it is finite and we should make the most of the time we have left together. It’s the Big Wake-Up Call.
The Little Picture and the right here, right now are part of a conscious, deliberate strategy of patient empowerment that requires cancer caregivers to take action. We look for the moments to have fun. We ask our loved ones what matters to them and we help make those things happen. Whether it’s a mother with breast cancer who wants to get to her daughter’s soccer game or a father with brain cancer who wants to take a bike trip, we do it right here, right now by getting on board with the plan and getting them there. Whether it’s a child with leukemia who wants to read a book in a tree house in the backyard or an adult with lymphoma who wants to relax in a garden sanctuary, we start right here, right now to make things happen by building the oasis in the cancer desert. Every time we help our loved ones inch closer to fulfilling the ordinary things they want to do while they manage their disease, we are empowering them to have control over their own lives, despite cancer.
Think of it as cognitive therapy in one of its most glorious forms. When a cancer patient says, “I can’t ever do what I want because I have cancer!”, that fatalistic view of life (and possibly death) colors the decisions he or she makes. The Big Picture controls the outcome of the quality of life, making it a losing situation for your loved one.
When you, as a cancer caregiver, find ways to empower your loved one with meaningful goals, achievements, and milestones of his or her choosing on a regular basis, the Little Picture of everyday life with cancer changes. Suddenly, the “undoable” becomes doable in baby steps. Your loved one begins to experience success on a small, but regular basis. Those steps toward achievement add up as your loved one begins to embrace the concept. That Little Picture begins to influence the Big Picture. Those positive experiences on a daily and weekly basis build genuine confidence and satisfaction, not to mention self-esteem, in your loved one. There’s no waiting for the Big Miracle that might or might not show up on the horizon in the future.
The act of creating Little Miracles right here, right now is a process that requires a commitment from you. You must decide that you will take the opportunities everyday life hands your loved one and find ways to live life out loud, without holding back or playing it safe. That is the right now, right here. When you share it with your loved one, these tiny moments of pleasure give everyone the chance to experience joy, hope, love, and laughter together.
For every cancer patient who has ever felt isolated and alone during treatment, the endless days and long, worrisome nights can seem overwhelming. The little gestures you make right here, right now often mean the most. They are the proof that no cancer patient is forgotten or put out to pasture because of a cancer diagnosis. As long as we are breathing, there is life. What can we do with it? How can we use it so that we feel that we have made good use of our time right here, right now?
Set your conscious mind to making a real difference in the life of your loved one by helping him or her to regularly succeed in doing the things that matter. Utilize whatever tools are necessary to compensate for lost abilities, to shore up skills affected by cancer treatment. At the end of the day, at the end of the week, you will both be able to look back and see that cancer wasn’t in charge of everything. In these Little Moments, you both worked together to empower your loved one to go on. Don’t miss out on them. Real cancer empowerment isn’t just about making life better for your loved one. It’s about making the relationship you share stronger, healthier, and happier. It’s a win-win for everyone.
For more help as a cancer caregiver, visit The Practical Caregiver Guides