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cancer book cancer caregiver caregiver education Dr. Dan Silverman Idelle Davidson Your Brain After Chemo

Book Review — “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus”

“Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus”
by Dan Silverman, MD, PhD, and Idelle Davidson
Da Capo Press (Perseus Books Group)

Let me start out by saying I loved this book. Chock full of important and useful information about chemotherapy and other factors in cancer treatment that can affect memory and the ability to function…all good. Even now, a few years after publication, the information appears to hold up to the test of time.

I say this as an educator, who has some background in how the mind learns, and sometimes relearns information. Having worked with students who have a wide range of learning and behavioral disabilities, I know that the brain can be a complex and challenging organ.

As a former librarian, who regularly compiled bibliographies on subject matter, I would put this book on just about any cancer book list, but especially on one for people interested in breast cancer and lymphoma material. The authors really focus a lot of attention on how these patients endure the cognitive difficulties of chemotherapy, often due to specific medications used to treat certain types of these cancers.

Dr. Dan Silverman has an extensive background in the field of neuronuclear imaging, as well as molecular and medical pharmacology, and is involved in brain studies that seek to demystify neuropsychiatric symptoms of dementia, depression, and even the effects on hormones on the mind. His research aims to better optimize cancer treatments on a biochemical level, while minimizing the invasive impact on cancer patients.

Idelle Davidson, an award-winning journalist who has experience in reporting on health and medicine, had a first-hand encounter with the cognitive difficulties involved in undergoing chemotherapy, and she clearly uses this as a means to help her give voice to cancer patients with similar difficulties.

One thing I’ve had several cancer patients share with me is just how hard it was to experience the mental fog, only to be told it’s nothing to worry about. If cancer patients find it to be a problem, it’s a problem. It’s sometimes tempting to think that endurance is key in surviving cancer and that patients must take the bad with the good. Some doctors may take a “wait and see” view and expect patients to just sweat it out, but by approaching the subject of how the brain is affected during and after cancer treatment, the authors open a new pathway for treating the whole person. For that reason, I can see this book as being an extremely helpful resource to oncology professionals, including patient navigators in cancer centers.

What sets this book apart? Many people today have gone from talking about “chemo brain” to talking about a generalized “cancer brain”. When Dr. Silverman and Ms. Davidson talk about how the specific drugs affect specific regions of the brain, they don’t stop there. The authors peel back the layers of scientific research, citing many studies that identify specific chemotherapy agents and measure changes they create in cognitive function. They also produce information on changes that can be directly attributed to hormone therapy for cancer patients. What is measurable? What is not? When you understand that the authors are using hard data to formulate their conclusions about how the brain is affected by cancer, you can appreciate the solid, scientific approach.

For a newly-diagnosed cancer patient and caregiver, this book may start off on the intense side, especially when reading chapters such as the “Q and A With Your Doctor”. I personally found all the chemotherapy information a bit daunting, not because it wasn’t solid and useful, but because there was so much of it. And yet, when I got further into the book, it all began to make wonderful sense.

My experience as a caregiver for a lung cancer patient put me at somewhat of a disadvantage in understanding this subject matter as it pertains to breast cancer patients, because of differences in the type of chemotherapy regimens. Most breast cancer patients can cite their numbers (HER-2, etc.), their chemotherapy drugs, and even the specifics of their hormonal treatments. In order to better understand, I asked for some perspective from a circle of cancer activists I know, to find out if they would do things differently, had they known what might happen to their cognitive functioning because of cancer treatment. One woman told me she was relieved to find out she wasn’t losing her mind, because it felt like that for her. Another said she’s just really glad she’s alive and it was all worth it for her. She cited Dr. Patricia Ganz as an expert she respected in the field. Ironically, Dr. Silverman also cited Dr. Ganz as one of his trusted resources on the subject.

As the authors explain later in the book, one of the reasons why there is so much material on breast cancer and lymphoma patients is because these are the long-term survivors who are alive to participate in studies of people most affected by “chemo brain”. That’s a very important point in understanding the value of this book. Cancer that is managed over years can be stressful, and having a strategy that addresses long-term goals, especially in recovering from cognitive disability, is life-changing.

Dr. Silverman and Ms. Davidson offer a nine-step daily program of activities that will help re-pattern the brain to function more effectively and efficiently, as a means to recover what was lost to cancer treatment. They also offer advice on healthy choices. I especially liked the information on nutrition because the authors explained how the nutritional intake affects the mental processes in terms of firing up the brain, the role of protein and amino acids, and even why milk is a good choice of liquid to drink. Their list of resources provides readers with contact information and types of services offered.

One of the strengths of this book is that the authors recognize many cancer patients are emotionally overwhelmed by their experience with the disease, and there is much information on the types of psychological support that can help, while cautioning that some issues are actually the result of how the medication works in the body, thus creating a physiological issue that may masquerade as a psychological one. I found the discussion of the role of the thyroid gland helpful, because of its regulatory abilities within the body, including mental processing. What kinds of psychiatric drugs can minimize the despair or help patients concentrate better? What can yoga, meditation, and even reconnecting with nature do for patients? Some people get swallowed up in “learned helplessness” and that sense of futility when cancer strikes. What can cognitive therapy do for them? The authors guide readers through this maze in depth.

The authors present information on a number of programs that address options to train, retrain and/or strengthen the brain, such as “Memory and Attention Adaption Training”. This is a light at the end of the very long tunnel. When a reader learns that there are steps that will help a cancer patient recoup mental fluidity and understands that the process takes time, it’s possible to begin to set realistic goals in cancer recovery.

In the future, perhaps treatment for cognitive difficulties will become standard protocol for every affected patient, through physical and occupational therapies. The more we understand about how the brain is changed by cancer treatment, the better we can work to prevent the damage. This book goes a long way towards making that happen.

Note — I received a copy of this book from the author, Idelle Davidson. She offered it to me as professional reading in my capacity as the Practical Caregiver. I felt compelled to share my thoughts on it in the form of a review, not because I received any kind of compensation, but because I found it has worth for cancer families and health care professionals.

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Idelle Davidson shares more on the subject at her blog, Your Brain After Chemo. It’s well worth stopping by, especially if you or someone you love is struggling with “chemo brain”.

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cancer caregiver caregiver education caregiver psychology fear PTSD

Take Hold of the Terror

I can still remember one of my first times in dealing with an abused woman. I was manning a psychiatric hotline in the early days after graduation, and I got tossed this random phone call from a very real victim. It was an eye-opening experience that has forever stayed with me for many, many reasons.

Her terror at the hands of her abuser was clear. She was tired of being beaten. She wanted it to stop. Inexperienced, following the volunteer organization’s guidelines, I stuck to the protocols and gave her the advice I was told to give her. “You need to get away from him. You need to get help….” Easier said than done. Things have changed a lot over the last four decades, and looking back, I can see what I didn’t understand back then. Terror will control your life unless you get a handle on it. No matter what causes it, there are ways to manage the fears, even when the threat of harm is real.

Terror is a hard thing to live with, especially when it haunts your every waking moment. There are so many variables, so many unknowns, so many “could go either way” scenarios. Whether you’re a woman facing an abusive partner or you’re a woman with breast cancer, there’s one thing you know too well. Terror.

Long after the bandages come off, regardless of the type you have, you still have to live with the fear of having cancer. Will it pop back up on a scan? Will it manifest as a new physical symptom? Can you outrun it, outmaneuver it? Will that new treatment work? These are the thoughts many cancer patients experience over their time managing the disease.

Oddly enough, they are so very similar to those of abuse victims trying to outwit their abusers. So, can a strategy that helps victims of abuse also help cancer patients?

Over the years, I’ve come to appreciate a very complex and layered approach to helping victims of abuse, especially those whose abusers are obsessed with them. Most abusers get fixated on their targets and refuse to let go. Their waking hours, and sometimes even their sleeping ones, are dedicated to figuring out ways to bring those victims back under control.

Imagine what it’s like for an abuse victim to be a target of someone who wants control. That’s real terror. And real terror very often will actually drive the behavior of the victim, making it an effective control. So, the first step is always to find ways to empower the victim in safe ways.

Safe ways? Isn’t any way that you can get a woman away from her abuser a safe way? No. The reality is that you can actually provoke more violence with the wrong approach. You can trigger violence by saying and doing the wrong thing. By backing the abuser into a corner, you may actually find he rallies all of his strength to attack in a do-all, end-all, to-the-death finish.

Many victims of abuse benefit from having a team of people who are all on the same page, who are all working from the same playbook. The idea is to surround the victim with people who help her replace that terror that has become a part of her life with new thinking. “I don’t have to live this way. I don’t have to always be afraid. I can get out from under this pain.”

If you’ve ever seen movies like “The Burning Bed”, you know that sometimes abuse victims go to extremes. But the real solution doesn’t involve confronting the abuser and knocking him back. It involves changing how the abuse victim perceives the abuse and the hold it has. Move an abuse victim away from the source of that terror, not by pretending that the fear isn’t real or isn’t dangerous, but by creating a team of real support.

When an abuse victim is most terrified, there is comfort in numbers. There is a sense of safety in being around people who are reassuring, strong, confident, and calm. Learning to let go of the psychic pain of abuse is a process that takes time, practice, energy, and above all, the right kind of support.

For every cancer patient who can’t sleep for fear that as he or she does, the cancer is setting up shop again in the body, who walks through the days and nights feeling battered, real support is critical. It isn’t a matter of saying, “Everything will be fine. Don’t worry.” That’s like telling an abused woman not to worry about the shadow she saw outside her window last night. It’s probably not the boyfriend who beat her mercilessly a year ago. Cancer patients, like abuse victims, have the right to worry, and they often have solid reasons to worry. But they still need to live life out loud.

How do you do that when there are shadows and unexplained noises and things that go bump in the night? For every cancer patient who feels betrayed by his or her body, being a victim of the disease stinks. Feel vulnerable? Feel weak? Feel useless? You will begin to believe that you deserve what you are experiencing as a cancer survivor. And let’s not forget the fact that many cancer survivors and their caregivers find people in their social circles melting away as the disease progresses. It’s a fairly common occurrence because we all have those fair weather friends who can’t handle the storm, but we also have the diehards who never desert the ship. We need to let go of the people in our lives who don’t support us and we need to utilize the ones who do.

When an abuse victim changes his or her mindset, when the feeling of self-confidence, self-esteem, and even personal strength begins to flow back, that’s when the real healing begins. You begin to feel worthy of protection. You choose to be proactive in taking care of yourself and preventing any further abuse. You value yourself, your life, and those around you who stood by you in your time of need. Little by little, day by day, as you go on, as you feel the terror fading, you begin to believe in life again, in love, in goodness.

Some people think that anger for an aggressor, confrontation, and even rage is the way to fight back, but in my experience, the best healing is that which takes the victim to a better, safer place by moving him or her away from the source of the continuous violence and psychic pain. Immersion in that lifestyle of repeated abuse only reinforces the terror. She needs a break in the pattern to be able to see that it’s possible to live without it. And once there is that light at the end of the tunnel, much is possible. Having an imaginary conversation with her abuser very often allows a victim to put perspective to the abuse, to begin to understand what she’s endured, what she’s missing in life, and what she wants to change about her life. That conscious process begins to sort out all the powerful emotions she grapples with when terror is in charge.

There’s a difference between a woman confronting her fears about her abuser, shouting to the heavens that she’s not going to take it any more, and a woman confronting someone who has the actual physical capacity to kill her. Unless she’s on equal ground with her abuser and has the ability to safely defend herself, the last thing that’s really helpful is allowing her to punch out his lights, especially if he’s obsessed with her. It will only feed his need to control, to manipulate, to master his victim. When you come between an aggressor and his victim, and you intervene by distraction, disruption, and deflection, you are interrupting his pattern of abuse, changing his access to the victim, so that he’s not as satisfied by the attack mechanism.

Cancer, like an obsessed stalker, is not a person with real feelings or rational thought processes. It’s not a person with whom you can argue or negotiate on real terms. Cancer is cancer. You want it as far away from your loved one as possible. You want to intercede as best you can to keep it at bay. And you want your loved one to know that you will do what you can to make that happen. But you also need to respect your loved one’s need to understand how cancer has changed life for him or her. There is an internal battle going on, one that will be decided by the cancer survivor. You cannot make your loved one go through the process of making peace with cancer’s abuse. You can only be the supporter of your loved one.

In taking that approach, you are mindful of the power cancer has over your loved one. You probably feel some of that terror yourself now and again. But when you think of cancer as something that paralyzes your loved one with fear, you can begin to understand that utilizing your strength as a caregiver means you can help your loved one overcome that terror. You can help your loved one reclaim personal power and personal choice.

Yes, abuse victims and cancer survivors often find themselves trapped by their fear of the next blows, the next attack, the next time it happens, and it’s up to those of us who love them to help them find their way out of that horrible darkness, not with fairy tale platitudes or cartoon solutions, but by recognizing the power of the fear over the victim and the need to move the victim into a safer environment, one that offers real support and real strength while the victim heals.

If you really want to help your loved one come to grips with the terror of having cancer, look around you. Who do you know who has been through cancer and survived? Very often, people who have had more than one fight with the disease have developed strategies. Talk to cancer survivors. Get involved with support groups, whether in person or online. Listen to people who have been there, done that, and got the tee shirt. They will tell you what worked for them. It’s rare that you will find a cancer patient who has navigated that difficult time and refuses to share insight and wisdom.

But don’t stop there when you are forming a support team for your loved one. Who do you know who has had major challenges in life and survived them? Look for people who have had experience in overcoming the odds. These are people who have worked on building their inner strength, and inner strength is required for the battle on terror. They may not have first-hand knowledge of cancer, but they know what it’s like to manage terror on a regular basis. Learn from them. How did they handle that constant barrage of in-your-face fear? How did they overcome the endless worries and put things in perspective?

And most important of all, minimize the contact your loved one has with people who secretly feed that terror, who have those all-too-familiar stories, complete with all the gruesome details of how the disease came back overnight and swallowed their loved one whole…”dead within a week…nothing the doctors could do…absolute disaster!” Take heart from the new reality of the war on cancer. Every single day, treatments are being developed. What was the cancer fight ten years ago is very different than the cancer fight five years ago. What was the cancer fight five years ago is very different than the cancer fight today. What matters is what’s happening now, not what Aunt Bertha and Uncle Herb went through back in ’69. As cancer treatments evolve, much of what went on in the last decade is now almost ancient history in cancer management.

Support your loved one by recognizing that it’s not just the cancer and the treatment of the disease that affects him or her. It’s also managing the terror of having cancer. Help your loved one to find safe, effective ways to readjust to life, by understanding the grip cancer has on the psyche. When your loved one feels surrounded with genuine support, real strength, and understanding of the healing process, when your loved one feels understood, that’s when the real healing begins. You will never be able to promise a cancer-free life, but you can, and should, promise to be there through the days and nights of terror.

There is strength in numbers, in hands joined together, in comfort that is borne of the desire to empower. It’s not about having a magic wand to wipe away the pain or fear of having cancer. It’s about being there and giving what the cancer patient most needs — your wisdom, you compassion, and your commitment to provide what is required for healing the body, the heart, and even the mind. When you pull all of that together, the spirit finds its wings again and can fly.

Every cancer patient needs the freedom to live life out loud. That’s because it’s what every human being, with or without cancer, needs. Getting back to being human is the biggest hurdle for cancer patients, and the road can be bumpy. Smooth the way for someone you love. The rewards are great. Not only will you gain insight and understanding of life and love, your world will be enriched by having the chance to rub shoulders with some pretty amazing people.

For more help as a caregiver, visit The Practical Caregiver Guides

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cancer caregiver caregiver education caregiver psychology

When Cancer Feels Like a Prison Sentence, Don’t Be the Jailer!

When cancer comes knocking at the door of a loved one, “normal” life changes. You sometimes may find yourself living with a stranger, instead of a spouse, parent, sibling, or best friend. The transformation can be terrifying, especially for baffled caregivers who don’t know how to react.

If you’ve ever worked on a pediatrics ward with kids, you’ve had the experience of knowing that “normal life” goes right out the window. Bedtimes are disrupted, dinner time is whenever the food service arrives, and family meals? Unless you take the whole gang to the cafeteria, you’re out of luck.

That wild ride in the hospital very often translates into serious behavioral issues when parents don’t have a grip on what’s happening and how to handle it. As an educator who worked with hospitalized children, I often saw family dynamics spiral out of control when the illness continued over time. The temporary suspension of schedules and activities somehow becomes permanent, and that changes not only the family dynamics, but the family structure. If you’re going back and forth to the hospital a lot, you sometimes surrender control of your child to the pediatric workers because you’re too exhausted to think, let alone discipline your sick child. You sometimes stop being a parent who teaches a child to be responsible and reliable, because you want to be taken care of, too. You’re terrified for your child and yourself. Wise health care workers intervene in those cases and help to empower parents to continue that important role. Families need to continue to be families, even during a health crisis, and that requires they regroup, refocus, and rework the kinks in the family dynamics.

Being in the hospital for any length of time is a frustrating experience for a child. You miss your bedroom, your possessions, your safe environment. The sights, sounds, smells, and tastes of hospital life can be scary. From the constant disruptions for treatments, vital signs, and equipment adjustments to the nasty medications to the painful changing of bandages, it’s not a fun time. Imagine, if you will, that you are a parent. It’s your job to protect your child from harm. The hospital setting can feel dangerous, especially when your child is crying because he or she got a treatment. If you love your child and you really want to make it more bearable, what do you do? Take your child home and let him or her suffer the disease’s effects? Or do you find ways to help your child understand that this treatment, which is so debilitating, is necessary? Having that strong parent-child relationship is critical. You need your child to trust you to have his or her best interests at heart. That takes some serious work and some serious love.

What does this have to do with adults who need cancer caregivers? In many ways, the triggers that cause children to become oppositional often do the same for adults. By understanding some of the problems faced in the pediatric hospital setting, you will improve your own ability to understand how adults perceive their care, and you will be able to adjust your caregiving to better reflect the needs of your adult loved one.

Freedom is a very important facet of human development. We need to feel that we have the right to choose our own destinies, without hindrance or disruption. We need to feel that our voices are heard and our opinions matter. We need to feel free to pursue happiness. What are legitimate reasons why others might step in and interfere with our actions? If we are directly treading on someone else’s rights, or if we risk harming another or ourselves.

Hospitalized children face a massive hurdle in the form of normal developmental milestones, often missed because of illness. Consider the plight of a teenager, on the verge of learning to drive, to date, to leave the nest. What happens when chemotherapy, radiation, surgery, and other cancer supports interfere with brain function, coordination, stamina, focus, attention to detail, and all the other skills that are necessary for teenagers to engage in activities that are age appropriate?

The truth is many teenagers undergoing cancer treatment can’t drive. As for dating, it’s hard to pull off a sparkly prom dress or sharp tux when your head is so…bald. How do you explain to your friends that you can’t go to the library after school because you need a nap? And when you’re invited to a pizza party on a day when you don’t even want to think about eating, what’s your exit line?

Fellow teenagers can be cruel when hormones rage and competition heats up. The little cliques that form on the basis of superficial connections can leave a teenager with cancer on the outside, not fitting in, not feeling like he or she belongs. So, what happens? The heart breaks, the spirit crumbles, and the next thing you know, misery walks in that door. For parents who want their teens to have a normal life, one that doesn’t involve cancer, it’s akin to torture to see your child so defeated. The ache that overtakes you can drive you to drink because you just want your child to enjoy all of the pleasures of being a teenager, without the nasty side serving of cancer.

For adults with cancer, the reactions of friends, neighbors, and colleagues can be devastating. Imagine being well-respected and productive before cancer, only to find that what you were good at has somehow evaporated, and you’re left feeling like a complete idiot. People talking behind your back…the whispers…the gossip…the pity…the sense of somehow being a leper….Your loved one isn’t just reacting to you and the rest of the family. Cancer is affecting his or her life in some very devastating ways that you have no control over, and unless you recognize these issues for what they are, you won’t be able to help your loved one navigate them.

As a caregiver for an adult with cancer, what does this mean for you? Think about your loved one for a moment, especially if you’ve seen some oppositional behavior rise up. Those freedoms that teens look forward to gaining are the very freedoms that cancer often takes away from adults as well. If your loved one can’t function safely on the road, there is no more driving until the situation is resolved. If there are unpleasant side effects from the cancer treatment, it’s a big blow that whacks your loved one’s confidence off the charts when it comes to love, romance, and magical moments in the moonlight. Intimacy very often is more than just a two-way street. The scars and the dysfunction that comes with cancer treatment put a real damper on efforts to reconnect. Sometimes it’s a head game, and your loved one needs time, perspective, and a re-introduction to see the invisible connection that binds you together as a couple is still there. Sometimes it’s a body reality, especially with hormone therapies that cause hot flashes, night sweats, and a decline in sexual arousal. But the biggest problem? What’s it like for an adult to lose his or her independence? It’s like being a child all over again. After you’ve spent years making your own decisions, going your own way, and choosing your own activities, someone is suddenly telling you what to do and how to do it? “I don’t think so!”

For many cancer patients, even those who are sadly aware of their new (hopefully temporary) deficits, it’s maddening to be bossed around. Yes, pills need to be taken and food needs to be eaten, but it’s exhausting to fight both the cancer and the new jailer. That’s why honesty really can be a cancer caregiver’s best tool. The compliance with medication and nutrition is often critical to survival, and it’s important to explain why you need to keep track. When you reach out to your loved one, when you explain your goal of making life more palatable for your loved one, you can open the door to honest conversation.

As an example, let’s say your loved one refuses to take medication. If you insist that it doesn’t matter what he or she thinks, it has to happen, you are de-powering your loved one. Very often, patients who refuse medications have solid reasons for not wanting to take it. You may not see it that way. You may feel your own frustration rising. You may be tempted to slip it in food or drink. But that’s not really a solution to the problem. The problem is your loved one doesn’t want to take the medication. Until you know the why, you won’t know the how. You can’t solve it until you understand what your loved one is perceiving.

How do you change that? First, you ask what the problem with the medication is. Side effects? Taste? The solution for this problem is to speak with the cancer team. Should the medication be adjusted? Is there a substitute medication that can be used? Can the medication be taken at a different time? Is food interfering with it? By identifying the real issue, you narrow down the possible solutions.

Maybe the problem is that your loved one is sick and tired of taking orders, of following the rules, of having cancer. That’s all about restoring the spirit, the sense of personal freedom, of empowerment. How can you give your loved one options? Every day, adults make thousands of decisions. Cancer treatment requires that certain decisions are made for the patient. But that still leaves many, many decisions available for your loved one to make. It’s up to you to offer them.

You can’t change the cancer, but you can change how your loved one experiences cancer. Wherever and whenever possible, your loved one needs to be in charge of the non-lifethreatening decisions that affect him or her — what to eat, what movie to see, what shirt to wear (hopefully without buttons if there is neuropathy), what color to paint the bathroom, what flowers to plant in the garden, and so on. Every time you give your loved one choices, that’s empowerment, and it helps to foster the sense of independence. Some cancer patients want to make those decisions, while others don’t — what matters is giving them the chance to have a voice and the choice to exercise it.

Cancer can feel like a prison. Avoid being the jailer for your loved one with cancer. No matter how sincere or well meaning you are, you’ll trigger all the emotional angst, panic, anger, frustration, and despair that teenagers are so famous for, but with a solid reason. Adults are used to being adults, and when you take that sense of adulthood away, even if you think you have a good reason, what results is the emotional backlash. “You’re not the boss of me!” rings true. Even when your loved one’s thinking is cloudy, even when you worry about his or her safety, you’re still not the boss. You’re the caregiver. You’re the supporter, not the director, not the manager, not the leader.

How do you negotiate around the hot spots of cancer treatment and aftereffects? By understanding them. As a cancer caregiver, the more you learn about your loved one’s issues, the better. There will be specific physical challenges, so find out what they are. There will be emotional challenges, so identify them. And there will be spiritual challenges, so understand that what the heart and mind process as your loved one goes through cancer depends on his or her real-time abilities.

Some of the saddest lessons for cancer caregivers to learn come from the experiences of breast cancer patients. The combination of chemotherapy, hormone therapy, surgery, and radiation will often knock patients for such a big loop, their existing relationships seem to crumble before their very eyes. Not every woman has a successful cancer caregiver when she goes through breast cancer treatment. Why? The impact of the disease and its treatment can completely change a woman’s life as she knows it, and that is a blow that traumatizes the psyche. “I’m not who I was, so who am I now?” Not only does the body usually change with breast cancer treatment, so does the mind when the treatment includes chemotherapy and/or hormone therapy. How do you reconnect as a partner with a woman who can’t remember where she parked her car, pays the same bill twice, and can no longer remember things about your relationship that formed the basis for the romance in the first place?

For so many reasons, cancer can feel like a prison. All the more reason for you to not act like a jailer. When you try to micromanage your loved one, when you attempt to manipulate your loved one into doing what you want done with tricks or strategies, instead of honest conversation, it may feel like you’re winning because you’re getting things done. But your adult cancer survivor is not a child. That cloud of confusion that creates problems for your loved one may not also affect the emotional processing areas of the brain. Your loved one may not be able to remember how to balance a checkbook, but don’t assume your loved one only has the mental capacity of a child and treat him or her as one.

As a cancer caregiver, your most important job is to foster independence in your loved one while preserving safety. You want your cancer survivor to engage in activities that enable him or her to return to everyday life, because that will help restore the sense of self that each of us needs in order to be who we are and what we are.

Yes, cancer has an impact on our loved ones. And yes, it can change how they function. But we should never come to think of them solely as cancer survivors. They are still people we love, people we need in our lives. Our job is not to contain them in the prison that is cancer. We are not their jailers. We are their supporters, and it’s our job to help them find all the tools, strategies, and opportunities to be their very best as human beings, despite cancer. We do that by respecting them as adults, by understanding the frustrations of losing the important activities of adulthood, and restoring to them as much of their functionality as we can, through honesty, respect, and real support for their goals in life.

For more help as a cancer caregiver, visit The Practical Caregiver Guides

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cancer caregiver caregiver education caregiver psychology

Real Cancer Patient Empowerment — Rethinking the Bucket List

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

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cancer caregiver caregiver education caregiver support

Rah, Rah, Sis-boom-bah! Cancer Is Not a Competitive Sport!

The smartest people I know in the field of cancer studies will tell you they don’t have all the answers. The wisest will admit they’re sometimes baffled about what to do in certain circumstances. But the one thing they do well is listen to cancer families. Regardless of whether it’s a cancer patient or a caregiver, a real expert knows that there is no formula for the perfect cancer care. Every patient is different, every family caregiver is different. You’re talking about the impact of human dynamics on a disease and the variables are many. That’s why it’s so important to understand that cancer is not a competitive sport. It’s not a case of “Rah, rah, sis-boom-bah!”

You don’t win the fight against cancer. You win the fight to live life out loud, in all its glory, and you do it by choosing to find quality of life in the everyday normal events that make up the moments of our lives. You do it by reaching deeper into what matters and embracing your true colors. Who are you as a person? What are you? Where are you in life and where do you want to be, even with all the challenges you face? What are the dreams that matter most to you and how can you make them happen? What are your goals and can you realistically meet them, or do they need tweaking and adjusting for you to be happy?

It might surprise you to learn that there are a number of self-proclaimed experts out there who are willing to tell you what you should do and how to do it. They have the “winning” playbook for cancer caregivers on how to achieve the best results. There’s only one trouble with that approach. It involves managing the caregiver, so that the caregiver manages the patient.

Think about that concept for a moment and you will begin to understand why there are a number of cancer patients who have a rather bleak view of cancer caregivers. The disconnect between those who need care and those who provide it can seem like an unfathomable distance. Why? What is it that makes the cancer patient feel cut off from the caregiver? Pressure to comply. Pressure to conform. Pressure to “get on board” and cooperate. Pressure to be cured. Pressure to defeat the Big C.

Cancer is not a competitive sport. You don’t win by intimidating the disease into submission. You don’t bully anyone into cooperation with the battle over cancer, any more than you cheer someone into success. “Rah, rah, sis-boom-bah! You scored!” Caregivers have an ever changing role, one that is fraught with pitfalls, valleys, steep climbs, and sometimes long, dark nights. That’s because cancer is a journey and you’re along for the ride. It’s not your body that has this foreign entity in it. It’s not your spirit, your mind, your heart that’s directly affected by the disease. When you set yourself up as coach and cheerleader for your loved one’s cancer battle, determined to press on, to persevere in the face of this disease, are you actually creating more harm than good, by treating it as a game to win? That’s a question every cancer caregiver has to ask himself or herself.

As the Practical Caregiver, I’ve spent a lot of time reaching out to various caregiver educators, advisers, and coaches because there are families struggling and my goal is to provide solid information that makes a difference. One thing stands out for me. Every time I have what should be a two-way conversation with a particular “expert” on cancer caregiving, I get a lecture. She throws facts and figures at me, citing this study or that study as the definitive answer to cancer’s problems. She provides me with a list of everything she knows about a particular facet of caregiving, all while “correcting” my errors in judgment, information, and anything else she deems faulty. And then she strokes me, telling me it’s wonderful that I’m doing this work. Sounds great, right?

Wrong. With her background in competitive sports, she’s constantly out to top me. By the time I’m done interacting with her, I feel like I’ve been going around in circles on the roller derby circuit with the Queen of the Rink Rats. She wants to dominate our professional relationship in order to validate her own credentials in the field of cancer caregiving. By promoting herself as having all the answers, she doesn’t need to listen. She just needs to win. And that winning involves convincing cancer caregivers to stop thinking for themselves and to do what she tells them to do. There is no give-and-take. There is no back-and-forth. There is no middle ground or equality. It’s her way or the highway. Move aside, because the champ is in the house!

In reality, she’s not more of an expert than I am. Having worked with a variety of people over forty years in hospitals, educational settings, and even in private homes, and dealing with different types of health challenges, I actually have some very significant experience in understanding the issues involved in family caregiving. As a trained educator, I also understand the techniques of behavior modification and management, because I’ve used them over the years. And with a background in psychology and real life experience in working with psychiatric patients in crisis, I’ve seen a lot of folks poke the bear and wonder why there wasn’t honey on the end of the paw when the bear struck back.

Bottom line? No one should ever tell you how to be the perfect caregiver. There is no formula for that. No one should ever tell you that if you do A, you will get B. But most of all, no one should ever talk at you, because real life involves give and take. That means you have to go back and forth until you understand your loved one’s perspective, your own, and then you find a way to connect, despite your differences in thinking styles, mental processing, and even emotional perspective on the situation. Real caregivers need to learn the process of managing a disease like cancer over time, with its various stages and progressions.

The one thing I have taken away from years of listening is the fact that emotional, and sometimes physical, isolation is a very real problem for a lot of cancer patients. Some of these people have wonderfully supportive families. Others do not. As a caregiver educator, I want to know what the disconnects are. Is it the perception of being misunderstood or the reality of being misunderstood?

When I talk with cancer caregivers, very often they actually do have a deep sense of what their loved ones are going through, and they, too, feel cut off from the relationship. But other caregivers sometimes have no clue about what’s going on. Why? They go at their cancer caregiving like it’s a competitive sport. They ignore the input of the person with cancer. That’s when many cancer patients tune out. They feel misunderstood because they are.

The one true thing I know about cancer caregiving is this. When you really listen to a cancer patient with your heart, your head, and your spirit, you look for the openings that will enable you to directly connect with your loved one, with what is really needed. Nothing, and I do mean nothing, will ever make a cancer patient feel better like being understood as a human being. Cancer survivors are not their disease and it should not define their every waking moment. Cancer is not the end all and be all of life. Wise cancer caregivers learn to navigate that rocky road by embracing the humanity, not the disease. Want to make a cancer patient feel better? Listen. Just shut up and listen. Speak from the heart. Don’t be afraid to say that you don’t have all the answers or that you honestly don’t know what to do. But be clear about this. It matters to you and you’re trying to do right by someone you love. That’s “the bridge over troubled waters” that really connects a cancer caregiver to a loved one with cancer. It means you’re there come what may.

For more help as a family caregiver, visit The Practical Caregiver Guides

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cancer cancer caregiver cancer management caregiver individualized cancer treatment stalkers stress

Having Cancer Is Like Having a Stalker Stalk You

Anyone who has ever had a stalker knows the sheer fear, that tension in the pit of your stomach that pulls your gut into one tight knot that never seems to let go. While you’re looking behind for that telltale shadow, you get broad-sided by that sudden furtive movement as your stalker suddenly appears right in your face.

If you’re a cancer survivor or a cancer caregiver, take a few pages from the “Life with a Stalker Handbook”. Understanding and utilizing the lessons learned in fighting a stalker long-term can help cancer survivors function more fully in their lives.

There are a lot of similarities between cancer and stalkers. Cancer, like a stalker, can deceive, can pretend to be cooperative, when in fact it is setting up shop in another organ, sometimes even hiding in plain sight and masquerading as a benign being. It can throw its hands up in the air and appear to be walking away, all while it plots to find another tiny opening in the victim’s life that can be exploited. There can be distractions, lulls, and even periods of inactivity, when you think it’s finally done. You tell yourself you can get back to your life, get settled into the normal rhythms and routines, only to find your life erupting into confidence-shattering chaos and confusion once again.

Stalkers are, like cancer, very dangerous because of their unpredictability, mindset, and potential volatility. In order to fight a stalker, you have to understand the menacing behavior of the individual stalker. You can’t assume that every stalker is using the same playbook. What drives this particular individual to do what he does? What does he hope to get out of it? Why is he attacking in this particular way? What does his victim have that he needs? Stalkers have certain patterns in common, but other activities and motivators are unique to the individuals.

The same is true of cancer. We treat it like it’s one disease, when in fact it’s hundreds of different diseases, with different triggers, behaviors, and malignancy rates. One size does not fit all.

If you’ve ever been the victim of a stalker, you know that panic. “What did I do to make this happen?” You review the scenes over and over again in your head, trying to figure out what it was you did to attract the attention of your stalker. Were you just too handy? Was it something you said or did, or even didn’t do? Why you? Why not your neighbor down the hall? Why not someone else?

Isolated incidents involving violence can be overcome with directed and mindful cognitive exercises. You can look at a single traumatic event and put a face to it, a meaning to it that will eventually allow you to come to terms with it and make peace, provided you have the right support and psychological tools.

But how do you fight a stalker over time? So often, the stalker lurks in the shadows, hiding behind bigger obstacles while he’s stalking, but the rest of the time, he usually blends into the crowd. A stalker doesn’t want to get caught, because if caught, he can be apprehended, contained, neutralized, even paralyzed in his tracks — so he feigns being something he’s not. The philanthropist loves everyone. The average Joe who’s minding his own business. The good guy who just happened to be passing by. The upstanding citizen who’s no threat to anyone. Cancer’s a lot like that. The symptoms can mimic other diseases, other issues, and that can be distracting. Doctors very often take the symptoms presented and assign them a diagnosis that has nothing to do with cancer. If they don’t suspect it’s cancer, they don’t test for cancer.

Some stalkers are better than others at getting away with their crimes. They learn to wear rubber-soled shoes as they creep about. They get to know their victims inside and out, always in search of vulnerabilities. Victims often flee to escape their tormentors, only to find themselves in greater danger. What’s a cancer survivor to do when the potential for “someday” looms on the horizon? Run away? Disappear? Bury one’s head in the sand and hope it won’t hurt too much when the rest of the body is left vulnerable to attack?

Stalking is, in reality, a mind game first and foremost. It’s psychological warfare at its best. It’s predator after prey. Sometimes victims can give their stalkers too much credit for intelligence. We imagine their power is greater than our ability to overcome, so we don’t look for reasoned ways to fight back. We don’t use our greatest tool, the human mind. We flee, and in doing so, miss so many opportunities to enjoy life by staying in the game. When cancer survivors wrap their heads around the notion that cancer is as much a mental battle as a physical one, they begin to understand their foe. In any battle, knowing your enemy is the most important means of directing his defeat.

Many victims of stalkers learn to live off the grid, to fly under the radar, in the hopes that they can evade their pursuers. Imagine spending all that time and energy trying to not do the things that will alert the stalker to your whereabouts or arouse his interest again. You might constantly ask yourself, “Is he going to find me again? Is he going to come after me once more?” The constant stress and distress of living with the potential threat cuts the joy out of life. You’re always teetering on the edge of despair. “I have now, but what comes next?” It’s the unknowing-ness of the future that hurts the most. It’s the mistrust of the half-consumed moment. Fear can paralyze us. “In the blink of an eye, life can change, and I don’t want it to get worse.”

But that’s not the only problem. Denial can often rear its ugly head in stalking situations. What happens when the stalker is in plain sight and everyone knows you’re his victim? What happens when everyone around you can see the stalker, but they don’t believe he poses a threat any more? People throw deterrents at stalkers all the time, in the hopes of dissuading them from acting out on their need to prey, as if that’s enough. That’s a lot like tossing cancer therapies at patients willy-nilly, in the hopes that something, anything, will work. Once treatment is completed, cancer survivors are just supposed to move on with their lives. They’re not supposed to wonder if the radiation will create new complications, or think about the potential for a different kind of cancer because the body was weakened by the first. “Don’t worry about it till it happens!” Is that really the best advice for someone who lives under the threat of another bout with cancer or complications? If I know I might have a problem at some point in the future, won’t I be better able to deal with it if I am armed with the knowledge that will empower me to do battle?

The truth is the more you know about the specific threat, the better, because that’s when you can develop a strategy. Even if you never have the chance to completely contain the stalker or his dangerous behavior, you can manage the danger he poses by being able to act in ways that make a difference. That’s how you rebuild a realistic trust in yourself, those who support you, and even in the potential for a good life. Fear that once prevented you from taking chances gives way to confidence borne of wisdom. “Yes, cancer may come back, but if it does, I’m ready for it. I’m prepared. I have my people and I’m going to give it everything I have.”

The most effective way to handle a stalker is to know him, inside and out. What makes him tick? Why is he doing this? Too generalized an understanding puts the victim at greater risk of not only triggering another incident, but also in becoming more vulnerable. There is a world of difference between a stalker who has a fantasy life and a stalker who has a secret life. Someone who is mentally unbalanced might spiral out of control without rhyme or reason. Someone who is trying to protect a skeleton in a closet will be very driven and determined in attacking his victim. His motivation for acting is self-preservation and he is willing to kill to make that happen. But stalkers are, by virtue of their covert lives, secretive. They depend on people not knowing what they are up to in order to hide.

Cancer treatments that focus on the specifics of an individual’s cells, genes, overall health, and any of the factors that affect that particular type of cancer are the best type of threat management for cancer survivors. Every day, new developments in fighting the disease show that certain types of cells work in certain, somewhat predictable ways. As doctors learn more, they also learn ways to cut the cancer off from what feeds it. Just as you want to move a stalker away from his victim, to neutralize his ability to cause harm, doctors take cancer treatments to new levels every day — by starving tumors here or by empowering the immune system there.

But where does that leave cancer patients? Still battered by the stalking, still fearful of the future?Victims of stalkers often have difficulty living normal lives because they spend so much time and energy trying to survive, just like cancer patients — it’s often a matter of knowing when you can safely poke your head out of your hidey-hole. But it’s more than that. Those who have, over time, had their lives disrupted again and again, had to pick up and move once more when their stalkers located them, never really fully trust in anyone or anything. You always hold back a little part of yourself because you expect that disappointment to arrive on your doorstep once again, almost always when you least expect it. Stalkers love to terrify their victims, so they look for the chance to pop up out of the blue. Living with that stress over decades is tough. You never ever completely let your guard down. You never ever really get used to believing that life can be good. “It was good once, and it’s okay now,” becomes the new normal.

But in accepting how things have changed, in taking it one step at a time, and most of all, in having the right kinds of resources to identify real-time threats, victims become empowered and stalkers will, over time, lose their power to terrify. Even when you know in the back of your mind that there could be another incident, another blow, you’re already thinking of what you can do to deal with it, to get past it. That’s the strategy that a lot of victims use once they really come to terms with their predators. “I refuse to give you power over my life, my emotions, my heart. I will not live in fear anymore. I am willing to do what it takes to keep myself safe.”

For cancer patients, the knowledge that cancer can, and might, recur is often overwhelming. It’s hard to live with the maybes, the uncertainty, the possibilities. How do you manage it? How do you plan for it? Should you even consider it?

Take a lesson from victims of stalkers. Don’t isolate yourself. Running away is a dangerous strategy, because your stalker will hunt you down. If you have fled, you have probably cut yourself off from your best support network, those people who will look after you and fight for you. The bigger your team, the better your chances of reducing your risk of injury or worse.

Instead, surround yourself with people who are knowledgeable about your situation. Don’t be afraid to immerse yourself in the learning. Talk to other cancer survivors and learn what they know about the disease. Think of it as a self-defense strategy. If you’re going to kick cancer’s ass, do it right. Don’t raise a little finger when your assailant comes at you with a big stick, grab a crow bar and cripple him. Let him see you are not intimidated or weak in his presence. Toss the creep to the curb.

So many times, victims of isolated incidents think it’s just a one-time thing, so they never bother to learn how to look out for themselves. Lightning doesn’t strike twice, right? But when you have a stalker, that’s an ongoing threat, one that isn’t going to stop until the stalker is permanently neutralized in his tracks. Being vigilant doesn’t mean you’re always terrified. The more you learn about cancer, especially your type of cancer, the more you can understand its weaknesses, its needs, and even its goals. Some kinds of tumors consume hormones to live and starving them of the hormones can prevent new occurrences. But there are side effects, aren’t there? The tumor needs that same estrogen that you need to function well, and in preventing the cancer from receiving it, you suffer, too. How do you balance that?

Every day, new ways to fight cancer, to hold it back, to knock it down, are becoming available. What we knew last year is less than we know now. What we know now is less than we will know next year. By keeping up with information that can make a difference, by learning to recognize new symptoms as they sneak in, cancer survivors have a better chance of managing their disease in meaningful ways.

Just as you need to be vigilant in recognizing new signs that your stalker has resumed his bad behavior, whether you notice new scratches on your door lock or you find things have been moved in your car, those are signs you don’t ignore if you’ve been a victim. Every long-time Stage 4 cancer patient I ever met had one thing in common. They all were proactive in dealing with new symptoms and they were willing to fight hard to survive. Those “I can do this” muscles were developed over the years of battling their unseen, seemingly unknowable foe. The harder they fought, the more they learned about cancer’s cunning, and once they learned, they got busy.

Many times, cancer survivors want to turn their backs on the disease once it’s under control. And so often, their families and friends want them to move on. That “let’s just forget about it and act like it never happened” mindset is what often puts cancer survivors at greater risk. Tackling the potential threat is as important as taking your chemo drugs, being zapped with radiation, or even going under the knife to cut the cancer out of you. It’s your new “survival mode”.

Long ago, when cancer happened and options were few, people didn’t have to live with cancer as a stalker. Death was often swift and cruel, and time fleeting. By the time a patient was diagnosed, there might only be weeks or months. But now? Now the possibilities for survival and cure are better than ever, and growing every day. That requires a new way of thinking about cancer management. It’s imperative that you recognize your stalker, assess the threat posed, and handle the aftermath of a cancer diagnosis effectively. You want to direct yourself to act, not to react, and you best do that by understanding what is out there.

Anyone who has ever dealt with a stalker over time has to come to a decision: “Do I live my life as normally as possible, take advantage of the opportunities, and stay out in the open, vulnerable to attack, or do I hide myself away, in the hope that I might survive a little longer? Do I survive or do I thrive? Do I embrace life or embrace fear?”

True inner strength comes from understanding fear and uncertainty and taking steps to manage its impact on our lives. It’s the choice to sit it out or dance. Music lovers know how hard it is to not feel the rhythm, to sit still when the tune beckons. What is life without song? As the Irving Berlin song said, there may be trouble ahead, and the fidlers may flee when the going gets tough, but while we have moonlight, music, love, and romance, we should embrace the opportunities to dance. Don’t ever let cancer take that away from you.

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cancer cancer caregiver caregiver education caregiver psychology

Can’t Make a Real Difference for Cancer Families? Go Wait in the Truck — Part Three

I recently turned down an opportunity to be a guest on a cancer show. I had my reasons for doing that. So many cancer families feel alienated and alone, abandoned in their time of greatest need. I believe we can and should do a better job of helping those with cancer and the people who love them to connect. We do that by addressing the real issues. There’s no magic pill that will make things better for cancer families, but with real caregiver education and a concerted effort, I do believe we can bridge the gap for patients and their families. If cancer patients are now living longer, those lives can and should be filled with meaning that rises above the ugliness of the disease and its determination to destroy the body.

Sometimes it seems that everywhere you look on the Internet and beyond, you hear the word “cancer” bandied about — it’s pink, it’s popular, it’s presumptive. Not all people who utter that word have the same depth of understanding about how it truly impacts lives. When you see families struggle over the years as a loved one goes in and out of cancer treatment, you begin to understand how critical education is to a cancer caregiver. A good cancer caregiver is always one step ahead of the disease, aware that things can go bad at any time.

I’ve talked to a number of people who have had repeated bouts of the disease, and the one image that stays with me, the one real truth I take to heart is this — you have a far better shot at staying around and enjoying your life if you don’t keep yourself stuck in denial. Cancer is cancer, especially when it’s in the genes. That means cancer could come back at some point, even ten years down the road. When you know this as a cancer patient, it usually changes how you live your life. You change your decision-making processes to factor that in. You may even change your outlook on what you want to accomplish and how you want to get it done. Cancer caregivers must understand the changed reality of their loved ones — it’s more than just the physical effects of the cancer. It’s also the mental, emotional, and sometimes even spiritual impact that alters a cancer patient’s world, one that needs to be appreciated for what it is — the sometimes dreaded “new” normal. How can we help cancer patients feel as safe and secure as possible under these circumstances? That’s what real comfort care is.

Here are the questions I intended to tackle on that show. I hope that by the time you finish reading the answers, I will have challenged you to think about cancer caregiving in a new way, to see a new path or a new direction in which you can take that care and improve life for your loved ones.

1. Do different types of cancer require different kinds of caregiving?

Absolutely. For someone who is able to physically function independently, your job may require being there as an emotional supporter. For someone with issues such as chemo brain or who has brain cancer, you may be dealing with mental processing issues, such as confusion, lack of focus, inability to concentrate, or even loss of critical memories. That can have a huge impact on your loved one’s personality. Patients with lung cancer might feel like they are suffocating slowly, which will create tremendous anxiety if the physical symptoms aren’t well-managed. And for patients with “intimate cancers”, such as breast, cervical, ovarian, colon, and prostate, there are often complications that result from our loved ones’ new perceptions of themselves and even our own changing perceptions. Scars can be found on the body, but more often inside — in the heart and mind. Those unaddressed worries, fears, angers, and sorrows will do as much, if not more, damage to the relationship between cancer patient and caregiver as will the actual physical results of the cancer treatment.

A cancer caregiver actually needs some training to do the job effectively. We don’t let health care professionals work with patients until they have had training and certification, but somehow it’s expected that cancer patients will receive adequate care outside the hospital setting, by virtue of having a caregiver, usually a family member, minister to his or her needs. You don’t expect your general practitioner to set a compound fracture — you want a specialist to do this, someone who handles these types of breaks on a regular basis and can recognize when things aren’t right. Cancer caregivers need ongoing training as cancer warrants it. If a loved one’s cancer is caught in the early stages and the prognosis is good, that individual isn’t going to need much from the caregiver. On the other hand, when the cancer is found at a later stage, is aggressive in nature, or is complicated by other health issues, such as heart disease, diabetes, or affects independence, the cancer caregiver really needs to know the “what next”. Without it, you have two miserable people guessing at what might work, what could work, instead of implementing successful strategies that keep them headed in the same direction. That’s why caregivers need to understand the type of cancer involved and the most common complications and issues.

2. What’s the difference between a serial caregiver and a progressive caregiver when it comes to cancer?

A serial caregiver is someone who has to step in when a loved one’s health is challenged and step back when things shift back to the point where independence is realistically viable. It’s important to understand what kind of help is needed, to meet the real problems. Serial care is hard to plan for, because a cancer patient may experience a sudden down turn in treatment, or there might be a complication when the immune system is compromised. It’s up, it’s down, it’s up again….This can create problems for both the cancer patient, especially if he or she is still working, and the caregiver. If you know ahead of time that this might happen, you can develop your strategy as a caregiver. You can build your resources list, build your caregiver team, know who you can call on for what and when. That means actually being mindful of your potential issues, whether it’s emergency child and/or pet care, home maintenance, volunteers to spot you for respite time, or even who can drop off that gallon of double chocolate fudge ice cream you know is the only thing your loved one craves after chemo. A serial caregiver has to transition to the realization that having a caregiver team, a cadre of helpers to call upon, creates better options for everyone.

With a progressive illness, caregivers must be aware of the fact that over time, a loved one’s health will go into decline, eventually resulting in death. It’s important to plan ahead, to engage mindfully in activities that will make that journey as meaningful and positive as possible. Too often, when people hear the words “terminal”, they assume that life ends right there and then. We all will someday die. We should recognize the potential in having a chance to live knowing that our time is limited. A good progressive caregiver handles the heavy lifting in gentle, kind ways. “What would you like me to do about this? What should we do with that?” Very often, for terminally ill patients, the greatest challenge is overcoming the fear of death and dying. Many people fret away the hours. But sometimes knowing that it’s okay to talk things through, having a good listener really wanting to know the answers, a cancer patient can open up about what’s on his or her mind, and that’s when a caregiver has the chance to make good things happen. We all have a “Bucket List” in us. A good progressive caregiver starts ticking those items off, one by one, by finding ways to enable the cancer patient to continue living life out loud right up to the end.

Serial caregivers get the job done while still living their own lives in their “off-time”. You still maintain your social life, your interests, your activities, but you might pause them when your loved one needs care. That’s not an easy thing to do when your loved one is terminal and there’s no cure possible. As a progressive caregiver, you have to mentally shift your focus away from your own life to the needs of your loved one as the disease changes everything. You don’t want to skip the important things in life because there isn’t any “do over” once a loved one is gone. It takes real effort to focus on the knowledge that your days as a caregiver will end when your loved one dies. That reality can actually free a caregiver to put his or her own life on hold, for a year or more, with the realization that at some point, it will be time to begin a new life.

3. Do cancer patients with “intimate” cancers (such as breast, ovarian, cervical) have a greater need for peer support?

Honestly? I don’t know how we can expect them to cope without that kind of support. Unless you are a cancer survivor yourself, you need to let your loved one mix and mingle with other cancer survivors who have dealt with these specific symptoms and complications. There are many people out there who have been there and seen first hand how it changes one’s life. Very often, “intimate” cancers affect more than just one’s body image, especially if there has been serious surgery and scarring. It can be tremendously reassuring to have a mentor help you navigate the healing process. You benefit from the wisdom of knowing someone else faced these same problems and made it through. You need to know, as a cancer patient, that there are ways to work around the obstacles.

But sometimes cancer caregivers are a little reluctant to share their loved ones with peer supporters. There can be an over-developed sense of responsibility, that “…it’s my job to provide what my loved one needs!” Caregivers should never be the only one to give that care. In hospitals and medical centers, no single physician ever provides all the care. Health care professionals with varying levels of expertise and skills come and go in the patient relationship. Cancer caregivers don’t need to feel threatened by the idea that other people can make their loved ones feel better. It’s part of the whole-person healing process. Some cancer patients feel like such a burden, they hold back their true emotions from loved ones. We all need to vent our feelings to the point we can recognize what’s real and what’s not, so we can get to a healthy place. When cancer patients are free to share with others, it often helps them find that perspective. When they are stuck with a single caregiver, the result can be isolating.

Equally important, caregivers affected by their loved ones’ intimate cancers need to get peer support as well. It’s important to understand how to shift gears emotionally and to recognize that as tough as it is for you, it’s tougher for the cancer patient. By finding ways to alleviate your own pain and distress about the cancer, you’ll be in a far better position to really help your loved one. Talking to caregivers who have successfully navigated these mine fields can be tremendously empowering.

4. How does guilt get in the way for healthy cancer caregivers?

It’s survivor’s guilt that gets in the way most often. We feel bad that our loved ones are suffering, so we try the “misery loves company” strategy. If we suffer alongside our loved ones, they will know how much we care, won’t they? Cancer patients often feel guilty enough, and when they see their loved ones declining, it’s just an added weight on their shoulders.

Sometimes cancer patients can feel left out and resentful when they can’t participate in normal activities that their caregivers enjoy. When I left for respite time, I often took my camera with me into the woods or up the mountain. I shot photos of interesting things I thought my mother, the nature lover, would appreciate. She got to see them when I returned home. For her, it mattered that I was still thinking of her when I was out in the “real world”, even as she was stuck in her recliner. She got to see what I experienced, even as she knew she didn’t have the strength to make the trip herself. Sometimes it’s reassuring to know that caregivers aren’t “escaping” when they take respite time. If you need to “get away”, it can trigger panic in a cancer patient that you want to abandon him or her. There’s a difference between healthy respite activities, that leave you feeling refreshed and reinvigorated, and that desire to jump ship. We caregivers all have our moments of feeling like fleeing. That’s why you need your own support team, to talk you through it, to help you find solutions for that sense of being stuck. As much as caregivers feel their own lives are curtailed, it’s nothing compared to what cancer patients can experience.

Caregivers need to recognize that there are still ways to help cancer patients feel better, even if they can’t be made better by medicine. How many times have cancer patients been asked, “How are you feeling?” So often, the answer is, “Not so great.” Some people want to know. Some don’t. And some people just can’t cope with sick people. That’s where the isolation begins for many cancer patients — when the reality of cancer is that you just feel crummy. A friend was devastated by the obvious change in a cancer patient she knew. She didn’t know what to say. Do you ask? Do you ignore? A wise counselor told her this: say “I am so happy to see you.” Those words can and do ring true for a cancer patient. It says, “Regardless of what’s going on with your cancer at this moment in time, I am glad you are here.” In the end, all anyone really wants is to feel connected to genuine warmth and affection, isn’t it? That way, it doesn’t matter how a cancer patient looks or feels. What matters most is that the cancer patient still has people who care.

5. Why is communication between cancer patient and caregiver a critical tool in maintaining quality of life for both?

If a cancer patient can’t be honest with a caregiver, how will he or she get the right kind of help for what’s ailing the body, the mind, the heart, or the spirit? Some people just don’t handle a loved one’s cancer well. When a caregiver is so emotionally overwhelmed by his or her own perceptions and misperceptions about cancer, or there is a long troubled history between the two, that cancer patient is going to experience a lot of frustration in not being able to effectively communicate his or her real needs.

Some of the most successful relationships I’ve seen between cancer patients and their caregivers are the result of the caregivers “getting” their loved ones. When you feel understood as a cancer patient, when you can voice your fears, frustrations, or even anger to someone who is genuinely looking to find ways to make you more comfortable, you begin to develop trust for your caregiver. Caregivers really have to have thick skin sometimes. You can’t take the things your loved one is saying to heart, or feel wounded. It’s important to recognize when emotions are talking, and help your loved one work through them. Sometimes you have to step back and let a cancer peer step in. Sometimes you have to let your loved one vent without trying to “fix” it all. Very often, cancer patients need to become aware of their fears, and they do that by blurting things out in the heat of the moment. When the dust settles, the real issues begin to surface. And then there are those times when you really need to be honest with your loved one, to admit you don’t have all the answers, but you’re committed to finding what will work. It’s important that your loved one believes your efforts are genuine, even as you seek the appropriate answers.

6. Why do caregivers need to know what comes next for their loved one in terms of prognosis and options?

If you have no clue, you can be completely broadsided. I liken the need to know to storm preparedness. If you know there’s a chance that a hurricane can hit the coast, you can board up the windows, sandbag the perimeter, and get your food and water supplies ahead of time. You can get a generator, learn how to use it properly, and even plan an evacuation route should the storm turn more dangerous. We all can agree that’s a sensible course of action in the face of the potential for such a weather event. So, too, should we do this for cancer patients. It’s not that you are predicting a turn for the worst for a loved one. It’s that you’re educating yourself as a caregiver to the potential. You’re getting prepared. That means that if you begin to see signs that pressure is building up, you can act.

A number of cancer patients have told me that they fear every time they think they’re seeing changes in their bodies. Is that a new lump? Is that pain in the ribs now bone cancer? Is the forgetfulness an indication that cancer spread to the brain? Every day, cancer patients have to cope with new or existing fears about the disease. A cancer caregiver who is prepared can start to poke and prod information from the cancer patient, can be the supportive listener who says, “Let’s get it checked out.” And a really good cancer caregiver never poo-poos anything that a cancer patients says. We need to accept what our loved ones are telling us, even when we don’t want to think the cancer has spread. It’s important to recognize that when new symptoms seem to arise, very often these issues are just normal body changes. But for those few occasions they are something more sinister, we need to encourage our loved ones to act.

Every long-time cancer survivor I have ever met has one behavior in common with the other survivors. They all are proactive in treating the cancer. Some get to the point where they can actually recognize the tiniest of changes and they get right on it. We need to realize that being aware, as scary as it might be, usually gives our loved ones the best shot at not only having a longer life, but a better life. It’s not just about surviving with cancer. It’s about thriving with it.

7. Why is palliative care not just about death and dying, and how can it help cancer patients to survive and thrive?

I wish we could change the name from palliative care to comfort care. Palliative care has somehow become synonymous with death and dying. The reality is that pain management, symptom management is all about keeping cancer patients as comfortable as possible. It actually has been shown to lengthen life, rather than shorten it. Some cancer patients get treatment aimed at cure right up to the day they die. They spend all of their time getting whacked by chemotherapy, radiation, anything that will provide them with a potential cure. Patients and caregivers benefit from a reality check. If the cancer has spread, if there are new symptoms, sometimes it’s okay to switch from focusing on a cure to focusing on comfort. For some cancer patients who are at the point where there are no new miracles, enrolling in clinical trials and trying untested drugs may be a viable option. If a patient gets palliative care to handle the difficulties, it’s easier to partake in that opportunity. That’s a decision that every cancer patient needs to make by being fully informed about the status of his or her cancer. As terrible as that sounds, sometimes really good things can come of it. I’ve met cancer patients who were diagnosed as Stage 4, still alive more than five years later. By being as painfree and healthy as possible, these patients can better tolerate new treatments that offer the promise and hope of disease management, if not cure.

Palliative care is all about easing the distress a patient experiences, whether it’s physical, mental, or emotional. Managing nausea means food can be better ingested and digested. Dealing with nasty side effects, relieving the discomfort, can actually enable a cancer patient to better survive treatment. And sometimes cancer patients really need help to handle the anxiety of cancer. An agitated patient is less likely to comply with medications and nutritional needs. Some patients may be so depressed, they may assume death is so inevitable, they give up before the cancer treatment has had time to work. For them, getting that emotional roller coaster on a slower, less terrifying track, can mean the difference between trying to survive and abandoning all hope.

We should always strive, as cancer caregivers, to err on the side of being human. We should ask ourselves about how much we know of our loved ones, how they best function, what matters to them. Our goal is to enable them to be true to their real selves through the cancer experience, and how we get there is important. We should never just give lip service to cancer patients. Our words should matter. But even more important, our actions should speak volumes. Every move we make should send the message that we stand with those we love and we are willing to go the distance to get them the right kind of care that will make the most difference for them.

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cancer cancer caregiver caregiver education mind/body Reiki survivor's guilt vibrational healing

Can’t Make a Difference for Cancer Families? Go Wait in the Truck! (Part Two)

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.

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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.

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cancer cancer caregiver caregiver education

Can’t Make a Real Difference for Cancer Families? Go Wait in the Truck! (Part One)

I got my fanny kicked today, and not by just anyone. No, it was by an expert interviewer. And I wasn’t even being interviewed at the time. I was doing the prep for a guest spot on a talk show. The way things look at the moment, it doesn’t look like I will be sitting in that hot seat.

I am a caregiver educator. My goal is to make a difference in the lives of people who need care and family members who provide it. I’m looking to fix the disconnects, so that everyone wins. The topic of the expected interview was cancer caregiving. It’s a subject that means a lot to me for many reasons. I’m always focused on making sure that cancer survivors get what they need as much as cancer caregivers. So much of what goes on after a loved one gets a cancer diagnosis is driven by the emotional impact on life. How can we make it better between cancer patient and caregiver? What can we do to bridge the gap, so cancer patients feel less lonely? Is there anything more heartbreaking than the losses, not only of the physical body to the disease, but the overwhelming sense of emotional isolation? How many cancer patients walk through life wounded? And how many caregivers feel helpless and frustrated, unable to find the right words to say, the right things to do?

I can see how the interviewer got off-track in our exchanged emails. She focused on one thing and ran with it, in the opposite direction from where I was headed. When I shared my talking points, I had a list of subjects that I am well-versed in. But she made up her mind as to what she wanted and it wasn’t what I had in mind. This wasn’t going to be a win-win situation. You see, this isn’t a cooperative relationship. It’s her job to set the perimeters and not my job to comment.

I gave her the benefit of the doubt, suggesting there was a miscommunication between us. That was an opportunity for her to scale it back a bit, to recognize that she wasn’t making her point effectively. After all, I’ve never been invited to be a guest on a show, only to be told later that it might be best to invite another guest to “help” with it. To help with what? Why? To me, that’s like being uninvited to a party.

The interviewer stated that she has never faced this problem with other guests. Apparently there are almost three hundred contented individuals in the last year alone and just one little, old, disgruntled me. I seem to be the only one who’s ever questioned her approach.

And then, to really drive home the point, she wanted me to know that she was just trying to put together a good show. I guess she’s telling me that I didn’t appreciate her hard work. Once more, my bad. Shame on me for taking umbrage with her efforts. I guess that makes me very difficult to work with and definitely unreasonable. How else can you explain it?

The irony? She still doesn’t see the problem, but I do. This is about effective communications. This is about really listening. This is about perceptions. You see, I’m at the point in my life where I expect to engage in a dialogue that goes back and forth. If I’m going to take an hour out of my life to have a conversation, I don’t want to talk at someone. I want to talk with someone. I want to be on the same page. I don’t want to feel like I’m on the short end of the stick, any more than I want to put someone in that position. We’re talking about cancer. I’ve seen the devastation — the broken relationships, the injured spirits.

From where she sits, I’m sure most people are thrilled to be guests on her show. That may be why they are okay with her style of conversation. I can even see that she might feel I am totally out in left field because I had the audacity to question her judgment. But from where I’m standing, I see an interviewer who is so focused on her own show, the guests are just the backdrop for her version of cancer life. It’s all packaged. This isn’t about educating people or sharing. This is a commercial enterprise. And that’s something I find a lot in the cancer world. Everyone’s out to make a buck off cancer families. This one has books. That one is selling a program. Bottom line? It’s really all about sales and marketing.

If you’ve ever really sat down with cancer survivors who have felt like strangers in a strange land, or with cancer caregivers who were baffled about how to make things better for the people they love, it’s nearly impossible to be casual about the subject. Every time I have a genuine conversation with a cancer survivor or a cancer caregiver, I am humbled. I am always hungry to learn more. Cancer isn’t a business enterprise, a money-maker, a means to a financial end. Most of the media people I know whose lives have been touched by cancer find it very hard to just play the game. They might do it when it comes to sports or politics or daily living, but the Big C is still the Big C. It matters that we get it right.

Every time I reach out to cancer families, I am mindful that there is so much more we can do, should do, to improve the quality of life for everyone. I want to get it right. I don’t want to talk for the sake of talking about cancer. I want to talk because Harry in Daytona Beach is feeling blue and wishes he knew what he could do to make a positive change. I want to talk because there is something I can say to make Mary in Philly feel a little less alone. I don’t ever want to waste the time of cancer families. But then, I know how important time is when it comes to this disease.

Am I overly sensitive? Probably. Could I have handled the miscommunication better? Probably. But I still think I hit the nail on the head on this one. When an interviewer goes plowing through guests like Grant took Richmond, it’s less about quality and more about quantity. When the script is written without any interest in having a real dialogue about cancer’s impact on families, count me out. I may be an idiot for handling things this way. Time will surely tell. But this is my passion. Life should be better for cancer families and I am committed to making that happen. If I can’t do that, I should shut up and go wait in the truck.

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cancer caregiver caregiver education chemo brain chemotherapy Ellen A. Walker The Scientist Magazine

Getting Past Chemo Brain

I’m a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded “chemo brain” by helping our loved ones in gentle, respectful ways.

This article, by Ellen A. Walker in the April 1, 2013 issue of The Scientist, is the basis of my blog post. If you have a loved one who struggles to remember things, check it out:

“After Chemo”

I trained as a teacher, so I understand that not all students process information in the same way. I often saw students struggle to learn what came easily to other classmates and peers. It’s part of the reason why I always made an effort to gear my approach to the specific student. By understanding how a student perceived information, I was better able to figure out ways to connect that student to the information I wanted to impart.

Why does that matter? My mother had chemo brain after being treated for lung cancer. Oddly enough, she also had ADD. It runs in my family, and although I don’t have it, I made an effort to understand what it is and how to help someone overcome it. Patterning the brain to overcome deficits can help build connectors and connections, can bypass what isn’t working. The human brain is an amazing thing, especially when you look for ways to overcome the obstacles. In the years of being a family caregiver, I had devised strategies to help my mother cope with all the simple things that she couldn’t remember due to the ADD. But with chemo brain? Wow. She was devastated. Why?

She had an amazing mind when it came to language skills. Verbal and expressive, she might not have been able to focus on concrete issues, but she had been a writer for decades, a voracious reader, and a talented Scrabble player, who didn’t like shortcuts or cheating. With chemotherapy, all that seemed to fly out the window.

Even as those cognitive issues began to rear their ugly heads, I was looking for ways to reduce the emotional blows she endured because of the chemotherapy. We moved from competitive Scrabble to cooperative Scrabble. I refused to compete with her, insisting that it was more important for her to get the words than it was to get the points. I would give her little prompts, trying hard to encourage her to push herself a little more to come up with possible solutions. I even nudged her to think of more than one solution. I wanted her to have options that would allow her to realize, to recognize, that there were points according to the value of the letter tiles.

In other words, I wanted her to have the chance to relearn how to play the game, and in doing so, I wanted to return to her some of the verbal skills she lost after chemotherapy. Did I succeed?

I’d like to tell you that my mother went back to being her old self eventually, but that’s not quite true. She never did seem to fully recover her ability to read for any length of time. The joy of reading slowly slipped away from her. Part of that could have been due to the progression of her cancer.

But I can tell you that those Scrabble sessions actually made a difference. What is my proof? Time and time again we played the game, on a regular basis, a regular schedule. Slowly, but surely, my mother began to recognize the value of the letters and to recall the potential words. It took hours of sitting and staring at the board. I believe that’s part of the recovery process. The human brain needs to see, to rebuild the connections in the brain, or even to bypass the old connectors for new ones.

Would that same type of brain patterning have helped her with her reading skills? I can only wonder. But I can tell you that she was pleased as punch the first time she found herself a 50-pointer on that Scrabble board, without any prompting from me. It was her success, her win, her climb up the mountain, back to what she was before chemo brain challenged her life.

If you’re a family caregiver for a cancer patient challenged by chemo brain, consider finding gentle, respectful ways to encourage your loved one to “relearn” what once came easy. Focus on the fact that chemo brain is a very real side effect from many types of chemotherapy drugs. Expect that there will be times you might have to prompt your loved one to remember. Don’t nag. Don’t take over your loved one’s mental life. Think of yourself as a train conductor. You want your loved one to get from point A to point B. Call out the stations as they pass by. Remind your loved one what he or she is seeing and where he or she is seeing it. Give a heads up at each juncture. When you do this, you are assisting your loved one to reconnect, to stay in the game of life, to regain what was lost.

Always remind yourself that a cancer survivor with chemo brain is not a child. Never speak down to your loved one. Never say things like, “Listen this time!” or “You have a mind like a sieve! Why can’t you remember this stuff?” Think of chemo brain this way. Your loved one’s brain is like a castle, filled with rooms. The chemotherapy has gone through that wonderful palace and not only shut off the lights, but locked the doors. Recovering from chemo brain requires that each door is not only unlocked, but the light switches have to be turned back on. That takes time and effort. Some parts of the brain may be less affected by the chemo therapy than others. Take a mental inventory and build on it. What is your loved one still good at? What can he or she still do without as much prompting? When you identify those skills, work with them. They will help your loved one recover more quickly, because everyone needs to experience success on a regular basis. It’s what encourages us to take challenges that we believe we can tackle effectively. We are drawn to light and repelled by darkness. When you identify things your loved one can still do well, find the associated activities that offer some struggles, and work on those skills. Those are the connectors in the brain that will eventually lead to the darkest regions. If you focus on the darkness, if you only see what the failures are, you will miss the opportunity to light the lights. Strength comes from success, from what is functioning. Weakness comes from darkness, what is failing. Point yourself in the direction of helping your loved one use his or her strengths to adapt to weaknesses.

Above all, believe in your loved one. Don’t assume that every change in mental acuity is permanent. Don’t be afraid to put up notes, to put things in writing, to place reminders. There will be times that your loved one may get frustrated or feel “stupid”. Make a point of reminding him or her that chemo brain is real and not the result of laziness or disinterest.

One thing I did learn from watching my mother struggle with the cancer and the cancer treatment? It’s a lot of extra work above and beyond living life. It can be exhausting to juggle the side effects and the emotions of cancer. Cancer caregivers need to understand the wide range of issues. When you educate yourself, you are better able to reach out to your loved one. You don’t want to make your loved one dependent on you because of chemo brain. You want to empower him or her. Offering effective prompts and encouraging your loved one to get back to living can actually help overcome many of the temporary effects of the powerful drugs. When you focus on helping your loved one regain those mental skills, that’s the best kind of caregiving.

A note — Ellen Walker’s article in The Scientist was brought to my attention by Robyn Stoller, who tweets as @cancerHAWK, and she got it from Bruce Shriver, who tweets as @Bruce_S. My thanks to both of them.

For more help as a family caregiver, visit The Practical Caregiver Guides