Author: sarambarton

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

Post author By sarambarton
Post date June 25, 2013

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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Dr. Deanna Attai Explains Preventive Breast Reconstruction

Post author By sarambarton
Post date May 21, 2013

If you didn’t read the New York Times article today on Angelina Jolie’s decision to have a preemptive double mastectomy because she has a history of cancer in her family and high risk of developing the disease, please do:

No Easy Choices on Breast Reconstruction

Written by Roni Caryn Rabin, it’s chockful of good information, thoughtful consideration of the issues involved in making the decision, and lots of wisdom offered by Dr. Deanna Attai.

I’ve never met Dr. Attai, but I was lucky enough to meet some of her friends a few months ago at the Cancer Treatment Centers of America Bloggers’ Summit out in Arizona. Alicia Staley and Jody Schoger are two-thirds of the brains behind the Monday night BCSM online chat. Dr. Attai is the other third.

For women facing breast cancer, BCSM (Breast Cancer Social Media) is a support group like no other. Imagine having other women who have been there and done that show you how to wear the tee shirt. You can follow the Twitter conversation, moderated by Alicia, Jody, and Dr. Deanna, at #BCSM Chat Monday nights at 9 PM.

You can also click on the group’s website link, www.bcsmcommunity.org.

Why am I telling you this? I don’t want you to just stop at the end of the New York Times article. If you’re facing this important decision, I want you to make the best, the smartest, the most informed decision you can about your future. Most of all, I want you to have resources and support, and that’s what the BCSM community offers. Don’t go it alone. Don’t just assume you have to do this or you have to do that. Every woman is different. Every cancer is different. It’s never one-size-fits-all.

One of the best pieces of advice Jody gave my readers in her interview with me was this:

“The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.”

“Jody Schoger Wants to Make a Difference….” Interview

Dr. Attai has guided so many women through the maze that is breast cancer. You can find her on YouTube, offering helpful information on video:
http://www.youtube.com/user/dattaimd?feature=watch

You can also find her website: http://www.drattai.com/

Facebook? She’s there, too, as Dr.DeannaAttai. At Twitter, she tweets as @DrAttai.

If you’re dealing with breast cancer and its related issues, be good to yourself. Join with others who have sailed those waters. Share your experiences, the lessons you learned, the wisdom you gained. For every time you felt that dark shadow cross your heart and felt that panic, know you are not alone. There are others who know that pain. By coming together with social media, Dr. Deanna, Jody, and Alicia created a wonderful resource center to fill a deep void in cancer treatment. Breast cancer is such an intimate and life-transforming disease, and it takes a lot to get through it. Improve your chances by gathering up what you need from women who understand how to pack that suitcase.

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Having Cancer Is Like Having a Stalker Stalk You

Post author By sarambarton
Post date May 3, 2013

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

Post author By sarambarton
Post date April 28, 2013

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.

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)

Post author By sarambarton
Post date April 26, 2013

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

Post author By sarambarton
Post date April 26, 2013

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.

breast cancer Debbie Woodbury Pathways Women's Cancer Teaching Project The Cancer Hope Network Where We Go Now

Debbie Woodbury Speaks to Breast Cancer Caregivers

Post author By sarambarton
Post date April 23, 2013

About Debbie Woodbury:

Maya Angelou said, “There is no greater agony than bearing an untold story inside you.” The healing power of sharing her story as a cancer survivor compelled Debbie Woodbury to found WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is also a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women’s Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer.

You can also find Debbie on Twitter and Facebook.

A note from Sara Barton, The Practical Caregiver:

One of the things I love most about what I do and what reinvigorates me time and again, is the chance to speak honestly and openly with people who have wisdom to share. I asked Debbie Woodbury, an experienced patient educator, if she would be interested in answering questions for my cancer blog. I wanted to tap into that fountain of expertise and help cancer caregivers understand the real issues involved with breast cancer. It’s too easy to think that caregiving is about changing bandages and driving a loved one to appointments. Healing is as much about the heart and mind as it is about the physical body. I think she speaks to that in a voice that is authentic and wise.

Sara:

Debbie, you’ve had the chance to interact with a number of women who have been diagnosed, and you’ve seen what they go through and how it affects their lives. What should family caregivers understand about the common difficulties faced by breast cancer survivors during treatment and even after treatment is over?

Debbie:

When you get a cancer diagnosis it usually comes as a shock. Many of us have never been sick before and are suddenly thrown into an unfathomable world of medical terminology and procedures. You are under constant threat, have no way to predict what will happen next, and are overwhelmed by all it takes just to survive each day. In a flash, you confront your mortality. It’s like being shipped off to war.

Up to this point, the patient and caregiver are usually united in their terror. I can’t imagine how hard it was for my husband to wait outside during my mastectomy and TRAM flap reconstructive surgery. Patients and caregivers often part ways, however, once they’re out of the fox hole of treatment. That’s usually the point where caregivers want to move on because they think “the worst is over.” This is a real source of disconnect between survivors and caregivers and survivors often feel guilty (and angry) about it.

Sara:

I think you’re right, that it’s a source of disconnect between survivors and caregivers. If anything, coming out of the fox hole is the time when the deep emotional impact of the whole experience is most likely to hit our loved ones, because the immediate physical crisis is receding. It’s really time to assess the overall situation and what it all means for the “new normal”. We tend to slap that “happy face” on everything and pretend life is hunky-dory, when it’s really not. I think cancer survivors can sometimes feel pressure to “soldier on”, when what they most need is to feel what they feel and process it. How else can you live with it? Families need to not stand in the way of all that.

I think sometimes, as caregivers, we’re so afraid of what our loved ones feel, we don’t want to really know, because we don’t have a Band-Aid big enough to cover that psychic wound. We have to get past our own sense of helplessness in order to do right by our loved ones. And we can’t naively hope that by focusing on the positive, we can somehow help our loved ones avoid the potential recurrence.

Breast cancer survivors seem to need more support than any one person can provide — why is it so important for survivors to share their wisdom, insight, and experience with each other?

Debbie:

I think the shock of a diagnosis, the burden of treatment, and the post-treatment disconnect between survivors and caregivers are common experiences of most, if not all, cancers. A breast cancer diagnosis heaps on an additional loss – the amputation of a very visible, “feminine” body part. Even with reconstruction, your body is permanently altered. This loss rocks many women to their core and it’s impossible not to be reminded of it every time you take off your clothes. It’s a lonely place to be, especially when family and friends want us to be over it.

We love our caregivers and watching them struggle with our disease is tremendously painful. That pain (and the guilt it can cause) can shut us down, lest we cause more pain. That’s why it’s virtually impossible to heal body image, sexuality, fear, and all the other emotional issues which arise without a support network of other survivors who “get it.” Sharing our stories validates our feelings and breaks through the loneliness of life beyond treatment. I call it the power of “Me too.”

Sara:

“The loneliness of life beyond treatment….” What a powerful phrase. But you’ve hit on an important point. I’m sure there are caregivers out there who feel that it’s just a matter of throwing more love at cancer survivors, as if that will make the pain fade away. The physical and emotional trauma of fighting the disease changes a person. I once heard a cancer survivor say she felt like she had been betrayed by her body when she was diagnosed with breast cancer. It seems like a matter of learning how to trust all over again, to believe that life can be okay, even with breast cancer. That’s not really something your family can do for you. It really does have to come from other survivors, helping you learn how to reemerge from your cancer cocoon.

How much do caregivers need to know about the specific details of what breast cancer survivors go through in order to better support the women they love and what are some positive ways to acquire that information?

Debbie:

The more caregivers know and understand the easier they make it for their loved ones. Of course, no one expects a caregiver to “get it” completely. That’s just not possible (just like it’s not possible for survivors to completely understand the caregiver experience.)

The best advice I can give a caregiver is to not assume cancer is “over” and to listen to and engage your survivor. I remember an especially poignant comment on WhereWeGoNow written by a husband of a breast cancer survivor. His wife asked him to read my post, Running on Empty – Coping with Cancer Stress. The post was important to her because reading it made her feel less alone. It also sparked a conversation between them and made him realize that “As a spouse, it is easy to focus on the physical aspects of dealing with this disease. After talking more with her and reading this post it is readily apparent that there is an on-going mental battle that will continue to wage with both good and bad days.”

Sara:

That really illustrates why it’s so important that caregivers learn as much as we can to help our loved ones. When we see life through their eyes, we can recognize opportunities to step up to the plate and give what our loved ones really need in terms of support. In what ways can caregivers prepare themselves to recognize important sign posts and milestones?

Debbie:

Just like the survivor, a caregiver should create his or her own support system. Find medical professionals, including therapists, who readily share information and offer support. Join caregiver support groups. Read blog posts written by cancer survivors, who are amazingly open and honest about their experiences. We heal physically and emotionally from a cancer diagnosis and treatment. The more information you collect, the better able you are to recognize the sign posts and milestones of that healing and give support. What is most important is for everyone, survivor and caregiver alike, to appreciate that what the survivor is going through emotionally is a normal part of healing.

Sara:

So true. And healing is very much a multi-layered process that takes place over time. It can feel like one step forward, two steps back, especially as survivors process their emotional experiences with the disease. I think sometimes cancer caregivers misunderstand what their loved ones are going through when they express anger or sadness at their losses. What are some positive things that caregivers can do to help breast cancer survivors feel less lonely and less isolated?

Debbie:

A few months after my mastectomy and reconstructive surgery my husband and I were invited to dinner with friends. I told him I didn’t want to go because I was tired of telling people I was fine when I wasn’t. Being a pretty straight-forward guy, he suggested I tell them the truth. The idea actually shocked me, because I was desperately trying to hold it all in, but it also made sense.

We went out to dinner, the inevitable question was asked, and I answered honestly. The reaction I got – empathy, concern and support – shocked me. Not because I didn’t expect it from good friends I knew to be wonderful people, but because I had been isolated for so long and didn’t feel safe sharing my feelings.

That discussion was a turning point for me. More than anything, I needed to know it was okay to be where I was and that I deserved support. As wives and mothers we are usually the emotional caregivers. A lot of us just aren’t comfortable asking for it for ourselves. A caregiver who makes us feel safe to express our feelings opens the door to communication and helps end our isolation.

The other thing caregivers can do is encourage their loved ones to create strong support networks. This is vitally important for two reasons. First, no survivor can effectively heal without the validation of others who understand and emphasize. Second, no caregiver should take on the task of being the sole source of support for a survivor. It’s an impossible job and bound to burden the relationship.

The bottom line is this: We are women and most women like to talk with other women about our lives. Now that cancer is a part of our lives, we need the sisterhood even more. As we share, cry, and even laugh, our load is lightened and that is the precious gift of support we give to each other.

Sara:

Your words have a powerful resonance, Debbie. I’m sure there are breast cancer survivors out there who needed to hear your message today. And I’m just as sure there are cancer caregivers who will take these words and find new ways, meaningful ways, to support the women they love. A good caregiver never stops trying to find what will bring true comfort to a loved one. As you said, we really need to let others into the caregiver circle. We should never feel left out of the process when our loved ones need to get support from other breast cancer survivors. It’s a matter of opening our eyes and our hearts to what is needed, regardless of who brings it to the table. That sisterhood of survivors provides some powerful medicine to women going through the healing process, and the more we encourage and support our loved ones honestly and effectively, the better life will be for everyone. Thank you so much for sharing this with us.

cancer chemo brain chemotherapy practical caregiver video youtube

“This Is Your Brain, This Is Your Brain on Chemo” — Video

Post author By sarambarton
Post date April 18, 2013

I wanted to figure out a way to put chemo brain into context for people going through cancer treatment. Some folks think it’s an imaginary thing, more psychological that physiological. The truth is that a number of chemo drugs (but not all) can affect the nervous system, and as such, they can affect the thought process. This YouTube video is my attempt to share some insight on how chemo brain can change a cancer patient’s life.

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

Getting Past Chemo Brain

Post author By sarambarton
Post date April 10, 2013

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

film critic movie reviews Roger Ebert Siskel and Ebert

Roger Ebert Never Steered Me Wrong

Post author By sarambarton
Post date April 5, 2013

I’m not going to talk about Roger Ebert’s long battle with cancer. I know it was brutal.

I’m not even going to talk about how he kept on working, right up to the end of his life. I know he was a prolific writer, offering his opinions on everything from his beloved films to his favorite sports teams. He even managed to master the social media that often fails me, all while fighting a tough foe.

All I want to say is that he never steered me wrong when it came to the movies. I can’t ever remember seeing a film that he loved and feeling like I needed to walk out. Other reviewers? Holy cow! But Roger was what I call a real movie lover’s reviewer. He wasn’t there to tell you how fabulous he was or what a genius he was at reviewing movies. His passion was the silver screen. Isn’t that what allowed him to stay for the dogs and be able to tell you why they stunk?

A good film reviewer understands why he or she really enjoyed or loathed a film. That same reviewer can pinpoint where the story falls apart or when it starts to tick all the boxes. Roger Ebert had the knack of finding the true heart of any movie and determining, for me, whether it was worth my ten bucks. Should I see it? Should I wait till it comes out on video/DVD? Major film? Minor film?

What I loved best were some of the quirky films on his lists. Foreign films. Wacky films. Wild films. He would say what he would and I could tell from his description whether I would actually enjoy it. Let’s face it. Anyone who watched that many movies in a single year had a much higher tolerance for a broad range of storylines than the average moviegoer. He just loved them — old classics, new classics, and everything in between.

I could make this a cancer tribute to a legend who shared his insights about what was appearing on the big screen, but I’ll be darned if I’m going to give a disease that kind of power over someone who refused to concede to it. I’m glad we had the years we had with Roger Ebert. I’m glad he shared his passion for film. Because of him, I went to the movies and laughed till my sides hurt, cried till my eyes were red, and was stirred by feelings I never knew I had in me. Thanks, Mr. Ebert. You will be missed.