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cancer treatment family caregiver family reunion

Don’t Give Cancer the Power to Stop the Family Reunion

It started some eighty years ago at the shore. A family got together for summer fun when they rented a cottage. Over time, the parents built a home with a big backyard, where everyone gathered. Children grew up. Some married and had kids of their own, and eventually even grandkids. Some didn’t. Some changed jobs and moved around. Some kept the same jobs over the years and put down roots. Summers drew everyone back together for cookouts in the backyard at the fireplace built by cousins, stone by stone.

My earliest memories of my grandparents, aunts, uncles, and cousins are all there. To this day, that scent of raspberry, mingled with confectioner’s sugar on powdered jelly donuts evokes the heartfelt warmth of happy family gatherings, thanks to the uncle who used to bring a brown box from the bakery every time he joined us on a summer weekend. There were group walks to the point, ice cream cones with sprinkles, lots of laughter, and relatives galore. This was the one place we all saw each other, our common ground in a rapidly changing world.

In later years, as the original cousins got on with their lives and people moved again and again, we no longer saw each other regularly. That all changed when Uncle James turned 75. His family planned a big birthday bash and invited everyone to come. What a wonderful day that was. There might have been a little sprinkle or two of rain, but I remember pine trees and people, and above all else, laughter.

The following year, my mother suggested we all gather again, this time at my parents’ home, for a reunion. This became the annual family gathering. For more than thirty years, the relatives have come to swap stories and share food.

When my mother had a heart attack several years ago, it was a shock. Despite all the previous visits to the pulmonologist for treatment of the increasing breathing difficulties, no actual diagnosis was made. That nagging shadow on her scan that signaled there was something ugly growing on the horizon, but what was it? That something was lung cancer, thanks to that genetic glitch that seems to run in the family.

My mother was devastated that over the course of several years, her cancer grew unchecked. As is the case with many cancer patients in similar straits, she was angry that it wasn’t discovered until it was inoperable. Chemotherapy, radiation, and supplemental oxygen extended her life. And with that time, she was determined to continue the tradition of the family reunion.

By then, I was my mother’s full-time caregiver, while my father continued to work. I took her to and from her medical appointments, coordinated her medications and therapies, and most of all, took on the task of helping her to live as full a life as was possible under the circumstances.

One of her most adamant wishes was that the family reunion continue. It was no small task. In a normal year, it takes me approximately forty hours over a month or so to get everything ready for the relatives — the equivalent of a full work week. As a caregiver, I had to squeeze those hours into my already challenging schedule, one that included constant trips to the hospital and medical emergencies. My mother insisted on knowing every detail of the reunion plan, determined to be involved with every decision that needed to be made, from the RSVP tally to the number of hamburgers and hot dogs we would need to feed the crowd to the coffee we would serve with dessert. She insisted on hanging onto the shopping cart and perusing the aisles of stores to gather items for the party, even as her energy flagged and her oxygen tank needed changing.

Some caregivers might have insisted on taking over, pushing the cancer patient aside, in order to get the job done quickly and efficiently. After all, when you are already caring full-time for a loved one, there’s little time for anything else. But it’s important to understand the devastating impact of cancer on “normal life”. Those chores, errands, and tasks most of us hate can sometimes be the perfect therapy for cancer patients who are terrified of what is to come. That great uncertainty that comes with a cancer diagnosis is hard for the mind to overcome; the more a cancer patient is able to stay in the game, the better.

For my mother, it was important to let her still be in charge, even through the fog of cancer treatment. After all, she and my father had invited the family to gather in their yard for more than twenty years at that point. It was their “baby”, their way of celebrating the extended family. The big question was how to make that happen even during cancer treatment.

I once had a profound conversation with a cancer friend/survivor/advocate that brought that point home to me. She said her siblings began to count her out of family discussions about the future because they didn’t believe she had one. Imagine how that makes a cancer patient undergoing treatment feel. It’s like the kiss of death. You’re already assuming the fat lady has sung her last aria. (By the way, that very same cancer friend/survivor/advocate is still going strong, still smart, and still more than ready to set the record straight. I’m so glad I know her.)

Another very valuable lesson I learned from my mother was that even the simple act of making decisions about the reunion kept her feeling positive that she still had something to give to the world. She could still bring people together to celebrate what matters in life — the family. For someone whose health is precarious, the sense of weakness and helplessness can be offset by positive successes. For my mother, the reunion proved to be an achievement of which she was proud, a joint effort with my father.

Just pause for a moment and think about this. She was in active cancer treatment. She was easily fatigued and vulnerable to hideous side effects. Most people would think that the best course of action would be to avoid the stress of the reunion, to pull the drapes and shut the door. After all, it’s too much for a cancer patient to handle, isn’t it?

To this day, I still remember my mother sitting on the patio, watching the reunion tent go up. She wore one of the many chemo caps I made for her, her oxygen tank at her side, and in those moments, she was delighted by what she saw. Tables and chairs came out of the barn and went under the big top. Tablecloths were spread out and paper plates, cups, and plastic forks, spoons, and knives were set down. My father made his usual run to the ice house for huge blocks of ice for the soda, beer, and meat coolers.

Chemotherapy can be a real beast, but my mother worked with her oncologist to make sure that her treatment allowed her to be as functional as possible. They scheduled her medication so that she would be at her best on the day the extended family arrived. Unfortunately, she was laid low with a sudden bout of intestinal upset that first year with lung cancer. Much of the day was spent in bed. I checked on her frequently as the guests mingled outside. Far from being distraught, my mother was surprisingly calm and content. Even as she felt “crummy” physically, she was happy that she managed to make one more reunion happen. To her, that was her crowning achievement, something she shared with my father. In this day and age of separate lives, they brought us all together for a day, to remember our roots.

On that second reunion after her lung cancer diagnosis, my mother was feeling much better. I still can see her sitting on the patio, with people gathered around her. Still tethered to her oxygen tank, she had a ball catching up with everyone. Despite the fact that she couldn’t walk far, the constant stream of people coming and going, pulling up a chair, put her right back in the action. For that moment, cancer took a back seat. Mama was once again in charge of her own life and there was much laughter.

We occasionally forget over time what family means to us. We stop discovering and rediscovering ourselves and each other. We presume to know what other people are thinking and feeling and don’t bother to ask. Family reunions are an opportunity to connect and reconnect with relatives we may only see once a year. For that one day, when we take advantage of the moments, we can recall those who are no longer with us, not by forgetting, but by remembering. We can watch children grow into adults. We can put aside opposing politics and philosophies to find what we have in common. On that one day, we’re all people united by the generations that came before us.

Even now, my father still looks forward to bringing the family together for that one day a year. He still spends hours tending to the yard and the pool in anticipation of the relatives’ arrival. He doesn’t do it to be a super star. He does it because he remembers what he got out of those days with his own parents, siblings, and cousins at the shore so long ago. He does it because he remembers those people no longer with us. It’s his way of preserving family.

Someone recently suggested we end the tradition. Thirty years is long enough. It’s time to move on. Not all of us feel that way. There are still those among us who want to honor that legacy my mother and father gave to us, the chance to get together for one day out of the year and remember we are connected. Time passes. People pass. But one thing we should never lose sight of is the power of family. Don’t let cancer steal that from you and your loved ones. Work around the obstacles and come together, with hearts that seek laughter and love. While the storm clouds accumulate on the horizon, gather under the canopy of the family tent and celebrate what is here and now, because the memories you form today are the treasures you keep in your heart tomorrow, come what may.

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breast cancer cancer treatment Marie Curie Cancer Center Light Up a Life pain management palliative care the elderly UK

How Could She Die of Cancer Without Anyone Knowing?

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago — a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer’s day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn’t find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

“This is a very special gift
That you can never see
The reason it’s so special is
It’s just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It’s filled with Love inside”

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn’t feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months — nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient’s complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It’s a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn’t feel right and that sense grows over time, demand to know — Could it be cancer?

Many times, the symptoms don’t show up until it’s too late for cure, but that doesn’t mean it’s too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn’t get better. Could it be cancer?

And if it is, don’t stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don’t stand on the sidelines and hope for the best. Don’t wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?

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brain cancer cancer management cancer treatment Dancing with the Stars leptomeningeal carcinomatosis Valerie Harper

Brain Cancer or Not, Valerie Harper Has Got Happy Feet

Let me start by saying I’m not normally a fan of “Dancing with the Stars”. Frankly, I don’t particularly like watching folks trip their way across the stage in belly-button exposing outfits (male and female), shimmying unlike your sister Kate, with lots of hair extensions, makeup that’s been troweled onto faces (male and female), and a whole lot of attitude. Give me Ginger Rogers and Fred Astaire in an old Hollywood flick any day. And yet….

I heard Valerie Harper was going to be on. At first, I thought it was a mistake. Wasn’t she in the process of dying from terminal brain cancer? But then I heard it again. This woman was going to dance on the show.

Was it going to be sad? I considered what I had observed in other brain cancer patients. For some, balance was an issue. For others, changes in personality. And that wasn’t even including the fatigue factor….

The anticipation was killing me. Long a fan of both the old “Mary Tyler Moore Show” and “Rhoda”, I’ve always enjoyed Ms. Harper’s acting — her comedic timing is impeccable. Nobody delivers a line like she does. Ba-ding ba-dang!

Then someone mentioned her age. Seventy-four. Say what? Didn’t Cloris Leachman dance years ago on the same show? God love her, the fellow alumnus of “The Mary Tyler Moore Show” huffed and puffed her way through some very challenging dance moves, but in the end, the eighty-two-year-old didn’t have the finesse necessary. What could we possibly expect from Ms. Harper, a seventy-four-year-old brain cancer survivor?

Know what? Valerie Harper was amazing, especially compared to some of the other contestants. She knows how to move on the floor. Obviously, she’s had some experience and real training. When she got done with her foxtrot, I thought, “Isn’t it a shame that she gets that ‘cancer’ label?”

She should be applauded for dancing that well in her seventies. She should be applauded for dancing that well with brain cancer. But both? What a show-off! Okay, I’m kidding, but think about it. She was good no matter how way you look at her, as a cancer patient or not.

What does that say to cancer patients everywhere? It really is never over until the fat lady sings, and she was nowhere near Ms. Harper during her dance. Every day, patients are gaining ground when it comes to managing cancer over time. Sometimes it’s just a matter of staying the course, making it through the tough days. That’s why it’s so important that cancer patients maintain good nutritional intake, because cancer drugs can be so rough on the system, and losing too much weight or being unable to eat can turn the tide. In a published interview, Ms. Harper’s husband explained how she managed to continue her medication while appearing on the show. It’s all about knowing when the “up” time and “down” time is for cancer patients and scheduling activities around these.

I have no idea what will happen as the dancing series continues. From what I saw the other night, she seemed to be in the running, well ahead of some other folks. Pity vote? Hardly. She earned each one of those points. It had nothing to do with her cancer, or her age either. Sometimes people get to succeed without having that cancer label as a constant in-your-face reminder, and boy, are those moments sweet! Whatever the result, Ms. Harper is a winner in my book. She’s earned respect for being herself — likable, active, living in the moment with joy and determination. I wish her all the best for the future — sunny days, blue skies, and happy feet to carry her over the rough terrain that is cancer management. You go, girl!

For help with cancer caregiving, visit The Practical Caregiver Guides

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cancer caregiver cancer treatment caregiver education caregiver psychology Caring Bridge My Life Line Post Hope What Matters Now

How Can You Keep the Hope Alive During the Dark Days?

Cancer caregivers have a tough job, especially when things aren’t going well for a loved one. How do you make empty promises to someone who is clearly struggling to get through the pain and frustration of cancer care? The truth is you don’t.

One of the hardest lessons for any cancer caregiver to learn is that you don’t lie about life. For many cancer patients already frustrated and feeling betrayed by the disease, pretending that everything is hunky-dory is just the final straw on that camel’s back. It’s enough to send a cancer patient into the bluest of funks. So, what can you do?

Sometimes, when the elephant in the room is squeezing everyone against the wall, it’s best to change your focus. Instead of looking at what cancer is doing to your loved one, instead of feeling every ache and pain that cancer is causing — be it physical, mental, or emotional, it’s time to take a step back and look at something else. What is that something?

Your loved one still has dreams, wishes, and goals. He or she may have hit a temporary rough patch or is at a more critical stage in the disease, but don’t let the disease define your loved one.

Hope is more than just a wish that a loved one is cured. As humans, we don’t have that kind of power — it’s out of our hands. Hope is that little seed in each of us that love is greater than the sum of our parts. We need to constantly nurture hope in meaningful, realistic ways, not as some giant magical force that creates miracles, but as the human means to achieve little milestones that keep us going.

Focus on three things.

1. Comfort — not fake smiles and cheerful claims that everything is going to be okay. Get busy with palliative practices that improve how your loved one feels. If your loved one needs pain medication, oxygen, or better nutrition for the body, make that happen. When you do this, you send a very strong message that you are there for the long haul, and you are going to get busy doing what needs to be done. No empty promises from you — you’re on the job and you’re staying on top of things. For someone going through cancer, that can be so reassuring. The more comfortable your loved one is, physically, mentally, and emotionally, the better he or she will do, no matter what the circumstances. You may not be able to cure cancer or the side effects of cancer treatment, but you can and should provide comfort measures that make life better.

Build bridges between how the cancer affects your loved one now and what life was like before cancer. The better connected your loved one feels to his or her true self and the way things used to be, the less impact that cancer will have on quality of life. It’s a lot easier to remain hopeful when you find some successes that remind you of what life was like before cancer reared its ugly head.

Chemo brain a problem? Try chair-side notes, a message board, a calendar, and electronic reminders to help your loved one stay on task and avoid the embarrassment and frustration of forgetting. Make dictionaries available for crossword puzzle affectionadoes, suspend the rules and score keeping on games like Scrabble while you work together to find possible words, and provide tools such as calculators or financial software for checkbook balancing and money matters. Gently encourage memory to return while assisting with the (hopefully) temporary mental deficits, using tools and organization. Remember that the nervous system often gets battered during cancer treatment — never chide your loved one for forgetting something. Most of all, realize that many medication errors occur when a loved one is impaired by the effects of chemotherapy and stress. When you can negate as much of the difficulties of cancer with supportive measures, you are actually helping your loved one to remain hopeful that life is still worth living.

2. Caring — I’m not talking about your feelings, cancer caregiver. When your loved one is struggling, it’s not about you. Find out what hurts. Find out the options for fixing that. Sometimes the grief, the fears, and the uncertainty of cancer make our loved ones hurt more than the disease itself. Be sure to be a good listener for your loved one. Get to the heart of the problem, whether it’s pain, frustration, depression, or even concern for the future. When you listen to your loved one and hear what’s really troubling him or her, you’ll be able to show you care by taking steps to make positive changes. That’s empowering.

Sometimes the big problems can appear to be insurmountable, but if you tackle those little ones, it all becomes more manageable. Medications, side effects, new symptoms, and the great unknowns cause tremendous stress for cancer survivors, and that stress can actually bring life to a screeching halt. Break the problems down one at a time. Chip away at them. Consider there may be more than one option to address each one. When you lead your loved one to possible solutions and you show you are committed to meeting these challenges head on, you inspire hope in you and your loved one by demonstrating how much you care.

Whenever you’re overwhelmed with your own emotions, take it outside. Step away to do your crying. Do not share all that grief with your loved one. No cancer survivor needs the guilt or frustration of knowing that his or her disease is causing you misery. He or she is already over-challenged. Find caregiver buddies as your sounding board, in person, on the phone, or even via email and instant messages. Join a support group or reach out to other people who have been touched by cancer and ask for advice in coping. You probably already know people who have been cancer caregivers. Most of us understand the pain and we want to support you because we’ve experienced it first-hand. Ask us.

And if you find yourself sinking in quicksand, consider seeing a health psychologist, someone trained in helping families cope with serious medical issues. Some caregivers avoid talking to professionals, thinking they’ll be told to quit their caregiving because they’re so overwhelmed. A wise health psychologist can help you navigate through your need to provide care, the emotional entanglements that result from the difficulties you experience when having to provide it, and help you find ways to manage that care better.

3. Communicate — Understand and appreciate that you’re just one person. You should never be “It” for your loved one, especially if you’re physically, mentally, and emotionally up against the wall. Create a support team of people who can fill in the blanks, big and small. Don’t cut yourself off from the outside world. Give people the chance to do for you and don’t feel guilty that you need that help. Caring folks want to participate, to be there with you. You’ll have the opportunity down the road to give back.

Consider having a caregiver blog that allows you to share what’s going on with friends and family. here are just a few organizations that offer free websites and blogs to families during medical crises.

Having a private opportunity to inform people who care about what’s going on means that you and your loved one are not alone. You can receive messages, photos, and offers of support in ways that you can utilize, even when you feel stuck at home.

Best of all? When you keep family and friends involved in your loved one’s situation, they have the opportunity to share with you how much they really care. Even though you may find your fair weather friends all but evaporate during your loved one’s cancer treatment and management, you will find those gold and silver folks who offer encouragement, inspiration, and love to get you and your loved one through the dark days. Knowing that people are thinking of you as you struggle is important. It’s too easy to fall under the wheels of the cancer bus and feel like a victim when you’re cut off from the rest of the world. Even when things aren’t going well for your loved one, having people invested in both of you reminds you that love helps heal all wounds, because it encourages us to believe there can and will be brighter days ahead. That’s what hope does for cancer families.

For more help with cancer caregiving, visit The Practical Caregiver Guides

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cancer bloggers cancer treatment Cancer Treatment Centers of America CTCA Blogger Summit

What Did I Get Out of the Cancer Treatment Centers of America Bloggers’ Summit?

Warm, sunny Arizona

I arrived home from Arizona at the Cinderella hour, having schlepped my overloaded carry-on bag through three airports in one day. You would have thought I was exhausted, wouldn’t you? Instead, I was still fired up — about the information I gained throughout the Cancer Treatment Centers of America Blogger Summit and the chance to speak with fellow cancer bloggers. As a cancer caregiver who believes strongly in education, I was already committed to helping cancer caregivers provide better care to their loved ones. Now I’m determined to do it even better!

One thing is clear to me after speaking with the participants. We need more education, more resources, more information about how to survive and thrive with cancer. We need the whole cancer community to come together and share — the newest treatment options, the clinical trials, the latest physical and occupational therapies, the best nutritional practices, and every little tidbit of hope we can find. That’s where we will find the strength and courage to get through this toughest opponent of health and well being.

Cancer Treatment Centers of America posted many of the speaking events on their Livestream site. You can watch them for yourself and get some perspective:

Cancer Treatment Centers of America Bloggers’ Summit 2013

New England’s winter chill — brr!

Maybe it’s because I’m back in winter mode, no longer soothed by the warmth and sunshine of the medical center’s campus, but I can look out on the horizon here and find the parable. As individuals trying to reach out to those who can benefit, we are but a few whispers in the winter wind. But when we join together to raise our voices, we become a choir that rises above the chilly landscape of cancer. We can and should raise all hearts and minds to focus on getting this done. We can provide the warmth of human contact and courage by reaching out. Uniting with other people who are determined to spread The Word about Cancer (there’s a great name for a cancer community!) is a powerful thing. We aren’t folks who are interested in our own glory or making a name for ourselves as individuals. We are people who want to advocate because we believe we can and will make a difference.



Matt Zachary, Professional Musician and CEO of Stupid Cancer, playing one of his own compositions at the summit

We know the why of this — people need the best information and education in order to fight the disease in a meaningful way that preserves quality of life. That’s a big part of the reason for the CTCA Bloggers Summit — we all sat down together to brainstorm for answers. But how do we get these things? When do we get these things? And more importantly, where do we find them and who provides them? Clearly, social media and the Internet are technology tools that we can harness to provide them, and the various conferences, such as the Stupid Cancer OMG Young Adult Cancer Summit, can make a difference. But we need more — we need the real research into what helps cancer patients to stay in the game and go from sprinters to marathoners. We need to know what practices, medical and supportive, improve patient outcomes. And we need that information to be available to people everywhere — not hidden behind a tree or locked in a secure vault somewhere. It should be out there and accessible to anyone with digital connections.



Bloggers Brian Simpson, Catherine Blotner, Lockey Maisonneuve, and Mailet Lopez

One thing that struck me as I had the chance to network with other cancer bloggers who are cancer survivors is that they come in all shapes, sizes, ages and stages of cancer survival. Many had multiple occurrances over many years. That’s a lot of experience between them. The cancer survivors I met were prepared to have a real and honest dialogue with CTCA team about it, because they want to go the distance. They weren’t shy about voicing their vision. Overwhelmingly, they share one thing — a passion for helping others overcome better than they did.


Rob Harris bellies up to the popular smoothie bar
 

My fellow caregiver attendees and I can also bring something important to the table in partnership. As much as it matters that cancer patients network with survivors, families with a loved one in cancer treatment or management need to understand the issues and how they affect the whole person and the whole family. Nothing saddens me more than to hear about cancer patients feeling abandoned and alone. The better able family members are to understand and appreciate what cancer does to a human being, the more likely they will be to offer the right kind of support to their loved ones.



Alicia Staley in the Arizona CTCA’s lobby

We are on the cusp of the New Dawn in cancer treatment and management. Cancer survivors today are a new breed, and long-term management of symptoms, side effects, and stress is critical to being as healthy as possible.  In the next few weeks, I will introduce you to some very impressive people on the front lines of this people-powered movement. I think you’ll enjoy learning what they have to share with you.



The writing is on the wall — real messages from real cancer families at CTCA’s Arizona center

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

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advanced breast cancer breast cancer cancer caregiver cancer treatment Cancer Treatment Centers of America CTCA CTCA Blogger Summit Goodyear AZ service dogs Western Regional Medical Center

Cancer Treatment Centers of America Honors Service Dog Pee Dee

I admit it. I’m a people watcher. I like to get the feel of a place by observing the comings and goings of people. At the moment, I’m at the Cancer Treatment Centers of America Bloggers’ Summit at the Western Regional Medical Center in Goodyear, Arizona. During a break in the many presentations involving cancer technologies, I stepped out into the lobby, sat down, and just watched the passing parade. I wasn’t expecting pooches in service “uniforms”.

I had already found the two fish tanks flanking a big fireplace on my first visit. Fish gotta swim and they do here. The bright colors attract the eye and draw you in. I always like to see signs of life in a hospital, and that was a positive impression of the Western Regional Medical Center in my book.

 

But yesterday, on my second day here, I saw something I never thought I would see — a retirement party for a dog. Pee Dee, the chocolate lab, was hanging up his hat as a service dog at the hospital.

All the other dogs were there for the party, some frisky and tail-wagging, others gently awaiting your approach. It was a nice bunch of pups, and it was clear from the reactions of the people passing by that these dogs were well-loved, by patients, by family members, by staff.

I watched all the hands come out to greet the dogs. Some people stopped and bent down to say hi. Others gave an affectionate pat or a little scratch behind the ear in passing. The ladies who accompanied the service dogs were cheerful and kind, too. It gave the lobby of the hospital a friendly feel. This is no cold, sterile medical environment. And all that was before the party started.

It was held outside, in the courtyard, a space filled with barbecue grills and benches, just off the sports area, where a putting green awaits. (The current LPGA champs have nothing to fear — it took about 50 shots to make my only hole-in-one of the day….) There was cake, a small ceremony, and lots of chuckles and cheers for Pee Dee.

Why do I write about a retirement party for a service dog? That’s what you get at the Cancer Treatment Centers of America facility here in the Arizona desert. People who stop for ten minutes to thank a pup who has cheered patients through the cancer treatment process. It’s about connecting to life, to the little things we can and should celebrate together. Warm hands, warm hearts help cancer patients get through the challenges of cancer treatment, but they also get the staff through, too.

That’s why I like to just sit sometimes and observe, especially when I’m in a new place. I don’t want people to tell me what it’s like to be there. I want to see it for myself. I want to watch what patients and family members do, to see their reactions to a place. Are they comfortable or miserable? You can see cancer patients in the garden, sitting at tables in the shade, enjoying the day, or wheeled out in their wheelchairs by loved ones. This doesn’t feel like a hospital, even though I know it is. It’s a place where patients can take a break and get outside on a pleasant day — Arizona has a lot of those at this time of the year. It’s a place where even a dog like Pee Dee gets his due.

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cancer caregiver cancer treatment Cancer Treatment Centers of America caregiver education CTCA Blogger Summit

Cancer Treatment Centers of America — When Opportunity Knocks

I’m a big believer in taking chances when the risks seem reasonable and the odds are in my favor. I’m not much of a gambler. I don’t play the slots or cards, especially not for cash that should go to pay bills. But I also believe that when opportunity knocks, it’s okay to answer the door, even if you check the peep hole first. That’s why, when Cancer Treatment Centers of America asked me to their Blogger Summit, I agreed to go.

I’ll admit it. I’m very curious about what CTCA does differently. I’ve looked at the website several times now, but I’m still not sure what to expect.

Cancer Treatment Centers of America

Most patients travel for treatment. The regional centers have accommodations for patients and family. They also have things like laughter therapy, a hospital garden, a very impressive nutrition team, and so many other things that I believe can be therapeutic for cancer patients and their families.

What does CTCA do for family caregivers? That’s what I want to know. I have a theory that if you educate a family caregiver to take care of a patient with the best information and support, if you give that person the physical guidance and support he or she needs to help a loved one get through cancer treatment, there’s a far greater chance that the patient will comply with medications, nutritional intake, pain management, and stress reduction. But it’s more than just a bunch of social workers and nurses giving lectures in a hospital setting. It’s networking, hooking experienced caregivers up with newbies, offering insight and inspiration for everyday life. It’s a cup of coffee and a shoulder to cry on. It’s someone who understands that it’s frustrating not to be able to get everything done on a to-do list because there are so many priorities and everyday issues get kicked to the curb.

Every time I’ve checked on this hospital or that hospital, it seems like the caregiver education just isn’t available. There might be little meetings here and there, but no real concerted effort to hook caregivers up in a  meaningful way that makes a real difference. You can talk about stress reduction all you want, but in a business that provides paid services, many health care providers would rather collect fees for fixing you than preventing you from breaking down in the first place, and that’s a shame, because many caregivers burn out too soon. Maybe CTCA is different. Maybe they have a structure that supports a caregiver outside the hospital setting. We’ll see. If they don’t, maybe they’re open to starting one.

What most medical people don’t understand about family caregiving is that it’s really not about medicine. It’s about people. What does it take to help another human being survive under difficult circumstances? How do you manage a household while helping a loved one undergo some of the most rigorous medical procedures available? Most family caregivers learn through the School of Hard Knocks, when mistakes are made. The longer you’re a caregiver, the more opportunities you’ve had to learn. Me? I should have a PhD. in caregiving. Lord knows I’ve seen my share of challenges. But I also believe that caregiving can be and should be taught.

If I could make one thing happen for family caregivers taking care of cancer patients it would be this — a study to determine if caregiver education can actually reduce mistakes and improve cancer patient outcome. I’m not talking about some touchy-feely, “gee-aren’t-we-swell” kind of study. I want to know if the right caregiver education can actually improve survival rates. Can we prevent unnecessary suffering and medical complications by teaching family caregivers to help manage care at home?

Sound crazy? Well, think of it this way. The greatest problem for most cancer patients isn’t that the cancer sneaks up on them overnight and steals their lives. It’s getting through the long haul. And to do that takes good medicine, good support, and good caregiving over time. Rome wasn’t built in a day, and cancer isn’t cured instantly. There’s no magic wand.

I’ve heard so many family caregivers say they were terrified, didn’t know what to do, didn’t know where to turn for answers — not for the medical issues, because most health care providers are good at helping with that. No, what I hear most from family caregivers is they didn’t know how to get it all done — the “living with cancer” part of things.

Living with cancer is more than just those trips for treatment or the instructions on how to apply lotion to radiation burns. It’s about understanding what disease does to a person, to a family, changing the dynamics in so many ways. Up until that diagnosis of cancer, life seems simple, and after those words are spoken, it’s forever changed. That’s because you often feel you’re living in the shadows until those scans show no more evidence of the disease. Borrowed time and uncertainty seem to become the norm for many cancer families, and it’s really tough to cope with that on a daily basis for any length of time. If you’re not used to running and you suddenly enter a marathon, you will fail on so many levels and put yourself at serious risk. Training matters.

So, how does CTCA reach out to family caregivers in a meaningful way, above and beyond holding hands and commiserating with them? What education do they offer in terms of helping family caregivers organize daily life around cancer treatment and balance family needs, so that the cancer is not the focal point of every conversation?

Maybe this is an opportunity for me to spread the word about caregiver education and the benefits of really supporting the families. I believe that family caregivers actually have the ability, with the right training, to not only advocate for their loved ones, but to be the eyes and ears for the treatment team, but only if they understand that responsibility. In order to do that, family caregivers have to pay attention to the physical signs they see and they have to be able to communicate effectively with the health care providers. If I’m right, that cancer survival can be improved by educating family caregivers, it will be because patients and their families feel confident that it makes a difference to take a proactive stance when it comes to cancer. A good part of the resistance to that approach is always the fear that families have that it’s too late, the cancer’s too strong. If CTCA accepts patients who are motivated to fight a survivable cancer, and those patients have cancer caregivers with real tools to help them get through it, maybe this is a part of the new cancer treatment horizon, that survival depends on what’s done for the whole person, and the better the resources, the better the outcome. I’m looking forward to finding the answers.

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

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cancer specialist cancer treatment caregiver education Dr. Robert E. Bristow gynecologic oncology National Comprehensive Cancer Network ovarian cancer

The Right Treatment for Ovarian Cancer Can Save Lives

Cancer caregivers, if your loved one has ovarian cancer, there is something you need to know, something that could save your loved one’s life. A new study presented to the Society of Gynecologic Oncology reportedly determined that most women diagnosed with ovarian cancer are not receiving treatments that could extend their lives by a year or more.

The reason? These women put themselves in the hands of physicians without enough experience to treat the disease effectively.

The most effective treatment for ovarian cancer is very complex. It involves surgery, called complete debulking, to remove all evidence of the cancer, and this sometimes includes other organs. The reason for this is to enable the intensive chemotherapy the best chance to succeed in eradicated any remaining cancer cells.

What should women who receive a diagnosis of ovarian cancer know? It matters who provides the treatment and what that treatment is. According to the study, one reason for treatment failure was that the many women were operated on by general surgeons or gynecologists, rather than by gynecologic oncologists. Very often, gynecologists and general surgeons practiced conservative surgery, only removing a portion of the diseased tissue. According to the study, led by Dr. Robert E. Bristow of the University of California at Irvine, more than 80% of the women were treated by doctors who lacked the expertise of gynecologic oncologists.

In general, a surgeon who performs less than ten of these surgeries a year is less likely to stick to the guidelines set by the National Comprehensive Cancer Network, which  recommends specific protocols for ovarian cancer treatment, according to each stage of the disease.

Ovarian cancer is reportedly a disease that is less likely to spread, through the lymph nodes and bloodstream, to other organs in the body. This means that a woman who receives the right treatment has a far better prognosis, not just to gain an extra year or two, but to survive and manage the disease.

Cancer caregivers should always be proactive in helping a loved one understand treatment options and that sometimes means asking the hard questions, especially when it can affect a loved one’s quality of life. How often does the specific physician treat this type of cancer? How often does the medical center treat these patients? What is the survival rate for these patients?

Many patients can and do travel to receive the right cancer treatment, especially for complicated cases. This is one situation in which you can actually provide your loved one with a better chance to survive, so it pays to do your homework. Don’t just accept the idea that the first doctor to set eyes on your loved one is the right care provider. Don’t rush into treatment because fear drives the bus. Educate yourself. Do the research. Understand what the National Comprehensive Cancer Network recommends for standard treatment of your loved one’s cancer. Check out their website:

National Comprehensive Cancer Network

They have a great section on patient resources, providing information on everything from clinical trials to NCCN cancer centers near you. Be proactive for your loved ones, cancer caregivers!

For more help with your caregiving, visit The Practical Caregiver Guides

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cancer caregiver cancer perception cancer treatment Lilly Oncology Initiative PACE study

What Does the PACE Study Tell Us About Cancer?

In an earlier posting, I gave a pop quiz on the results of the PACE study, an effort to determine how people feel about cancer and cancer treatment in Germany, Italy, France, the UK, Japan, and the US. You can find the information on the study here:

The PACE Cancer Perception Study

Having given you a chance to see for yourself whether or not you have a true understanding of public perception about cancer, let’s consider the implications for cancer families.

What’s the most interesting thing about the findings? The majority of people surveyed for the study believe it takes too long for new cancer medicines to reach patients and they think more money should be spent on cancer research and cancer treatment. That speaks to the frustrations of many who feel that promise of improvement is so close, putting those cancer treatments in the hands of those who most need them can make a difference. If we weren’t seeing real results hovering over the horizon, would we be so hopeful? Twenty years ago, so many people perished because the treatments for cancer were far less successful and sometimes the treatment was even harsher on the body and spirit than the disease itself. Now we can feel it coming, that next great discovery, and we want to be a part of it. We want to catch that wave and ride it all the way to a cure.

Which country had the most people with an optimistic view of cancer management? The United States. Sixty-five percent of those asked said they didn’t view cancer as always having a fatal outcome. Why is that? Is it the fact that we have some amazing cancer centers that are constantly updating their cancer programs, keeping current with the latest developments? Is it that this particular group of Americans had more experience and knowledge of cancer survival? Hard to say. Maybe Americans are just normally more optimistic than people in other countries. That’s a question that might be answered by a follow-up study.

What is cancer? It’s not one disease, but rather a series of more than 200 diseases, which can have their origins in biologic, genetic, or environmental causes. Why is it important to know that? Not all cancers are the same. They won’t respond to the same treatments the same way. They won’t respond to the same medicines. Every time a patient is diagnosed with cancer, it’s imperative that the type of cancer and as much information on viable options is determined by the medical team. With so many different kinds of cancer, there’s no way cancer treatment is “one size fits all”.

At the moment, a mere 5% of cancer patients are enrolled in clinical trials. And yet, 70% of the PACE study respondents were interested in those trials. Why? Clinical trials offer that extra chance of survival. If there’s a new medicine that offers a better survival rate, wouldn’t any sane human being want to try it? What’s stopping them? The survey only dealt with the perceptions about cancer, so we still don’t know. Is it lack of opportunity? Are cancer centers reluctant to abandon drugs with known results, even if the results are less than satisfactory, in place of experimental treatments? I don’t have the answer to that.

Six out of ten people asked reported their belief that pharmaceutical companies are focused on treating cancer, rather than curing it. Why does the public believe that pharmaceutical companies are less interested in putting investment dollars into a cure? Part of that is that perception of how cancer treatment is handled. It’s a communications issue, a failure to explain how things happen in research. But don’t forget that with more than 200 different diseases that are lumped together as cancer, it’s easy to lose sight of the progress. For every step forward, it can feel like it’s taking too long to catch up. If cancer were a single disease, we would probably be far more confident in the efforts to battle it, because we’d be better able to assess the progress. But with so many different types of cancer, those little baby steps don’t seem to add up as quickly.

As for satisfaction in the war on cancer, six out of ten people expressed their approval on efforts to fight the disease. Is that just because six out of ten are normally optimistic people, or do they have a reason to hope? Do they know something the rest of the population doesn’t? In the survey, a group of cancer patients and cancer caregivers were interviewed, along with a larger group from the general population. The cancer patients and cancer caregivers made up a little more than one quarter of the whole group, and yet six out of ten people reported approval. Did the remainder of the people who answered positively have more experience with cancer than those who did not? Again, it’s a question for another study.

Why were Japanese participants in the survey less worried about the impact of the economic factors on the treatment of cancer? Was it because their economy hasn’t required cutbacks in spending for cancer treatment? Are the other five countries struggling more to fund health programs? Is cancer treatment in Japan well-funded? Are there lower cancer rates for the Japanese? Again, more questions that will have to be answered in a future study.

The French participants in the PACE survey reported the most satisfaction with the amount of money spent on cancer research in their country. Is that because of the actual amount of money put towards research, or is it the perception that the country is moving forward with the research? Is it the result of good public relations or good research? Yet another question that needs further study.

Is it surprising that nine people out of ten would be willing to share their medical records in order to help researchers and oncologists? That speaks to the heart of the perceptions of cancer patients, their families, and the general population. We understand that the more information our researchers and doctors have, the better the chances to survive the disease. We’re willing to cooperate to make that happen. Some people expressed concern that the data might be misused. That’s understandable, given the current climate of data collection. There are marketers and other entities that misuse the information for their own gain. Would it be misused by cancer researchers and doctors? Hard to say, but it speaks to the public’s need for strict guidelines to protect privacy.

PACE stand for Patient Access to Cancer care Excellence, and the PACE network is made up of a vast group of professionals involved in all aspects of cancer research, treatment and policy. The goal is to improve how we fight cancer globally. Will it work? Only time will tell. The more success we see in cancer treatment, the more our confidence will grow. And some of that confidence will come from the public outreach that makes us all aware of new medicines and treatments. The more we know, the more proactive we will be in fighting cancer. We will take advantage of the opportunities afforded us. That’s really the best chance to survive the disease, and surviving it brings each of us that much closer to a cure.

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cancer caregiver cancer perception cancer treatment Lilly Oncology Initiative PACE study

Take the Cancer Quiz on World Cancer Day

One of the things that often happens to me as a cancer blogger is that companies approach me about their latest offerings. My goal is to help cancer caregivers find ways to utilize education and information to help a loved one manage the disease.

Towards that end, I was approached by a representative of Lilly Oncology Initiative, as part of a public awareness campaign of cancer, cancer treatment, and what it all means in the bigger scheme of things. Called the PACE Study,  the conducted survey queried people in six countries (Germany, Italy, France the UK, Japan, and the US) to find out what the public believes about cancer, new oncology treatments, and the future for cancer patients. I want to share with you some of the highlights of that study in the form of a pop quiz, so put on your thinking cap and see what you really know about cancer perception around the globe:

1. When facing cancer, the country with the highest percentage of people who believe they can be helped by treatment is:
A. The UK
B. Japan
C. Germany
D. The US

2. Cancer is:
A. A single disease that can grow anywhere in the body and spread to other parts.
B. Ten types of malignant cells that can appear in specific organs and grow.
C. A contagious disease that is spread through poor sanitation and risky behavior.
D. A group of more than 200 diseases which are of biologic, genetic, and environmental origin.

3. Typically, only five percent of cancer patients participate in clinical drug trials. What is the percentage of people in the PACE study who think cancer patients should have greater access to these trials?
A. 70%
B. 52%
C. 21%
D. 8%

4. In the survey, 6 out of 10 have the perception that the goal of pharmaceutical companies is to:
A. cure cancer
B. treat cancer
C. medicate cancer patients
D. only develop drugs that are popular

5. How many people surveyed expressed satisfaction with the progress of cancer treatment over the last 20 years?
A. 82%
B. 60%
C. 47%
D. 35%

6. Which of the six countries surveyed had the fewest respondents concerned with current economic factors slowing down cancer research?
A. The US
B. The UK
C. Japan
D. Italy

7. Which country had the most survey respondents who were satisfied with the amount of money its country spent on cancer research?
A. Japan
B. France
C. The US
D. The UK

8. How many people surveyed would be willing to share their medical records in order to improve cancer research and treatment?
A. 90%
B. 65%
C. 42%
D. 18%

9. PACE stands for:
A. Pharmaceutical Action Committee Executives
B. Patients’ Act for Cancer Education
C. Patient Access to Cancer care Excellence
D. Pharmaceutical Association Cancer Education

10. PACE is:
A. a group of the top ten pharmaceutical companies working to develop medications for cancer patients
B. a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
C. a group of international oncologists, cancer support groups, and lobbyists seeking to improve access to cancer treatment
D. an organization of cancer advocates who want more research

THE ANSWERS ARE:

1. D. The US — 65% don’t feel that cancer is necessarily a death sentence any more. Many cancers are now better managed as a chronic disease, and some are even curable.

2. D. Cancer is a range of diseases that can be caused by a number of different kinds of factors.

3. A. 70% believe these trials should be more accessible.

4. B. Pharmaceutical companies are now working to educate the public on their research and development programs to find cures for the different types of cancer.

5. B. Six out of ten people surveyed expressed satisfaction with progress in fighting cancer.

6. C. Japan

7. B. France

8. A. Nine out of ten would be willing to share their medical records in an effort to improve cancer research and treatment, although some people expressed concern about how the data would be used.

9. C. Patient Access to Cancer care Excellence

10. B. The PACE network has a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.

Did you get all the answers correct? Perception is a very important issue in the fight against cancer. The more you know, the better able you will be to access information that can help you and your loved one manage this disease, the treatment for it, survive it, and thrive with it.

If you would like to know more about the PACE study, you can follow this link:

PACE Study on Cancer Perception