Author: sarambarton

Some families take on cancer as a family issue. It becomes a crusade. Some friends will encircle one of their own and create a safe cocoon through which to survive the cancer. What happens when cancer returns? What happens when cancer spreads to another part of the body?

If I could give those who love a cancer patient one piece of advice, it would be this. You are supporters, not sufferers. Even though you may feel your heart is breaking, it’s not your body enduring the cancer treatment or the disease itself.

Why do you need to be aware of this? When you create a support team for someone who has cancer, you must remember this is not a sport. This isn’t a matter of trying hard enough or “if only”. Cancer is an unpredictable foe. A cancer patient can do everything right, can take every treatment available, follow every instruction, and take every precaution. In the end, it all comes down to how the disease affects each individual.

We love our sports teams and we can be fanatics in our cheering. That’s fine for healthy athletes who train and improve their performances with rigorous attention to human technology and sports performance guidance. But cancer is a disease, not an opponent. You can throw all your resources at it and it can still win. Is that failure?

Failure suggests that there is a measure of control over a situation and the performer just didn’t master it. In cancer, patients very often are fighting against all odds. The deck is stacked and the cards aren’t in their favor. For some, they don’t even find out they are playing until that trump card is dealt.

Are you unwittingly pressuring your loved one by the approach to support you make? What can you do to help your love one understand that he or she has your full support, come what may? How will he or she know that it’s not your loved one’s fault if the cancer returns or spreads?

What’s wrong with the truth? What’s wrong with saying what is in your heart and your head? “No matter what happens, I’m here for you. Rain, sleet, snow, drought, earthquake, tsunami….”

Well-meaning people sometimes rally around cancer patients and adopt their illness as a cause. We all want to end cancer. We all want those we love to thrive. But cancer patients are individuals, with hopes, dreams, fears, and sorrows. When everything you share with your loved one revolves around the cancer, when you push to keep your loved one focused on the goal of defeating the cancer, that’s pressure to be cured. Is that the message you really want to send?

What can you do to improve the support you give your loved one? Be realistic. You cannot wave a magic wand and make him or her better. Real support is created by seeing the obstacles and meeting them as best as possible under the circumstances limited by the cancer.

1. Encourage socialization —
Help your loved one feel connected to family and friends in ways that put aside cancer and concentrate on fun. Don’t put off the opportunities to bond. Understand what holds your loved one back and figure out reasonable solutions. Is it fatigue? Is it fear? Is it frustration?

2. Encourage good nutrition —
Cancer patients need to get through the rigors of cancer treatment and that’s not always easy. Find out what cancer center nutritionists suggest for reluctant eaters. Help your loved one find ways to get the calories without the stress. And for heaven’s sake, DON’T NAG! Nobody likes to be scolded, especially when you feel like something the cat dragged in.

3. Encourage organization —
It may seem strange to say that organization is important for cancer patients, but the stress of the disease and its subsequent treatment can often make it difficult for loved ones to focus. Providing structure and routine can help. Most chemotherapy patients experience predictable side effects, and if your loved one understands there will be good days and bad, he or she can maximize the activities on good days and minimize them for the days when it’s important to rest. Fatigue is a real issue and prevents some cancer patients from achieving their goals. It’s always a good idea to figure out ways he or she can conserve physical, mental, and emotional resources.

4. Encourage realization —
Cancer is a disease that can be unpredictable. A lot goes into a cancer treatment program for each patient. What does your loved one need to do to give himself or herself the best chance to survive? Patients need to keep themselves as healthy as possible under the circumstances. Physical health matters. Mental health matters. Emotional health matters. How does chemotherapy affect your loved one? How does the disease affect your loved one? How does the stress of having this disease affect your loved one? Help him or her to understand it’s a matter of doing the best you can with what you have. Find out what other cancer survivors do to thrive. Help your loved one use what works.

5. Encourage optimization —
Some people think that cancer treatment is only about showing up for treatment. It’s much, much more than that. Help your loved one to live each day as fully as possible. What are his or her short-term goals? What are things he or she wants to experience? Create a net of “positivity” around your loved one, highlighting what is successful in his or her life. If your loved one is worrying about what might happen, he or she won’t be able to enjoy the here and now. Tomorrow is promised to no one. Live today. Embrace it. Make the most of it. Appreciate it. Build on it.

Many cancer families focus all their attention on the big cure down the road. When you put all your energy into such an enormous project and it fails to meet your expectations, you can find yourself devastated. Focus on realistic steps along the way. Improve family life. Share more. Laugh more. Live more. Find little ways in everyday life to overcome the effects of cancer, and that will help your loved one live a good life despite the cancer. That’s really how you beat this disease.

Some people automatically assume that caregivers have a magical connection to their loved ones, that just the physical effort of providing care creates a bond between the two.

In reality, the intimacy between caregiver and loved one always needs effort. It’s too easy to focus on the physical needs of the cancer patient. Many caregivers get bogged down by the inter-related health issues that cancer management can create. There can be confusion and neurological dysfunction created by chemotherapy, leading to difficulty concentrating, short-term memory loss, neuropathy of hands and feet, and a number of other bothersome side effects. Radiation can create its own problems with the skin and the major organs. Even surgery can create long-lasting scarring and affect mobility and motion.

When you are caring for a cancer patient and he or she is not thriving, you’re often focused on finding ways to help the patient eat enough to sustain life, or worried about his or her immune system. So many big issues take center-stage in dramatic fashion, and slowly your loved one becomes less the person you know and love, and more the family project. This can create a barrier between caregiver and cancer patient that needs to be removed in order to resume a normal relationship. How do you do that?

What’s it like for cancer patients who need care? If you think about it, that’s a tremendously unbalancing position to be in, where everyone is so worried about you, your survival is almost more important than you are. Sometimes it can feel like you are invisible because all people see is the cancer in your body. That can create big walls between cancer patients and the people who love them.

How can family caregivers create a better sense of normalcy for cancer patients? It’s really quite simple. Make it real again for your loved one. In order to return to that intimacy you once shared, even temporarily, you need to balance that relationship. Put the Big C on hold for a couple of hours. Do something that doesn’t involve talking about, thinking about, or imagining that cancer. Let it be about who you both are as people.

— If you’re a parent, help your child play for a few hours. Have fun together and listen to that sweet sound of laughter. Remember what a joy it is to engage in games or to swing through the air or to build a tower together. Have an adventure with your child, even if you don’t leave his or her bed. Read a funny story or watch a silly movie together. Let your child run away with his or her imagination and take you along for the ride. Do something unexpected and enjoy your child’s surprised reaction. Sometimes caregivers get so wrapped up in being responsible, they steal the joy out of the air. Let loose for a little while and let your child see you are more than just a protective parent.

— If you’re a spouse, take your loved one on a special date and remember why you chose this person to marry. Put the romance back in the marriage in a meaningful way. Remember the days of courting, how you took your time to share thoughts and feelings, or even just to be together without pressure or worry or fear? Emotional intimacy is all about being able to be yourself with someone you truly love. Recapture that sense of innocence and genuine affection and companionship. Discover each other again.

— If you’re a child caring for a parent, make new moments to remember. If you can see your mother or father as a person, beyond the role of parent, if you discover what he or she was like as a child, you begin to see that there is more to this person than you have assumed. Explore what you don’t know of the past in meaningful ways. Awaken the sleeping treasures hiding in your parent and it will deepen your relationship. But it also does something more. It gives your parent a sense that he or she still has something to give you, something you can’t get anywhere else. Your parent with cancer may rely on you for caregiving, but you can rely on him or her for pearls of wisdom and family history.

— If you’re a friend or relative caring for a cancer patient, remember what he or she was like before cancer. Is this someone who helped you over the big obstacles in the road of life? Have the two of you shared other battles? Maybe you had a romance or marriage that went south. Maybe you had career-busting moments. You two have found other trolls under the bridge. Put the cancer in perspective. Sometimes the greatest gift a good friend or relative can give to a cancer patient is the opportunity to put the cancer away while you do lunch or go shopping or watch a big game. Sometimes the chance to be “normal” again is a real gift.

Cancer patients are often stuck at home thinking about their cancer because they are too easily fatigued to get out and about easily. Adapt the event to meet the needs of your loved one, but do it. We all need healthy outlets for fear and frustration. It’s what builds the muscles we use to rise above adversity. When you take the time to work on the emotional intimacy of the relationship you share, you reconnect and rediscover why life matters. Don’t be afraid to reach out. And don’t hold back because you fear you will eventually lose that love to cancer. Every laugh, every smile, every gleam of joy in an eye is what keeps us going. It’s what makes life worth living.

Is there a difference in the type of caregiving you give to cancer patients? There can be. A lung cancer patient will probably have very different needs than a breast cancer patient, especially if the disease advances. A bone cancer patient will probably experience the disease differently than a blood cancer patient. An ovarian cancer patient’s particulars will likely be different from a prostrate cancer patient’s. And so it goes on.

Why do caregivers need to know there are different care needs for cancer patients? Caregiving is never a one-size-fits-all situation. How a disease changes a body depends on the organs affected, and if you don’t understand that progression, you may find yourself and your loved one frustrated by the unexpected difficulties you face.

It’s always important for a caregiver to understand the disease that a loved one is facing. The more you educate yourself, the greater your opportunities to help your loved one. Brain tumors can make life very difficult for both patients and caregivers, especially if the tumors interfere with physical and neurological function. Sometimes the cognitive impairment of a brain tumor patient can lead to greater isolation for his or her caregiver. When patients are using steroids to cope with symptoms, the problems can increase, resulting in mood and personality changes, insomnia, atrophying of leg muscles, and even an increase in appetite. This can create a greater burden on the caregivers of brain cancer patients.

The more you understand about how the cancer will affect your loved one, the better able you will be to handle the responsibilities of being the caregiver. Perhaps the most important thing for you to understand is that you really do need a great deal of support during this family crisis. The greater your resources for coping with the specific needs of a brain cancer patient, the better your ability to handle the increased burden of caregiving duties. Not all patients will have the same needs, but if you have a general understanding of the likely changes for a brain cancer patient, you will be better able to prepare yourself for these changes as they occur. Sometimes the caregiver is more aware than the patient, and this can add to the stress and distress levels you may experience.

Caregiving can exhaust your physical, mental, and emotional reserves over time. The greater the physical, mental, and emotional needs of your loved one, the less time you have for yourself. You can lose yourself in caregiving in ways that make it difficult for you to maintain yourself and your overall health, because you are constantly providing care for your loved one. If you understand that caregiving is likely to change over time, as the brain tumor changes your loved one, you can build the kind of support you need to get through the experience.

Sometimes the hardest thing for caregivers to understand is that there will come a time when, no matter how great a caregiver you are, you will need the help of family, friends, and even health care providers to do the job. The responsibilities become more than one person can handle because of how the disease affects your loved one. Accepting this reality through educating yourself about the disease and its likely progression allows you to put in place the support you are going to need before you need it. Respite care is important for every family caregiver, regardless of the disease your loved one is facing, but when the disease creates an intense need for care, it is even more critical that you get out on a regular basis and take time for you. Sometimes you almost have to force yourself to do it, because you might feel you are letting your loved one down by leaving him or her with another person for a little while. Understanding the benefits of respite care can help you recognize that you need to recharge your batteries in ways that enable you to return to your duties.

If your loved one has a brain tumor, you owe it to yourself to find out as much as you can about the disease and ways to cope. Here is one resource that may help you to do that:

http://www.braincancer.org/

What role should cancer centers play in family caregiving? Should they be shining examples of how to manage cancer, by providing family caregivers with the education, support, and resources that will help them keep cancer patients on the right track, or should they hang back and let families fumble through cancer care? Is a “Come What May” approach the most sensible thing?


In search of cancer programs that are taking the lead in this important endeavor, I came upon the City of Hope. This organization hosts what I think is the quintessential offering — The Family Caregiver Project. The goal of the project is to create a national education program that will strengthen the abilities and capabilities of family caregivers, as a means of improving the outcome of oncology patients. Oncology teams from across the country are participating in the effort to develop family caregiver programs.


If I told you that the March and July courses were already full, what would you take away from that? Cancer centers are getting serious about learning how to help families manage cancer and live better?


What are the classes and presentations offered? Here’s a partial list:


Improving Quality of Life and Quality of Care for Oncology
The Challenge of Quality Care for Family Caregivers in Adult Cancer Care
The Challenge of Quality Care for Family Caregivers in Pediatric Cancer Care
Physical Well Being and Family Caregivers: Family Members Providing Care and Caring for Themselves
Models of Excellence: Physical Well Being
Serving Diverse Cultures of Family Caregivers
Review of Family Caregiver Resources
Physiological Well Being and Family Caregiving
Models of Excellence: Psychological Well Being
Family Caregiving Research
Sexuality Concerns
Diverse Family Caregiver Communities
Spousal Caregiving
Distance Caregiving
Communications
Social Well Being and Family Caregiving
Models of Excellence: Social Well Being
Assessment of Psychological Symptom/Screening of Family Caregivers
Spiritual Care
Pediatric Family Caregiving
Support Group and Family Meeting
Communications
The Future of Geriatric Oncology and Implications on Family Caregivers
Spiritual Well Being and Family Caregivers: Deriving Meaning and Faith in Caregiving
Spiritual Well Being


If you are a cancer patient, you should take hope in the fact that oncology teams are recognizing that your quality of life with cancer can be improved through family education and support. If you are a family caregiver for a cancer patient, you should take hope in the fact that oncology teams are recognizing that you are an important part of the quality of life your loved one experiences. And if you work for a cancer center and there is no effort to provide programs to family caregivers, you should get moving and encourage your oncology team to join the effort.


When I look at the offerings for The Family Caregiver Project, I am struck by several things. First, the City of Hope effort understands there is a difference between providing care for an adult and a child. There is also a difference between providing care for a family member and a spouse. Relationships are complicated by the ties that bind us, and it’s important to help couples navigate that difficult terrain, in order to improve patient outcome. Second, the City of Hope effort understands that there is a need to work with patients of different cultures. If the family caregiver is an integral part of cancer management, it’s important to work with the strengths of the culture. Many societies have strong familial bonds that could and should be utilized in family caregiving. It’s important to respect beliefs and understand differences, because the big goal is to help all cancer patients manage the disease and find quality of life.


As more and more cancer patients survive the disease, their needs for family care change. There will be times when cancer patients thrive on their own, but other times when they are bogged down by the physical and psychological burdens of cancer. Knowing that family caregivers are directly impacted by the cancer of a loved one and making strides to overcome the obstacles is an important goal. The Family Caregiver Project is a great start to helping families survive cancer. Cancer families, ask your cancer center if it is participating in the effort, and if not, question why.

A funny thing happens over time when you’re part of a cancer family. You start to care about others who are going through the experience. At first, it’s people you know from the cancer center. You sit with them in waiting rooms. You start up conversations with them in hallways or in the parking lots. Over time, you share stories. Sometimes, when the news is good, you celebrate. When it’s bad, you mourn.

As time goes on, you meet more and more people away from the cancer center, and when you find out they, too, have cancer, you feel connected to their struggle as well. The more immersed you are in the big cancer picture, the better you get at recognizing the signs of cancer in others — that skin pallor that comes with chemotherapy, the weight loss from the disease and its treatment, and even the hair loss hidden by a cap or kerchief. These are the people in your community with cancer.

When I go to the gym, I often see cancer survivors. Some are doing well, working out. They’ve regained their lost muscle and they are looking healthy again. Others are moving slowly towards their recovery. You send up a silent prayer for them, hoping that whatever comes, they will have what they need.

Yesterday, I was working out on a climber, trying to keep myself motivated. Far across the gym floor, I spied a woman I know has been through cancer treatment. Her hair has grown back now, thick and full. She’s no longer flesh and bones. But yesterday, as she walked through the gym, I saw something new. There was pain etched into her face and my first thought was she just received word her cancer has spread. This stranger, whom I’ve never even met, has had very grave news. As I watched her go through her half-hearted exercise routine, I thought about the change in her. She had been doing so well for so long. Perhaps the sadness that seemed to fill her soul wasn’t about her cancer. There are other things in life beyond the disease, aren’t there?

Why am I sharing this with you? Because cancer families should know that there are people who care in their communities, sending up silent prayers, hoping for the best. We are strangers who, when we see the signs of the disease and its treatment, can’t help but feel connected, even if we never meet. We know the pain our own loved ones endured. We know their struggles, so we can understand the struggles of others we see. We hope they have better days ahead. Maybe the next time I see this woman, the pain will be gone from her face, and the sorrow that seemed so deep will have faded from her soul. But I will still wonder how she is doing. I will still hope for the best for her. That’s what the cancer community is really all about.

I’m always fascinated to see how medical professionals face their own cancer diagnosis. What options for treatment do they choose and why? How do they manage the symptoms, the stresses, and the obstacles?

Gail Cooney, former president of the American Academy of Hospice and Palliative Medicine, was diagnosed with advanced ovarian cancer nearly three years ago. Currently, she’s the assistant medical director at Hospice of Palm Beach County. She still treats patients. She’s still active. How did she do it?

Dr. Cooney started her cancer treatment by taking charge of the plan. She received a very aggressive course of chemotherapy. This is the kind of thing that usually knocks people off their feet, but she was smart. She used palliative medicine to help her balance the negative side effects of the treatment. By managing her symptoms, she was better able to tolerate the chemotherapy. She also had surgery. Dr. Cooney chose acupuncture and conventional drugs to avoid the nausea that accompanies a lot of chemotherapy. She managed to keep her weight and strength up by consuming milkshakes.

But Dr. Cooney didn’t just stop there. She joined a support group for ovarian cancer patients, got counseling from an oncology social worker, and met with a nurse educator to understand the powerful drugs she was using.

Last fall, she learned the cancer had started growing again, Dr. Cooney resumed treatment with chemotherapy. She is hopeful that this will help her.

What should you know about palliative care and cancer? Studies on lung cancer patients showed they lived an average of three months longer with palliative care than with standard cancer treatment. Imagine that. If you treat the negative side effects, you might just live longer. Why is that a big deal? The success of cancer treatment often depends on the little things. If you lose too much weight, it negatively affects your health, and that can overwhelm your system when the chemo kicks in. Being able to maintain a healthier weight means tolerating the unpleasant side effects better. If you live a day longer because of it, you might live a week longer because of it. That week could turn into a month, and that month could turn into a year. That year could give you enough time to get a new treatment, and that new treatment could help you go on managing your cancer for years to come.

Dr. Cooney still faces an uncertain future, but she clearly wants to go on treating other people as assistant medical director as long and as well as she can. She’s not backing down or giving up. Using these resources to help manage her cancer may help her succeed with that goal. If nothing else, Dr. Cooney is preserving the quality of her life, addressing her needs as a human being.

So many people treat palliative care as “dying care”, but it’s really about comfort and quality of life. If it can help you live longer, why not take advantage of it? Why not attack your cancer with every tool you can? Embrace life by embracing what cancer support can do for you as a whole person. You’ll live longer and live better.

If you would like to read more about Dr. Cooney and the positive benefits of palliative care, check this out:
http://yourlife.usatoday.com/health/medical/treatments/story/2011/02/Palliative-care-prolongs-life-reduces-suffering/44046292/1

How bold are you? Are you ready for an adventure? It’s not for the faint of heart. But if you’ve got the guts and you’re a cancer fighter or survivor, aged 18-39, why don’t you join others and have a wild seven-day adventure?

First Descent is an organization started to help cancer fighters and survivors challenge themselves in the great outdoors:

http://www.firstdescents.org/

Imagine going off in a whitewater kayak after cancer treatment. Does it sound scary? Or is cancer even scarier? Rock climbing? Can it really be harder than struggling with chemotherapy side effects? Why not discover your inner survivor?

The first adventure is free for cancer fighters and survivors. Wouldn’t it be nice to be able to bond with other people in the same boat with you? Free to be yourself. Free to reach new heights. Free to rejoin the living world. That’s really one of the biggest hurdles for cancer patients, finding the courage to start living again. This may just be the ticket for you.

One of the best things we did when my mom started her cancer treatments was to talk with other cancer patients. The more experienced of them had many strategies for coping. As we learned their personal stories, we got a glimpse into their own strengths in managing treatment, side effects, and more than anything, the fear that accompanies a cancer diagnosis.

There is an organization in Louisville, KY that has been matching cancer patients with experienced cancer mentors since 1988. Friend for Life pairs people up, not to provide medical advice or tell cancer patients what they should or shouldn’t do, but to offer insight and guidance about living with cancer:
http://www.friend4life.org/index.php

A lot of cancer patients feel lost after their diagnosis. Families don’t always immediately understand the way cancer can affect the whole person. It takes time to understand what cancer can do to a family. Emotions are often raw, fears can simmer beneath the surface, and people don’t want to talk about it, because it’s so scary.

If you or a loved one are struggling with cancer, why not check out this group? You can never have too many friends in life, and having someone who’s walked in cancer shoes before you can be very reassuring. When you have fears or doubts that you can get through it, it’s nice to have a mentor to turn to for advice, encouragement, and even the occasional shoulder to cry upon. All volunteers are trained to help cancer patients.

Even better, if you are a seasoned cancer survivor, why not consider joining? Why not share your strength and courage with someone just beginning the journey? You might just make a difference in someone else’s life!



Some of my mother’s many red hats

Losing your hair can be devastating to your self-esteem and confidence. Many cancer patients, in their rush to cover their balding heads, throw hats on without much thought. It’s a way to hide what is no longer there.

I remember when my mother realized her hair was falling out. She mourned that loss deeply. It was more than just hair falling out. It was what it all meant. She had cancer. The cancer was serious enough that its treatment caused her hair to fall out. Was she dying?

That may be the biggest unspoken question in the hearts and minds of cancer patients when hair falls out. Is this the proof that cancer is life-threatening? Is this a sign of more to come, of a greater loss down the road? That can be really scary.

The hat, at that point in time, becomes a refuge. It’s there to hide what is gone. In that sense, people are hiding behind their hats. The hat becomes associated with the fear, sadness, and negativity of cancer treatment.

I say embrace the hat thing. Don’t wait until you need one to hide a bald head. Start wearing them now, when it’s by choice, not by desperation. Pick hats that express your personality, your sense of style, and even your sense of humor. Start a collection. What kind of hats do you like to wear? Get yourself used to wearing one. Look for choices that reflect your image.

If you need some inspiration, take a page from the Red Hat Society. This group of older women takes great pride in their group attire. Step into a meeting and you will find a sea of red hats of all shapes and sizes. There are feathers, rhinestones, ribbons, and other embellishments. There are derby, straw, and pill box hats. There are elaborate turbans and berets. These women delight in embracing the hat concept.

If your family and friends want to support you through your cancer treatment, why not share the hat experience? Very often, cancer patients find family and friends are willing to shave their heads in support. Why not start a hat club, just to be different?

You may not be able to wear all of your favorite hat style when your hair comes out during chemotherapy, and you may have to adjust things  to be comfortable. Wig liners make the hat-wearing more comfortable against bare skin. But when you get into the habit of wearing a hat before you need one, it makes it less devastating when you do.



Some of the “chemo caps” I made my mom

 Many cancer patients can wind up feeling unattractive when cancer treatment gets into full swing. In the end, my mom was saved by her love of hats. I made her “chemo caps” out of colorful fabrics she liked, and I even made matching pull-on pants. It was a big boost to her self-image to have people admire her ensembles. It made her feel more like a “normal” human being. That’s an important thing for cancer patients. No one wants to stand out in a crowd for all the wrong reasons. We all want to be admired for our inner and outer beauty. Find the hats that make you happy and make them a part of your wardrobe and style. Give yourself the power of the hat. It’s more than just a cover for a bald head.

I just love seeing how cancer survivors reach out to each other. The sense of community is wonderful. That’s the benefit of searching the Internet for people who are trying to make a difference in the lives of cancer patients.

H.U.G.S. for Strength was started by a very experienced oncology nurse. As someone on the front lines of the cancer battle, she’s seen it all. It has so obviously changed her life. The concept behind H.U.G.S. is that a cancer survivor provides a piece of cloth that is transformed into a patch that is then sewn into something another cancer survivor can wear. By passing on the patches, the strength and legacy of our cancer survivors live on:
http://hugsforstrength.com/

More importantly, H.U.G.S. seeks to connect cancer survivors in a network, a community that not only shares the cancer experience, but also the hope and inspiration of the many who have passed this way. Let’s hope the effort spreads its strength across the country.