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Cancerversary Blog
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Getting the information you need
Posted by Linah Lubin on March 8, 2010
A few weeks ago I was contacted by a non-Hodgkin lymphoma survivor who completed treatment including chemotherapy and bone marrow transplant within the last year. He wanted to learn more about our resources and see how he could help get materials and information into the hands of cancer survivors sooner in the treatment process than he received them. He came to the NCCS office and met with a few members of our staff, and talked about his experience – what it was like to be one of the only men in the infusion room; how anxious and uncertain he felt about receiving chemotherapy; how his sense of humor helped get him through. This conversation got a few of us wondering – how often do people diagnosed with cancer receive the information, materials and support they need at the right time? When is the “right” time to receive resources that can help someone get through cancer – physically and emotionally? When someone hears the three words “You have cancer,” they probably don’t hear much else, so it might not be the best time to overwhelm them with information right at diagnosis. But people may make treatment decisions before having time to do the right research and ask the right questions of their doctor. They might have been able to wait a few more days or weeks to make a decision that might have better met their needs. Of course, there are so many factors involved in the way people receive and process information, and it is different for every individual. That’s why we want to hear from you: Did you get the resources you needed at the right time? Weigh in by leaving a comment below or taking our latest poll.
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"Shades of Survivorship"
Posted by Anne Willis on February 24, 2010
Cancer is so personal, and we all experience cancer differently as survivors, caregivers, and healthcare professionals. For some people, especially minorities, finding support that relates to their culture and circumstances can be challenging, confusing, and isolating. We recently posted in our News and Reports section an article from CURE magazine on "The Many Shades of Survivorship," which does a great job of explaining cultural impacts on survivorship. As people like Joyce work tirelessly to address the needs of the underserved, NCCS is also working to provide resources to people who often don't have culturally appropriate or relevant information, and we have been working over the past several years to reach several underserved groups. Our Cancer Survival Toolbox® has always included survivor stories from different backgrounds and cancer types. The conversations with healthcare professionals, family and caregivers, and other survivors in the program represent real interactions that affect all types of survivors. In 2007 we received funding from the Centers for Disease Control and Prevention to build out our Cancer Survival Toolbox by adding new disease-specific programs focused on blood cancers. This funding enables us not only to develop new programming, but also to reach out to African Americans and Latinos with these and other resources. Like Joyce in Louisiana, we are working to use our national scope to improve the lives of people with blood cancers, especially those who are disproportionately affected by the disease. Our Living with Multiple Myeloma program of the Cancer Survival Toolbox is targeted to African Americans, who are impacted more by this disease than other groups. To help us spread the word about our free resources, sportscaster James Brown filmed a Public Service Announcement. See the video below and stay tuned for more blogs about our underserved outreach. If you are interested in learning more about what we're doing, feel free to e-mail me at awillis@canceradvocacy.org.
This weekend I heard the story of a Louisiana woman named Joyce Ivery. A 19-year cancer survivor, Joyce realized that there was not much support that she could identify with, so she and her family started a support group for African Americans. Fifteen years and a devastating hurricane later, the group is still successful and provides much needed support to African American women and their families in New Orleans and other cities in the state (she had to leave New Orleans after Katrina but still runs a group in the city). She described the organization's model as "Faith + Love + Knowledge + Empowerment = Wellness," which I thought was particularly insightful. Since creating her organization and providing services to people who otherwise would not have found support, Joyce has improved the lives of hundreds, if not thousands, of women. It's these acts of advocacy, whether at the community level or nationally, that create positive change for all of us affected by cancer.
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Caregiver, Love Thyself
Posted by Michelle Johnston-Fleece, Guest Blogger on February 11, 2010
(Ed. note: Michelle Johnston-Fleece is a guest blogger and NCCS advocate. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) As Valentine's Day approaches, it's only natural to think about and celebrate love — whether it’s newly budding love, well-established love, or love lost. But this day is only a precursor to another very important day in my life, my wedding anniversary. I married Matthew on the evening of Sunday, February 16, 2003. A blizzard began during our wedding, which was held in Brooklyn, NY, in a restaurant right on the river between the Brooklyn and Manhattan Bridges with a view of downtown Manhattan. It was beautiful. And despite the blizzard and the fact that most of our guests barely got back to their hotels and were trapped there for a couple of days, it was a great time. It was great despite the fact that Matthew had been in treatment for 2 years before the wedding. He took a few weeks off chemo to be able to get married and have a honeymoon (we had to scale back our plans, but hey, at least we got away). And though we were only married for about a year and a half (Matthew died in September 2004), the memories made on that February 16th will always have special meaning for me. Since he died, though, those memories have mostly made me sad. But this year, I want to evolve the meaning of that day. I want to transform it from being about grief, sadness, and a symbol of loss; from memories of caregiving to being a day about caring — for myself. As caregivers, we spend so much time and energy caring for someone else. It consumes us. It always seems so difficult to take a break and do something for ourselves — after all, there’s always something to do, someone else always more in need. Although it's been 5 years since Matthew died, I can still feel some of the effects of nearly five years of caregiving — on my body and my spirit. So this February 16th I want to mark my Cancerversary by being thankful about what my caregiving experience gave me: the perspective, the appreciation for life, the great memories I have. And most importantly, I want to do something for myself. Maybe I’ll take a day off work and have a spa day, have lunch with a good friend, or simply sit at home and take a hot bath and have a quiet evening with a good book. I also want to urge all the caregivers out there to take a day — any day, as often as possible — for yourself. To nurture yourself, and love yourself. You’ve earned it, you deserve it, you need it and it will only make you stronger and better able to care for your loved one. After all, if we don’t take care of ourselves, who will? As a former caregiver myself, I am interested to know what other caregivers do to take a break from their usually demanding day-to-day activities. How do you take care of yourself? If you haven’t thought about yourself in a while, share what you plan on doing to start! What do you do to take a break and take care of yourself? Ed. Note: Cancer takes a toll – both physical and emotional – on everyone who goes through it, whether you’re the patient or the caregiver. Did you find the time and space to recover emotionally, as well as physically, from the experience? Take our poll and let us know.
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Young Adults and Cancer: Closing the Gap
Posted by Rynell Cook, Guest Blogger on February 3, 2010
(Ed. note: Rynell Cook is a guest blogger and young adult cancer survivor. To read more about her cancer story, visit her Cancerversary page. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) My name is Rynell Cook, I'm 26 years old and I'm a 13 year cancer survivor! As most people know, every year is truly a milestone for young adult cancer survivors. When I was just 11 years old, I was diagnosed with a rare type of bone cancer called Ewing's Sarcoma. I went through nearly two years of chemotherapy and had a partial left foot amputation where the tumor was found. With only 8 toes, I'm proud to say that I'm currently training for my first half marathon. In Austin on February 14th, I'll be running 13 miles for being 13 years cancer free! I also decided to run on behalf of the non-profit organization that I work full-time for, Imerman Angels. Most cancer survivors would agree that overcoming cancer changes our perspective on life in a positive way. After beating cancer, many of us say, "Without cancer, I wouldn't be the person who I am today,” or “I'm so grateful for the experience cancer has given me." After cancer, we feel like we've been given a second chance. Whether it's an opportunity to make a difference in someone else's cancer battle or a desire to fundraise for a worthy cause to support cancer research, we want to make a difference. Particularly in the AYA (Adolescent & Young Adult) population, many of us feel the need to get involved, let our voice be heard and somehow impact the cancer community. Cancer is an equalizer and there is almost this "unwritten language" that all survivors have with one another. With nearly 70,000 young adults diagnosed with cancer each year, we still face some unique challenges. The National Cancer Institute's Progress Review Group identified some of these challenges: limited insurance coverage, delayed diagnosis, treatment practices/setting, number of clinical trails available, understudied population, psychosocial/supportive care, follow-up care guidelines, and prevention/early detection emphasis. With more attention to young adult issues, hopefully many of these issues can be addressed. What's great about the Young Adult Alliance is that it was established by the Lance Armstrong Foundation to address the recommendations in the Progress Review Group report: How we can close the gap and improve AYA oncology. The Young Adult Alliance is a coalition of cancer organizations. These cancer organizations all have different mission statements, are located in different cities, and have different leaders, yet they all come together to improve the survival rates and the quality of life for young adults with cancer between the ages of 15-40 years old. Both the NCCS and Imerman Angels are active members of the Alliance. These are just two organizations that engage the AYA population.
Over the past two years, I've had the good privilege to see how Imerman Angels tremendously impacts young adults living with cancer on a daily basis. We exist so that no one faces cancer alone. We provide free 1-on-1 peer support all over the country by connecting newly diagnosed patients, "cancer fighters," with someone who has beaten the very same type of cancer, at the same stage level and also who is the same age and gender. Essentially, they get an opportunity to meet their "cancer twin" and this person can be their coach, buddy, angel, mentor and also say, "I've walked a mile in your shoes and I'm living proof that you can get through this!" I also volunteer as the Chicago Chapter Director for another great cancer organization - www.yogabear.org. Yoga Bear provides cancer survivors with opportunities for wellness and healing through the practice of yoga. I'm passionate about Yoga Bear because through yoga, I was able to regain my balance after my amputation.
To see how you can get involved, let your voice be heard and connect with other young adult survivors, check out the following few organizations that dedicate resources to the AYA population:
National Coalition for Cancer Survivorship - www.canceradvocacy.org
Imerman Angels - www.imermanangels.org
Yoga Bear - www.yogabear.org
First Decents - www.firstdescents.org
I'm Too Young for This - www.i2y.org
Lance Armstrong Foundation - www.laf.org
Bright Pink - www.bebrightpink.org
Ulman Cancer Fund for Young Adults - www.ulmanfund.org
You can view a list of all of the organizations in the Livestrong Young Adult Alliance, or browse through young adult-specific resources offered by the members.
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Getting back to normal – it’s not just physical
Posted by Melissa Glim on January 27, 2010
This week, we shared a blog post from prostate cancer survivor and New York Times columnist Dana Jennings, about the difference between recuperating from cancer and recovering. In his latest Well Blog post, Jennings writes: "Recuperation is just physical. [...] But recovery means wholeness: mind, body, and spirit.” Yet the exhaustion and depression he felt after his body healed took him by surprise. Reading this moving post made me think back to some of my own experiences – and those of people I’ve talked to. A couple of years ago I spoke with a young woman, a friend of a friend, who was preparing for a procedure on her breasts. I talked to her about what to expect; the scars, the drains, the pain, and answered her questions about recovery time – about two weeks for the incisions to heal but a month or two before you actually feel better. To my surprise she started to cry. “I can’t do that! I can’t miss work!” As we talked, I realized the problem was bigger than a less-than-understanding boss. She felt guilty and selfish for even considering taking care of herself. Let’s be honest, who among us hasn’t felt that? In our society, hard work and a stiff upper lip are model attributes. And let’s face it, they’re good qualities that made this country what it is. But, how hard are we working when we haven’t allowed ourselves to truly recover from something that has thrown our minds and bodies for a really nasty loop? This is often the case for cancer survivors. They get treatment for their disease, but so often their psychological, psychosocial, spiritual, and other needs remain largely unmet – not only by healthcare professionals but also by their own family and friends. The end of cancer treatment can be one of the most uncertain times during a person's cancer journey. The body is (mostly) healed and it’s time to get on with life and return to some sense of normalcy, right? But cancer is much more than a physical disease. It affects our sense of self, the way others might treat us, our expectations, and our hopes and dreams. In fact, the end of treatment is often when the enormity of what has happened really hits – and it’s a time when so many cancer survivors struggle with depression, exhaustion, and uncertainty. I would love to hear from you about your own struggles to recover, not just recuperate, from cancer. Did you find you needed more time to bounce back or were you ready to go back to your old game? Were you surprised by your own reactions? Were those around you – family, friends, colleagues, and others – supportive of your need to adjust and take more time? How did you navigate other people’s expectations? How did you manage your own expectations for how you would feel after going through cancer treatment?
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Life after cancer
Posted by Linah Lubin on January 13, 2010
In a recent New York Times Well Blog post, Dana Jennings reflected on his life after cancer, sharing how the physical and psychological changes he’s undergone have affected him and how his outlook has changed. In his self-described “post-cancer life,” he is in the midst of a transitional phase; one that many cancer survivors can relate to. You may have heard the term living beyond cancer, but what does life after cancer really mean? Even if you’ve been told you’re “cancer-free,” that doesn’t necessarily mean you’re free of cancer. Maybe your surgery scars provide you with a constant reminder of what you’ve been through, or maybe the experience has left a more intangible imprint – like a time in your life when you realized the strength and resilience of your mind and body, or a spiritual awakening. Similar to cancer survivors, life after cancer changes for caregivers, too. As a caregiver, you have also become a survivor; facing many of the challenges, responsibilities and life-changing effects of cancer and its treatment. Perhaps you have resumed many of the everyday activities and hobbies you enjoyed so much before cancer entered your life. Or, just being able to return to a normal work schedule and daily routine is how you define life after cancer. Transitioning into life after cancer can be deeply personal. Whether you’ve completed a long and grueling period of treatment – or another significant moment – this transition can signify the end of one chapter and beginning of another; or it can just sort of flow without a definite start or end point. What does life after cancer mean to you? How has your outlook on life changed? Leave a comment and take our poll!
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2010 - The Beginning of Cancer's End
Posted by Suzanne Lindley, Guest Blogger on January 6, 2010
(Ed. note: Suzanne Lindley is a guest blogger who often volunteers for NCCS. To read more about her cancer story, visit her survivor profile. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) Saying goodbye to the last decade is liberating and at the same time nostalgic. 2010 is beginning with highlights, happiness and hope that I didn't even know could exist in 2000. In the beginning of that decade, my husband, Ronnie, and I had left behind the dream of adding to our family and making long range plans. We were grappling with the fight for my life and death nipped at my heels from every shadow. Celebrations were few and far between and living with cancer seemed anything but possible. In the years since, I've not only learned that it is plausible "to live terminally" but to do so with greater experiences than I could have ever planned. My family has fluorished surrounded by the conquest of cancer, waiting anxiously for the next treatment or procedure that would bring us closer to the mystery of a cure. In these past ten years, colorectal cancer research has provided a number of new treatments. To 5fu we added Levamisole, Leucovorin, Irinotecan, Oxalpilatin, Xeloda, Avastin, Ertitux, and Vectibix. We've also seen the introduction of several new treatments that have given additional days to my life: Sir-spheres, three clinical trials, gamma knife radiation, cyberknife, radiofrequency ablation, vertebroplasty, and external beam radiation. The treatments that I first dreaded and feared have become routine. Around and through them, time has special meaning. The girls have grown up and started college, Ronnie and I have moved from our 30's to our 40's and no longer wait for the rocking chair days. Every day is filled with the gift of being together. The intrusion of cancer - the entity expected to weaken and kill me many times throughout this past decade, has actually provided a foundation for strength, not only for me but to my family and friends. Through living with cancer for this decade, I have achieved the clarity of knowing how fortunate I am and that there are many things far worse than the diagnosis I live with. I am loved and appreciated - and realize it without doubt. I have had support every step of the way. I live in a great community. I have incredible family and friends. I have watched the sun rise and the sun set. Four legged friends have left us and new ones have been rescued. I have met people who have profoundly changed my life. I have ridden horseback in the rain and under a starry sky. My children are happy, healthy and all grown up. I have jumped out of a perfectly good plane and ridden in a NASCAR at 165mph. Together, Ronnie and I have ensured that our door is always open as a haven for friends, and even as shelter to a homeless stranger. We've shared losses. We've celebrated victories. We have lived fully... and in the decade of 2010, we will see cancer's end!
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What's On Your Mind?
Posted by Anne Willis on December 24, 2009
The holiday season can be a time to reflect about the previous year and to recharge (after de-stressing) for the upcoming year. As NCCS takes some time off to gear up for 2010, we want to hear from you. We recently started this blog to build on our survivorship community, Cancerversary, and provide a place for survivors and their loved-ones to share, inspire, and empower others through telling personal stories, participating in the survivorship dialog, and providing feedback in our new polls section. Survivorship is many things to many people, and we want to know what you want to see in this community. What’s on your mind – what kind of things are you dealing with that you’d like to share or get help on? If you have any topics you think would make a good blog or poll post, or if you are interested in being a guest blogger, let us know! Contact Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org with your suggestions. Happy holidays, and we'll see you in 2010!
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How to have a stress-free holiday
Posted by Linah Lubin on December 18, 2009
We’re right in the middle of the holiday season, and for some the stress just continues to mount. If you’re also dealing with cancer – whether you or a loved one has been newly diagnosed or if you’re years past treatment – you might be experiencing even more stress this time of year. A fragile emotional state, issues with spirituality or relationships, or long-term effects of cancer treatment such as pain, anxiety or depression can all contribute to feeling overwhelmed – especially around the holidays. Not to worry! We’ve done some searching online and compiled a few links to sites that suggest different ways to help you beat the stress of the holiday season! No matter which advice you choose to take, the bottom line is simple: You and your loved ones will have a more enjoyable holiday experience if you give yourself a break, relax, and cherish the happy moments and memories you’re making. How do you cope with holiday stress? Take our poll! Do you have suggestions for how to stay stress-free during the holidays? Post a comment so you can help others! Happy Holidays from all of us at NCCS! See you in 2010!
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We Are All Advocates
Posted by Melissa Glim on December 7, 2009
As the holidays approach, I’ve been thinking about the conversations I’ll probably have with friends who, like me, are returning to our home town. We’ll gather together at the local bar and catch up on our lives and as so often happens, somebody will ask, “So what do you do, exactly?” As part of the advocacy team at NCCS, I spend a good part of my day getting lost in the finer points of getting a bill passed or a policy concept accepted. When I tell people what I do, they may be impressed, but they often can’t really picture what my day is like – that is until I explain that being an advocate goes so much farther beyond walking the halls of Congress or doing wonky stuff like reading great big pieces of legislation to see if somewhere in the legal gobbledy-gook, they’ve managed to help out cancer survivors. It’s when I describe all the other stuff – the things that I help so many members of our own Cancerversary community do – that they not only understand, but they usually realize they’re advocates, too! What is advocacy, really? At the very heart, it’s about taking a stand and speaking up – and that’s what so many of our members do every day. It might be at a very personal level – like Patricia Rain, who sought out a second opinion when her cancer returned. Or it might be doing something that helps people in your community like sharing your experiences with others. That’s what Corine Mogenis wrote about when honoring her friend Debbie Meade. When I do get together with grassroots advocates to do what we call public interest advocacy – the work that occurs when we try to change the way the system works – we usually find it’s the same game with different players. When we need to talk to a member of congress to convince him to co-sponsor the CCCIA, the way Ken Youner did, we use the same communication and negotiation skills we all used as patients or caregivers, not to mention standing up for his rights. Taking part in a panel of peer reviewers, like Jo-Ellen De Luca often does? That requires decision-making and problem-solving skills. When Sherri Romanoski started BAG-IT, she sure put her finding information skills to use. I’m looking forward to going home – not just for the smell of pine trees and hot mulled cider and the certain pleasure of seeing friends and family. I’m glad I’ll have something great to say when somebody asks me how I spend my day. Because I can’t imagine a better answer than the truth: I am an advocate. Advocacy can take many forms – so there’s something for almost everyone to do, whatever their interests, time commitment, or abilities. What are you most likely to do as an advocate? Take our poll - How are you an advocate? - and let us know!
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Happy Thanksgiving!
Posted by Linah Lubin on November 25, 2009
Thanksgiving is the perfect holiday to think about a Cancerversary. Whether you're celebrating your own survivorship or you're giving thanks for getting to say goodbye to a loved one you lost to cancer, Thanksgiving - like a Cancerversary - is a time to reflect on the past and acknowledge the present moment. No matter how rough the journey has been, there's always something we can find to be thankful for. This Thanksgiving, we'd like to know what you're thankful for. Is it a person - a family member, nurse, or complete stranger - who helped you during a time of need? Is it a another year of clean scans? Is it the gathering of family members at a table instead of at the hospital? Whatever you're thankful for, share it with us by leaving a comment below, and share it with those you love. After you've eaten the turkey and watched the football game, be sure to tune in to Kaleidoscope on Thanksgiving Day! Kaleidoscope, a holiday entertainment special, combines the beauty of skating, the excitement of song, and the brave message of cancer survivorship. The show was created to help raise awareness of the key issues surrounding women and cancer and to inform, inspire, and influence women to take action for their health. NCCS is one of 10 groups that make up the extraordinary collaboration of cancer advocacy partners whose messages of empowerment are included throughout the program. Skating legends Scott Hamilton and Dorothy Hamill are joined by fellow cancer survivor Olivia Newton-John in this fun-filled event. The show also features superstar skaters Kristi Yamaguchi and Nancy Kerrigan and Olympic hopefuls Rachael Flatt, Johnny Weir, and Brandon Mroz. FOX's "American Idol" former contestants David Archuleta and Katharine McPhee also perform. Tune in Thanksgiving Day, November 26th at 4:00 p.m. (EST) on FOX. After you've watched, let us know what you thought by posting a comment!
From all of us at NCCS, we wish you a happy and healthy Thanksgiving!
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Has your connection to cancer influenced your friendships?
Posted by Anne Willis on November 18, 2009
November is lung cancer awareness month, and this past weekend I participated in DC’s lung cancer walk that was put together by an organization called Lungevity. The event brought together 1,300 walkers who raised $250,000 to fund research for the disease, which was well beyond anyone’s expectations. I attended the walk in honor of my friend and co-worker, Dan Waeger, who passed away in March of this year. At 26 he lived with stage IV lung cancer for nearly four years and didn’t let it stop him from getting the most out of life. Dan touched nearly everyone he met, and we were out there with a team of about 20 people who knew him in different ways. The thing that struck me the most about the walk was that it was such a big opportunity for people in the area affected by lung cancer to join together and acknowledge the disease together. Just connecting with others can go a long way, whether it is in building a movement to make a difference or just in removing the sense of isolation, especially when there are not many lung cancer survivors and when there is a stigma attached to the disease. Many of the attendees were directly touched by lung cancer in some way and probably had not met many others like them. Cancer can be very isolating, but being able to connect with others can make a huge impact. As this new community formed in front of me, I couldn’t help but think about my own connections to lung cancer and the larger cancer community. So many of the people I interact with regularly know me from my connection to cancer as a survivor. Many of my friends work for organizations in the cancer community or are survivors themselves. Even for the people in my life who knew me before I was diagnosed, my survivorship is a key part of our relationship, largely because I am so active in the cancer community. We want to hear from you about your relationships after being affected by cancer. Take our poll – Has your connection to cancer influenced your friendships? - and join the discussion below by leaving your comments.
It was incredible to see all of the people who came out to support the cause, hear their stories for being there, and see the connections people were making. Sharing these stories can be inspiring and provide hope for many people. Read Taylor Bell’s story of being a young lung cancer survivor trying to raise awareness and connect with others. Mary June Bayuk also has an inspiring story about being a nurse/nurse facing a lung cancer diagnosis.
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Do you want straight talk from your doc?
Posted by Anne Willis on November 11, 2009
Last week we mentioned an article on a new study about cancer survivors and their relationship with their doctors. Ideally we'd all have a doctor who we feel comfortable with and who will provide the information we need in the right manner. This is especially important when dealing with a complex disease like cancer where there may be many decisions to be made and there's a whole new set of information that sometimes needs to be quickly learned. It can definitely be intimidating, but at least there are ways to improve your relationship with your healthcare team and make sure you are communicating effectively, asking the right questions, and getting the best care. As the article points out, some survivors have strong preferences for their relationship with a physician. Some things can make a big impact in how we feel about our healthcare team, which affects how we experience the care we are getting. Some people want their hand held and some want to talk about religion. Take our poll – What's most important to you about interacting with your doctor? A lot of our Cancerversary stories talk about making sure you ask questions and get more involved, but sometimes that can seem easier said than done, especially when you are still trying to process a diagnosis. We do have some helpful First Steps for Newly Diagnosed along with a great list of questions to ask for different situations. Do you have any tips for improving your relationship with your doctor? Is there anything specific (a resource, advice, etc.) that helped you communicate better? Do you have any suggestions or advice for others going through treatment or who have finished treatment and are navigating their survivorship care? I think my advice would be from Sex and the City actor Evan Handler, a leukemia survivor who was interviewed about his latest book by CNN. In the interview he says, “The irony of ‘bad’ patients is that they actually do better for themselves...There were hundreds and hundreds of instances where my being a ‘bad’ patient saved my life.” There is a lot more to gain by making sure your needs are being addressed than there is by being too scared to communicate effectively. During my experience my family and I often fell into the “bad” patient category and let our healthcare team know what we needed. Sometimes we were probably much more “bad” than we wanted to be, but there was a lot at stake. But in the end it only helped me get better care and led several discussions and negotiations with the team. Ultimately my family and the doctors decided it was time to change my entire oncology team to a new one that was much more responsive to my needs. I spent about 6 months with my first team and 6 months with my second team, and I cannot image what it would have been like had we not spoken up, there was such a stark contrast. These relationships are too important to not address.
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What does Cancerversary mean to you?
Posted by Anne Willis on November 3, 2009
Cancerversary is about survivorship and acknowledging our own experiences with cancer, whether as survivors or loved ones. In addition to being able to tell your own story by creating your own Cancerversary page, you can now be part of the growing community by weighing in on our weekly polls. There is no right or wrong Cancerversary - the definition is completely personal and can be interpreted many different ways. The way you feel about your Cancerversary may even change over time. The first time I ever acknowledged a meaningful date to me was the 10th Cancerversary of my diagnosis with Ewing’s Sarcoma. That key milestone involved a party, but every year since then I have quietly observed the day. For some people, a key moment in a cancer experience may be time for reflection, like in Stephen Serra’s story about changing his career. For others, such as Leah Knowles, a particular date or time might lead to mourning the loss of a loved one. It can also be a festive commemoration, such as Corine Mogenis' story about all of the celebration around her friend Debbie Meade’s Cancerversary. And for others, like Debbie Cook, it is more of an attitude or a feeling. What does Cancerversary mean to you? Take our poll and see how others have responded. Be sure to share your thoughts on the meaning of Cancerversary by posting a comment.
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A gift for you
Posted by Linah Lubin on October 29, 2009
You're invited! NCCS is offering up to 10 free tickets for you and your loved ones to attend the taping of Kaleidoscope, a televised celebration of skating, song and survivorship featuring Olympic figure skaters and GRAMMY Award-winning musicians! Mark your calendars for 7:00 p.m., Monday, Nov. 16 when the legendary Scott Hamilton and Dorothy Hamill return to the ice for the live taping at the Verizon Center in Washington, D.C. This just in: David Archuleta, former contestant from the 7th season of Fox's "American Idol" competition, will also be performing LIVE at the taping of Kaleidoscope! The show will air on FOX from 4:00 p.m. - 5:30 p.m. (EST) on Thanksgiving Day (Nov. 26, 2009), immediately following the Thanksgiving Day football telecast. Get Your Free Tickets! Go to Ticketmaster to claim your tickets today! Choose the number of tickets you would like to receive from the Promotions and Special Offers section and enter the promotional code: NCCS NOTE: Ticketmaster charges a $2.00 convenience fee for each ticket ordered online. NCCS Promotional code limited to no more than 10 tickets per person.
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Welcome to our blog!
Posted by Roland King on October 28, 2009
Welcome to the Cancerversary Blog, the newest feature on our site. We created our blog to help you connect with others and share your experiences, reflect on the different interpretations of Cancerversary, and exchange resources and information. We also created a Cancerversary Polls section where you can share your opinions about survivorship and issues that affect you as a survivor or co-survivor. View poll results, share your comments on existing questions, or even submit your own! Is there something you’d like to bring up on our blog? Have a great idea for a poll question? Let us know by posting a comment below!
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