LIVESTRONG Blog

Featured Commitment Maker: PLWC

2010-03-10T16:55:24Z

At the LIVESTRONG Global Cancer Summit in 2009 we initiated a global call for Commitments in the fight against cancer. Nearly 300 organizations, individuals, leaders and corporations made formal Commitments. As a way of highlighting their immense efforts in battling this disease, we will feature a different organization each week, sharing stories of progress and success from around the globe.

PLWC Training Class

This week takes us to Cape Town, South Africa where the organization People Living With Cancer (PLWC) is helping connect cancer patients with volunteers to offer support and hope. The stigma of cancer in South Africa is a difficult hurdle to overcome and PLWC is helping to break down walls by focusing on sustainable delivery systems we hope to provide much-needed support service to especially previously disadvantage patients diagnosed with cancer being treated in state hospitals across South Africa.

PLWC’s commitment for the LIVESTRONG Global Cancer Summit was to provide support to the underserved by having patients referred to a toll-free line to offer effective peer-to-peer cancer buddy support across South Africa. The cancer buddies provide hope to newly diagnosed patients and increase patient compliance to treatment. The education process assists in changing attitudes and myths around cancer in South Africa. The toll-free line also identifies national trends that can be used to motivate and plan for further services in South Africa. By building a national database of patients and caregivers phoning in and contacting our website and branches nationally, they are able to contribute to gathering much-needed statistics regarding the needs cancer patients and family caregivers are struggling with cancer related issues.

Below is an amazing quote from a cancer buddy that recently finished the training program:

“I only realized when I was sharing with other trainees that I shifted the attention away from cancer into work after I was diagnosed with cancer in 2001. The week-end gave me a chance to reflect on how I felt then and also during and after chemo, surgery and radiotherapy. I was lucky in that I consulted a Psychologist before surgery; she gave me confirmation that I was stronger than cancer. Somehow I walked over it all this time…”

LIVESTRONG proudly supports the PLWC’s efforts, and we look forward to sharing their continued success.

Electronic Medical Records Roundtable

2010-03-09T13:56:46Z

LIVESTRONG staffers Ruth Rechis-Oelker, Heidi Adams, Ron Kolenic, Helen Knost, Chris Brewer and volunteer Rob Sartin talk about their experiences gathering medical records and how electronic medical records would help them remain in control of their health. LIVESTRONG advocates for the rights of patients to have control of their records and keep them in a safe, convenient and electronic format. We ask you to leave your comments and stories about medical records below.

E-Records Round Table from LIVESTRONG on Vimeo.

Send the Tobacco Treaty to the Senate for Ratification

2010-03-08T14:45:50Z

We need your help.

LIVESTRONG Action has entered Change.org’s Ideas for Change in America competition, asking the Obama administration to send the Tobacco Treaty to the Senate for ratification. Ratifying this global treaty means that the U.S. joins 168 other countries that have committed to reducing tobacco use—a major driver of the deepening cancer crisis around the world.

In the last round of voting, the LIVESTRONG community pulled together to propel our idea to the top. But, as the final deadline approaches, we’re currently ranked 13 and need to get to number 10 so that our idea is presented to representatives of the media, nonprofit organizations and relevant officials in the Obama administration.

Will you help us get 5,000 votes in the next four days by voting and asking your friends and family to do the same

TO VOTE (it only takes a minute):
1. Click the link above.
2. On our Idea page, click the big blue “VOTE NOW” button.
3. Enter your information.
4. Click on the link in the confirmation email to verify your vote.

Ideas for Change In America is a nationwide campaign that encourages people and organizations to submit innovative ideas for solving our country’s most pressing problems. With your help, we can make global tobacco control a priority and urge the administration to send it to the Senate for ratification:

If the Senate ratifies the Treaty, the US will join 168 committed countries in sending a powerful message to the tobacco industry: voting and asking your friends and family to do the same. We will not stand by and watch as lung cancer statistics rise around the world. 40% of cancer is preventable, and tobacco control is one of the first and simplest steps we can take to reduce diagnoses and make cancer a national priority.

Sincerely,
Doug Ulman and the LIVESTRONG Action Team

My Krazy Quest for the Cure

2010-03-05T16:50:18Z

Hey there, LIVESTRONG blog readers!

My name is Mackenzie Neel and I am so thrilled to be able to share something I have been involved in this year at my high school in New Braunfels, Texas. I’m in a class called Independent Study Mentorship that allows kids to design their own senior projects. My idea was to create a fundraising and service event focused on children with cancer.

This year cancer has risen to the number one cause of death, with over 100,000 deaths of children alone due to this global epidemic. I have been deeply affected by cancer within my own life through two family members passing away due to the disease and because of this and through working with Katherine McLane, the communications director at the Lance Armstrong Foundation, I created Krazy Quest for the Cure to promote cancer awareness and raise money for pediatric cancer patients.

To rally my community and raise funds and awareness, I planned a Krazy ride for kids at a local kid’s sports camp. My next challenge was connecting with a family who had been affected by cancer. I found Hunter Townsend, an 11 year old boy who has been battling a cancerous brain tumor, known scientifically as Diffuse Intrinsic Pontine Glioma, for almost two years. Hunter was diagnosed on March 27, 2008, and although he has undergone numerous treatments and sessions, his positive attitude goes way beyond his illness!

As I struggled with coordinating the hundreds of details around putting this event together, what was truly wonderful and inspiring to me was how supportive everyone was. From local businesses, to volunteers, to civic groups, everyone strived to be involved in any way they could and all had a connection with cancer in their lives.

After many hours of organizing, promoting, and recruiting sponsors, I’m looking forward to this Sunday when our community will come together for Krazy Quest for the Cure at TbarM Sports Camp in New Braunfels. My hope is to honor Hunter and his family, raise money that will benefit them and bring people together for a fun family activity.

I would like to thank everyone who has been so supportive of this endeavor. To me, this experience has proven that anyone, including kids, can give back to their community through a variety of capacities and that people are eager to help and support each other, even during tough economic times such as these.

You can visit www.caringbridge.org/visit/huntertownsend for more information about Hunter and www.krazyquestforthecure.com for more information about this event and ways to help cancer patients not only locally, but around the world as well.

An Interview with Elden “Fatty” Nelson of fatcyclist.com

2010-03-04T15:33:19Z

Elden “Fatty” Nelson blogs at fatcyclist.com, where last year he – along with Team Fatty – raised close to a million dollars for LIVESTRONG. He and his team did this in honor of Fatty’s wife, Susan, who was battling metastatic breast cancer.

Please give us a brief background on your wife’s diagnosis, and how long you were her caregiver.
Susan was originally diagnosed with breast cancer at the end of 2003. She had a mastectomy and chemo, after which she was in remission. I suppose you could say I was her caregiver for five years.

But really, Susan kept being an active mom and wife through her first battle with cancer. She only wanted or needed help on the hard days.

For a year or so after she finished chemo, we really thought the cancer was behind us. But then it came back, metastasized all over the place – her spine, her liver, her lungs, and her bones.

Then came the radiation and chemo, and that’s when I started being the one to really take care of Susan – or so I thought.
It wasn’t until the cancer reached Susan’s brain in May of 2008, though, that I truly had to become her caregiver – that I became the one she relied upon, increasingly, for everything.

From that point on, I considered it my sole purpose to make her life as good as possible, for as long as she was with me.

What was the hardest thing about being a caregiver?
I’m going to interpret “hardest” as meaning “worst,” because “hard” can also mean “difficult,” and I actually relished the difficult tasks – they helped occupy my mind.

So, what was the worst? There were a few things that stand out in my mind for making me miserable:

• The feeling of helplessness. A caregiver’s job is to make things better, to resolve problems. But when the disease has reached a certain point, you can’t fix some things. You can’t make them better. You can only decide to what extent you want to numb your loved one to the problem.

• Cure-all purveyors. Regardless of the course of treatment you and your loved one choose, there’s going to be someone – or more likely, a lot of people — out there who tells you that you ought to be doing something else, because it worked for a friend of their cousin or they saw a TV show about it. I spent hours and hours following up on these, and always came away feeling like I had been sent on a wild goose chase, when I could have been spending that time with Susan.

• The “avalanche” feeling. As the cancer progressed, symptoms seemed to snowball, so that one would trigger another. Often I felt like as soon as I got one problem somewhat handled, another would pop up.

• Telling my children. When we knew for sure that it was only a matter of time before the cancer would take Susan, she and I told our kids. We told them directly and honestly, and I’m glad we did. Still, that continues to stand out in my mind as the single most painful moment of my life. I don’t think there’s any possible way we could have told the kids without it being that way, either. Some things are going to hurt like hell no matter what.

What was the best thing about being a caregiver?
I think most people, at some time in their lives, wonder whether they could be heroic, given a chance. Being a caregiver definitely gives you that chance. While ordinary life is full of grey areas and compromises, being a caretaker gives you a chance to do something obviously unselfish, and to be the best “you” you can be.

So I guess the best thing about being a caregiver was that I felt like I was able to rise to the challenge. I was able to put aside my normal selfishness, put aside my normal impatience, and put aside my normal absentmindedness. When put to the test, I was as good as Susan needed me to be.

I took good care of her. And that thought comforts me every day.

The thing is, I don’t believe that I’m at all unique this way. I think all people have the ability to rise above themselves and be heroes to the people they’re caring for. And I think it’s important that as you’re taking care of someone who relies upon you in every possible way, that you recognize you’re doing something genuinely heroic.

And every once in a while, it feels pretty good to be a hero.

What were some of the things you did to have “me time” or blow off steam?
For me, this was an easy thing: go out on a bike ride. Out on my bike, I had a chance to vent, or forget – whichever I needed. I remember riding my bike out to a trail where I knew nobody was, then just bawling for the next couple miles. I also remember that on the downhill – for the first time in weeks – I spent several minutes without thinking about cancer and what it was doing to Susan.

I’m lucky; riding my bike takes care of two big needs a caregiver has: having something that occupies your mind, and having something that occupies your body. If what you love to do isn’t really active, I’d encourage you to find another activity in addition to it. Tiring your body out is a good way to sort of push your mental reset button.

It can be difficult for someone to know what to say to a person at end of life. What do you suggest people say and not say to the patient or family?
What you should not do is start a long story about your friend or neighbor or relative who had a similar circumstance. I know that you’re trying to empathize and show you understand, but – several times – when people did this, they wound up getting deeply involved in their own story of pain, and I felt like I needed to somehow comfort them.

I honestly don’t know what the right words to say are, or whether there even can be right words. When someone started stumbling or trying to explain what they felt, I just liked to say, “I know what you mean. Thank you.” Because I did. If the situation were reversed, I would feel terrible and want to help but know there wasn’t much I could do to help. But the depth of that feeling doesn’t come across very well in words.

So for caregivers, I would say: listen for the feeling the person talking to you feels and wants to convey – sympathy, encouragement, sadness, and so forth. Don’t worry about the actual words. For situations like this, they simply aren’t adequate.

For people talking to caregivers, I recommend simplicity. Caregivers are preoccupied with a million different tasks and emotions; sophisticated expressions are going to be lost on them. Instead, say something like, “You’re both being brave. I admire that.” Or “I know you’re both hurting, and I’m here for you in any way you need.”

What would be the top 3 pieces of advice you’d give to other caregivers?
First, be honest when people ask, “How can I help?” It took me a little while, but I got so I was completely unafraid to take people at face value – that they really did want to help – and tell them what I want. “Stay here with Susan for two hours so I can take my kids to a movie,” or “Mow my lawn.”

To my surprise, peoples’ faces would light up when I gave them something concrete like this. I found that people really aren’t making offers to help idly; they just don’t know what you most need.

Next, look for little ways you can improve your loved one’s life. As – thanks to tumors in her brain and a lot of pain meds in her system — understanding the icons on the bed remote became too confusing for Susan, I drew very simple icons on colored dots and taped them over the original icons. As a result, Susan regained a measure of independence for a time, and that felt like a win to both of us.

Third, understand what hospice can do for you well before you think you need it. Susan’s life would have been much more comfortable much sooner if we had gotten hospice involved earlier.

And fourth – I’m going to give you a bonus one here – you simply cannot tell or show your loved one that you care about and love her or him too often. Tell them whenever it occurs to you, and if the time comes that they can’t really understand words anymore, touch seems to show it just as well.

Thanks so much to Fatty for sharing his story with us and for showing us all the true meaning of the word “strength”.

Featured Commitment Maker: The Ormylia Foundation

2010-03-03T16:29:21Z

This week takes us to Chalkidike, Northern Greece where The Ormylia Foundation’s Panagia Philanthropini Center is making a profound difference in the lives of many underprivileged women living in remote communities in the area. Much of northern Greece is made up of hard-to-reach seaside and mountain villages where residents had no access to organized cancer screenings before the center’s creation. In response to this severe lack of access to care, the Center began providing free screenings to underprivileged women in 1991 and has since then also begun educational outreach.

In response to LIVESTRONG’s call for Global Commitments in the fight against cancer, the Ormylia Foundation formally committed to scaling up their outreach to groups that are acutely underprivileged- primarily Muslim religious groups (Pomaks, Romas and other Turkish speaking communities) from the former Soviet Union, the Middle East, Africa and Asia. Ormylia’s initiative is uniquely holistic, focusing on not only keeping women healthy, but advocating for their quality of life: “By detecting early-stage breast and cervical cancer, and subsequently employing less invasive treatment, this program will prevent the deterioration of the social web of these fragile populations, keeping women healthy and productive with a high quality of life.”

With a goal of scaling up their annual screenings to reach 35,000 women in the next five years, and with a 95% survival rate for women diagnosed, Ormylia is making an incredible impact on the lives of women who need their care.

LIVESTRONG proudly supports the Ormylia Foundation’s efforts, and we look forward to sharing their continued success.

Blog by LIVESTRONG staffer Rebekkah Schear and intern Lance Pyburn.

Don’t Get Caught With Your Pants Down

2010-03-02T15:54:12Z

LIVESTRONG is advocating for the use of electronic medical records and we want you to know why. E-records put you in control of your records, not a doctor’s office. Many folks have difficulty receiving copies of records and keeping them organized. Not having records available at your fingertips may also result in higher medical bills due to doctors ordering duplicate scans and unnecessary tests. The recent G.E. commercial sparked serious conversation at LIVESTRONG HQ. Watch the commercial below and listen to our response. Don’t get caught with your pants down. Take control of your own medical records. It’s your health!

G.E. commercial:

Our Response:

If you have questions about electronic medical records, call us: 1-866-673-7205. We can help you get your records in order and put you in control.

Sisters in Diagnosis

2010-03-01T15:32:50Z

Greetings from Atlanta, GA and the 10th Annual Conference for Young Women Affected by Breast Cancer.

I am so honored to be here representing LIVESTRONG. This is an incredible opportunity to share a number of programs such as LIVESTRONG at School and services like Survivor Care, and Sharing Hope that pertain specifically to this amazing group of young women.

I want to tell you a bit about my experience here so far. I have been gratified by the number of women who have stopped by the booth to thank LIVESTRONG for providing the Guidebook. Noting that it was invaluable during their journey.

I have been heartbroken by the number of women who wish that their doctor had discussed fertility and Sharing Hope with them prior to treatment.

And I have been rendered speechless by the young mothers who want information on LIVESTRONG at School, and our collaboration with PBS’s Arthur because they need help discussing their cancer diagnosis with their children.

I can never understand it when people tell me that I’m an “inspiration” to them…I just don’t get it. I’m simply doing what I have to do. But with each and every one of these women that I’ve met so far, all I can think of is how inspiring they all are. I am inspired, and also touched with sadness knowing all too well what some of my fellow attendees have endured.

During the opening session on Saturday morning, we paused for a moment of silence in honor of those that we have lost during the past year. The silence was deafening.

The days here have been filled with knowing smiles, caring touches and lots, and lots of fanning from hot flashes. Yup, as one speaker noted…we are all sisters in a sorority with the worst kind of initiation process.

The truth is that cancer sucks, plain and simple. It sucks that there are 700 young women at this conference right now who have been diagnosed with this horrible disease. Yet we celebrate life, we live strong… specifically with a dance party on Saturday night. We’re just simply doing what we have to do. We have to do “the chicken dance”.

We’re going to do “the chicken dance” in honor of all of the weddings we hope to attend in the future, of our children, friends, maybe even our own. Attitude is everything.

Thank you to the Young Survivor Coalition, and Living Beyond Breast Cancer for organzing this incredible event. Thank you to the other sponsors, and to those of you who donate to LIVESTRONG and made our support of this conference possible. And most importantly, thank you to my fellow survivors for standing proud, sharing your stories, and living strong. You are an inspiration.

Watch the Bipartisan Health Reform Meeting

2010-02-25T14:25:18Z

The Bipartisan Meeting on Health Reform will be broadcasting live at 10am EST and available on our blog. Please feel free to ask questions or comment below and please sign the petition explained below.

JOIN THE LIVE CHAT

VISIT WHITEHOUSE.GOV

Today, our elected leaders in Washington are gathering to continue their debate on overhauling a health care system that fails far too many Americans. We’re hopeful they do the work we elected them to do: break through the gridlock, work together and leave the partisan posturing at the door.

If we act quickly, we can take advantage of the national attention on health care to send a clear message to our officials. We just joined forces with the American Cancer Society and others to push a national call to action urging members of both parties to “come together quickly to pass a meaningful (health care reform) bill that improves access to insurance coverage and lowers the costs of care.”
We need 50,000 people to sign the call so that we can send a strong message to Congress. Will you please sign the petitionhelp by adding your name and also asking your friends and family to do the same?

Americans are tired of the political theater. We expect real progress and real reform from our leaders. The LIVESTRONG mission is to advocate for meaningful policies that support cancer survivors. Join us in sending a message to Washington they can’t ignore.
We need to pull together in this moment. Our voices were heard on both sides of the aisle last fall, but the shifting political landscape has made real reform more elusive than ever. But if we come together—in great numbers—we’ll be impossible to ignore.
Can you please take a moment to add your name to the national health care call to action? please sign the petitionYour voice could make a huge difference.

LIVESTRONG Attends World Health Organization Meeting

2010-02-24T18:19:00Z

Very cool stuff is happening internationally on the cancer front. LIVESTRONG was asked to participate by the World Health Organization in an international gathering focusing on non-communicable diseases. The purpose was to add momentum in strategically building the case for non-communicable diseases to be on the global agenda. Currently, that’s not the case.

Cancer is central to this effort – a tent pole – along with heart disease and obesity, as just two examples (and they are all potentially related as triggers). About 100 leaders worked over the 36 hours of meetings, developing strategic designs for how to push world leaders, governments, investors and global non-profits to acknowledge this need and reorient comprehensive patient care.

Meeting of Non-Communicable Disease Organizations

That’s a tall order in many underdeveloped countries. Health systems are weak, cancer is stigmatized and the capability for significant change very tough. Nonetheless, this is the right fight. It’s exciting to see LIVESTRONG at this table, hearing others refer to our Global Summit and overall work after 12 years. Efforts like these relate to our core mission in seeing an increasing global recognition for specific action in palliative care, adding more knowledge to the economic toll these diseases take and also demanding more robust prevention measures.

General Assembly Hall where all delegates met Princess Haia and Mathilde from Jordan and Belgium moderated along with Margaret Chan, head of WHO

More to come over the next few months.

LIVESTRONG,

Morgan