Monthly Archives: July 2014

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5 Tips for Long-Distance Caregivers

This week’s guest blog post is by the Cancer Support Community team. The mission of the Cancer Support Community is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.  As the largest, professionally led nonprofit network of cancer support worldwide, the Cancer Support Community delivers a comprehensive menu of personalized and essential services including support groups, educational workshops and social activities for the entire family at more than 100 locations and online. To learn more, call the Cancer Support Helpline at 888-793-9355 and check out the CSC blog.

When someone you love is diagnosed with cancer, it’s normal to feel at a loss for how you should react and what you can do to help. But when someone you love has cancer, and you live far away from them, it can be even more overwhelming and confusing. The term “long-distance caregiver” is often used to describe anyone who provides some form physical, emotional, spiritual, financial or logistical support to a person with a serious illness, despite living at a distance from the person needing care.

Despite being a long-distance caregiver, you still play a vital role in providing comfort, hope and support. There are several things you can do from a distance to ensure that your loved one has the support they need throughout their cancer journey.

  1. Evaluate the situation. Because you can’t always offer direct support, evaluate the situation to determine what you can actually do to help, whether it’s through phone calls, information gathering or assisting with long-term plans. You can adapt your actions as needs change.
  2. Create an emergency contact list. Since you cannot physically be present to provide direct support, make sure that there is a list of people who can help your loved one when needed. Work with your loved one and local caregivers to create an up-to-date list of phone numbers and email addresses for doctors, pharmacists, case managers, employers, support groups, friends, neighbors and family members. This list will help you to take comfort in knowing your loved one is cared for even when you can’t be there and will help lighten the load for other caregivers.Tips for caregivers
  3. Learn how to manage negative emotions. It’s common have feelings such as guilt, sadness or anger when there’s a difference between the care you would like to provide (like being able to be with your loved one during treatment and other important moments) and the real demands of your life, such as work or family commitments.  Some ways to avoid having these emotions cloud your decisions include admitting your feelings, finding someone else who can help your loved one, planning a future to be with your loved one and taking time to care for yourself.
  4. Provide special care when visiting. When you do get a chance to visit your loved one, it is helpful to be prepared. Sometimes the purpose of the visit could be to provide company and emotional support, while other times it may include taking part in important meetings or decisions.  Maintaining open and honest communication about when you can and cannot visit and what you can and cannot accomplish during visits can help you to have a smooth and enjoyable time with your loved one.
  5. Use your resources. There are many resources available to your loved one as someone living with a cancer diagnosis, and to you as a long-distance caregiver that can make your journey easier. Resources range from emotional support to educational support to financial support. Don’t hesitate to use any of these resources to help ease the burden on yourself and your loved one.

Acting as a long-distance caregiver can be a very complex and unique situation, but you’re not alone. If you or your loved one ever has questions or feels overwhelmed contact the Cancer Support Helpline Mon-Fri 9 a.m.-8p.m.  For more helpful tips check out Frankly Speaking About Cancer: Long Distance Caregiving.

 

“The Talk” – Talking to Kids about Cancer

This week’s guest blogger is Robyn Stoller from Cancerhawk.comAn inspirational blogger, patient advocate and “cancer matchmaker,” Robyn Stoller created Cancerhawk.com to guide people through the cancer experience and help them avoid the frustration she and her late husband went through while navigating his disease. Her relentless patient advocacy has helped to uncover hundreds of resources – ranging from financial and travel assistance to incredible survivorship and support networks to cutting-edge research that might benefit a particular person’s cancer. She now shares this information and advice with others through Cancerhawk.com, connecting cancer patients and caregivers to a wealth of resources and organizations that offer assistance to anyone touched by cancer. “You can’t Google something if you don’t know what you are searching,” she says. Robyn has also co-founded a nonprofit research organization, Peregrine Cancer Foundation. You can connect with Robyn on Twitter and Facebook.

Telling our children that Alan had cancer was one of the most difficult things Alan and I EVER had to do. At the time, our children were ages 10, 8 & 5. We knew that our older two kids would know enough about cancer to wonder if Daddy was going to die. And our youngest would be smart enough to watch the reactions of his siblings to see if this was something he should worry about. Knowing this dynamic, we decided to do some research and speak to several experts before having “the talk” with our kids. How do you really tell your children that one of the most important people in their lives has cancer?

Give them the lowdown: This situation has a name and it’s called cancer. Use the word “cancer” when describing your illness. The amount of detail you give and the specific words you use will depend on the age of your children. If you are talking to children of different ages at the same time (which is how we handled it), speak in terms that the youngest one will understand. You can always have additional conversations with the older children if necessary.

Stoller Family

The Stoller family pictured in the summer of 2009 – shortly before Alan was diagnosed with pleomorphic rhabdomyosarcoma.

Be honest: Although Alan and I were tempted to downplay the seriousness of this situation we knew this could damage the trust we had worked so hard to build over the years. Throughout the entire process, we were honest yet optimistic which actually brought the kids tremendous comfort.

Make no promises or guarantees about the outcome: We all want to promise our children that we will never die. But this is not realistic nor is this a promise we can keep. We told our kids that we believed Daddy would be healthy again… and that our doctors were doing everything they could to get the cancer out of his body. But that was all we could promise.

Cancer isn’t contagious: I was shocked by the myths my kids had heard about cancer. Did Daddy catch it from someone? Did he do something to cause the cancer? Since Daddy had cancer, did that mean they were going to get it too? Set the facts straight.

Good news travels fast; Bad news travels faster: It’s important to let the parents of your children’s friends and school teachers know what’s going on. You should also assume that any email you send out, post you write on a personal blog or conversation you have will be forwarded or repeated to the world. Let’s face it… people are concerned about you and they talk. Remember, just as with any story, all the facts may not be repeated in a manner you approve. So be careful what you put out there. On several occasions, our kids came home asking questions because they had overheard others talking about our “situation”. One other piece of advice- if there is news to share- either positive or negative- tell it to your children first.

Set expectations: Kids tend to do better when they know what to expect. Discuss the likely side effects of your particular treatments (hair loss, nausea, fatigue) and how it will affect them. This meant that Daddy may not be at all of their sporting events or that he might not be able to tuck them in every night. It also meant that at times, friends and other family members would be living with us to help out.

Keep in mind that you don’t have to tell your children everything at once. If it appears that your child is not coping well, get help.

Many cancer centers and local support groups have therapists on staff who can advise you. In addition, your pediatrician may be able to recommend a child psychologist or family therapist who has experience in helping children cope with cancer.

TellingKidsAboutCancer.com is also a super informative website and tool that offers step-by-step suggestions and advice on this very subject. You can even listen to interviews with parents and children sharing specific advice about their experiences with cancer.

A diagnosis of cancer affects everyone in the family. Your children may ask questions right away or they may need time to digest what you’ve told them. Let your children know you are there for them. Reassure them of your love. And move forward one step at a time.

Meet Lee – A Golden Retriever’s Dog Cancer Story

To say that an 80-pound blond, overly happy, obnoxiously loving, bouncing ball of fur is the alpha and omega of my life is probably an understatement. Meet Lee, my seven year old golden retriever whom I adopted at eight months old from a family who could no longer handle his energy or mischievousness. And for reasons that only make sense to 19-year-olds, these normally alarming attributes only made me more excited to adopt him, and little did I know what an impact he’d have on my life. Lee

To summarize what the last seven years with Lee has been like would be like writing an adventure novel with a “choose your own adventure” feature that he seemed to take quite liberally. He has accompanied me on almost every trip I’ve taken; road trips, beach weeks, holidays and family occasions. And has also been there throughout college and graduate school and my move from the east coast to Colorado about a year ago. The mischievousness quality his original owners warned me about was in fact a real thing.

To list all the hilariously naughty acts he’s committed or outrageous things he’s consumed could be an entire chapter but I’ll name a few for humor’s sake; the list includes (but is not limited to) a Costco size bottle of Aspirin, a couch (because what else would you do when your tennis ball rolls underneath it?), a pin ball full of sewing needles, rolls of dimes, a pantry of food, bags and bags of dog food, countless baked goods, a seven layer cake that you guessed it—took seven hours to make, and the list continues.

My brother calls him the “tank” and for good reason. He’s survived numerous diseases, including Rocky Mountain spotted fever, hypothyroidism and SARDS (Sudden Acquired Retinal Degeneration) – the last of which has left him permanently and completely blind.

To say his life was full and happy would be an understatement, it seemed like nothing could stop him and he was ready to tackle whatever life threw at him; which was good because he was about to get a whammy. Like most people diagnosed with cancer will tell you- nothing prepares you for a diagnosis and it hits you like a mac truck on steroids.

Maria and LeeOn a standard Saturday afternoon drive to a dog beach, my brother noticed a large blue lump on his neck that we hadn’t seen before. After a visit to the vet, a biopsy was needed. Suddenly a dog that could tackle any curve ball was facing the unknown world of tumors and tests. And then the waiting game; 5-7 days for biopsy results. This should be a form of cruel and unusual punishment because I ended up spending those days googling what it could be and learning more about oddly colored tumors on canines that most people need to know in a lifetime.

And then the results – a form of Melanoma caused from direct sun exposure that had spread into an aggressive form of Sarcoma. Without missing a beat, I knew surgery was needed. A four hour procedure and 12 stitches later the surgery was a success. Further tests showed his amazing vet got clean margins so, for now, no other treatment was needed.

Lee dominates the majority of my social media content, partly because my existence on earth doesn’t even compare to the hilarity of his life and he seems to have a cult following of his adventures—so the natural step was to post the news online.

I was suddenly inundated with phone calls, Facebook messages, Instagram posts and texts from all my friends and family from around the country. The love and support I felt was unreal but as a staff member of MyLifeLine.org, I suddenly realized why what we do is so important. To explain his story, the surgery, the results, how he was doing now, if I needed anything, what the kind of cancer was, etc. to everyone individually was exhausting and I was worried I wasn’t giving each concerned, caring friend the attention to explain things thoroughly.

What Lee went through with his cancer experience is small compared to what humans face when diagnosed with this disease, but it showed me how vital MyLifeLine.org can be for a patient and their caregiver. To relieve the burden of communication also relieves any guilt, responsibility and stress of explaining every step of one’s journey, and allows the information you only have to explain once to be organized, factual and thoughtful.

Lee is now back to his bouncing, obnoxiously happy self and can officially add dog cancer to the list of diseases he’s tackled and I can say I have a greater appreciation for the work of MyLifeLine.org and how its practical service can change one’s cancer experience for the better.

Check out MyLifeLine.org’s 2013 Annual Report

The past year was an exciting one for MyLifeLine.org. In 2013, we reached 193 countries, surpassed 100,000 users and provided a place where thousands of messages of love, hope and inspiration were shared. We celebrated our sixth anniversary in 2013 and have continued to grow our resources to ensure that everyone affected by cancer feels supported through their experience.

Our annual Jockeys, Juleps and Jazz event was the most successful event yet, thanks to the event’s sponsors, guests and all of the volunteers who made it possible. More than 400 guests in their finest derby attire attended the event, which raised over $275,000. The evening was filled with live and silent auctions, a festive jazz band, the live simulcast of the Kentucky Derby, and of course, the event’s signature mint juleps.

MyLifeLine.org also saw an upward trend in social media use. We shared photos of support in a unique initiative we call “Ribboning.” Ribboning is accomplished by standing with your hands circled over your head and feet planted wide to mimic the shape of a cancer support ribbon. We received photos from around the country and even around the world, including Afghanistan and Antarctica.

Throughout the year we continued to focus on providing completely free, private websites for cancer patients and caregivers, making it easy for communities to come together to show their support. Of course, we wouldn’t be able to provide our services without the continued dedication of our many donors and volunteers. Thank you for helping to make a difference for people affected by cancer.

We invite you to see more of MyLifeLine.org’s accomplishments in 2013, by checking out our annual report and reading about our year in review!

 

MyLifeLine.org Makes Connections Through Cancer Conferences

Highlights from the Association of Oncology Social Work (AOSW) Cancer Conference

MyLifeLine.org recently attended the Association of Oncology Social Work (AOSW) conference in Baltimore, MD. AOSW is a non-profit, international, 501(c)3 organization with over 1,000 members from around the world who are committed to advancing excellence in psychosocial care of persons with cancer, their families and their caregivers. This important conference allowed MyLifeLine.org to directly connect with over 500 oncology social workers and other Patient Advocate organizations who directly serve those affected by cancer.

MyLifeLine.org staff at their AOSW booth

MyLifeLine.org staff at their AOSW booth

As booth exhibitors at this conference, we had the opportunity to educate over 500 oncology social workers about the psychosocial services provided by MyLifeLine.org and were able to get educational materials in the hands of those who are directly connected to cancer patients.

MyLifeLine.org networked with other Patient Advocate organizations including Patient Access Network (PAN), Ulman Cancer Fund, Triage Cancer, The 4th Angel Mentoring Program and Cancer Support Community and learned more about what those organizations have to offer cancer patients, caregivers and families affected by cancer.

MyLifeLine.org Founder Marica Donziger reflects on American Society of Clinical Oncologists (ASCO) Cancer Conference

Every first weekend of June in beautiful Chicago, ASCO (American Society of Clinical Oncologists) hosts a monumental conference.  This year marked the 50th annual conference.  Thirty thousand oncology professionals converge into McCormick Convention Center for ONE core reason…to make a difference in the lives of people affected by cancer.   While the majority are physicians – 50% from the USA, 50% from other countries, it’s quite the international experience.  In addition to doctors, there are thousands of others including researchers, industry professionals, patient advocates, and more.

MyLifeLine.org Cancer Foundation exhibits in the Patient Advocate center – this marked our 7th year participating in order to bring awareness to all attendees about the significant social-emotional stress that cancer drives into a family after a diagnosis and the solutions we provide.   At ASCO, we reconnect with partners and advocate organizations to become educated on how we can all strive for efficiency and effectiveness.  ASCO has become a critical cornerstone for all cancer advocates to come together and learn about new advancements in research and support programming.

Every year, I’m in awe of tens of thousands of people serving the cancer community.  It’s really inspiring…MyLifeLine.org will continue to stay involved and active to make sure our program is relevant and beneficial to the families we serve daily.

Why you might not want to post cancer treatment updates on Facebook


Studies have shown that people who have a strong personal support network during their treatment have an increased chance at better outcomes. Some doctors suggest that support from friends and family can be as important as medical treatment when it comes to cancer outcomes. Finding a way to connect with your friends and family during your cancer journey without having to personally email and call each one of them is something that makes sense and Facebook can be a great place for that. However, you should be aware of a couple things before making the decision to post cancer updates on Facebook.

Should you post about your health on Facebook?Facebook has permission to toy with your emotions

Unless you’re a particularly diligent attorney you probably didn’t give the Facebook terms of privacy and service a close read when you signed up, but you should still understand that you’re giving some things away for free when you agree to these terms. For example, you could be an unknowing experiment participant. Facebook recently published a study that said they were able to manipulate people’s moods by controlling what was shown in individual’s news feeds. Facebook randomly selected 690,000 people to be shown more negative or more positive posts. People shown more negative posts were somewhat more likely to post negative things themselves, people shown more positive posts were somewhat more likely to post positive things.  When you’re going through a traumatic life event like cancer, extra negativity can be fatiguing and although the experiment was conducted in 2012 your agreement to their data use policy means they can continue to use your data, for testing and research.


Facebook can use your content free, wherever it wants

Another element to keep in mind when you agree to the terms of service and privacy policy on Facebook is that you are also agreeing to allow them to use your content and photos, for free, wherever they want. You still own the content, but they have a license to use it and you can’t fully control where and how they use it. When it’s a pretty photograph of a sunset, this might not be worrisome, but when it’s a personal picture of your post-surgical condition you might want more control of your content.

Free, personal, cancer specific, alternatives to Facebook exist

There are better alternatives to posting cancer updates on Facebook when it comes to communicating with friends and family about your cancer journey. MyLifeLine.org gives you control over your content, the terms of service state that you retain all ownership rights to anything you post. It also has additional features, such as an online calendar where you can request and coordinate volunteers for meals, rides and anything else you might need. This gives you a way to centralize your communications without having to email and call each person, and it also allows you to set your privacy to a level you feel comfortable with.

If you use Facebook as your means of communicating with your friends and family about your health, we recommend you be aware of what you’ve agreed to. Giving your personal community of friends and family a way to support you during your cancer journey is important, it’s possible it will improve your outcomes. MyLifeLine.org believes in the power of this support, but we also believe you should have control over your own information.