Understanding the impact of cancer on caregivers

caregiver webinar imageWhether you love this holiday or completely despise it, Valentine’s Day is this Saturday. If you’re a person who loves Valentine’s Day, this is a day to celebrate love and companionship. But when your Valentine is living with cancer and you’re acting as the caregiver, this day can take on a deeper and more complex meaning. Caring for a spouse can be extremely challenging. According to the National Quality of Life Survey for Caregivers, a caregiver spends an average of eight hours a day providing care and support to their loved one, and many caregivers feel just as much distress, if not more, than the patient does.

Whether it’s Valentine’s Day, or just a typical day, the Cancer Support Community is committed to providing support and resources to caregivers, so they can provide support to their partner.

The Cancer Experience Registry: Caregivers, is just the latest example of CSC’s commitment to understanding the impact cancer has on caregivers. This project is an expansion of CSC’s Cancer Experience Registry, which, since its launch, has collected over a million data points on more than 7,500 people who have had cancer. Similar to the patient Registry, the Cancer Experience Registry: Caregivers will ask caregivers a series of questions about their experience and will connect them to a network of support.

“For decades we have known that cancer impacts not just the people who are diagnosed, but those caring for and about them as well,” said Kim Thiboldeaux, CEO of the Cancer Support Community. “The registry for caregivers will help identify the unique challenges of this community and create better resources to address their needs.”

One recommendation CSC often makes to caregivers is to have their own support system in place—people who you can lean on for support, and who know just how you feel. This new Registry will be able to act as a support system for caregivers by allowing participants to compare their responses to survey items with other members of the Registry and be part of a community of caregivers.

“The Cancer Experience Registry: Caregivers is more than just a research project-it is also a community where people can listen to the stories of others and find professional and peer support when they need it,” said Joanne Buzaglo, Ph.D., Senior Vice President of Research & Training at the Cancer Support Community.

To join this exciting new initiative and make your challenges as a caregiver known click here, and click here for more information about the Cancer Experience Registry: Caregivers. Also, tune in to this week’s special episode of Frankly Speaking About Cancer to hear more about caring for your spouse on Valentine’s Day, and every day.

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Remembering that cancer is “not beyond us”

CER report front coverToday is World Cancer Day, an opportunity to raise awareness of cancer and its impact on local communities all over the globe.

This year’s theme is “Not Beyond Us.” This tagline can be interpreted and applied in a few different ways. One idea that came to my mind is the impact that cancer continues to have even after a person is finished with treatment. Life doesn’t just go back to normal. Cancer survivors are often faced with challenges even after they’ve been declared cancer-free.

Many worry about the possibility of recurrence—they’ve even coined the term “scanxiety” to describe the emotions leading up to follow-up tests, such as X-rays, CT scans and MRIs. Many cancer survivors also experience long-term side effects of cancer and its treatments, such as neuropathy or chronic pain.

If you have completed cancer treatment and are experiencing challenges adjusting to life after cancer, the Cancer Support Community’s Helpline at 888-793-9355 is a good place to start to get support. You can also learn more about cancer survivorship on our website.

The Cancer Experience Registry is also a great opportunity to give back to others going through cancer by sharing your experiences. You do not have to be finished treatment in order to join.

With nearly 14 million cancer survivors living in the U.S., chances are you probably know someone who has had cancer. This World Cancer Day, take a moment to learn how you can support yourself or someone you know, and join the conversation on Facebook and Twitter by using the hashtags #WorldCancerDay and #NotBeyondUs.

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Advice for the newly diagnosed: Tips for you, by you

happy senior coupleGetting advice (whether you wanted it or not) happens almost daily—from friends, family members, doctors and even well-intentioned strangers. This is especially true when there is a cancer diagnosis. But sometimes, the best advice is the advice you wish someone would have given you.

On several occasions, we asked our Facebook followers to share with us what advice they would give to anyone who is just beginning their cancer journey. Below are some of the amazing and inspirational responses we have gotten so far.  Take a look—it just might be what you needed to hear today!

  • “Remember you are different, and your cancer story will be different. Take the horror stories with a grain of salt and know that your story will more than likely be nothing like the ones you hear.” – Sandra
  • “…Write a diary or journal every day. Even on the worst days. Because that way you are able to see how strong you are. And how far you’ve come.” – Barbara
  • “Exercise every day, and SMILE! Both have healing powers – physically and emotionally.” – Diana
  • “Get informed. Learn about the type of cancer, it’s treatment options, and how it applies to your specific situation. Build a strong support system. You are going to need it…Stock your freezer with make-ahead meals. You will be glad you did. And always remember…. this is not the end. It’s only the beginning of a new way of life.”- Sharon
  • “Once you hear the diagnosis expect a few days of shock—not knowing what to do or who to listen to—just plain having your world turned upside down. Then a routine will develop once a treatment plan is started…you have a new normal for a while.” – Connie
  • “…Things will probably never be the same as your pre-cancer diagnosis days, but you can learn to roll with the punches. It was my husband who had the cancer, but I like to remind people that I am a “survivor” too.” – Claudia
  • “Ask questions until you get an answer you understand!” – Carla
  • “Your diagnosis is NOT your fate.” – Gerry
  • “Get you, your caregivers, and your loved ones involved in a patient advocacy organization for your type of cancer, especially if a large national organization exists for that cancer…” – Pancreatic Cancer Research News
  • “Humility is a hard pill to swallow. Don’t be too proud to accept help, in whatever form it may be.” – Danny
  • “My husband is on a few meds I researched myself and asked for. You wouldn’t think a person would have to do such things. But I did and it has helped him!” -  Annette
  • “All will be well, stay positive and build a great support team around you…Put your energy into positive thoughts and not into anxiety. Live life to the fullest!” – Dave

Do you have your own advice to share? Take a look at the original conversation and comment with your own advice, and join the Cancer Experience Registry to share your own journey with cancer.

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Support from a distance- 5 tips for long-distance caregivers

Helpline ManIn the United States, families are often spread all over—sometimes on opposite coasts or in opposite climates. This can present challenges when someone in the family is diagnosed with cancer and everyone can’t be where they want to be at once.

Often, long-distance caregivers may feel guilty for not being there in person, struggle with coordinating support for their loved-one or worry about emergency situations.  It’s important for these far-away loved ones to remember that they are not alone—In fact, it is estimated that 7 million people in the U.S. are long-distance caregivers. Many of these people are family members of someone with cancer—daughters and sons, brothers and sisters, nieces and nephews.  Below are a few tips for supporting your loved one and yourself even when you can’t be there physically.

1. Set up a time to talk to your loved one about what they need and be honest about what you are able to do. After the initial cancer diagnosis, the situation may be very busy and stressful. However, once your loved one has started treatment, it is a good idea to have a conversation with them about their concerns and what they need during this time. Although it may be difficult, it is also important to be honest and realistic about what you are and are not able to do due to distance. That way, you or your loved one can find someone else to help in those ways.

2. Get in touch with people who live near or routinely see your loved one with cancer. One of the greatest worries long-distance caregivers often have is that they won’t know when an emergency situation occurs. Exchange contact information with someone living close to your loved one, such as a family member, friend, doctor or neighbor  who can notify you immediately.

3. Plan for an emergency ahead of time. In addition to creating a plan for being contacted in case of an emergency, it is also important to plan who will be able to help your loved one with short notice in terms of an emergency. This way, both you and your loved one will know that they will have immediate support in case of an emergency, even if you are unable to be there in person.

4. Set up a way for all those supporting your loved one to keep in touch. This can help organize what still needs to be done and prevent your loved one from being inconvenienced by too many people around. This can be done in any way that is convenient for your group—phone calls, email threads, social media, or websites specifically designed for this purpose, such as CaringBridge or MyLifeLine.

5. Make sure you care for yourself. All caregivers need to care for themselves as well. It may be easy to forget this when you are a long-distance caregiver because you are not actually seeing your loved one on a regular basis. However, self-care is just as important. Make sure you take time for yourself and realize that it is okay that you are not there in person. You can also call the Cancer Support Helpline anytime for emotional support or refer it to other caregivers in your loved one’s life.

For more information, listen to Cancer Support Community’s radio show on long-distance caregiving and other caregiving resources.

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When the weather outside is frightful

SquirrelSnow, wind, ice, freezing temperatures—all things that will send this Southerner into a blind, snow-hating panic. During the winter months, this is a regular occurrence for me, as I scramble to learn exactly how you’re supposed to cope with a real winter and all of its unpleasantness.

Part of coping with winter is being prepared to ride out winter storms indoors when the roads aren’t safe to travel.  For people who are touched by cancer, this can require some extra preparation to make sure you stay safe, relaxed and avoid illness. Below are a few things to remember on cold, snowy days.

Check your medications
Snow can be hard to predict. What’s supposed to be a “light dusting” can wind up being a three-day ordeal of being stuck indoors with no way to get to your pharmacy or physician’s office. Talk to your health care team to make sure you can have back-up medications prior to bad weather in case you run out during a winter storm.

Have a list of emergency contacts
Create a list of different contacts you can keep on hand in case any need should arise. In addition to having contact information for your health care team, it can also be helpful to have a few neighbors you can call to check on you, make sure your heat is working, your walkway is clear, you have clean water, etc.

Stay warm
This seems like a no-brainer, but for someone living with cancer, staying warm is especially crucial. Several common side-effects can make you more sensitive to the cold, which can increase your risk for hypothermia. To avoid hypothermia, try to keep your head covered with a hat or scarf (even indoors), make sure you have an alternative source of heat in case you lose power and stay hydrated.

Avoid the “winter blues”
A few weeks ago we wrote a blog on avoiding depression during winter months, which you can read here. When you’re snowed in it can be hard to avoid being sedentary, bored or even sad. Find something to pass the time, whether it’s a recreational activity, a good book or a chat with a close friend. Getting plenty light can also help boost your mood, even if it’s not direct sunlight.

If you’re ever snowed-in and need additional support, don’t hesitate to call the Cancer Support Helpline at 1-888-793-9355 for information on local resources, to get connected to an in-person or online support group, or for emotional support.

Do you have your own tip for staying healthy and safe during bad weather? Weigh in on our Facebook page!

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