My Loved One Has Cancer

Creating Your Own Space As a Cancer Care Giver

Often when you are focused on taking care of someone else, you forget about yourself. It's easy to think of everything your loved one might need or what might make them feel better. It's just as easy to lose track of yourself. To maintain your own health, you need to focus on yourself, even if it is for just 15 minutes a day.

One way to help you focus on yourself is to create a personal space...just for you. A space that reflects your own personality, needs, and tastes. It can be a corner of a room or a separate room, depending on where you live and what your family's needs are.

Fill your space with anything that gives you joy and inspiration. It should be appealing to you -- inviting, quiet, and comfortable. Don't be afraid to be resourceful and creative....you can always make changes!

Here are some ideas to get you started:

Music: Listen to your mood and play something to honor where you are. Don't always fall into the same habits of playing the same type of music. Music has a profound impact on our moods and outlooks....use it to enhance yours.

Make it comfortable: Your personal space offers you a place to read, listen to music, do some stretching or meditation, or just sit quietly and relax. Consider a fouton, day bed, or reclining chair so you have the option of how you use a space. Make it really comfortable with lots of pillows and blankets.

Keep it natural: If you can, choose a space that has natural lighting. Being in touch with the world outside, on whatever level, always helps. Bring outdoor life into your space. Plants and flowers are both uplifting and add color.

Scrapbooking: Take some time to dig all those photos out of the drawers and make them into an album. It sounds like a chore, but re-visiting friends, family, and travel is always fun. There are now electronic photo frames that rotate photos in them as well.

Scents: Scented candles, incense, essential oils, and atomizers can play a vital role in enhancing your mood, and even transporting you to a favorite place or cherished memory. Scents are often recommended to enhance a meditation experience as they have calming and soothing properties.

Bulletin Board: You can post anything that makes you feel good.... Photos, cards, keepsakes....anything that makes you think of happy times and sharing them with the special people in your life.

Your personal space is a reflection of your needs during this time. It can, and will change....and that's part of the fun. Just focus on what motivates you, inspires you, and makes you feel good in that space right now.

Decreasing Pesticide Use in Your Food

Along the same lines as my last post, here's a great little chart that ranks produce for pesticide content. Apparently, you can lower your pesticide exposure by buying 90% organic for the 12 worst on the list! The attached chart has the worst 12 and the best 12 and is a great reference.

Using Less Toxic Products

After my husband's cancer surgery I really went through not only our food choices, but our product choices as well. Here's a great site I thought would be helpful that guides you through choosing and using less toxic products.

Cancer Coaches : A new approach

Interesting article on Yahoo yesterday about the use of Cancer Coaches. While some coaches will try to help you and your loved one evaluate cancer treatments, most will help you navigate the healthcare and insurance system, evaluate alternatives, and help you communicate with family and friends.

We used a "Nurse Navigator" when starting the treatment process and she was invaluable. She saved us so much time and energy in understanding the choices and resources available to us. (Who knew massage was covered under our insurance as part of recovery treatment!).

Ask if there are coaches available to you as you evaluate all steps of the treatment and recovery process. They'll support you and ask questions you probably hadn't even thought of. Anything that can make this journey easier will help you!

In Defense of Food by Michael Pollan

Written by the author of the Omnivore’s Dilemma, Michael Pollan discusses the importance of eating real food, mostly plant based. In an age of fast food and processed food, it truly is becoming more difficult to eat “real food”..... especially if you eat out!

We changed our diets dramatically after my husband’s cancer diagnosis, and continue to fine tune our diets as we learn more. I’ve realized what a difference eating real food has made in my life….I have more energy, it’s consistent throughout the day and I no longer have to watch my weight. I no longer drink caffeine, and I just feel more balanced. I don't know that we would have changed much without the cancer diagnosis, so it's great that there's been an upside to this change in lifestyle!

General Cancer Resources

One of my jobs with cancer was the research end of everything.

To help you, here are the top rated general cancer sites. They will have links to specific cancers, overviews on the latest treatments available, and tools to help you make informed decisions about your loved one's health care.

American Cancer Society is a national, community-based organization that focuses on research and education, but also provides some patient services.

Cancer Care is a national organization that helps cancer patients and their families find support and information. They offer one-to-one counseling and group educational sessions over a toll-free help line and they help patients locate local support.

Cancer Consultants is dedicated to providing the most up-to-date news and information on cancer treatment, side effects, support, resources, and clinical trials to help cancer patients and their families make informed decisions.

Cancer Dictionary The National Cancer Institute's complete online cancer dictionary....a thorough and wonderful resource.

LiveStrong has many resources for specific cancers, and focuses on survivorship and quality of life. This organization actively promotes research, and survivor involvement.

People Living with Cancer is a patient information web site of the American Society of Clinical Oncology (ASCO). They provide oncologist approved infromation to help you make informed decisions. This site provides comprehensive information for over 85 types of cancer, and also provides coping resources, research, daily cancer news updates, a series of online events, and much more.

Balancing Work and Caregiving

It's common in caregivers that have full-time, or even part-time jobs to feel stressed and torn between their job and caregiving. Here are some tips to help reduce that stress.

Be Up Front With Your Employer

Be honest with both your supervisor and the human resources department (if you have one) about your caregiving situation. Don't apologize or offer excuses. Be ready to discuss any changes they may note in your availability or schedule. Be honest about the needs of your family, and discuss why you may need to not take on any additional responsibilities or even travel. Ask about the company's policy for caregiver support (even if you don't need time off now, it's good to know ahead of time). And be sure to check out your state's Family Leave Act to see if you qualify.

Offer Suggestions

Once your employer understands your situation, they'll be much more likely to work with you. Come prepared to your meeting with suggestions that will help you....for example working from home a portion of the time, developing flex time (coming in early or staying late on days you need flexibility), or taking longer lunch hours to help your loved one with appointments or follow up on outstanding issues. Your employer may have additional options for you. They often offer resources in terms of sick days, vacation days, comp time, and in cases of crisis, your colleagues may be allowed to donate accrued time to you. It's worth a discussion!

Ask for Support

Don't be afraid to ask for help. Colleagures, friends, family, and church groups are often eager to assist -- they often just don't know how to help or what you need.

Ask someone to help you look into respite care so you have support if you need it while at work to have time for yourself. There are many community, local, and national resources to support you in this. You can start with he National Family Caregiver Association is an excellent place to start. If you need to, you may be able to utilize The Family Medical Leave Act (FMLA), a national policy that guarantees covered employees 12 weeks of unpaid leave each year to care for a seriously ill family member while ensuring job security.

Self-Care

Caregivers often become depressed and depleted of energy. In order to give your best, to yourself and others, you must take time daily to take care physically, mentally, and spiritually.

Physically: Eat healthy and well-balanced meals regularly. Exercise every day, even if it's just taking a short walk. Use relaxation or stress management techniques, such as meditation, visualization, journaling and yoga. Schedule time for this every day or it probably won't happen.

Mentally: Acknowledge your own feelings around the cancer journey. Vent to family members, a counselor, or friends, not coworkers. Stay actively involved with friends and hobbies. Create a support network and/or join a support group.

Spiritually: Take time, even as little as 15 minutes per day, for prayer or meditation. Read or subscribe to inspirational magazines, newlsetters or books to keep yourself inspired and uplifted. Consider seeking the counsel of a minister in your community.

Following these tips will help you take care of your job, your loved one, and yourself -- all of which are important.

Happy Thanksgiving!

Between caregiving, working, cooking, taking care of the house, and general life issues, it often seems overwhelming to cancer caregivers to find the time and energy to participate in the holidays, never-the-less host a holiday events!

Here are some ideas for meals that will help you have a wonderful, memorable, stress-free holiday:

1. Ask for help

People most often want to help, but don't always know how. Ask friends and family to help with the cooking....go with a potluck and ask people to bring something that they do well. Ask folks to bring a variety of side dishes. This way you'll cover a wide range of tastes. Be specific on what you need...ie "enough pumpkin pie and ice cream for 8 people". It's less stress for everyone, and it makes for a fun and memorable meal that all will enjoy and talk about. (And don't be shy about asking for help cleaning up either!)

2. Order out

If you're shy about asking for help, consider ordering out or having a meal delivered. Grocery stores and local restaurants often have reasonable ready-to-serve options, and the cost is well worth the time and energy you'll save.

3. Build on a foundation

Don't worry about taking the semi-homemade route. I often start with a store-bought gravy or salad dressing, and enhance it with my own spices and blends. Remember, the key is not to get overwhelmed. This route still allows you to be creative and personalize if that's rewarding for you.

4. Make a new tradition

There's no hard and fast rule about only eating turkey! Don't get stuck in tradition if it causes stress. One of our best Thanksgivings ever was eating homemade pizza in a boat....enjoying the nice weather and each other. That Thanksgiving made memories we talk about years later....because of the food and the experience!

5. Start ahead of time

No matter what route you take, advance preparation is a must. When I write down and figure out the logistics ahead of time, I'm a lot less frazzled before and after a big event!

When it comes to decorating, use what's available. Use backyard plants or seasonal flowers and seasonal vegetables to decorate the table, and for use throughout the house. It doesn't have to be complicated! While I respect Martha Stewart's creativity....it often seems overwhelming to me. But she's a good place to look to for creative ideas!

However you arrange your holiday meals....run with it, enjoy it, and remember what the holidays are really all about....spending time with friends and family and creating joyous memories.

Taking breaks -- A must for cancer caregivers!

Most caregivers just want a break....even if they're not in a full-time caregiving situation. Although a vacation would be nice, a break can be as simple as visiting the coffee shop, visiting with friends, going for a walk, lying on the couch listening to your favorite music, going to an exercise class or even getting a manicure. Anything that makes you feel better and takes your mind to a different place is both necessary and stengthening.

Whatever you do on a break, regardless of its length, is up to you. Think about what would meet your needs, release stress, and renew your spirit. Whatever activity you choose needs to be for you, because you do so much for your loved one, and you deserve it.

Don't even think about feeling guilty for taking breaks! Your loved one will benefit as well. Focusing on you by taking breaks is guaranteed to take the edge off your stress level and renew your energy.

How are you going to plan a break today?

Resource Site for Cancer Caregivers

Great news, the My Loved One Has Cancer web site has launched.

As part of my own journey as a caregiving spouse, I have assembled a wealth of information that has helped me and will help other partners and spouses of cancer patients.

The site includes articles, worksheets, how-to’s, resource links and discussion groups -- all developed specifically for spouses and partners ....so you can support your loved one, and yourself, through the cancer journey.

Stop by and let me know what you think!

Great Book for Families Dealing With Cancer

Author / Humorist and 13 year breast cancer survivor Christine Clifford Beckwith wrote Our Family Has Cancer, Too! with the help and insight of one of her sons.

This book focuses on children's issues around cancer. It features a wonderful "Questions to Ask" section that invites children to write down their questions for parents, doctors, teachers, and anyone else they wish to speak to.

The book also contains a glossary of the most common words kids might hear when someone in their family has cancer.

Christine's book also offers the opportunity for families to address and answer the questions most kids have, including:

- What is cancer?
- What changes will happen to our family?
- What are the treatments like?
- How long will it take to get through the cancer experience?
- What do I tell my friends?

As is the focus of all of Christine's books, it teaches families and all of those touched by a loved one's cancer how to laugh together.

Additional Insurance Resources To Check Out

The other day I did a post on tips for Navigating the Insurance Maze -- along that line here are several sites that will help you understand and navigate the insurance questions that you will face. You should also check with your doctor / hospital and inquire about their advocacy programs in support of insurance questions and follow through.

The Georgetown University Health Policy Institute has written A CONSUMER GUIDE FOR GETTING AND KEEPING HEALTH INSURANCE for each state and the District of Columbia -- fifty-one in all.

Centers for Medicare and Medicaid Services (CMS) provides insurance through the Medicaid and Medicare insurance programs and policies.

National Insurance Consumer Helpline helps consumers understand different types of insurance coverage and find health insurance and offers referrals to other insurance-related organizations. 800-942-4242

Patient Advocate Foundation provides cancer patients with help dealing with insurance coverage, managed care coverage negotiations and legal intervention for insurance issues through a National Legal Resources Network.

Cancer Consultants helps break down the insurance terminology and gives helpful tips.

Learning to Navigate the Insurance Maze: One More Way Caregivers Can Help

Most cancer caregivers don't have a good idea of what their loved one's insurance covers until the need arises. And then we have to learn to be proactive in working with doctor's and hospitals to make sure charges are covered before they are incurred.

Insurance, claim and bill management can be a very frustrating process. It's important to recognize that most hospitals, doctors offices, and treatment centers will provide an advocate or insurance services representative to assist you. You should always ask who these individuals are, and ask them for assistance. They usually have a more comprehensive knowledge of the insurance system and often provide insight and recommendations that you might not be aware of.

Tips

1. Get a physical copy of your loved one's insurance policy and find out exactly what their coverage includes. Make sure and look at traditional health coverage (hospital stays, doctor's visits, surgery, etc.) as well as alternative or complimentary medicine (massage, acupuncture, etc.)

2. Thoroughly review the policy and then call the health insurance provider to answer any questions that you may have. Look out for inconsistencies or vaguely described benefits. Do not let your insurance company deny coverage for something that has been covered in the past or that you believe should be covered.

3. Make sure you are aware of any possible coverage issues before you start any treatment. The doctor's office will usually do this for you, but make sure you are in contact with them and know what the coverage is for each treatment ahead of time.

4. Many insurance companies now offer online access to all claims and communications, check out if yours does or plans to. While this won't alleviate the need for your own record keeping, it does make it easier and acts as a double check for lost or delayed claims.

5. Keep careful records of all your covered expenses, claims, denials and appeals throughout the claims process.

6. Take thorough notes during your conversations with insurance representatives. Include their names and job titles, and the date(s) you spoke with them. Keep these notes with your records. If you don't get the answers you need, be your own advocate and ask to speak to their supervisor!

7. A spouse is legally responsible for your loved one's bills and your income is included in determining eligibility for Medicaid. Unmarried couples may find it easier to get Medicaid benefits which may include home health care.

8. If a claim is denied, talk to your health insurance provider to find out what steps you can take to appeal. The following sites will help you understand and navigate the insurance questions that you will face. You should also check with your doctor / hospital and inquire about their advocacy programs in support of insurance questions and follow through.

Remember: The goal is to get the maximum benefit from your loved one's insurance policy!

Pantene Creates Wigs: Another Way To Donate

Pantene has a wonderful program in place now that collects donated hair and then wigs are created and distributed free to cancer patients. So far, over 18,000 donations have been received.

As these Pantene wigs are created, they are distributed at no cost through the American Cancer Society wig banks across the U.S. You can find out more about the availability of a Pantene wig by calling the American Cancer Society at 1-877-227-1596.

Sometimes we get so immersed in our own cancer journeys, it's great to help someone else out as well. You can find out more about the program specifics here.

Should you try to keep your loved one positive?

A friend of mine's husband was just diagnosed with cancer and she asked me what she can do to keep his spirits up.

I think every person that's been diagnosed with cancer, and their family members, face this illness in their own way....and it changes along with the course of treatment(s).

I've been thinking about when my husband had surgery, and then radiation a year later, how much I tried to control the illness through nutrition and alternate healing. I also tried to encourage him to be "up" and positive about the future. In retrospect, I think it's because I felt helpless at the time and needed to contribute to his healing in my own positive way.

My husband sometimes rebeled at my good intentions. He would eat something I thought was wrong, or not exercise as much as he said he would. At the time, I thought it was all about me....I was doing the research and promoting a healthy recovery, and I thought that's what he was rebeling against.

I learned that I needed to express my own anger, frustration and helplessness in other ways. We still for the most part honor diets and exercise that support his recovery, but I've also learned to honor the fact that he needs to make decisions about his own life, and cope in the way that he deems is best for him. He doesn't want to think about recovery all the time, he just needs to honor where he is in the present.

I am still working on accepting that I can't make him think positively all the time .... I can only be present, supportive, do the research, and be available for him to talk to me about his feelings.

When Your Loved One Has Just Been Diagnosed With Cancer

When your loved one has just been diagnosed with cancer, it's very difficult to find the right words to say. Most people are in shock for awhile.

Here are some tips to help you communicate:

1. Listen to them. It's critical that they are able to talk about their feelings without anyone judging them or offering only thoughts like "it will be OK". It's really important that they have a safe place to talk about what they are feeling.

2. Don't make immediate decisions if you don't have to. Talk to your doctor(s) about timeframes for decision making. Everything seems very immediate, but if you have the time, take it to absorb your choices and get a second opinion.

3. Let them be down for a while if that's where they need to be. It's not realistic to be positive all the time, and this is a very emotionally challenging time. For both of you!

4. Respect their decision to tell or not tell friends and relatives. If you don't know their opinion on this, ask, or simply don't tell anyone until they are ready. It's their decision and you need to respect it.

5. Educate yourself. Cancer is a very frightening word in and of itself. We've learned that it means something different to everyone, no two cases are alike because there are both the physical and mental components to recovery. Check out the resource links of this site for links to specific cancer organizations, and learn what you can about your specific type of cancer and treatments.

6. Just be there. Your new role is that of support person. The greatest gift you can give them is to listen and support them. As you move forward, you will gain more information, define your roles and determine a strategy. For now just be there.

If you have additional tips, please let me know!

Keeping Friends and Family Up to Date About Your Loved One's Cancer

Communication is critical, yet it's hard to return each phone call and email. Here are resources to help you create private web pages that will keep everyone up-to-date, and allow everyone to participate -- and to post messages as well.

Care Pages are both free and private web pages that help friends and family keep in touch.. They are working on a guide right now to help you decide what to share and to help you communicate.

Lotsa Helping Hands is a simple way for friends, family, colleagues, and neighbors to assist loved ones in an easy-to-use, private group calendar, specificially designed for organizing helpers, so everyone can pitch in.

Inspiring Video from Carnegie Mellon Professor Dying from Cancer About Living Life and Achieving Your Dreams

Here's a wonderful and inspiring video featured on the Wall Street Journal Online site. I just had to share it with you. Carnegie Mellon Professor Randy Pausch, is dying from pancreatic cancer and gave his last lecture at the University on September 18, 2007. In his talk, "Really Achieving Your Childhood Dreams," Pausch shares the lessons he has learned both from cancer and from his life. He also encourages his students to achieve their own career and personal goals.

It's such an important reminder about how we deal with, and live life, not just the cancer in our loved one's life. I think we often lose track of our own goals and our own life when in this position, and this is a great reminder to still pursue, and celebrate your dreams.

Below is the Wall Street Journal video.

You can listen to Randy’s Pausch full final lecture on You Tube (broken down into multiple videos).

Top Ten Cancer Hospitals

U.S. News and World Report recently published their list of the top 10 cancer hospitals in the U.S. Here they are:

University of Texas M.D. Anderson Cancer Center, Houston

Memorial Sloan-Kettering, New York

Johns Hopkins Hospital, Baltimore

Mayo Clinic, Rochester, Minnesota

Dana-Farber Cancer Institute, Boston

University of Washington Medical Center, Seattle

University of Chicago Medical Center, Chicago

UCLA Medical Center, Los Angeles

Duke University Medical Center, Durham, N.C.

Massachusetts General Hospital, Boston

LIVESTRONG Presidential Forum

Most of you have probably heard about Lance Armstrong's drive to make cancer one of the key funding issues for the 2008 presidential elections. A two day forum was held where candidates from both parties talked about their commitment to cancer funding and how the war on cancer would be addressed by their administration should they win the 2008 election.

The LIVESTRONG Army was created to generate awareness and action for the importance of continued and increased cancer research funding. The LIVESTRONG Army petition has been generated to show support for additional cancer funding. You can sign this petition, and pass along to others as well.