If you’re facing terminal cancer, you already have a lot on your mind. You have to deal with your own emotions on the issue, and make preparations for your family.

But when it comes to children, the choices are so much more difficult. We want to protect them from pain, and so many times, we may think that hiding the truth is best. However, according to Lisa Barkely, clinical psychologist at Great Ormond Street Hospital in the United Kingdom, children tend to sense the truth anyway, and hiding it from them can increase their fear.

“Children who are kept in the picture tend to have a more positive recovery,” she says. “First, ask your child questions to find out what they know about the situation already. They may have overheard you talking and already had ‘fantasies’ about what is happening and feel confused or worried.”

The American Cancer Society (ACS) agrees. “Children should be told of a parent’s terminal illness so they can prepare themselves for what will happen next. The pain of losing you is likely to be worse if they are not prepared.”

Barkely goes on to say that it’s best to use words like “death” and “dying” as opposed to “going to sleep,” as those types of statements can confuse the child. After all, if you said you were going to sleep and then you never come back, the child may fear the same will happen to him when he goes to sleep, and grow to fear going to bed at night.

“Don’t tell a child what you think he or she wants to hear,” Barkely says. “It’s not helpful to say that everything is going to be ok when you know it isn’t.”

As difficult as this can be, what may help you is the thought that what you do and say now, while you’re still here, can help your child better deal with life after you’re gone. And be assured—most children who lose parents to cancer do go on to life happy, productive lives. “Having a parent with cancer is only one part of your child’s development,” says the American Cancer Society (ACS), “and does not, by itself, lead to lasting damage to them as adults.”

Mastering your own emotions before your talk to your child is important. Come to terms with your own fear, anger, and sadness, and you’ll be better able to help those who depend on you. Then, wait until you’re sure that your death is imminent, within the next few weeks. Children experience time differently than adults, and if you tell them too soon, they could have difficulty managing a long stretch of time in between. However, realize that there will never be a “perfect time” to break the news.

The ACS recommends that you think of how you prepared your child for her first day of school. You talked about all the fun things she would learn, how she would make new friends, and how going to school was a normal part of growing up. Draw on the same skills to prepare her for your passing—tell her how death is a natural part of life, and how she will go on to learn new things, make new friends, and grow up to be a wonderful person. Be as honest as you can, while considering the age of the child. Listen to discover the child’s fears and worries, and address them as best you can. According to the National Center for Biotechnology Information (NCBI), two of the most common questions are, “What’s going to happen to Mommy?” and “Who will take care of me?”, so prepare for these. Above all, reassure the child that he will be taken care of, and that you will always love him.

“Saying good-bye,” says Grace H. Christ et al. in a 2006 study, “seemed not as important as a final hug, squeeze of the arm, and repeated affirmation of love.” According to the study, a 7-year old who lost her mother was comforted by remembering that, even though her mother could not talk anymore, she had squeezed her hand. For months, she put herself to sleep with this tactile memory.

Have you had an experience with children and terminal cancer? Please share your story.

Photo courtesy mesamitch510 via Flickr.com.

Dealing with loss is one of the hardest things we have to do as human beings. The three things that helped me were my faith, my other loved ones, and taking action to remember my father in many positive ways—this blog is one of them.

Everyone grieves differently, but we wanted to gather some thoughts that may help you through. One thing you must not do is turn away from your own life. I firmly believe that we’re all here for a reason, so if you’re feeling that life isn’t worth it without your loved one, I urge you to reconsider. You’ve still got things to do, and your loved one would want you to live out your life the best way you can.

Be nice to yourself. You’re grieving, and going through an extremely difficult time. Recognize this. Realize that you’re going to need time to mourn the loss. Treat yourself as you would a friend going through this time. Eat well, rest as much as you need to, and exercise. If you’re feeling guilt, regret, or “if only” thoughts, give yourself a break. Be realistic—you couldn’t have done anything to stop what happened. Journal about your feelings, or talk to a friend or therapist. I stated seeing a therapist immediately so I could start to heal. Sometimes we feel it may be easier to put it aside, but that’s definitely not the best approach long term.

Realize it’s going to hurt. None of us like pain (especially emotional), and often we do whatever we can to avoid it. Most of the time, those things are unhealthy. Too much food, drink, work, whatever, are all detrimental to your health. Realize that loss hurts, and try not to be afraid of that feeling. Let it go through you. Cry when you need to. Punch pillows, walk, and write off any anger you’re feeling. Dealing with whatever feelings come up is much healthier than trying to avoid them. Remember, the only way out is through—and unless you’re willing to feel the feelings, they will never let up.

Plan activities during difficult times. Birthdays, anniversaries, Saturday nights, weekends, and holidays can all be extremely difficult when you’re grieving. Try to plan activities during these times so you’re not alone. Have dinner out with a friend, spend a day skiing (or participating in another favorite hobby), enjoy an afternoon picnic with your children—anything that will help you to feel a sense of belonging. Our first two Christmases without Dad, for example, we spent out of town, which was easier than doing the same thing we did every year when he was with us.

Avoid making major decisions. Realize that you’re not really in your right mind after suffering a major loss. This is not the time to quit your job, move, or make other life-altering changes. You’re going through enough change already. Keep everything else as much the same as you can, at least for several months. Even with wills and other financial concerns—wait at least two months after the loss, if you can.

Celebrate your loved one. There are so many ways to honor and celebrate the one who meant so much to you. You can set aside a place in your home to decorate with photos, quotations, letters, old e-mails, etc. Try lighting a candle in her honor (white one preferably), hosting a dinner party, making a donation to one of his favorite charities or organizations, planting a tree, making a quilt, or putting together a scrapbook. Give yourself the time it takes to complete this important step. We celebrated Dad at my wedding (two months after he passed) by releasing white doves in his honor. To this day, I often dedicate time to him by lighting a white candle that I bought especially for him, and sitting by its light to read or to meditate. Anything to keep him close to me.

Ask for help. Sometimes people don’t know how to help after a loss. If you need assistance with finances, legal matters, or other new responsibilities, don’t be afraid to ask. You may also want to seek the advice of a lawyer, accountant, or financial advisor. Consider joining a support group—talking with others who have experienced similar losses can help a great deal and encourage healing.

Have you survived the loss of a loved one to cancer? Please share your story.

Photo courtesy Mohammad A.S. via Flickr.com.

And then she says something about dying.

Your mouth goes dry, your eyes shift. You don’t want to talk about this. You don’t even want to think about it. But your loved one is looking at you with soulful eyes. What do you do?

“I did need to talk about the possibility of my death,” says survivor Phyllis Johnson. “I found no comfort from all the people who told me about how their aunt Minnie had lived for 20 years since her mastectomy. Aunt Minnie might be alive, but my friends Catherine and Marian weren’t.”

“How do I get the people in my life to confess out loud that this could, and in all likelihood will, kill me?” says fighter Carolyn. “Everyone around me is insistent on being optimistic and denying the truth that this disease kills people everyday, and I could be one of them.”

The reality is that if someone has an aggressive cancer, whether it’s truly life threatening at that moment or not, they will probably think about or worry about dying from it. Whether your loved one is truly terminal, or just worries she might be, if she can’t talk to you about it, who will she talk to? Or will she suffer alone?

“Often people think that by not talking about death, they are protecting the other person from hurt or sadness,” says cancerconnections.com. “In reality, though, dying is often foremost in the mind of the patient, and not talking about it is like trying to ignore the elephant in the room.”

“Most people say it is a relief to talk about it openly and be direct and honest,” says CancerHelp UK. “It can bring people closer together when they talk honestly about death and share their fears and hopes.”

If someone you love brings up the subject of dying, take a deep breath, and do one thing—listen. Avoid statements that can shut down the conversation, like, “Things will be fine—just wait and see.” You may think you’re comforting the person, but actually you’re shutting down communication and avoiding the subject. Instead, ask questions like, “How do you feel about that? Are you finding it difficult? Do you have specific concerns? Are you scared?” These types of questions invite more conversation, and can help your loved one get his feelings out. Try not to offer advice, or claim to know how the person is feeling—allow them to tell you.

Note that your loved one may not come right out and say he wants to talk. Instead, he may say something like, “Well, I guess this is the end,” or, “Looks like I’m not going to beat it this time.” Try answering with something like, “This must be very hard for you,” or a similar empathetic statement that will encourage the person to keep talking. Give him time to get his emotions out—he may repeat himself, due to the emotional difficulty of the subject. If one of you starts crying, don’t worry about it—it’s a normal response. Ask if there is anything he thinks might help him feel better.

“A simple answer to the question of what to say to a friend who is dying?” says Mona Ackerman, clinical psychologist. “Approach, don’t be afraid, be honest and ask questions. Don’t assume you understand or can make the pain go away. What you can do is listen, respond, and give back what is needed, even if that is silence.”

Have you talked to a friend about dying? Do you have any advice?

Photo courtesy varf via Flickr.com.

Your loved one will probably be going through all types of emotions and physical hardships, making your help invaluable as he/she fights to recover. We’ve gathered a few tips here to help make your journey a little easier to navigate. Try not to be overwhelmed as you review this list. Remember to take things one step at a time, and to do your best to continue to exercise, eat right, and get enough sleep. Maintaining your  own health is equally as important during this difficult time.

1. Become informed. This may seem like a no-brainer, but the more you know about your loved one’s condition the more you’ll be able to ask the right questions and ensure she is getting the best care. Read about the disease, the treatment options, the side effects, and any possible experimental procedures if necessary. To avoid becoming overloaded with this task, set aside a certain time of day for research, like one hour after dinner, for example, and keep notes of what you find.

2. Create a folder. Writes Meg, a caregiver for her parents, “As an advocate and a caretaker for my parents when they were diagnosed with cancer, I quickly learned the importance of keeping detailed notes and important paperwork with me at all times. Without a moment’s notice, I found myself needing to recite a list of complicated medication names, which were ever changing, along with dosage instructions and allergy information to a member of our healthcare team.”

Purchase a 3-ring binder or other type of folder in which you can place lists, paperwork, and other information, then keep it with you for doctor and pharmacy visits. Use a dividing system to separate insurance cards and contacts, medical team contacts/business cards, legal documents (like Durable Power of Attorney), a calendar of appointments, medical history, medications, lab test results, and medical imaging results. Having this folder with you will prevent a lot of headaches.

3. Put legal documents in place. It may seem premature or unnecessary, but if you can talk to your loved one and put legal documents in place, it will save you a lot of stress and heartache should you face a difficult medical situation in the future. What if your loved one can’t make decisions for himself? You will need the Durable Power of Attorney to make decisions for him/her. Talk to your doctor about the forms you need, then see a lawyer or go onto a legal website to properly fill them out.

4. Prepare for doctor’s visits. When your loved one needs to see her doctor, you can help her prepare by making sure all necessary documents are in your folder, and by creating a list of questions to be asked. If you need some ideas on important questions, check here. Once you’re at the appointment, take notes, help your loved one communicate about her condition, ask questions, and make sure you understand everything. Once again—don’t be afraid to speak up and ask questions!

5. Communicate with friends and family. Your loved one will have many people concerned for him, and keeping those people in the loop not only keeps you both connected, but opens up opportunities for others to help. Make phone calls, send out group e-mails, and/or use social networks like Facebook and Twitter to alert people to your loved one’s progress or to enlist help with anything you might need. Remember—don’t be afraid to ask. People want to help and you need to be sure you’re not overloading yourself.

6. Help empower your loved one to control pain. If your loved one is in pain, encourage him to speak up, or speak up for him. According to Cancer-Pain.org, “By believing your loved one and validating his or her pain, you empower the person to ask for the help he or she needs.” Don’t assume the doctor or nurse knows about your loved one’s discomfort. Bring up the subject and ask for solutions. If the nurse doesn’t seem able to help, request a meeting with a pain-management specialist.

7. Keep your eyes and ears open. Many healthcare professionals are efficient, but still, mistakes can be made. Sometimes hospitals are understaffed. Nurses may be distracted. Double-check medications, ask questions about procedures, and watch for anything that can cause allergic reactions. Your loved one won’t be able to focus as well during this time, so staying alert for her could save her from additional setbacks.

Have you found techniques that help you fufill your role as advocate? Please share them with us.

Photo courtesy angelamaphone via Flickr.com.

Cinco Vidas

You can participate by being part of a focus group, taking a survey, or sharing your story through a personal interview. It will mean a lot to others who are now, or may one day be sharing the journey of cancer.

Write to info@cincovidas.com and tell us if you’re a fighter, survivor or caregiver (or combination of these), your phone number, and what state/province you live in. Don’t worry- we won’t release your information to anyone else.

We simply want to hear from real people with real stories and opinions that may benefit others.

Reaching out is a great way to turn tragedy into triumph. Try it and see – it may bring new purpose and meaning to the challenges you’ve faced.

Cinco Vidas – and others touched by cancer – thank you for your help!

Love, strength and survival,

Britta

In 2001, Marc’s wife, Marsha, was diagnosed with breast cancer. Like most people, he didn’t know what to do. He looked for resources that would help, but found nothing that spoke to the unique perspective of a male caregiver. So he decided to write his own book. According to “Publisher’s Weekly,” Marc helps men weed through the confusion and anxiety of breast cancer with practical tips on what to do and what not to do, gives examples of how to best help a loved one, explains different types of treatments, and even explores ways for finding intimacy after mastectomy.

“I was contacted by Mark Silver…last year,” says Frank Sadowski, “and interviewed extensively about my own experiences…I only wish this book existed two years ago when my wife of 23 years was diagnosed with breast cancer; it is an invaluable resource that informs men in an accurate, succinct fashion exactly what is likely to happen at each stage of the diagnosis and treatment process….it is told from the mouths of real breast cancer husbands with real, true-life stories.”

Marc’s own website on the book adds, “…newly published studies show that the support of a loved one can be critical when it comes to coping with the stress of treatments—and may even improve a patient’s survival odds. The problem is, the man typically hasn’t a clue how to be a good caregiver. And his instincts lead him in the wrong direction.”

Breast Cancer Husband provides a checklist of questions for doctors, tips on coping with the side effects of treatment, and guidance for breaking the news to the kids. It even goes so far as to cover terminal cancer, with insights from mental health experts on living with the idea that your loved one may soon be gone.

“No one should face breast cancer alone,” says Nancy G. Brinker, founder of the Susan G. Komen Breast Cancer Foundation.  “But how does a husband support his wife when he may be feeling frustrated, sad, and angry himself? Author Marc Silver fills an essential niche with his book…offering emotional support and practical advice to help men be compassionate caregivers.”

“Silver’s prose is funny, tender, and filled with rock-solid advice,” says the Library Journal. “Highly recommended.”

Breast Cancer Husband is available at Amazon.com.

Have you read Marc Silver’s book? Let us know what you think.

Britta Aragon and her father, Javier.

I pride myself on being a positive person. After surviving cancer myself, I felt I had experienced firsthand the power of believing you can, and you will get well. I did it, and later, when my father was diagnosed, I watched him do it not once, but five times. His strength and optimism stay with me to this day, and fuel all my efforts for Cinco Vidas and all the cancer fighters, survivors, and caregivers that we touch.

However, despite my father’s triumphs, after the fifth recurrence of the cancer, there came a time when I knew that even with all his positive energy, my father was not going to survive. I’m not sure how you come to know this. It’s not just what the doctors say, or what the test results show. After a certain time of fighting battles—some you win, but some you lose—you see that the body is breaking down, and like a machine with too many broken parts, there’s just no fixing it anymore, despite the strength of the heart that lives inside.

What do we do when this happens? How do we face each day knowing that we’re going to lose someone we love so much? Of course it’s not easy. Truth be told, I didn’t think I could survive it. But I want to tell you—if you’re in this position, make the most of it. Don’t let it pass you by. Don’t live with regrets. This is a precious time filled with gifts waiting to be unwrapped between you and your loved one; gifts that have never appeared before, and will never come again.

When it started to hit me that my father had only a few months to live (though I still found it hard to believe), I made sure that he and I got a chance to talk. I asked him all the questions I might have never asked him had I not known he would be gone soon—like what it meant to him to be a good friend, and what was it like growing up in his time? What were his biggest life lessons? It was during these talks that he opened up and told me in detail about when he lost his father—something that happened when I was only 8 years old.

Throughout all these talks—which sometimes lasted hours—his spirits were high, making the times between us truly joyful. I bought a book called “Between Me and You, Dad” that gave me ideas of other questions to ask, and I used it to record his answers. I found this experience so valuable that I ended up buying extra copies to give to all my cousins so they could start doing the journals with their dads. It’s never too early to get to know your loved one better! (There are similar journals for almost anyone—mom, grandpa, siblings—click here.)

As we talked about so many things, we weren’t really aware of it, but there was healing taking place. While we explored his life, his experiences, and his wisdom together, we were both subtly preparing to be separated, and gathering all the treasures we could find to give each other, keepsakes we could hold onto that would serve as tender reminders—memories that we may one day delight in sharing again, should we meet in some unknown future.

I never asked him about dying. I thought that was up to him, whether or not he wanted to talk about it. He never did—at least, not with me. But that was okay. What was important was that we shared the time we had in as loving a way as possible. My mom and I kept his environment soothing, with aromatherapy, his favorite music, and funny movies to make him laugh. We made sure he had comfortable bedding, and touched him as much as we could. So many times people become afraid to touch a dying person, but it’s so important to convey our love this way. I gave my dad daily hugs and kisses, and often held his hand. It was as helpful to me as it was to him. I also took many pictures of him and my family, as I realized that we didn’t have as many in my collection as I would have liked.

Someone so important to you can never be replaced. When they’re gone, it’s normal to feel unsteady, shaken, lost, and like somehow, the world has taken on a darker hue. But the memories you make during the last precious moments of your loved one’s life—they will last the rest of your own. You will take with you the grace, strength, and love that you saw displayed in the final steps of another’s journey, and one day, you will use those lessons to help you manage your own final breaths. Death, like life, can be filled with love and light and hope for the future—the future of your life, as you move forward with this important person forever in your heart, and the future of your loved one’s life, as the strength of your love and the moments you shared together carries them on to their next journey.

My father’s last gift to me was a small jewelry box. He surprised me with it about a month before he passed. On it is an engraved quote that he wrote. I’ve reread a thousand times. It has helped me to feel his presence, even now. I copy it here for you, that you may know that even if our loved ones are not physically here, we still have them with us, awakening our memories, warming our hearts, and strengthening our souls so that we can go on, and live our lives to the fullest.

“I will always be with you to show you the way.  If you do not see me, look closer. I will be there.”
—Papi

What did you learn from sharing the last days with your loved one? Please share your story.

Of course you can’t take away the cancer, which is probably what you’d like to do, but you don’t have to feel helpless. Your loved one is going to need your support, and there are a lot of things you can do for her as she embarks on this new and difficult journey. Treatments are improving every day, and more and more patients are surviving and going on to live full and happy lives. Take it one day at a time, and try the following tips to help you stay strong and be as supportive as you can be.

1. Listen. Your loved one is going to experience all kinds of emotions as a result of the diagnosis. One of the best things you can do is simply listen. Don’t cheerlead, don’t sugar-coat, don’t tell her everything is going to be fine. (Cancer patients hear that too much.) Don’t worry about what to say. Just let her vent, and assure her that you will be with her and that she has the strength to get through it. Offer empathetic statements like, “Yes, I can see how you’d feel that way,” or “that’s completely understandable.” Don’t, however, say you know how she feels, because you don’t. Let her tell you. Try to relax and accept whatever emotions come out.

2. Refrain from giving advice. We all want to help, and a newly diagnosed cancer patient is often bombarded by well-intentioned friends and loved ones suggesting this treatment or that supplement or this alternative therapy or that clinical trial. Research to become informed, ask the doctor questions, and help safeguard your loved one’s best interests, but refrain from giving a lot of unsolicited advice.

3. Take care of yourself. You’re going to have just as many conflicting, difficult, and scary emotions as the person who has cancer, particularly if you’re very close to him. Journal, talk to outside friends, educate yourself, and consider joining a caregiver’s support group or online forum. Eat well, get your sleep, exercise, and stay healthy. (You can even share these activities with your loved one, and you both will benefit.) The healthier you are, the more you can help.

4. Offer specific assistance. Friends often throw out the phrase, “Call me if you need anything,” without realizing that this can put the patient in the uncomfortable position of having to “bother” you. Offer to help with specific tasks, like picking up the kids from soccer practice, caring for pets, getting groceries, or driving your loved one to treatments. Help him remember his chemo appointments, or other important events and times that he may forget with so much going on. Finally, ask him what you can do to help, and wait patiently for the answer.

5. Keep things normal. Many cancer patients describe situations where loved ones treated them like invalids after their diagnoses. Try to keep things as normal as possible. If your wife wants to cook dinner, let her. It will help her feel useful, and give her something else to think about besides the cancer. Don’t forget to do your usual fun things together if you can, and keep a sense of humor. Laughter really is the best medicine.

Do you have advice on how to support a loved one with cancer? Please share it with us.

Photo courtesy of brownstock via Flickr.com.

My mother provided care for my father for 8 years. She enjoyed going to the spa to relax and rejuvenate.

As anyone touched by cancer knows, it’s not just the person receiving the diagnosis that struggles—those caring for him or her face their own challenges. In a Harvard School of Public Health poll of cancer survivors and their families, one-third said cancer caused someone in the household to have emotional or psychological problems.

Unfortunately, as you may know, most caregivers suffer in silence. According to the Hospice and Caregiving blog, only 20 percent of Americans who provide support to a loved one with cancer consider themselves a “cancer caregiver,” well below the national estimate of 60 percent. Make no mistake: If you are emotionally, physically, financially, or logistically caring for a cancer patient, you are a caregiver.

“There were times I would go into my office and just cry for no reason,” says caregiver John. “I became alarmed when I dreaded caring for her everyday.”

If you’re having trouble sleeping, eating more or less than usual, withdrawing from friends and family, feeling overly emotional, or fighting endless fatigue, don’t wait—get care for yourself. Start with the following six tips, and don’t stop until you feel stronger. After all, you can care for someone else only when you’re well enough, yourself.

1. Eat Well and Exercise: Neglect these items for too long and your body starts to break down. Pack fruits, nuts, and vegetables for snacks, drink water throughout the day, stay away from high-fat and high-sugar items (they zap your energy), and work in a 30-minute walk on most days. Meditation is also a great way to maintain a relaxed state of mind.

2. Spend Time with Friends and Family: Socializing with people who care about you is paramount to your mental and emotional health. It’s also a great way to talk about anything that may be bothering you. Make appointments for lunch, go walking together, or invite people over.

3. Express Your Feelings: One of the reasons caregivers suffer is because they’re silent about their own feelings. Repressed feelings wreak havoc on the body, so journal, talk with friends, visit a therapist, join a support group, or participate in an online support group like Gilda’s Club. Some studies have shown that caregivers who join a support group maintain a better state of mind.

4. Indulge Your Senses: When you’re around hospitals and doctors and medications on a regular basis, you can begin to feel separated from your body. To get back into your own skin, stimulate the immune system, and lower stress, go for a massage, or make an appointment for a facial, body wrap, or pedicure. If you can’t afford that, make your own spa at home with a hot bath, some naturally scented candles, perhaps a glass of wine, and some organic bath salts.

5. Find Out More: The less you know, the more your imagination imagines the worst. Ask doctors and nurses any questions you may have, and browse through the National Cancer Institute and the American Cancer Society web sites to learn about your loved one’s condition.

6. Delegate and Get Help: Don’t think you have to do everything yourself. If you have friends, family members, or other loved ones willing to help, take them up on it and give yourself a break. If you can afford it, consider paying for part-time, in-home care. If you want to do the caregiving yourself, ask for help with running errands, grocery shopping, cleaning, and cooking meals. You may also have access to non-profit cleaning services who help cancer families like Pristine Maids or Cleaning for a Reason.

Do you have experience as a cancer caregiver? Please share your story.