“You have cancer.” They are the three words that you hope you never have to hear—yet, at some point in your life, you may. And whether the diagnosis is for you or someone you love, those words will change your life forever. Amid the shock and waves of grief, anger and sadness there will be decisions to make, appointments to book and lives to rearrange. It’s an intimidating prospect, but despite your fear and exhaustion you won’t have the luxury of hiding under the covers and hoping it all goes away.
This is the message I want cancer patients and their loved ones to hear: There’s no time to waste. The decisions you make early on may very well mean the difference between life and death—so be sure you are the one making them.
When people are diagnosed with cancer, their inclination is often to turn their lives and treatment options over to the healthcare industry. After all, they are the “experts.” But it’s just not that simple. This is happening to you, not to them. And for the most part, you are your own best advocate.
You—the patient or the loved one of the patient—must take part in many decisions, ranging from choosing a cancer treatment center and oncology team to deciding upon a treatment protocol. If it’s not a major investment of your time and effort, you’re probably not as engaged in the process as you should be.
You just can’t turn away from the diagnosis and expect it to disappear. The best option is to face it head on. A poorly devised and executed cancer attack plan can cost you much more than just time. When it’s the fight of your life, for your life, you have to make sure that you are doing everything possible to get the best care for you and your family members from the very beginning. You may not realize it, but you have many options.
I know about the subject of cancer—and its ramifications—all too well. In 2006, I lost my husband after a two-year battle with cancer. We trusted the wrong medical treatment facility and team for the first five months of our fight to save Gordon’s life and never recovered from that—even after finally finding the right treatment facility, and even though he was young (43 years old) and in otherwise good health. In my second book about surviving grief—The Losing of Gordon: A Beacon Through the Storm Called “Grief” (Cancer Lifeline Publications, 2009, ISBN: 978-1-4392649-3-5, $15.95, www.griefbeacon.com)—I tell the inspirational story of my own rebuilding after losing my husband.
So, what insights do I give people (and their families and friends) facing the fight of their life against cancer? Read on for eight ways that you can begin coping with cancer:
1. Admit that you and your family are in crisis. When you hear the word “crisis,” it typically conjures images of natural disasters and third-world countries—not something that is the result of a day at the doctor’s office. However, no matter how small a scale, a crisis is a turning point, one that denotes a pivotal change in your life. A diagnosis of cancer is just that. You have to come to terms with the fact that your life has now changed, and move forward knowing that even though things won’t be the same, your life will continue—and it must.
A cancer diagnosis is different from any other crisis that you may have been through before. It won’t go away; there is no quick fix. Being able to understand that will prevent you from wasting time with denial. Move forward, even if you start with baby steps. And whatever you do, do not stick your head in the sand and ignore the situation. Instead, focus on staying strong and in control.
2. Remember that knowledge is power. When you are faced with a terminal illness, there are so many things that are simply unknown to patients and their caregivers. The best remedy for feeling “armed and ready” during your fight with cancer is to equip yourself with information—a lot of it. Most patients and their families tend to defer to their doctor without realizing that they actually have a say in all decisions. Insist from the beginning that your medical team be direct and forthcoming with all information. Pay close attention at doctor’s appointments, ask for multiple recommendations, and stay grounded. You need to clearly understand your options, the side effects, and future concerns. After all, this is your life at stake.
Keep in mind that there is no preset treatment for any type of cancer, and every patient is different. Ask to be provided with copies of all medical tests and blood work. You may not understand every word, but you’ll catch a lot of the information and learn as time passes. Keep all documents organized in a file, so that if you need an additional consultation you’ll have everything that you need.
3. Make use of the gifts of those around you. Chances are the people in your own inner circle, your family, friends, neighbors, and coworkers, all possess individual talents and resources that can help you face your fight. For example, perhaps you have a relative with experience in the medical field who can help you navigate the hospital system. Or maybe your neighbor has a gift for organization and can help you keep up with your paperwork and appointments. People really want to help, so don’t be afraid to ask. You’ll be amazed at the talent and resources that are available to you—often right in your own family!
Many newly diagnosed cancer patients put their faith solely on the shoulders of their medical team. This includes shutting out other patients who have gone through treatment for that same type of cancer. Don’t! It’s productive to listen and learn before you decide what’s best for you. Ask your friends and family for their opinions, help, and guidance. Having the right support system at home is almost as important as having a top-tier medical team.
4. Don’t stop with the first opinion. At the onset of your diagnosis, it’s important to remember that nobody, not even your doctor, can know what will happen—good or bad. Plus, doctors are human, not superhuman, and they can send you down the wrong path. One of the biggest mistakes people make after a diagnosis is failing to get a second, third, or even fourth opinion on their diagnosis and treatment options. Even if you have to travel out of state or across the country, it’s worth the effort if it means getting the best possible care.
This is one mistake Gordon and I truly regretted after the original treatment failed. And because of that the cancer had grown out of control. We were sold a “bill of goods” and given expectations that had no real chance, because his cancer was too aggressive. We were originally told that after six months of radiation, chemo, and a stem cell transplant—poof—Gordon would be as good as new. It didn’t happen. His cancer was more aggressive than his treatments.
Be aware that every patient is different. You need a doctor and medical team who can “bob and weave” through whatever turn your cancer decides to take.
5. No one knows a patient’s “expiration date.” Cancer is very serious and you don’t want to live in denial. Yet, you also don’t need to assume the worst. If your doctor says the typical patient with your kind of cancer lives six months, that doesn’t mean you have only six months. Maybe you have nine months or two years or even more time ahead of you. The doctor doesn’t know for sure. Assuming she knows how long you have sets you up psychologically to live until that date and no longer—and since outlook is such a critical part of the battle, that could have dire consequences.
This is very easy to say and very hard to do, but I’m going to say it anyway: enjoy every day and keep your hopes high, and don’t focus on some imaginary deadline. Concentrate on the here and now and the things you can control. That way, no matter how long you end up living, the time will be worth living.
6. Commit to face the cancer battle together. A cancer diagnosis is challenging in many ways. It can tax you mentally and physically—and it can put a real strain on your personal relationships. You have to go into it knowing that neither you nor your partner will survive this trial without the other one. Studies show that patients with poorly managed anger and pain may feel stress, fatigue, anxiety, depression, and guilt. They may even withdraw from loved ones. Sometimes that will hurt you both, but your mutual understanding of what is happening can make all the difference.
You have to keep in mind that you are not in a normal situation. You can’t expect a normal relationship during this time. So practice forgiveness. Be patient. Lean on each other, and most importantly, take every opportunity to say the words “I love you.”
7. Remember, the patient has the final say. When you’re the patient, you’ll want to do everything in your power to fight your cancer and become a survivor. But there may come a time when it’s all too much, or when you don’t feel comfortable with a decision or treatment plan—and it’s okay for you to say no or ask for another opinion. Personal choice is critical in the fight against cancer, and keeping in mind that you have a choice can be both empowering and comforting.
Of course, when you’re not the patient, it can be very difficult to let go of your need to control the situation and make decisions for him or her.
Allowing a patient personal choice can be particularly hard for family members and friends. To them I would say this: offer your love and support, but unless the person is mentally incapable of taking part in the decisions, he or she should have the ultimate say. Otherwise, how will you live with the results, if you force your loved one and the outcome is not positive? You’re a team in the strange land of cancer. You must work together to strike a balance.
8. Realize that life does go on (if you let it). A cancer diagnosis changes everything about the way you live—your capabilities, your schedule, and your ability to make future plans. And quite often, this loss of freedom and flexibility is one of the most difficult aspects of the disease for cancer patients to cope with. That’s why it’s critical to live your life as normally as possible. Get up every day, go to work if you are able, and stay active and involved with your friends and family. Despite how you may feel initially, your life does not have to come to a screeching halt. Finding the right balance will keep your spirits high and your attitude positive. Part of this balance is leaving the “what ifs” and “if onlys” at the door.
So much of your success in fighting this battle is tied up in your attitude and mental state. If you let the cancer consume your life, you’ll begin to lose touch with that life you are fighting for. As long as you are aware of your own limits and boundaries, there is nothing wrong with getting out there and doing the things you love to do and that make you and your family happy.”
The overarching message in my book, The Saving of Gordon: Lifelines to W-I-N Against Cancer (Cancer Lifeline Publications, 2009, ISBN: 978-1-4392550-3-2, $19.95, www.thecancerlifeline.com) is this: you must be empowered, involved, and alert in your cancer decisions and treatment. You and your family must focus your time and attention on creating a battle plan and setting goals to win against your cancer—and every detail counts.
Finally, remember that while bad days are surely ahead, there will be good days, too. Cherish those good days; they’re what life is all about. And always keep your eyes on the proverbial prize: at every stage of the battle, holding on to the positive will make all the difference.
Joni is also the author of The Cancer Patient W-I-N Book: Our Cancer Fight Journal.
For more information, please visit www.thecancerlifeline.com and www.griefbeacon.com.