Together, these are three of the scariest words you’ll ever hear, but take it from someone who’s been there — 51% of your recovery will be determined by your attitude: your attitude towards your diagnosis, your attitude towards your treatment team, and your attitude towards your recovery. That being said, here are the first ten things you should do if you’ve been diagnosed with cancer.
1. Don’t Panic.
Douglas Adams had it right. Yes, your world as you know it is about to end, but look at what happened to Luke Skywalker, Cheryl Strayed, and Ron Woodroof. Look at Mohandas Gandhi, who had to die so that Mahatma Gandhi could be born. You are taking the first step in a journey, that’s all. It may be a quick journey; it may be a long journey, but there’s no need to panic, because you’re not that far along, right? You’ve barely begun, so there’s no need to panic. Take a deep breath, and don’t assume the worst. The energy and courage you will need on this journey will only be eroded by needless worry about things you don’t know yet, so again: try not to work yourself into a tizzy.
2. Take an Inventory.
Even if you don’t have the details from your doctors yet, if you’re facing the Big C, it’s time to take an inventory — of your assets, your medical team, and what you’ve got going for you — your friends, family, and coworkers. You want to get an idea of who can be part of your support team on this journey, because you’re going to need one. You’re going to need to know where you are financially: do you have medical insurance and what does it cover? How about short- or long-term disability? Can you work during treatment, and if so, how much or how often? Do you have savings to help if you can’t work? Next, consider your treatment: who is your doctor and are they equipped to handle your kind of cancer? Do you feel comfortable with your medical team, or would a specialist in another town or city be better for you? Lastly, take an inventory of your friends, relatives, and coworkers: who do you think can be there for you in the chemo ward, and who can you rely on to pick the kids up from daycare, or bring you takeout when you’re too tired to drive? If you don’t have anyone, check out this post at Care.com, which includes links to resources like Lotsa Helping Hands, an online community support tool for “people who need people.” Making a list of your assets and liabilities may be scary at first, but it will be essential in helping you plan for the unexpected. It’s much easier to deal with a surprise expense or disappointment when you know what resources you have available to manage it, whether it’s a rainy day fund or a shoulder to cry on.
3. Make a Road Map.
Take a moment to create a timeline for your treatment based on your diagnosis. Find out if you have to have surgery, radiation, or both. If you have to have chemo, find out how many cycles of which drugs. Start writing everything down using a simple day planner or, if you want to get more detailed, try an online resource like NavigatingCancer.com, which provides tools to organize and manage your care. Think about your specific needs as a cancer patient. Did you know if you are younger than 40, you may have special treatment or counselling needs that don’t fit into the typically “geriatric” or “pediatric” cancer patient’s needs (for example, sperm banking!)? Take advantage of aggregator websites like CancerHawk to help you find the programs, resources, and “to-dos” you haven’t thought of yet. Once you have a map that outlines the journey you see yourself on, identify important milestones for each step of the way so you can track your progress. Know when you can expect to be recovering from surgery, when you’ll start losing your hair, times when you can expect to be feeling tired, and, most importantly, when you will complete the various stages of your treatment. Having a reliable road map and all the tools you’ll need on the journey will help you manage your patience and endurance in the coming months, and let you look forward to completing each stage of treatment.
4. Stock Your Medicine Cabinet.
When I was facing cancer, my roommate was working with mental health patients in a community program, and she talked about a valuable tool she used to help them cope with stressful situations: a “Medicine Cabinet.” She meant this both figuratively and literally — a “medicine cabinet” is a place where you keep all the things that help you get better. Sometimes, as in the case of a person with a disorder like schizophrenia or diabetes, the “medicine” can be a drug, but in addition to the chemical kind of medicine, it’s important to keep therapeutic medicine in your medicine cabinet: exercise, funny movies, good music, comforting books, talking with friends, being in nature, and anything else that makes you feel healthier, calmer, or happier. Before you start treatment, stock your “medicine cabinet” with as many things as you can to help you on those days when you are having a tough time. Also remember: it’s absolutely crucial that you make your contributions to the cabinet as diverse as possible. Having only one coping mechanism puts you in a dangerous place by making you vulnerable to addiction, so collect at least five “go tos” for your cabinet and make it your mission to collect even more.
5. Don’t Put The Cart Before The Horse.
Cancer can definitely throw you for a loop, especially when you turn to Google for advice! Make a decision right now not to make assumptions when you have limited information. This means no jumping to conclusions. You’re not a mind reader or a fortune teller, so don’t make assumptions that will inevitably upset you when you have no legitimate reason to believe they are true. If you have pancreatic cancer, don’t let your mind snowball into thinking you’re going to die. There are people who survive stage 4 pancreatic cancer. The internet is a double-edged sword at best when you’re fighting an illness, so take everything you read online with a grain of salt. Remember that hearsay and anecdotal evidence and misguided thinking are not your friends right now. They will only serve to make you spiral out of control. If you have credible, believable evidence, then by all means, present the evidence to your treatment team for evaluation, and weigh the results rationally. You can’t always control what happens to you, but you can control your reaction to those things by taking a moment to evaluate and consider what you know and what you don’t know, and then decide what you think.
6. Use Magical Thinking Appropriately.
Magical Thinking can serve you when you need to lift your spirits, but let’s face it — imagining rainbows was never proven by the Mayo Clinic to perform better than Adriamycin in a clinical trial. If your doctor tells you that you need a treatment you’re not comfortable with, by all means, get a second opinion, but don’t ignore evidence in favor of daydreams when it comes to cancer. This isn’t just your health you’re safeguarding. It’s your life. Denial, investing in untested cures, or not getting a second opinion can kill you (read Susan G. Komen’s tragic story). Meditating on a white light washing away your tumor might make you feel more comfortable during an MRI, but cancer is not the time to put your head in the sand like an ostrich and imagine everything will be fine if you just “think positive.” If you really want to use visualization and positive thoughts to get you through cancer, use them the way long-distance runners do: to extend endurance. Your body will always tell you when it really needs a break, but if you’re just uncomfortable or unhappy, a “power mantra” can distract you long enough to make it through a procedure or chemo session.
7. Find a Community.
Cancer can make you feel the most alone you’ve ever felt in your life. You might start to tell yourself you are the only one who’s ever been here, who’s ever done this, but trust me — you’re not. Whether you’re a little boy, a middle-aged woman, or a grandfather, there is a community out there that will support you and embrace you, and the Internet has made it so easy to find them! Start with ImermanAngels.org, which maintains an extensive database of cancer survivors, organized by type, age at diagnosis, stage, and location. Imerman will connect you with other survivors, often in your neck of the woods, who have been where you’ve been. You want to find your “comrades in arms” in this fight, so don’t be afraid to narrow down your search for a community that “gets” what you’re going through. The Dana-Farber Cancer Institute has a great example of a program devoted to a specific patient demographic: young women. If you have a specific type of cancer, there are even support groups out there created solely to connect, empower, and educate you — Tamika And Friends and partner site, Cervivor.org, are amazing organizations devoted specifically to supporting cervical cancer patients and survivors. If you’re a young survivor, check out Camp Mak-A-Dream or First Descents, which offer retreats that will connect you with other young people (under 40) who have or have had cancer. CancerCare.org maintains an extensive list of cancer community resources sorted by type (Online, Telephone, and In Person). The bottom line is, you’re going to need to talk to people who understand this stuff. Reach out, and you won’t feel so isolated in your struggle.
8. Throw Your Caregivers a Bone.
Many times, it is the caregivers — the parents, children, siblings, or friends — who feel the most helpless or upset when you’ve been diagnosed with cancer. They need to feel like they can do something. Sometimes, their attempts to help can seem completely inept or insulting — like booking you for a makeover the day your hair starts falling out — but try to understand where these efforts are coming from. If someone is truly your friend, they will never be intentionally insensitive! They might just be lost, not knowing what they can do to help, so they’re grasping at straws. Cut them some slack. You’re friends aren’t psychic, and chances are, they have no idea what a person with cancer needs (or needs to hear). Do them a favor, and throw them a bone. If you’re sick of pinkwashing and really just need a big, long, hug, you have to summon the courage to say to your friend, “You know, I so appreciate that you keep giving me pink bears, and you are really thoughtful to make an effort to show me you care. What I could really use from you right now is a bear hug…. and an Oprah Chai. Think we can take the bear to Starbucks?” Your friend will be so grateful to actually know what you need. So use your words, and remember that the people who love you only want to feel useful and helpful during this tough time for you. Give them what they need to be there for you.
9. Don’t Waste Your Energy.
I’m not going to lie: there are going to be jerks on this journey. There are going to be people who, when you say you’re worried about your recovery or survival, will belittle your concern or even try to blame you for your cancer! Recognize where this attitude comes from: their own fears of getting sick or dying. You see, some people need to believe that you “gave” yourself cancer, because if cancer is your fault, then a) it can’t happen to them and b) it means you must somehow be in control of whether you survive it or not. The people you love want to believe that beating cancer is as simple as you trying harder or taking the right medicine. They don’t want to believe that cancer can happen to anyone, and that the people they love can die from it no matter how badly they want them to live. We know the truth though: no one deserves cancer; no one asks for cancer. It’s unexpected and unfair. So when someone implies cancer is somehow your fault, the only appropriate response is to first, gently remind them of this. Let them know that you understand how your illness might be reminding them that they’re mortal, but you’d appreciate them keeping their theories (on why you got cancer, why you deserve it, or what you can do to keep it from coming back) to themselves. If they say they’re “only trying to help,” just say, “Well, that’s very thoughtful of you to try, but you’re actually not helping me,” and then give them an example of what would help you, such as reading a book about what cancer patients do want to hear. If someone continues to be a jerk, simply put some space between you and that person. On your road to recovery, you can’t afford to let people drain and depress you. Cancer can be draining and depressing enough by itself!
10. Design Your Survivorship Plan.
The last thing you need to do is really get a handle on what you want your “Life After Cancer” to look like. Have a plan for when you finish treatment that addresses the physical, emotional, and financial blows cancer will bring. Knowing where you want to be when this is all over will help you get through it. Start with a practical plan: how many checkups do you need? What are the important ones? Take a look at these Survivorship Plan options and find one that speaks to you. Next, I suggest you build a “ladder:” a list of anything and everything that cancer took away, threatened to take away, or made you think you couldn’t do. It might be running a marathon, seeing the Great Wall of China, or building a treehouse. Whatever they are, make a plan to check as many as you can off in the next five years. Remember, cancer can threaten your future, but it can’t take it away. You get to decide what happens next, and how you want to spend the rest of your life, be it 50 days or 50 years. Now is the time to write your second act!
