Patient Pointers

Most cancer websites will give you the medical who, what and where related to your diagnosis and treatment. What you’ll find here is different. This is experience “from the trenches.” What I’ve learned along the way, and things I wish I had known or done before starting this journey. Things that only someone who has been there knows.

You Have Cancer. Now What?

There’s no doubt about it, three of the most terrifying words in the English language are, “You have cancer.” In Crazy Sexy Cancer Tips, Kris Carr says it best. When first diagnosed, the only thing you hear is, “Blah, blah, CANCER, blah, blah, YOU’RE GOING TO DIE, blah, blah, CANCER.”

But believe it or not, it does get easier as you go along. It’s hardest at first, as the unknown is terrifying. But, dealing with cancer can become routine. How, you ask? I found it best to approach my fight using the following tools.

Getting Your Head in the Game

A cancer diagnosis will put you into a free-fall. It’s a devastating blow that will take time to process. But after the initial panic, return to a calm state and regain your focus ASAP. You have some difficult decisions to make. No question, you will be scared. You won’t feel safe. The biggest monster of all came out from under the bed. But, you will discover you are stronger than you know.

• First off, remember that anything you are feeling is normal and OK, even if it makes no sense.
• You’ll most likely go through the five stages of grief, as you would with any other major loss: denial, anger, bargaining, depression, and acceptance.
• Expect the “Why Me’s.” At some point, this crosses everyone’s mind. No, it’s not fair, but you won’t ever find an answer. Try not to spend a lot of energy trying to figure out things that have no answer.
• There’s a good chance you will melt-down at some point – perhaps over something completely insignificant. And most likely more than once, but that’s OK. I got through diagnosis, staging and the beginning of treatment before I had my first “makes no sense” breakdown when I couldn’t find a file folder. Lump on the ground, sobbing uncontrollably, freak-out. My poor family had no clue what to do. Looking back now, I’m amused thinking about the absurdity of my reaction. It certainly wasn’t funny then.
• It’s perfectly OK to visit Pity-land from time-to-time, but don’t move there.
• Make a decision to pull yourself out of your funk.
• Your biggest assets right now will be your determination, discipline, focus and ability to distract yourself.
• Most importantly, you have to want to get better. No excuses. You have to help yourself or no one can.
• Look at it as if your body is a corporation and your head is the CEO. The job of the CEO is to observe the problem, assess the situation, manage with logic, use common sense and leadership; and make difficult decisions for the good of the whole.

Keep Your Chin Up

I can’t say it enough, stay as positive as you can. It’s not about avoiding the truth of the situation and putting on your rose-colored glasses. It’s about adopting a winning attitude.

Remaining positive:

• Develop a defiant attitude – “Stupid cells aren’t going to get the best of me!”
• Remember, you are battling cancer, you can do anything! You are a survivor from Day 1!
• There can be a danger in the “you-must-be-positive” mantra. If you don’t remain positive, it’s not your fault if treatment doesn’t go well. Everyone has their ups and downs. Just do your best to see the glass as half full. There will be days where it will be half empty. And there will be days where you just want to throw the glass across the room.

Watch your self-talk:

• Use positive self-talk. What you think is a choice. (It will take time to break bad self-talk habits.)
• Watch the words and phrases you use: victim; I did something to deserve this; I’m ugly.
• There’s no room for could-a, should-a, would-a.
• Your mind has an effect on your body. When you’re angry or sad, you physically feel bad. Conversely, when you’re happy your body feels good.

Taking Back Control

When you are first diagnosed, it seems like the end of the world. It’s as if everything is out of control. It’s difficult to think straight and make decisions. But, now is not the time to curl up in a ball. You must have your wits about you. The more grounded you are, the better your decisions.

• Be your own advocate. No one cares more about you getting well than you do.
• The only thing you have complete control over is your attitude. Keep the negative thoughts away as best as you can.
• Focus on what you can control.
• Remember, you are in charge. Take control of your life. Now is not the time to be a passenger on this ride. You are the driver!
• Get rid of everything “toxic” in your life – thoughts, friends, habits.
• Keep the supportive people in your life and dump those who make it more difficult. This isn’t the time for unnecessary drama.
• It’s OK to be selfish (within reason, of course). It’s about you right now.
• Establish boundaries in your life. Ask yourself, “Does this inspire or tire?”
• Get organized – it takes back some of the power. Get a calendar, notebook, and filing system.
• Be politely assertive. Don’t let anyone make you a number.

Knowledge is Power!

A fully informed individual is more likely to make the most appropriate decisions. In addition, those who consider themselves adequately informed report less stress and a greater sense of well being during their illness. No matter the reality of the situation, the unknown is always more frightening.

• Knowledge will give you a better grasp of your situation.
• The more you know, the more in control you will feel. Knowledge makes things feel less overwhelming.
• Do your own research. Don’t depend solely on what one doctor tells you. If you feel too overwhelmed, ask friends or family for help.
• If you feel too fragile or overwhelmed, have someone else do the research and then give it to you as YOU want it or when you ready.
• Take your time – all of this is new and terrifying, but knowledge makes it less so.
• Remember, no case is “typical.” Everyone is different – diagnosis, treatment, side effects, mentally. No two people are the same.

Know your body, know your disease:

• Understand your disease and how it progresses.
• Be informed of the treatment options available.
• Know the standard staging and follow-up tests, and their recommended frequency.
• Familiarize yourself with the part of body affected by the disease or proposed treatment. For example, if the doctor wants to take out an organ, you should really know what that “bonus” piece does.

Where can you find this info?

• Ask your medical team for printed info or online sources they recommend. Most waiting rooms have a good deal of information available.
• Internet. An amazing resource, however, proceed with caution.
  
• Local organizations. Your local American Cancer Society has a ton of quality literature available at no charge, as do most disease-specific organizations.
• Our Resources page. Check our resources page for a list of organizations and publications we have found helpful.

Why is this so important?

• If you don’t know what’s normal, you won’t know what to expect or report.
• When you have minor issues, you can learn the cause and how to fix them. For example, when I get light-headed, the cause is almost always dehydration, so I know to pump-up my liquid intake.
• You can’t always rely on what one person tells you. A close family member was told there were no options for her colon cancer because of her “poor health.” (She wasn’t in poor health.) We asked specifically about a chemo protocol that is fairly standard, but was not presented by the doctor. Our family member eventually had this chemo and went into remission nearly five years ago. Her doctor also didn’t see a need for a follow-up colonoscopy until five years after completing treatment. Wrong answer! She goes in annually.
• No one knows your body better than you. Trust your gut. At one point I knew my shortness of breath just felt “different.” Turns out I had a blood clot covering 30% of one of my lungs.
• Bottom line, any doc or nurse worth their salt wants an informed and involved patient. It makes their job easier.

Curse of the Internet:

There should be big, flashing warning when you type “cancer” into a search engine. Google can be your best friend, but it can also be your worst enemy. Keep in mind that the information you find online will often be worst-case scenarios. Be sure you check sources and dates of information. (I originally diagnosed myself with 1968 medical book. Never made that mistake again.)

Making Decisions

• Make decisions with your head. Try to remove your emotions from the decision-making process. One way to do that is to look at your situation as if it were happening to a stranger.
• Some people prefer to take a more conservative approach, while others want to get in there and blast, burn, poison, or slice it out. Your decision must be based upon your personal values and risk tolerance.
• Be aware of different treatments or options (including having no treatment) and fairly discuss the pros and cons. Understand all options and alternatives with their side effects and risks.
• Get additional opinions. Any doc worth their salt will help and encourage you to do so.
• Research doctors and hospitals. Don’t be afraid to travel to specialists.
• Remember that generally, surgeons will want to do surgery; radiation oncologists will recommend radiation; and a medical oncologists will recommend chemo.
• Know the goal of treatment. Is it a cure? To stop the disease progression? Palliative care?
• Find out if you will be able to participate in normal activities, such as work or school.
• Trust your gut. The decisions you make must be right for you,
• Don’t let anyone (even your doc) push you into something you are not comfortable with. You are in charge.
• Don’t allow yourself to be scared into anything.
• You have to believe the treatment will work.
• Make the best decision you can, with the information that’s available. At that point don’t look back or second-guess your decision. You have to be 100% into the option chosen.
• I even asked myself, “If this fails will I regret it.” Ask yourself and if the answer is “no,” then go full-steam ahead with no regrets. Know you made the best decision you could with all the available information.

Approaching Treatment

• Ignore the numbers. You are not a statistic.
• No one can measure your desire, will, or attitude. No one can calculate what’s in you – your determination, will to live, love of life, or motivation.
• Remember that cure rates report on those who were treated five or more years ago, by definition (as “cure” is defined as five years cancer-free). Treatments evolve quickly and there are always new discoveries.
• Write out a timeline of treatment, tests, blood work and doctor’s appointments. It will help you tremendously.
• Take a tour of the facility before starting treatment. Check out the scanning equipment, radiation room, or the chemo room beforehand. Sometimes it’s easier if you’re not going into the unknown.
• Be prepared for privacy and modesty to go out the door.
• When you are first prescribed a medication, don’t freak out about the list of side effects or alternative uses. Be aware of what could happen, but know that the side effects won’t necessarily happen to you.

Your Team

Medical Team

Remember, you are not alone. You have a complete medical team – radiation and medical oncologists, surgeon, primary care doc, physician assistant (PA), nurses, pharmacist, nutritionist, physical therapist, and social workers.

• You have a medical “team,” but remember you’re the owner, general manager and head coach.
• Make sure you know how to reach your doctor, PA, and nurse. Keep the phone numbers and hours handy.
• Know how to reach your team (or who to call) after hours or on weekends or holidays.
• You can look at your chart and medical records. It’s yours.
• Befriend your PA and nurse. They are easier to reach than your doctor, are a wealth of info and, if necessary, they have a direct line to doc.
• Treat the entire team with respect.

Communicating with Your Medical Team

• Don’t “bury the lead.” When talking with your medical team, start out with the most pressing or important question.
• If you are having a specific issue, don’t wait to be asked. Offer that info.
• If you don’t understand a word, have your doc spell it or write it down for you.
• Make sure you understand all instructions, terms and words.  For example, prior to a PET scan, you are not supposed to eat anything. This includes breath mints.
• Be as specific as you can when reporting symptoms. When describing pain, use words such as burning, throbbing, stabbing, dull, or sharp, Tell your team what triggers it, what makes it worse or better, when during the day it is worst, and its severity (on a scale of 1 to 10).
• Let them know when things aren’t right. There is always something that can be done for side effects. You don’t have to suffer.
• If one thing doesn’t work, ask for something else. There are almost always alternatives available.
• Answer all questions honestly.
• Tell them everything. Even things you may not think are related may be. I had breathing problems and went to my pulmonary doctor. The problem turned out to be an issue with my blood, which was handled by my oncologist.
• It’s important to share everything – even “embarrassing” stuff.
• Make sure your team knows all meds you are taking – especially herbs, supplements, and over-the-counter drugs.

Doc Relationship

• I can’t stress the importance of having a good relationship with your doctor. It’s important that you are comfortable. Ideally, this will be a long-term, life-long relationship.
• You may not “click” with your doc, and that’s OK. Simply find a new one.
• If your doctor is dismissive or ignores you, run away as fast as you can.
• Don’t count on docs keeping everything straight off the top of their head. I have an allergy that prevents me from getting a certain type of scan and I often have to remind my team of that fact.
• It’s OK to fire docs and hospitals – even “the best.” Don’t be blinded by reputation or name. Some of my worst appointments and doctors have been at world-renowned facilities. And I’ve fired them all.

Appointment Tips

• Realize appointments may not always be on time and you may have to wait. This field means there can be a lot of emergencies. You want someone who will take the time to be there for you when you need them.
• To minimize waiting, ask for the first appointment of the day or the first one after lunch.
• Keep a journal or log of your questions, symptoms, and side effects and bring it with you to all appointments. Even write down things that may seem inconsequential. You never know what may be important.
• Have your list of questions with you and write down the answers.
• Don’t go alone to any appointment, be it a chemo session or doctor’s appointment. Bring a second set of ears.
• Bring a notebook and pen and take notes. (Or bring a personal audio recorder and record the appointment.)
• If you know you’ll have a ton of questions or you anticipate a complex visit, ask if a double appointment would be appropriate so you’ll have enough time.
• Make sure all of your questions are answered. Ask, ask, ask, and ask again. Be certain that you understand everything. If necessary, have your doc literally draw you a picture, use visual aids, or show you books. Have them clarify things until you fully understand.
• The only stupid question is the one not asked.
• If you have any questions later, find out how you can go about getting answers. E-mail? Ask the nurse or PA?
• If asked how you are, don’t say “You tell me.” – even though it is clever (and honest).
• At the end of the appointment, be sure to recap everything and know what the next steps are. Summarize any changes to your medication, next steps, and next appointment.
• Know what upcoming tests you have, where they will be, how you schedule them, and how and when you’ll get the results.

Caregiver

Caregivers are the glue that holds your world together. They manage our life so we can manage our illness and recovery. They see you struggle, love you and want to help in every way possible.

• Acknowledge your caregivers and what they are going through. It is different, but just as difficult.
• Keep in mind that their workload doubles as ours diminish.
• Often times, we’re permitted to collapse and soak up sympathy while we expect them to be strong and stoic. They need an outlet and support system of their own.
• When we manage our illness with spirit and good humor, everyone around us acts and feels better. And as a result, we actually feel better.
• It’s in your best interest to have your caregivers in good spirits. Life is better for you if they are happy.
• Let them help you with things. Don’t be stubborn. (This tip comes from experience.)

Family & Friends

When someone is diagnosed with cancer, it’s difficult for everyone involved. Not just the patient and caregiver, but everyone around them – extended family, friends, even acquaintances. No one knows what to say or do.

• Realize that others have best intentions. The situation is difficult and uncomfortable. Most people don’t know what to do or say.
• After a cancer diagnosis people around you may change. Some may freak and run away. It’s simply more than they can handle.
• You might lose people who you thought would be there, and find new closeness with others that will surprise you.
• People who are worth it will stick around. Others? See ya! You don’t need drama.
• Accept help. The people around you want to do something, as they feel helpless. Don’t deprive them of the opportunity to show you that they care.
• Ask for help – from family and friends, neighbors, or church. People want to help but don’t know what to do. Ask them for specifics.
• Try to keep everyone updated on your status. There are a lot of options available – e-mail, create a blog, establish a phone tree, or use a free online service such as CaringBridge.org or Carepages.org. You can always put updates on your outgoing voicemail message. Or simply delegate this duty to someone you trust. The last thing you need to worry about at the end of the day is that unwanted call or e-mail, when all you want to do is escape.
• Use an online tool like lotsahelpinghands.com to help organize your family and friends. You can list areas where you need help and your loved ones can sign-up for specific days or tasks.

Acquaintances

Some of your most supportive relationships might just be with those you don’t know well, or perhaps never even meet face-to-face.

• I was hesitant to talk to the people closest to me. Either I didn’t want to upset them (I was protecting them) or I didn’t want to bother anyone.
• Online support groups and forums can connect you with people who are going through the same thing as you, or people who have already been down the same road. Their support can be the most helpful of your entire journey.
• Be open to support from unexpected sources. One of the things that touched me the most when I was away from home for treatment was my neighbors sending me notes and a Christmas gift. And these were neighbors I didn’t know particularly well.

Benefits

New and enhanced relationships are just the tip of the iceberg when it comes to the benefits (yes, benefits) of a cancer diagnosis.

• You gain a new appreciation for each day and an improved perspective on what’s really important.
• You get the opportunity to prove to yourself how strong you really are.
• You can play the “Cancer Card.” And it works as long as you don’t overplay your hand!
• You develop a new appreciation for medical shows such as House.
• You’ll learn new words and phrases that will impress friends and family. It will make you the hit of the cocktail party and expand your Jeopardy knowledge.
• I wouldn’t trade the knowledge, perspective, and confidence I’ve gained for anything. I truly believe I am a better person now than I was BC (before cancer).
• And I’ve learned that life is not a dress rehearsal. Start living it now.