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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

To help you feel in control on a daily basis, and to maximize your body's disease fighting abilities, consider the following:

Life Lessons

  • If you learned life lessons during treatment and haven’t started putting them into practice, now is the time. Otherwise they may be lost until the day you wake up and wonder what happened.

Educate Family and Friends

With most illnesses, when treatment is over, life for everyone returns to normal. An immediate return to life the way it was before your diagnosis is likely what your friends expect.

If this is not the case with you because you have ongoing side effects such as diarrhea, constipation or an ostomy, the people around you need to be educated in a manner they understand about your ongoing needs. 

  • Explain which physical symptoms continue as well as unusual emotions.

  • Explain that while you are optimistic, colorectal cancer may recur and that this sometimes weighs on you.

  • Talk about the changes you are going through and your needs. 

  • Consider letting friends know you are likely to be anxious before going to medical appointments so they can be supportive during those periods of time.

  • Ask for any help you still need. 

Relationships May Need To Be Reexamined

  • Family roles likely shifted during treatment and the recovery period, with other family members taking on more of the chores and responsibility.
  • Take the time to look at how things have changed and whether they should remain that way --or whether you should suggest another change. Perhaps the change is to the way things were before your diagnosis. Or perhaps to yet a different way.
  • Your relationship with friends may also have shifted during your treatment. Reexamine those as well.
  • Relationships are mutual. Pay particular attention to their stories and needs if you haven't been.
  • If the diagnosis or treatment has changed the way you see things and you now see things differently than certain friends, be honest with yourself and think about whether the relationship is worth continuing.
  • Relationship Tips  Here are some ideas that have helped other people recovering from colorectal cancer treatment deal with relationship concerns:
    • Ask for help when you need it. Include your underage children. It will help children feel as if they are assisting if they have age appropriate chores to do. 
    • Accept help. When friends or family offer to help, say yes. Let them know things that they could do to make your life easier. In this way, you will get the support you need and your loved ones will feel helpful.
    • Talk about your needs. Ask each family member to talk about their needs and concerns. Don't let colorectal cancer be the 800 pound gorilla in the room that everyone knows is there, but no one talks about
  • Spouses and Significant Others
    • Your spouse or partner is likely to be anxious to regain balance. He or she has likely experienced the same fears you have. However, a spouse or partner may be reluctant to talk about them.
    • It may help to know that the incidence of separation and divorce is no higher for people with cancer than the general population.
    • Don't be surprised if issues and tensions that existed before the diagnosis resurface.
    • Things to do:
      • Talk about each of your feelings and your needs. The two of you have been through a stressful ordeal. Don't think that one conversation will be enough. It will take time to adjust to the emotions that are likely to stay around for a while.
      • Look for time alone together.
      • Work toward a balance that takes into account both of your needs.
      • Perhaps start intimacy with other methods such as cuddling, or massaging each others' backs. (For tips about sex and intimacy, click here.
    • If the situation with your spouse or partner is difficult to handle, consider speaking with a counselor or therapist, especially one who has experience in working with couples who are dealing with a situation similar to yours.
    • If it appears that things won't work out between you, wait until at least the nine month mark and preferably the twelve month mark before making and acting on a decision.
    • For more information, see: Couples
  • What To Do If You Have Children
    • Children don’t have any idea what to expect during post treatment. They likely expect that everything will return to the way it was right away.
    • Tell Children
      • Tell them about your situation and ongoing needs in an age appropriate manner.
      • Let your children know that you were scared too. Remind them you are fine now. You see the doctors to keep it that way.
      • Tell them that you will always be honest with them.
      • Under age children do not need to know about your worries about the future, or what could happen.
      • If you err on either side, do it on the side of caring too much.
    • Watch for reactions.
      • Reactions that may seem overboard for the immediate cause may be a substitute for fear that you may die.
      • Adolescent children may appear to be indifferent. Self absorption during adolescent years is a normal development. Each child will deal with fears about your health in his or her own way.
    • Helping children cope
      • Spend one-on-one time with each child.
      • Encourage each child to talk about how they feel now.
      • Ask teachers to watch for behavioral problems.
      • Prepare to answer the question: “Are you cured?” Be honest. For example, you can say something like: “I am okay now. I’m hopeful that I will stay that way.”
    • For more information, see: Children 101Children: How To Help Children CopeCommon  Behavioral Reactions Of Children And What To Do About Them

Be Active. Exercise

  • The Importance Of Overall Exercise
    • It is often said that exercise is one of the least risky and most beneficial treatment options doctors have to offer cancer survivors.
    • Exercise may also help prevent recurrence and possibly recurrence. Recent studies show that lack of physical activity increases the risk of developing colon cancer. This is in line with other studies which show that people who exercise regularly have about a 30-40 percent reduction in their risk of contracting colon cancer. Physical activity improves quality of life and diminishes emotional swings.
    • If your weight changed since your diagnosis, exercise will help you normalize it as well.
    • Exercise also has a large number of other benefits such as helping to prevent other chronic diseases, and reduce risk of cardiovascular and metabolic disease.
    • There does not seem to be any downside to exercise unless you have a serious heart or lung problem.
    • You can even exercise with an ostomy. (For more information, click here.)
    • You do not have to join a gym to get benefit from exercise.
  • Exercise And Incontinence
    • Incontinence is common after all types of colorectal cancer treatment.
    • There are exercises known as Kegel exercises which can help the bladder to hold urine. To learn more, click here
  • MET Hours
    • In general, studies show that the more vigorous the exercise, the greater the benefits. 
    • Consider the following which relates to colorectal cancer. There does not appear to be any harm in applying the concept of metabolic equivalent task (MET) hours to your exercise. One MET hour is the equivalent of the energy expended by the body during one hour of rest. You can use several MET hours of exercise during one real time hour. For example, one hour of doubles tennis is equal to 5 MET hours.
    • A study published in the Journal of the American Medical Association followed 2,987 women with colorectal cancer. Women who exercised more than three MET hours a week after diagnosis were less likely to die of their cancer.
    • To see a list of activities and the MET hours each generates, see: http://prevention.sph.sc.edu/tools/docs/documents_compendium.pdf offsite link
  • Exercise Programs For People With Cancer
    • If you have special needs, there are exercise programs designed for people with cancer throughout the country.
    • The American College of Sports Medicine has a certification program for health and fitness instructors who work with cancer patients. To find a trainer in your area, go to www.acsm.org, Click on "Certification."   Then click on "Find An ACSM Certified Trainer."  On the next page, scroll down to "ACSM/ACS Certified Cancer Exercise Trainer". (The program was developed with the American Cancer Society).
    • Other professionals who can help develop exercise programs for your specific needs and situation are physical therapists, occupational therapists and exercise physiologists.
    • For other programs, check with your local gyms, disease specific non-profit organizations, and your oncologist.
  • How To Sustain Exercise
    • Exercise can be difficult to sustain over time. Think about techniques to help keep you motivated. For instance:
      • Set up a system that reminds you periodically of why you exercise. For example, a posting on your refrigerator, or an alert that pops up on your computer every few weeks.
      • Find a buddy to exercise with. (One of the advantages of classes or gyms for people with cancer is the company and support of people in a similar situation). Note that an exercise buddy is not necessarily the same as a cancer buddy (link to article 1512).
  • For more information about exercise, see Exercise For Survivors.

NOTE: Check with your doctor before starting new exercise or increasing current exercise levels.

Do What You Can To Prevent Unnecessary Infections

Body Changes Can Be Managed

  • Our medical section describes the various bodily changes that may become permanent. Our document about ostomies describes how to manage living with an ostomy. (As you will see, there is nothing you cannot do with an ostomy).
  • For day-to-day living purposes, keep in mind that whatever the change, it can be managed. You are likely over the learning curve involved in anything new.
  • As a practical matter, physical changes from colorectal cancer should not keep you from doing the work you want to do (unless you have an ostomy and your work involves heavy lifting), from engaging in all life activities you enjoy, including sex, or even from travel. Activities may take more thought and preparation than previously, but that is a small price to pay for this amazing thing we call life.
  • If there are physical aspects that are affecting your ability to do the things you want to do, speak with people who have had experience with the situation to learn about how they have managed. For example, a cancer buddy or another person in a support group or self help group. If you have an ostomy, contact the United Ostomy Association tel.800.826.0826. 

Consider Getting A Pet

  • While pets are mentioned in other documents in this guide, they are mentioned here because there are numerous physical and emotional reasons to live with a pet. For instance, pets motivate people to exercise, help fight depression, loneliness and stress, reduce blood pressure, and even help prevent heart disease. Pets can reduce pain. Some studies indicate pets increase longevity.
  • While dogs and cats may be the first pets to come to mind, there are all kinds of pets with different characteristics to suit your physical, emotional and financial needs and lifestyle.  If you don't have a pet, consider getting one. Many doctors now even prescribe having a pet as part of medical care.
  • To learn about pets, including which to choose, how to avoid getting infected from a pet, and how to travel with a pet, click here.  

Keep in mind that You Are Not Your Disease

NOTE: If You Had Chemotherapy Or Radiation And Want To Have Children: For information, click here

If You Had Chemotherapy Or Radiation And Want To Have Children

If you had chemotherapy or radiation, it is advisable to wait until the effects wear off before conceiving a child.

Women:

  • If chemotherapy caused you to stop menstruating do not assume that you are not fertile just because you stopped menstruating. Use condoms. If you get pregnant, and cancer returns, you will face questions about the impact of cancer treatments on the fetus and about possibly terminating the pregnancy or risking your life.

  • Pregnancy After Cancer: Pregnancy does not cause cancer. However, hormones that accompany pregnancy may hasten a recurrence. Current thought is it is okay to get pregnant if you are cancer free for at least three years – preferably for five. Speak with your cancer doctor for information about your particular situation. You can find additional information from Young Survival Coalition (www.youngsurvival.org offsite link) and Fertile Hope (www.fertilehope.org) offsite link

Adoption.

The Americans With Disabilities Act and similar laws (ADA) prohibits discrimination against people with a disability. The law covers adoption agencies. Your colorectal cancer may or may not be considered to be a disability for purposes of the act depending on the impact on your life.

Whether it is covered or not, expect that an adoption agency will want clarification about your health status and the possibility of a recurrence. At least a letter from your cancer doctor will likely be required. Do not be surprised if the agency requests that you wait for a few years after end of treatment before adopting.

You Are Not Your Disease

By Sally Fisher*

"We have obtained this life as a human being. 

Whether we make it worthwhile or not depends on our mental attitude."

The Dalai Lama

We can choose whether to become our condition or to be a person living with a condition. We can decide whether our life becomes about our disease or whether our disease is simply a part of our entire life.

In the beginning it is appropriate and natural to be enveloped and a bit haunted by the idea that things have changed. Things have indeed changed with a diagnosis. Our fantasy of immortality is gone instantaneously. Our illusion that we are surrounded by some sort of invisible protective shield, and that these things happen only to other people, is shattered. Once we've begun to accept these changes into our consciousness, it's time to look at how we want to respond to our new reality. Most are variations on the three themes illustrated in the stories of my son Stephen, and of Amy and Al: (1) we can be felled by the news, (2) we can deny it, both of which mean that you choose to let your disease take over the featured position in your life, or (3) we can accept the news so that we can deal with it.

The choice is yours. You can either become your disease or you can have a disease. Or to state it in a different way: you can incorporate your condition into your world so that you can live as fully as possible while you ride the wave of reality. This means adopting a mental attitude that makes your life worthwhile.

The stories of Stephen, Amy and Al follow.

Stephen

I remember the moment that my son Stephen, then in his early teens, was diagnosed with Hodgkin's Disease with a clarity I wish I could apply to yesterday. He had been suffering periodic swollen glands, sleepiness, and aching. Something was not quite right, but the doctors couldn't identify it. Because of his age, they dismissed his complaints as related to the onset of adolescence and my concern as symptomatic of over-protection or maternal neurosis.

I finally arranged for him to see a doctor I knew well and trusted in Chicago while he was there on a visit. When I called to set up the appointment I insisted on a relentless search for whatever it was that was wrong. This was my child. I knew in my bones that something was up. The day he went for tests Stephen was symptom free, in fact he had played baseball all morning.

I remember getting the news from the doctor over the phone and wandering around my loft, pacing in circles, tears streaming down my face, staring out the window at people going about the course of their daily routine, laughing, shopping, talking. How dare they be having a nice day? Then, realizing that something had to be done about the situation, I went into high gear arranging everything from oncologists to healers. Several days later I went to the airport to pick up Stephen.

I stood at the gate waiting for my boy and almost missed him. I saw someone who resembled the son I'd put on the plane a week earlier but stooped like an old man walking slowly and carefully towards me. He was colorless, sallow, and gallows sad. We hugged tightly and cried together. As we headed towards baggage claim he could barely walk. I became very alarmed, then suddenly pictures of my parents treating him like a "cancer victim," furtive glances, periodic sighs, cheek and head strokings, and admonitions to save his strength flashed before my mind's eyes. Of course! In their concern they had sapped him of his very life force. He had become his disease. He had changed in a heartbeat from a kid playing center field to a dying child.

As we walked I asked him if he felt sick. He described his symptoms. I told him they were easily diagnosable as panic and depression, which seemed about right given the situation. I suggested that we go somewhere so we could talk about how he felt. He brightened a little. I asked him if he was in pain. He answered that he might die. I said that I knew that but where did he hurt. He answered that he had cancer. I stuck to my guns, though it was hard, but in reality nothing had changed. Everything he was going through was the result of a piece of information not his cancer. I kept asking him where it hurt until he realized that the hurt was not physical, that his heart was broken, he didn't know what was going to happen to him and he was scared. He could deal with that. He straightened to his full height and his normal coloring began to reappear. Arm in arm we collected his luggage and went to his favorite place for the best burger in town.

Our story has a happy healthy ending. Stephen went through surgery, radiation and doses of unpleasant medication but through it all he talked about his feeling, his fears and basically lived his life as normally as possible. He was a kid who had a disease, it didn't have him. He held his illness and pain in the container of his whole life rather than allow the illness to become the container for everything he thought, felt and did.

Amy

Sadly this isn't the case for everyone. Amy, a nurse who attended several workshops that I created for Caregivers, was diagnosed with lupus. She was constantly exhausted, she ran high fevers, she had severe joint pain, she had rashes and a raft of other related ills, but worst of all, she lost herself in the process of dealing with the situation. She was unable to work and take care of others, which was how she identified her value. She no longer knew who she was. She began to identify herself as her condition, her disease.

She was unaccustomed to letting people help out and unwilling to accept support. After all, giving support and taking care was her job! She put up a front while beneath her veneer she was suffering, not just from her symptoms, but from depression. She pushed everyone away but her closest family, and then felt isolated, helpless and alone. She immersed herself in researching lupus, which was a great idea, but she became so obsessed with the research and with her fight that she lost all perspective and lost sight of the idea that her life had room for anything more. Even her family began to lose patience because all she ever spoke or thought about was her plight and the results of her tireless search for answers. She lived every day of her illness in its context and so lost touch with everything that made her laugh, brought her pleasure or had always had meaning to her.

Al

Al was an entirely different story. After Al was given a Hepatitis C diagnosis he joined a healing group at his new age church. He was determined not to let his diagnosis get him down for even a moment. Al had been following a practitioner who championed positive thinking and warned against the perils of anger, negativity or buying into an illness.

Al skipped over the shocked, outraged, frightened, upset that usually follows hot on the heels of finding out that your liver is in jeopardy. He skipped right over the doubt, the concern, the sense that his body had betrayed him and went right to saying that all was right in his world, everything was perfect, and that he was fine, just fine. Al spent every waking hour affirming that his disease was going away and eliminated anyone from his life who dared suggest that everything wasn't the way he had constructed it.

Though Al wouldn't deal with, acknowledge, treat or confront his Hepatitis, it was there none the less. Wishful thinking, magical thinking, and denial can't make something go away but it can consume your life. What happened to Al, of course, was that he became his disease as surely as if he'd drowned in it. It's just the flip side of Amy. He gave his power over to his disease by being unwilling to embrace the truth. He let himself become really sick before he finally faced the truth. He put his name on a transplant list and became one of the lucky ones.

It doesn't matter what you have been diagnosed with. The choice is yours.

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*Sally Fisher is Founder of Intersect Worldwide. Intersect Worldwide which works at the intersection of HIV and violence against women and girls, www.intersectworldwide.org. offsite link  Sally is author of Life Mastery (Crown Publishing) and is currently working on a new book: Don't Just Stand There, Do Something