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A Personal Message

from Two-Time Cancer Survivor Joanie Willis

I would like to get a little personal now and give you some things to think about: a bit of advice, a few warnings, suggestions, and helpful hints from someone who has “been there and done that”…a couple of times.

Different people are driven by different dynamics and no two will approach crisis in the same way. The diagnosis of cancer brings out the unexpected in us and in those around us. I’ve seen and experienced a lot in the last six years.

I have watched families and friends rise to the occasion by surrounding a patient with unrelenting love and support. I have seen just the opposite, as well: friends who didn’t call because of their own fears and spouses who have abandoned their partners to deal alone with that which they could not. I have sat by powerlessly and observed as cancer patients have fallen into the trap of depression. I’ve seen many emerge brand-new from the trauma and the darkness. I have watched patients who could barely stand up, shuffle slowly across the floor of a doctor’s office to place their arms around a crying stranger. I have been witness to families fighting over nothing at all. I’ve observed the power of determined cancer patients who have made getting well their priority. I’ve watched other patients become bitter and resentful as their priority has become everything but their health. I’ve been honored to observe such bravery in the halls of hospitals and in treatment rooms that it has changed my life forever. I have seen the best in others and myself, and I have seen the worst, as well.

Most patients will encounter problems at some level with family, friends, feelings, unfamiliar thoughts, or difficult circumstances. Emotionally you may feel as if you are up to your neck in uncharted waters, but there are a few basics that I believe can help you stay afloat.

First and foremost, do not expect others suddenly to alter their personalities because you are ill. Chances are if you have not been able to get emotional support, open communication, and an intimate connection with someone preceding cancer, you will not suddenly be able to obtain it now. If you are telling a companion your innermost private thoughts and he or she isn’t connecting, be smart and go where you have always gone in the past to relate your feelings.

Remember that not everyone has the gift of knowing what to say. Not all people know how to show compassion or empathize, and because you are ill doesn’t mean that those things will automatically change. For the most part, your loved ones will love you in the way that they always have. Some will listen to you for five hours as you fall apart, and some will make you a chocolate shake. Take it for what it is: their attempt at comfort.

Do not put expectations on others—you are setting them up for failure. During this time it will be easy to feel let down by those you had hoped would instantly understand you, and resentment can rush in. Don’t allow that. Treasure everything that is done for you by those who want to show their love their way.

Don’t get angry if friends and family members cannot grasp the impact that recurring fear holds over you each time you have a diagnostic test. They cannot possibly understand the experience of having one’s fate being decided by a CT scan or blood
test. Realize too, that the longer you stay in remission the more relaxed about your tests everyone else may become. They may feel that the importance of the tests has diminished. You’ll feel differently.

Whatever you are thinking has been thought by someone else with cancer. You are not crazy. Don’t hide from these thoughts and don’t be hard on yourself, either. Remember, just because a particular family member or friend cannot understand where you are coming from doesn’t mean that where you are coming from isn’t understandable. Join a support group!

Beware of mentally hibernating. That is a dangerous thing to do and can lead to depression. After months and months of dealing with the crisis of cancer, you may become sick and tired of being sick and tired. You especially get weary of talking out loud about your illness to people who you feel sure are just as weary of hearing about it. If you have fears, worries, anxiety and questions that plague your mind, you need to keep talking. The day will come when you feel you have said it all. Until then….

 • Watch out for guilt; there seems to be tons of it circulating around those with cancer. Any number of things can cause you to feel self-condemnation: The fact that you require so much care and are costing your family a bundle of money; the realization that someone will have to take time out the their busy day to get you to the doctors. You blame yourself that your children are worried. You feel self-recrimination for thinking that you have become a burden. Or even feel guilty that you are depressed and not your normal upbeat self. GET OVER IT!! These thoughts are self-defeating. You did not ask for this disease and no matter how much your loved ones have to go through, they are not the ones going through cancer, you are. So be thankful for every single thing that others do for you. Remember that you would do the same for them and discard the guilt.

 • Be careful that you don’t assume the role of super-patient. There is no right or wrong way to have and fight the disease of cancer; you will find the best way for you. Live one day at a time. If you’re happy, show it. If you’re hurting, talk about it. Don’t let the expectations of others dictate how you get through these days. However you handle this crisis is the best way for you to handle this crisis.
Watch out for resentment! It is like drinking poison and expecting someone else to die from it. Do not hold on to unforgiveness, anger, hurt, hostility, rage, or sadness. If something needs to be settled, for crying out loud, settle it. Find a minister, mentor, trusted friend, or a counselor to help you with your issues. There is a lot on your plate right now, but this can’t wait. Forgiving someone is not for his or her benefit, it is for yours.

Take your pride and throw it out the window. Offer an apology to every person that you know deep in your heart deserves one. If apologies come your way, accept them.                                       

 • Spend time loving your children. Tell them you are proud of them, that you cherish them, and that they have enriched your life. Remember that they are scared, too.
Don’t be a martyr. People will eventually see through it. Self-pity isn’t all that bad as long as you immerse yourself in it, cry like a banshee, and move on. Don’t wonder “why me?” It’s counterproductive. The only answers you can come up with to a question like that are negative ones.     

 • Don’t overdo trying to prove something to yourself or others. Nothing can play games with your mental state the way fatigue can. Cancer and its treatments will “take it out of you,” and your exhaustion can leave you very vulnerable and touchy. Rest every chance you get. Keep in mind that if you suddenly feel like you are a “victim” you may just be bone-weary.

Dig a hole 60-feet deep. Bury all thoughts that pertain to feeling useless because you can’t do what you used to do. Of course you can’t; you are dealing with cancer. Let others help you. It will make them feel valuable and will nurture you.
Face the reality that you may never get back to the way you were before cancer. Grieve the loss and accept yourself. Don’t allow the frustration of who you have become overpower the fact that you are alive. Bear in mind what is important here. If you can afford to lay off work while you are going through treatments and recuperating, do it. If it would drive you crazy to be stuck at home, then keep working. This is your life and you know what is best for you. 

Watch out for the green-eyed devil. There is much to be envious of. Basic things such as taking one’s health for granted, carefree laughter, mobility, energy, holding a job, eating, having hair, the ability to exercise, a full night’s sleep, a blank mind, a pain-free day and confidence in the future. The list goes on and on. Envy leads to resentfulness so don’t think about “what everyone else has.” It won’t do you a bit of good.

 • Think of others. If you can’t stop thinking about your cancer and it is driving you insane, try thinking about someone else. The best thing I ever did during my bouts with cancer was to focus on helping patients who had just been diagnosed. I personally think that the act of giving during that time is what saved me.
Read this paragraph twice. It’s that important. People who have never had cancer CANNOT understand every single thing you are going through. They can listen to you, console you, hand you a pain pill, cry with you, worry about you, rub your legs, and even be more frightened for you than you are yourself, but they cannot know what it is like to have cancer. At some point, you will feel let down if you don’t continually bear that in mind. Remember, I said read this again.

When you get into remission (and I pray that you will), your friends and family will expect you to move on. Don’t let that upset you. You may need to contemplate the impact that cancer has had on your life and to analyze what the victory of defeating this disease has cost you. That will likely take time.

In addition, you may find it almost impossible to believe that you are actually in remission. You may become acutely aware of every headache, sniffle, eye twitch, backache, or twinge of pain. This awareness may bring on intense fear and the thought that the cancer has returned. These feelings are completely normal. If the pain doesn’t go away or if it intensifies after a few days, call your doctor for reassurance. Be gentle with yourself during this period of healing. The extreme highs and lows can be an open door to depression. Don’t expect to bounce right back. Take your have tomorrow.

Well, there it is, a bit of advice, a few warnings, suggestions, and helpful hints.
I’m not terribly proud to admit it, but I am intimately acquainted with everything I’ve
written about in this letter. These attributes have been part and parcel of my cancer
experience. I’ve laid bare my imperfections and shortcomings in hopes that it might in
some way be of help to you.

If I could change one thing in the world, I would change that you have ever heard the words “you have cancer.” I hate that you have cancer, I really do. I am going to fight this disease in any way that I can. You fight it in any way that you can. Maybe together we can win.

In the meantime, I’ll be praying for you.

–Joanie Willis