Why Cancer Isn't Over When You Ring The Bell

by Jane Ashley

Most cancer patients expect that when they complete their cancer treatment, they’ll pick up where they left off with their lives. They think that it will be kind of like the SERVPRO® slogan — Like it never even happened.®

Sail Towards The Sun

We believe (or want to believe) that the time spent in cancer treatment was just a bad dream, and that once treatment has ended, we are done — finished — cured — never going back to those days again.

Are our expectations realistic?

Many cancer survivors are surprised when we feel let down, anxious and not as joyful as we expected.
Experts tells us that it takes as long for our bodies to recover as the time spent in treatment. If treatment took six months, then it will take at least six months for us to regain our strength, balance and stamina. The longer we are in treatment, the longer it takes for us to bounce back. So be realistic. Don’t expect to feel like your old self instantly.

There are the emotional elements of having cancer to process afterward. During treatment, we don’t have time to process our diagnosis and treatment. Our treatment time is spent going to doctor’s visits, chemotherapy infusions, radiation treatments, scans and other related appointments.

Now, we’re at home and told to come back in three months. We have time to think about the enormity of what happened and how cancer may impact our future. We miss our treatment team and their support.

There is no getting around this simple, irrefutable fact – once a cancer patient, always a cancer survivor . Ringing the bell at the chemo center or radiation does not end our journey. It marks the end of active treatment and the beginning of survivorship.

You And Me Got Awhole Lot Of History

Why surviving cancer isn’t what we expected …

We are grateful to be survivors. But life after a cancer diagnosis is different — not worse, perhaps better in some ways — but different. Let’s examine the reasons that life isn’t the same as before.

• Living life between scans and/or bloodwork. We didn’t realize that we would compartmentalize our lives, based on our doctor appointments. At first, many of us have scans every three months. So we only plan three months out, until the next scan. We’re afraid to make long-term plans because we’ve have scans coming up in 3 months or 6 months. So we live our lives from scan to scan. Trust me on this point, I’ve been guilty of not planning anything until my next scan.

* More doctor appointments than we realized. I wasn’t prepared for how many doctors’ appointments that I would have in the years following my Stage IV diagnosis and treatment. Even though I’m almost 4 years post-treatment and NED (No Evidence of Disease), my annual visits include:

4 oncology appointments
2 scan appointments
4 bloodwork appointments
8 port flush appointments
2 surgeon appointments
1 radiology oncologist appointment
1 GYN/mammogram appointment

That’s 22 appointments annually if nothing comes up that needs attention. All these appointments require time, travel and copays. Many us were “seemingly” healthy up until our diagnosis and might have seen a doctor on every couple of years before cancer. Now, it seems that all we do is go to doctors.

Worry Never Robs Tomorrow

• Scanxiety. The anxiety while waiting for our scan results is excruciating — all of those “what if’s” twirling around in our heads to disturb our sleep.

• Worry about modifying our lifestyle. None of us ever want to be on deathbeds and say to ourselves, “Gee, I wish that I had exercised more.” Our oncologists suggest losing weight, more exercise and eating less red meat as ways to help prevent recurrence of our cancer. Once we get a year or two past treatment, the urgency to exercise and eat healthy wanes. Then, we find ourselves worrying if we are doing enough to keep our cancer from coming back.

• Lingering side effects. Many treatments leave lingering side effects including peripheral neuropathy, lymphedema, chemo brain , sexual issues or early-onset menopause. Radiation damage continues for years for those of us who had radiation. Not only do our cancer treatments cause late-effect side effects, but these side effects serve as a daily reminder that we had cancer.

• Scars. Some of our bodies look like patch-work quilts because we’ve had cancer surgery — double mastectomies, colon resections, liver resections or lung surgery. We may even have had to have an amputation because of bone cancer.

• Financial toxicity. We may suffer financial consequences for years to come. Some of us make monthly payments on our hospital and cancer treatment center bills. Many patients are left unable to work, we have to take early retirement or go on disability. Financial toxicity is one of cancer’s dirty little secrets that no one wants to talk about.

• Fear of recurrence. Our fear of recurrence never seems to go away. We hear about someone who has a recurrence 25 years later. “When are we safe?” we wonder. According to the National Cancer Institute, most cancers recur within the first five years after treatment. We must learn to live with the fear of recurrence or else, we’ll destroy our quality of life. For me, I stay busy and try to find JOY in my daily life.

• Known as that woman or man who had “such and such” cancer. We, as cancer survivors, may be labeled as “the women who had breast cancer, “the man who had cancer three times” or “the woman who had Stage IV rectal cancer.” I, personally, am fine with those labels. This sort of recognition means that we impressed friends and co-workers with our tenacity and strength. Don’t let a label distress you.

What can we do to regain a feeling of control?

Do you have a survivorship plan? It’s a record of your treatment and a plan of follow-up care to help ensure that you get the check-ups you need, get help for late-effect side effects and receive adequate screenings to detect a recurrence.

Part of your survivorship plan includes recommendations to help prevent recurrence. Some of these recommendations are:

• Avoid other potential health problems like obesity, diabetes, high blood pressure and osteoporosis. Stop smoking, eat healthy, lose weight (if needed), limit alcohol, exercise, use sunscreen and learn to cope with stress.

• Follow specific recommendations regarding your particular cancer — for my type of cancer (colorectal) , these recommendations are specific and include high daily doses of Vitamin D3, a daily aspirin, 4 cups of coffee daily, 2 ounces of tree nuts weekly and 150 minutes of exercise weekly. I am a Stage IV rectal cancer survivor, and I include these suggestions in my daily life. They are simple, easy and affordable.

• Keep your medical appointments. As simple as it sounds, many patients stop getting their recommended scans or stop getting mammograms after a year or two.

If we’re following the recommendations that our medical team provided, then we’ve done all that we can do to help prevent our cancer from recurring.

So … What Next?

Do what you love. Take up that new hobby that you’ve always wanted to do. Laughter and smiles work — laugh often and smile at everyone you see. Our past diagnosis won’t be forgotten, but we can learn how to not allow cancer rob us of today’s joy.

How have you managed moving into survivorship? Please tell us in the comments below.

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