A Brain Cancer Survivor’s Story – The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer

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Cancer Survivors Park: Cancer… There’s Hope Sculpture (Photo credit: Wikipedia)

In May, 2002, clinical psychologist and professor, Dr. Michael Feuerstein, found, one day, that when he stepped off the curb to walk across the street, he could barely make his feet and legs respond.

When he finally made it across the street, he hugged a tree. A passing pedestrian remarked, “You’d better go see a doctor.”

It was an aggressive brain tumor. He was 52. His doctors gave him less than a year.

He made two decisions: to live longer than a year and to live healthier, happier and more energetically.

Surgery, radiation and chemotherapy followed in the next four weeks, finishing a year later.

Three years later, no cancer was being detected on MRIs.

The Beginning of a Different Journey

For all the success of diagnosis and treatment, tasks that Feuerstein says the U.S. healthcare system is particularly good at, he found that when his treatment ended, he was simply advised to go home and resume his life until his next checkup.

What he found, however, was that there were residual side effects, from the cancer and its treatment, that could be and needed to be addressed.

As one of 10 million cancer survivors living in the U.S. alone, he realized there were a number of people, like him, who needed guidelines on how to navigate the health care system to marshal resources for survivor issues.

A clinical psychologist, he decided to adapt tools used for other long-term health-care situations to cancer.

His book, The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer (copyright 2006), is broken into seven chapters, following a United Kingdom Expert Patient 7-step program.

With this program, he teaches readers to be experts in their own health and recovery.

The steps are

  1. Make the health-care system work for you
  2. Become a savvy survivor
  3. Communicate more effectively
  4. Form a strong support team
  5. Find the courage to change
  6. See life through more optimistic eyes
  7. Create your future

Practical Steps are Key

Feuerstein doesn’t just tell readers to do what’s good for them.

He’s a psychologist. He knows how hard it is to change.

But, he’s also a cancer survivor. He has dealt with the same issues he is helping readers address.

His strategies are simple.

Assess where you are.

He supplies clear, short quizzes that help readers determine things ranging from is this the right doctor for me to how long should I wait before I decide this medication isn’t working for me?

Some examples of his quizzes are:

  • Is my medication working? To decide if you need to ask your doctor for adjustments
  • Web site quality assessment – To determine which advice to trust
  • Test your spiritual IQ – To see if you are getting the support you need
  • Can I change? To determine what you need to do to move toward healthy habits
  • Roadblocks to exercise – To identify what’s stopping you from your goals

Identify areas that need to be changed.

With yes/no or a scale of 1 to 10 answers, the areas that need to be fixed stand out.

For example, if you log your symptoms, like pain, over a one-month period and see no progress, it is time to have a conversation with your doctor about adjusting the dose or changing the medications.

One of my sons had a track coach, for instance, who told him he needed a checkup when he had not improved his running time in a year

And, she was right. We identified a manageable health condition that needed to be addressed.

Keeping track of progress helps pinpoint for  you and your doctor what to focus on.

Practice conversations with doctors, friends and family.

When someone has cancer, friends and co-workers generally don’t know what to say to show their concern.

For example, on returning to work, colleagues may ask:

  • What’s it like to have cancer?
  • Did insurance pay for everything?
  • What was radiation and chemotherapy like?
  • What’s your health situation now?

To these probing questions, you can simply answer, “I’m fine. Thank you for your concern.”

Give yourself permission to feel what you feel

Feuerstein likens dealing with the stress of having had cancer and its subsequent treatments to post-traumatic stress disorder (PTSD).

And, like PTSD, there are strategies for dealing with the stress of fear over a recurrence or chemo brain.

For chemo brain:

  • Focus on one task at a time
  • Reduce distractions
  • Stick to a regular routine
  • Repeat information you want to remember

For fear of recurrence:

  • Keep a stress diary
  • Refocus your thoughts
  • Write a letter to yourself

Communicate what you need clearly

But also, take this time to appreciate the effort your friends, family and children have spent while you were in treatment, their very real concern for your health and the fact that they may need to continue to pick up tasks you used to do.

Tell your family if you do not want to participate in an event because of your fatigue, so they know it is not personal.

Take time to spend alone with each of your children and ask them how they are feeling about events in their lives to take some of the focus off you.

Understand that your spouse and children may have been shielding you from difficulties in their own lives during your illness.

Alternatives to Common Reactions

Friends and family, in an effort to be supportive, often say exactly the wrong things.

“Why are you down today? You should be thankful to be where you are.”

“Stop thinking about it. I could die just crossing the street tomorrow.”

“Just take it one day at a time.”

Ask them to just listen and acknowledge your feelings.

Or, if chemobrain makes it hard to remember things, friends and family try to reassure you.

“You’re just getting older, that’s why you can’t remember things.”

“I can’t do that either.”

“I forget things all the time, too. It just happened again yesterday.

Understand that they are trying to be helpful, but tell them you need them to acknowledge what you are going through and help you work through solutions.

New vocabulary: Meta-analysis

A meta-analysis is a study of studies.

Since one or two studies might be biased in one direction or another, scientists find meta-analysis studies more objective.

They summarize the results of scientific papers on a single topic, highlight the differences between them and try to determine the reasons for the differences.

A meta-analysis of a cancer treatment will, in a single paper, give an overview of all the studies that have been written about that treatment and their results.

Where Is Dr. Feuerstein Now?

Dr. Feuerstein is on the faculty at the Uniformed Services University of the Health Sciences.

He is a Professor of medical and clinical psychology and Preventive Medicine and Biometrics and Director of the Clinical Psychology Training Program at USUHS.

He is also an Adjunct Professor of Psychiatry at Georgetown University Medical Center.

He is Founder and editor-in-chief of The Journal of Cancer Survivorship: Research and Practice.

You can order a copy of Dr. Feuerstein’s book from amazon by clicking on the title: The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer.

 

Carol Covin, Granny-Guru

Author, “Who Gets to Name Grandma? The Wisdom of Mothers and Grandmothers”

http://newgrandmas.com

 

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