J U N E 2 01 4 Issue 6 A NEWSLETTER FOR PAT I E N T S , F A M I L I E S , S T A F F AND COMMUNITY MEMBERS Princess Margaret Cancer Centre Patient & Family Education News IN THIS ISSUE Brain Fog: How Can It Help You? Brain Fog: What is it and what can you do about it? By Lauren Shorser, Web Writer Summer Programs for Kids, Teens & Young Adults at Gilda’s Club Greater Toronto What is Brain Fog? Survivorship: Life with Cancer Gerald Kirsh Humanitarian Awards On Tuesday April 22, 2014, the Patient Education program invited Dr. Lori Bernstein, PhD, CPsych, to host a lunch and learn about cancer-related brain fog. Lori began by explaining what the term "brain fog" means. "Brain fog" refers to changes in a person's thinking and cognitive abilities during or after treatment for cancer. Brain fog is a common side effect of chemotherapy treatment, which is why brain fog is also sometimes called “chemo brain”. Brain fog can happen in people with cancer who do not receive chemotherapy. Because of this, Lori uses the term “brain fog” instead of “chemo brain”. Cancer-related brain fog is most severe during treatment. It usually starts to get better after treatment has finished. Brain fog continues to get better for at least 2 years after treatment. Although symptoms improve after treatment, they may not get completely better. Signs & Symptoms The most common symptoms of brain fog are having a hard time with: • Focusing • Concentrating • Paying attention • Short-term memory • Finding the right word • Doing more than one thing at a time Some people may also have a hard time with: • Remembering where things are • Taking longer than normal to "process" or understand what is going on A small number of people with brain fog may also have a hard time with: • Logic, reasoning and problem-solving • Understanding new things • Judging where objects are in relation to each other (e.g. difficulty judging how close other cars are while driving) Causes There are many things besides chemotherapy that can cause a change in thinking and cognitive abilities: • Physical causes, such as pain, anemia or aging • Psychological causes, such as anxiety or stress • Physical or mental fatigue • Lack of sleep • Medication • Surgery or anesthesia • Medical history including a head injury, learning disability or other unrelated illness Finding the Cause Talk to your doctor if you experience a change in your thinking or cognitive abilities. Before your appointment, make a note of: • When you first began experiencing symptoms • Whether the symptoms happen all the time, or just sometimes • How symptoms affect your daily life • What makes symptoms better • What makes symptoms worse • What changes family members and friends have noticed This information can help your doctor figure out what might be causing the change in thinking and cognitive abilities. Your doctor may send you for tests or refer you to other services. Tips & Strategies There are things you can do to help lessen the impact brain fog has on your daily activities. Some strategies that may help you include: 1. Use memory aids such as appliances with an automatic shut-off, alarms and a diary. 2. Pay attention & concentrate. Focus on what is going on around you and make sure that you are "in the now". Slow down, cut out distractions and do one thing at a time. 3. Repeat, repeat, repeat. Ask others to repeat information. Review your calendar or schedule often. 4. Make it meaningful. Take the time to think about how new information relates to or fits in with things you already know. 5. Organize information. Organize information into meaningful categories. Develop triggers and memory cues. 6. Organize your surroundings and have a routine. Have a place where you can always store items like keys. Set up a regular daily routine with a time and place for each task. There are also some things you can do as a part of your lifestyle that can help improve symptoms of brain fog: • Get enough sleep • Find positive ways to cope with stress • Eat healthy • Stay active, both physically and mentally • Learn new things • Add some variety to your routine, like taking a different route home Information on Brain Fog Find out more about cancer-related brain fog by: • Attending the What You Can Do About Brain Fog class. See the Patient Education Calendar of Events or call 416-581-8620 for date and time of the next session. • Visit the Patient & Family Library in the Princess Margaret, Main Floor Atrium and ask for the CancerRelated Brain Fog pamphlet. • Ask your doctor or refer yourself to the Princess Margaret Neurocognitive Clinic by filling out a referral form, available at http://bit.ly/neurocog-referral, and faxing it to 416 946-4549. Thank you to Lori for an interesting and informative talk. Thank you to Starbucks for generously providing tea and coffee. Watch this talk or past Lunch & Learn presentations online! Visit http://bit.ly/PM_lunch-learn Survivorship: Life after Cancer By Nour Alkazaz, Research Analyst at ELLICSR Originally published on the ELLICSR blog: http://ellicsrblog.theprincessmargaret.ca When I hear someone say that they're a survivor, I am immediately taken back to my early high school years when I would watch Survivor the reality show. The show was constructed to have viewers eagerly anticipate the physically and mentally exhausting challenges of the contestants. In that context, the survivor was the one who won the game; the one who survived all the elements; the one that walked away a million dollars richer. When I first learned about "cancer survivorship" I made the naïve assumption that to be a cancer survivor meant to come out unscathed from the storm that is treatment. priority and doing the things you love; it is about living. But who am I to define survivorship? Here’s how some people living the experience explain it: Quickly I learned that this doesn’t even skim the surface. Cancer survivorship is about the journey as a whole, from the day you're diagnosed (even all those tests you do beforehand, too) until the end of life. “For me the life part of cancer is tough, the fact that life goes on even with your cancer diagnosis”. Crazy, right? I told you I was so naïve. “I learned to go on with life and live... I see so many people down and pushing life away and I want them to open up and smile a little more and be happy a little more.” But survivorship is more than just the journey. Over the past few years I have met many cancer survivors and some have become my friends. “You need to take time to just take care of yourself and put yourself first. You need to be healthy and enjoy life and prioritize and know what is more important.” If there is one thing that I learned from my new friends, it is that survivorship is about living life to its fullest potential, despite the challenges you may face because of a cancer diagnosis. Survivorship is about making yourself your #1 How do you describe survivorship? Share your description with us on: • Facebook: www.facebook.com/ellicsr • Twitter: www.twitter.com/ellicsr Summer Programs for Kids, Teens & Young Adults at Gilda’s Club Greater Toronto By Vicki Hartman, interim Director of Programs, Gilda’s Club Greater Toronto As the interim Director of Programs for Adults, Children & Youth at Gilda’s Club Greater Toronto, I’m excited to share some of our programs for kids, teens, and young adults living with cancer. Here’s what’s in store for the summer of 2014! Special Events: • See what our teen members have been up to this year at Filming Ourselves on Saturday, June 21st from 7:0010:00pm. The teens have been working hard creating a video of their incredible personal cancer journeys with the help of a professional film crew. Over the course of 6 months, they wrote, recorded, edited and shot their own short film which will be showcased at the event. This project was funded by the Ontario Trillium Foundation. Please call 416-214-9898 for theatre location information. • In July, the clubhouse welcomes children impacted by cancer to the Camp in the City™ program! Join our Noogieland team for a week of trips, special guests, arts and crafts, team building and more! Day camp programs are held on July 2-4th, 7-11th, 14-18th and 2125th. Our Camp in the City™ program is made entirely possible through the Mackenzie Investments Charitable Foundation. Please call Vicki at 416-214-9898 x 204 for more details! Ongoing programs: • Know someone in their 20s and 30s coping with cancer? Tell them about our 20s and 30s Networking Group that meets every other Tuesday night from 6:308:00pm. • Our Kids Talk Out™ therapeutic support program is for children between 4 and 12 years old who are living with an active cancer diagnosis in the family. This group meets on Tuesdays from 6:30-8:00pm. • Kids Grieve Too™ is a support program for children between 4 and 12 years old who have lost a family member or friend to cancer. This group meets on Thursdays from 6:30-8:00pm. Gilda’s Club provides free social and emotional support to over 1,500 men, women, teens and children living with cancer. Membership is free! We encourage members to participate in as many programs as they’d like. We offer a range of programs, like gentle fitness, arts programs, education, social connections and wellness programs. Visit the Gilda’s Club Greater Toronto clubhouse at 24 Cecil Street, in downtown Toronto. For more information about Gilda’s Club Greater Toronto please visit www.gildasclubtoronto.org or call us at 416-214-9898. The Gerald Kirsh Humanitarian Awards Recognizing Compassionate Care at The Princess Margaret - Nominate Someone Today! Every staff member and volunteer at The Princess Margaret ensures our patients and their families are comfortable and well informed as they face the many challenges of a cancer diagnosis. Many years ago Gerald Kirsh received compassionate and supportive care as he was undergoing treatment. Gerald’s wife Paula and their children, Jeff, Joel and Jennifer wanted to do something special that would honour his memory and recognize all of the caring staff at The Princess Margaret who supported him on his cancer journey. The Gerald Kirsh Humanitarian Awards have been an annual celebration of hope at The Princess Margaret for the past 14 years. Every year two recipients are chosen among a great group of well-deserving staff and volunteers. It is truly an honour just to be nominated and that’s why we ask all of our nominees to invite their loved ones to share in the celebration. Would you like to recognize someone who’s gone that extra mile to ensure you or someone you cared about felt at ease? Why not say thank you in the form of a nomination? We would love to hear your personal story. We invite staff, patients and their families to nominate any Princess Margaret Cancer Centre employee or volunteer that they have seen provide exemplary and compassionate care. Please visit www.thepmcf.ca/kirshawards to submit an online nomination, visit the Patient and Family Library or email us at [email protected] for further information. The deadline for nominations is September 10th and you can nominate up to two individuals. This year our celebration will take place on Monday November 24 at 4:00 on the 7th floor research atrium and we would love to see you there! Patient & Survivorship Education Editor: Alaina Cyr, Patient Education Coordinator | Editorial Board: Nazek Abdelmutti, Daniela Fierini, Robin Forbes, Myann Marks, Lauren Shorser Graphic Artist: Kristin Foster | Please forward comments, questions or submissions to [email protected] The Patient Education and Survivorship Programs are supported by the Princess Margaret Cancer Foundation. The information contained in this newsletter is to be used for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis or treatment. Please consult your health care provider for advice about a specific medical condition. A single copy of these materials may be reprinted for non-commercial personal use only. © University Health Network - Princess Margaret Hospital - Patient and Family Library - 2014
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