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Tag Archives: cancer survivor

Welcome to My Reality: by Childhood Cancer Survivor Danielle

DanielleCloakeyby Danielle Cloakey, Childhood Cancer Survivor and Advocate

 

Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.

 

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Cancer Wasn’t Part of the Plan… Until Now

 

katehoughtonby Kate Yglesias Houghton, President & CEO, Critical Mass: The Young Adult Cancer Alliance

 

Growing up my family spent time teaching us about the obligation to serve others.  In their eyes, people of action and empathy were to be admired. In college, it was learning about our political process that made me realize that “service to others” was at the core of our government. Laws to effect change.  Policies provide protection.  A Thanksgiving basket was an act of service but it was not an act of change.  By the time I was wrapping up my final courses I knew how I would serve others as a career:  work in Washington, DC.

 

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Calling All AYAs

clarissashilstraby Clarissa Schilstra, CKN Section Editor

 

According to the National Cancer Institute, about 69,212 adolescents and young adults (AYAs) were diagnosed with cancer in 2011 – this is 6 times the number of cases diagnosed in kids who are 0-14 years old (National Cancer Institute, 2014).  This makes it kind of obvious that it’s important to have cancer centers dedicated to providing quality care that meets the range of specific needs of AYA patients.

 

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Surviving and Thriving Post Head and Neck Cancer (HNC)

 

L-R: Dr. Sara McEwen, Colleen Dunphy, Dr. Jolie Ringash

by Colleen Dunphy, BScPT, MSc; Sara McEwen,BSc(PT), MSc, PhD; and Jolie Ringash, MD, FRCPC, MSc

 

Cancer rehabilitation is slowly gaining recognition as a prominent field in cancer survivorship. The needs of cancer patients do not stop when the cancer is gone.

 

Certain cancers can result in high healthcare usage amongst survivors. Though head and neck cancers (HNCs) make up only about 3% of all cancer types, damage from the disease itself and its treatment can leave survivors with significant impairments ranging from trouble speaking and swallowing, to changes in appearance and memory or thinking.  A team based at Princess Margaret Cancer Centre (PM) and the Sunnybrook Research Institute (SRI) have been working to bring these issues to the forefront, and close the gap between finishing treatment for head and neck cancer and getting back to doing important activities.

 

In 2014, Co-principal investigators Dr. Jolie Ringash (PM) and Dr. Sara McEwen (SRI) received a two year Canadian Cancer Society Research Institute Innovation grant to develop an efficient way to integrate evaluation of rehabilitation needs into routine cancer care for HNC survivors.   In the first phase of this study, a group of patients, family members and providers from both facilities helped to create a rehabilitation consultation, in which survivors met with a rehabilitation professional to discuss their rehabilitation needs, create personal goals, and jointly develop an action plan to achieve these goals. The approach was trialled with a small group of patients first, before being revised and piloted with 35 patients from the Wharton Head and Neck Cancer Centre at the PM. This study is in the final phase of data collection, but has already produced a number of materials that may be helpful to patients, family members, and clinicians working with HNC survivors.

 

So far, one of the most significant achievements of the study has been the creation of the Head and Neck Cancer Rehabilitation Resources website, www.hncrehab.ca. This site was created with funding from the CCSRI Innovation grant as a tool for direct use during the rehabilitation consult, but is an openly available source of HNC rehabilitation resources for all survivors and rehabilitation providers whether or not they were involved in the pilot project. The site features reading material, research articles, videos, and links to other sites that deal with HNC rehabilitation. The main features of the site are a Survivor Resources information section, a section for Health Professionals, and a “Find a Program or Therapist” option. Though these resources were compiled primarily for HNC patients living in Southern/South Western Ontario, much of the information is relevant to those residing elsewhere, and even those with other types of cancer. For example, Survivor Resources includes information on cancer-related fatigue, general exercise, and changes in mood that can occur with any type of cancer. Other sections on speech and voice, body image, and swallowing are more specific to the needs of HNC survivors. We invite you to visit the site and feel free to download materials or use the “Contact The Authors” link if you have other resources to suggest including.

 

More information on the Rehabilitation Consultation study can be found on the site, or in the following publications:

McEwen SE, Davis AM, Jones JM, Martino R, Poon I, Rodriguez AM, Ringash J. Development and preliminary evaluation of rehabilitation consult for 1 survivors of head and neck cancer: An intervention mapping protocol. Implementation Science (2015) 10:6 DOI: 10.1186/s13012-014-0191-z

McEwen S, Rodriguez AM, Martino R, Poon I, Dunphy C, Rios JN, Ringash J. I didn’t actually know there was such a thing as rehab: survivor, family, and clinician perceptions of rehabilitation following treatment for head and neck cancer. Support Care Cancer (2016) 24:1449–1453. DOI 10.1007/s00520-015-3021-1

 


 

Colleen Dunphy is a physiotherapist with almost 10 years’ experience treating patients with cancer. She obtained her Physiotherapy degree from Dalhousie University in 2006 and just completed an MSc with a concentration in Quality Improvement and Patient Safety at the University of Toronto. She sits on the executive of the Oncology Division of the Canadian Physiotherapy Association and holds a status-only appointment with the University of Toronto where she lectures on palliative care in the Department of Physical Therapy.

 

Dr. Sara McEwen is a scientist at the Sunnybrook Research Institute, St. John’s Rehab Research Program. She also holds appointments as Assistant Professor in the Department of Physical Therapy and Rehabilitation Sciences Institute, University of Toronto. She obtained her B.Sc. in Physical Therapy and M.Sc. in Rehabilitation Science from McGill University, and PhD in Rehabilitation Science from the University of Toronto. Broadly, she is interested in investigating long-term meaningful outcomes in people living with chronic conditions.

 

Dr. Jolie Ringash is a Professor of Radiation Oncology at the University of Toronto.  She is cross appointed to the Department of Otolaryngology Head Neck Surgery and to the Institute of Health Policy, Management and Evaluation at the University of Toronto.  She is the Site Leader for the Gastrointestinal Radiation Oncology Site Group, Co-Chair and medical lead of the Head and Neck Cancer Survivorship Programme supported by the Discovery Fund, and a staff radiation oncologist, at the Princess Margaret Cancer Centre.

 


 

 

What September Means to me: by Stephanie Zimmerman

goldribbonby Stephanie Zimmerman, MSN, Childhood Cancer Advocate

 

“Cure Is Not Enough”

 

September is Childhood Cancer Awareness Month, and the message that is circling the globe is #GoGold in every possible way from lapel pins and t-shirts to state houses and monuments being lit up gold. It’s a month of gold ribbons with hashtags pointing to our children, our adolescents, and our young adults.

 

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What September Means to me: by Rachel Lozano

goldribbonby Rachel Lozano, Living with Cancer

 

September is usually a time when kids are getting back into the swing of school, temperatures are cooling off and people are gearing up for fall and winter.  Summer starts to fade into the distance as flip flops get worn less and fall jackets come out of the closet.  September is also a whole month dedicated to bringing awareness to childhood cancer.  For me, it is a time to honor what has already happened in my life and also the experiences of other patients and families affected by childhood or teen cancers.  It is a time to think about the hopes for the future of people who are already surviving and those who are yet to be diagnosed.

 

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