[Hopespringpcsg] FW: Canadian Cancer Survivor Network E-letter, January 2014

[Glen Tolhurst]

Hi all:

FYI - CCSN e-letter below.

May be some topics of interest.

Take care,

Glen

 

From: Jackie Manthorne [mailto:jmanthorne=survivornet.ca at createsend4.com] On Behalf Of Jackie Manthorne
Sent: January 21, 2014 11:08 AM
To: Glen Tolhurst
Subject: Canadian Cancer Survivor Network E-letter, January 2014

 




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CCSN January 2014 Eletter


 

The Canadian Cancer Survivor Network (CCSN) is a national network of patients, families, survivors, friends, community partners, funders and sponsors who have come together to take action to promote the very best standards of care, whether it be early diagnosis, timely treatment and follow-up care, support for cancer patients, or issues related to survivorship or quality of end of life care.

 


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You are invited! Special Canadian Cancer Survivor Network Coffee party for recognition and awareness of World Cancer Day February 4, 2014


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Drop by CCSN’s office from 3 to 5 p.m. Tuesday February 4, at 1750 Courtwood Crescent, Suite 210.

 

Escape the winter doldrums! Drop in for some refreshments, hot coffee and warm chat, networking and some brief information on what CCSN is up to!

 

About the Canadian Cancer Survivor Network

 

CCSN works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care for survivors in Canada.

 

About World Cancer Day 2014

 

A global event taking place every year on 4 February, World Cancer Day 2014 is an initiative of the Union for International Cancer Control (UICC), a leading international non-governmental organisation that unites the cancer community to reduce the global cancer burden, to promote greater equity, and to integrate cancer control into the world health and development agenda. World Cancer Day unites the world’s population in the fight against cancer. It aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action.

 

World Cancer Day 2014 will focus on Target 5 of the World Cancer Declaration to Reduce stigma and dispel myths about cancer, under the tagline “Debunk the myths.” There are still so many myths about the disease out there and this Day is the perfect opportunity for people to dispel them. Greater awareness and education about cancer can lead to positive change at an individual, community and policy level and across the continuum of cancer care.

 

For World Cancer Day 2014 we will focus on four key myths and go about “debunking” them through the various materials we are producing.

 

For more about all the cancer myths and debunking them: http://www.worldcancerday.org/node/5 <http://ccsn.createsend4.com/t/r-l-peidly-tiliitlrdd-h/> 


For more about World Cancer Day http://www.worldcancerday.org/ <http://ccsn.createsend4.com/t/r-l-peidly-tiliitlrdd-k/> 


CCSN www.survivornet.ca <http://ccsn.createsend4.com/t/r-l-peidly-tiliitlrdd-u/> 

 


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Finding flexible work difficult for cancer patients and caregivers


 

New data released on financial, decision-making and emotional burden of cancer.

 

A 2013 Léger national survey of cancer patients and their caregivers, commissioned by Sanofi Canada and launched by the Canadian Cancer Survivor Network this month, sheds new light on the striking financial, decision-making and emotional burden the disease puts on cancer patients and their caregivers. 

 

The survey found that 18% of patients experience difficulty in finding flexible work options while battling cancer, while 49% of all caregivers also struggle to integrate caring for loved ones into their work schedules.

 

Surveyed caregivers said that, in addition to being a source of financial stress, cancer caregiving took a toll on their lifestyle and emotional outlook. Many noted that it forced them to choose between work and care; including taking time off from work or preventing them from moving for work.

 

The burden on people being treated for cancer is already high because of health concerns, but for 15% of patients and 29% of caregivers, it is further complicated by the difficulty in accessing the most current or effective treatment options, in addition to the concerns over reimbursement of drug costs, long and intense treatments, and the loss of salary.

 

Carrying the load: the cancer burden

 

Survey results depict the caregiver to cancer patients as predominately female. Sixty-three percent of women compared to 37% of men carry the load of disease management and treatment. The majority of caregivers to oncology patients are under 54 years old (69%). Patients, meanwhile, are predominantly 55 and over (75%). 

 

While emphasizing how important their role is, and how grateful for life and health they had become after caring for their loved one with cancer, caregivers described the negative impact cancer had on their mental state, describing their function as “emotionally draining,” “depressing,” and “stressful.”

 

Caregivers reported receiving no significant outside help in their caregiving, other than that provided by family and friends to help in the management of their loved one’s cancer treatment.

 

“Caring for cancer patients is complex,” says Jackie Manthorne, President & CEO of the Canadian Cancer Survivor Network. “People living with cancer require a wealth of financial and support services to access needed medicines and services that are in close proximity to their homes as well as psychological, nutrition and fitness services to support them in the healing process.”   

 

"It begs the question, who is taking care of the caregivers?" Manthorne continued. Noting that caregivers reported that they received no significant outside help in managing their loved one's cancer treament other than family and friends, Manthorne added, "As we move toward patient-centered care, we should ensure that caregivers are included and not left to fend for themselves."

 

To ease the burden of managing cancer and its treatment, three quarters of caregivers are in favour of out-of-hospital care for cancer patients, and 87% say their dependent would be likely to take advantage of the option of receiving treatment at home.  Patients too are generally in favour of out-of-hospital care, and 80% say they would be likely to use a service that allows them to have treatment at home.

 

Click here <http://ccsn.createsend4.com/t/r-l-peidly-tiliitlrdd-o/>  to read the entire media release.

 


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Are you a prostate cancer patient or caregiver? Provide feedback on a new website on metastatic protate cancer!


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CCSN is collaborating with an agency on a new online/digital initiative for men with advanced/metastatic prostate and their caregivers. We have a continued commitment to ensuring the voices of our patient and caregiver members are considered and as such, will be hosting individual interviews this month  (January) to gain real-time feedback on the content and creative of this online/digital initiative. Qualified candidates will receive financial compensation for their feedback.

 

If you have advanced/metastatic prostate cancer or are a caregiver to a man with advanced/metastatic prostate cancer, are a user of web-based technology (the internet/web-browsing) and are interested in sharing your feedback, please contact Aref Munshi @ 416-236-4770 ext. 249 or through email @ munshi at logitgroup.com.

 

We greatly value the opportunity to hear your thoughts. With your immediate support and feedback, we hope to have these innovative tools and resources available to both patients and caregivers early this year on a dedicated advanced prostate cancer website.

 

Thank you in advance and we look forward to hearing from you no later than January 23th, 2014.

 


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Join our Bone Health Ambassadors and help raise awareness of bone health in cancer!


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CCSN has been working recently on an important, yet under recognized health issue for survivors of breast and prostate cancer: bone health.

 

We’ve heard from survivors in a recent survey of our membership that their primary cause of anxiety is the fear of cancer reoccurring or spreading. More than 40% of respondents identified this fear, with 11% highlighting a particular concern about bone metastases (cancer spreading to the bone).

 

We hope you found our special webinar about bone health in cancer useful and informative. It was held November 26, 2013, with special guest speaker Dr. Sandy Sehdev, a medical oncologist who treats many patients whose cancer has spread to the bone. Dr. Sehdev explained how and why cancer spreads to the bone, signs and symptoms, and how to protect the bones to keep them healthy and strong.

 

Following Dr. Sehdev’s presentation, I shared information about the campaign we have undertaken to raise awareness about bone health among patients, survivors and their caregivers, as well as government (who decide what treatments will be available to people who have had cancer spread to the bone). If you missed the webinar, click here <http://ccsn.createsend4.com/t/r-l-peidly-tiliitlrdd-b/>  to access the archived version.

 

We hope that you will join our bone health ambassadors to help raise awareness about the importance of bone health! We are looking at organizing several new activities in 2014, including additional webinars on the topic, meetings with politicians and other decision makers in Ontario, Alberta and British Columbia, and perhaps expanding the campaign to other provinces and territories.

 

Contact CCSN president & CEO Jackie Manthorne at jmanthorne at survivornet.ca to add your name to the list of bone health ambassadors!

 


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Join CCSN’s growing Breast Cancer Advisory Council


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Over a dozen breast cancer patients and survivors joined our Breast Cancer Advisory Council to date. The council meets by teleconference from time-to-time, and confers regularly by email to improve diagnosis, treatment and survivorship. Breast cancer patients, survivors and family members are invited to join.

 

Terms of reference for this Council will be sent to those who contact CCSN President and CEO Jackie Manthorne at jmanthorne at survivornet.ca .

 


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CCSN’s Prostate Cancer Advisory Council prepares for an exciting 1014!


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The good news is that more than a dozen prostate cancer patients, survivors and family members have already become members of our Prostate Cancer Advisory Council, and we invite you to join them as we gear up for 2014 and some exciting new projects!

 

The Advisory Council meets by teleconference and confers regularly by email to improve diagnosis, treatment and survivorship.


Terms of reference for this Committee will be sent to those who contact CCSN President & CEO Jackie Manthorne at jmanthorne at survivornet.ca .

 


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Canadian Cancer Survivor Network
1750 Courtwood Crescent, Suite 210 (note new suite number)
Ottawa, ON K2C 2B5
Telephone: 613-898-1871
Email: info at survivornet.ca
Website: www.survivornet.ca

 

Twitter pages
@survivornet.ca
@bestbreastnews,  which concentrates on information on breast health and breast cancer
@canadianmeso, which is about asbestos and mestothelioma
@CanadaCINV, which is about chemo-induced nausea and vomiting
@prostatepost, which is provides information about prostate cancer

 

Facebook
http://www.facebook.com/CanadianSurvivorNet
Our second FB page is about asbestos and mesothelioma:  https://www.facebook.com/CanadianMeso

 

Pinterest
http://pinterest.com/survivornetwork/

 

Blog
Jackie Manthorne's Cancer Blog: http://jackiemanthornescancerblog.blogspot.com/
CCSN's asbestos and mesothelioma blog: http://canadianmeso.blogspot.ca/

 

Weekly newsletter
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This eletter is published once a month. Occasional alerts may also be sent.

 

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