[Hopespringpcsg] FW: Your CCSN July 2020 Newsletter - Stay up to date and informed.

Tue Jul 21 14:01:10 EDT 2020

Hi all:

See below for the CCSN e-newsletter.

Take care & stay well.

Glen

From: Canadian Cancer Survivor Network 
Sent: July 21, 2020 12:28 PM
To: glen46nor at gmail.com
Subject: Your CCSN July 2020 Newsletter - Stay up to date and informed.

 <https://mailchi.mp/survivornet/your-ccsn-may-2020-newsletter-stay-up-to-date-and-informed-1000310?e=2e211ff547> View this email in your browser

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Canadian Cancer Survivor Network 
July 2020 Update

Double Jeopardy for Cancer Patients 

New Survey Reveals Cancer Care Disruption in Canada has Triggered Another Public Health Crisis

The results of a new survey released July 14th by the Canadian Cancer Survivor Network (CCSN) reveal that more than half (54%) of Canadian cancer patients, caregivers and those awaiting confirmation of a cancer diagnosis report having had appointments, tests and treatment postponed and cancelled. 

"Cancer can't wait. It can't be cancelled or postponed," said Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "We now know that the huge physical, psychological and financial impact of dealing with the COVID-19 pandemic, while also facing cancer, has put these Canadians in double jeopardy."

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Disruption of Cancer Care Causes Major Physical and Psychological Impacts 

Most affected by the disruption in cancer care during the pandemic are those awaiting confirmation of a diagnosis and recently diagnosed patients (74% and 73% respectively), who are at a critical time in their cancer journey. And while many of those who contacted their doctors (83%) said they were able to have a virtual consult during the height of the COVID-19 pandemic, almost three-quarters (71%) of all surveyed remained concerned about access to in-person care, including being cared for in a hospital/emergency room and receiving various tests and treatment.

In addition to the physical impact of COVID-19 on those facing cancer, the disruption of care has taken a considerable mental and emotional toll, with the majority of respondents surveyed (74%) saying that delays in appointments and treatment have had a major impact on their mental and emotional health. Even as pandemic restrictions begin to lift, ongoing concerns about receiving adequate cancer care continue to fuel anxieties, especially among those with metastatic disease (67%) and caregivers (91%).

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"As a breast cancer survivor, I'm vigilant about getting my annual mammograms to make sure that the cancer hasn't returned. Due to the pandemic, my recent mammogram was postponed, with no word yet on when it will be rescheduled. Early detection and treatment are really important. This delay is making me very anxious because I don't know what is happening inside my body."

- Marcia Barton 

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About the COVID-19 & Cancer Care Disruption in Canada Survey

To assess the extent to which COVID-19 has disrupted cancer care in Canada, a national web survey was conducted by Leger on behalf of CCSN among 1,243 people (960 cancer patients, 206 caregivers of cancer patients and 77 patients in cancer pre-diagnosis) from May 22 to June 10, 2020, using Leger's online panel, LEO, and with participation from the broader cancer community.

For comparison, a probability sample of the same size would yield a margin of error of +/-3.2%, 19 times out of 20 for patients, +/-6.8%, 19 times out of 20 for caregivers, and +/-11.2%, 19 times out of 20 for patients in cancer pre-diagnosis.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=72a67453bd&e=2e211ff547> Full News Release 

COVID-19 and Cancer Care: Next Steps 

Cancer can’t wait. The delay and cancellation of cancer care due to COVID-19 has triggered another public health crisis in Canada. Clearly, patients, their caregivers and those awaiting confirmation of a cancer diagnosis are facing postponed and cancelled appointments, tests and treatment, causing heightened fears and anxiety, even as pandemic restrictions are lifted. As one patient succinctly put it, “cancer patients are being thrown under the bus!” 

  <https://mcusercontent.com/318d4e052fdd9593317146113/images/94176bd0-3304-4933-a0bc-9e154a6cbbd1.jpeg> 
Jackie Manthorne, President & CEO of CCSN 

To save lives, cancer care and diagnosis must continue during any public health crisis to save lives. Safe and timely access to cancer care, including diagnostics, testing and treatment, must remain a top priority across Canada during any public health crisis.  

Federal, provincial and territorial governments must ensure that the sustained provision of essential cancer care is included in any crisis or pandemic planning. Cancer can’t be cancelled or postponed. Crisis and pandemic planning must explicitly include essential cancer care. The Canadian Cancer Survivor Network calls upon governments across Canada to heed the experience of those facing cancer and their caregivers during the COVID-19 pandemic by providing for the explicit inclusion of essential cancer care in all crisis and pandemic planning."  

Missed Some of CCSN's Recent Webinars? 

  <https://mcusercontent.com/318d4e052fdd9593317146113/images/efc3d4b6-cb29-4c4a-b564-0651d8719cf7.png> 

No problem – here’s how to access them

Watch Now! CCSN July 15 Webinar with Marjut Huotari of Leger

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=cc140bf93d&e=2e211ff547> 

Join CCSN and Marjut Huotari, VP-Healthcare Insights at Leger, as we present the results of the COVID-19 and Cancer Care Disruption in Canada Survey and hear from members of the cancer community about how the pandemic has directly impacted them.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c6859bc167&e=2e211ff547> Slides Available Here.

Subscribe to our  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=1ff72bdfae&e=2e211ff547> YouTube channel to make sure you never miss a CCSN webinar!
You can also access the slides on  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=29da513f13&e=2e211ff547> SlideShare. 

Agree that Cancer Can't Wait? 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=9c2ebc5e17&e=2e211ff547> Tell your Federal Member of Parliament

(Responsible for Pandemic Planning)

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=f3b3958bc9&e=2e211ff547> Tell your Provincial Representative
(Responsible for Healthcare)

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8d0501ac73&e=2e211ff547> Donate Now! 

Patients Say "Cancer Can't Wait" 

We thank all the cancer patients, caregivers and survivors who took the time to complete our COVID-19 and Cancer Care Disruption in Canada survey as well as those who told CCSN about their thoughts and feelings about cancer care disruption during the COVID-19 pandemic. Here is some of what they told us.  

Cancer Can't Wait!

"Fear that if I had needed an operation or treatment I would not be admitted into hospital and that it would be delayed until it was too late. That if I was admitted my family would be unable to see me and that I would struggle to deal with it on my own.  Or worse if my cancer had spread too far and I was going to die I would have to die alone in hospital and not have my family around me."
Alison Jane Hammersley, a Stage 4 osteosarcoma patient from Nova Scotia. 

Cancer Can't Wait!

My greatest concern and fear during this time is not being able to get my loved one the care they need or not getting them the proper treatment they need in time. Another fear I have is if they have to be hospitalized and I cannot be there with them. I'm much more cautious when I'm out getting groceries. I immediately change and shower as soon as I enter the house to minimize the risk or bringing the virus into the house. A caregiver of a Stage 3 breast and thyroid cancer patient from Ontario. 

Cancer Can't Wait!

It was a bit unnerving to have my appointment with the oncologist delayed, and then when it was rebooked, it was moved to another date.  I finally got in to see him, but the appointment was not normal as we had to social distance and wear face masks.  Communication was a bit strained, distant and impersonal. Greatest fear has been the closure of oncologist's office or closure of hospitals so that COVID patients can take precedence.  It's as if all health care other than COVID-19 has been put on the back burner.  All other healthcare patients are being sacrificed for COVID patients.  
A Stage 4 prostate cancer survivor from Alberta. 

Cancer Can't Wait!

Having my endoscopy procedure postponed has increased my worries. Now I have to wait, and I have no idea when it will be rescheduled. I want to know that my cancer treatment was successful and that the cancer has not returned. This uncertainty is affecting my quality of sleep. I need to know if my cancer has come back. And if it has come back, how much longer will I need to wait?  The longer it takes, the cancer, if it has come back, will grow.  
A Stage 2 stomach cancer patient from Quebec. 

Cancer Can't Wait!

My fear is that since I am experiencing pain in areas of my body other than where the tumor that was irradiated is located, there are other tumours that were not detected when I had a bone scan 11 months ago.  The level of fatigue and difficulty sleeping, even though I use a CPAP machine, is increasing my level of anxiety and frustration and that is creating more stress for my family members. A stage 4 prostate and skin cancer patient from British Columbia.  

Cancer Can't Wait!

Where I am stage 4, it is concerning that I may have a scan postponed because of the pandemic. It makes me worry that something might be growing that we aren't going to catch in time due to lack of scanning. So it's causing a lot of anxiety. 
Brooke Zinke, a Stage 4 breast cancer patient from Newfoundland and Labrador. 

Cancer Can't Wait!

First, I would like to say NO ONE should have any cancer appointments cancelled or rescheduled. This is cancer! If you have it, it could, or perhaps it has already, spread. Not having my treatments is a nightmare. All you keep doing in your head is asking yourself, has it spread? Am I going to die sooner or will I make it to my next appointment?  I am afraid I might get covid-19 and die. I am concerned for my future. I want to see my family again so I can hug and kiss them.  
A Stage 2 breast cancer, leukemia and lung cancer patient from Ontario. 

Cancer Can't Wait!

I am supposed to have testing done at every appointment. I have been put off three times since COVID-19 started. I'm worried that I may still have growing cells. A Stage 1 Cervical cancer patient from Manitoba. 

Cancer Can't Wait!

I feared going to the hospital for my CT scan. I feared getting COVID.  I feared NOT getting my CT scan, as then I would have to wait LONGER for any results. Not knowing is worse than knowing.  Knowing gets action put into place. Fear breeds anxiety, and that is NOT GOOD for cancer patients.  I feared being bumped out of the system.  I FEEL DISPLACED. I now feel lost.  I feel that NO ONE cares about me/my health.  I have had SO many appointments cancelled, delayed, changed, pushed out, I can no longer count them.  Why are potential COVID patients held in higher regard than CANCER PATIENTS?  We face MORE stress than anyone else....period.  We were THROWN UNDER THE BUS. PERIOD.  A Stage 2 colon and rectal cancer patient from Ontario. 

Cancer Can't Wait!

J’ai eu très peur que le cancer de stade 4 devienne incontrôlable et que ce soit la fin... A Stage 4 breast cancer patient from Quebec. 

Cancer Can't Wait!

My role as caregiver has been harder, with more worries and fears because there have not been any clearly defined plans for the disabled and sick in Canada. My greatest concern is that there would not be sufficient financial support and healthcare workers to care for them. A caregiver for a skin cancer survivor from British Columbia. 

Cancer Can't Wait!

My mother is close to 80, so I'm concerned she'll get the coronavirus and also could pass it to my dad, who is 80. She had to go to a busy hospital for updated scans and she did say it was run very well but it's still worrying. I worry more about her and that she shouldn't be going out. I've tried to get her things so she can avoid going out in the public. I haven't been able to really help physically since I can't be near her. I try to be more emotional help and having things delivered for her instead. A caregiver of a lung cancer patient from Ontario. 

Cancer Can't Wait!

My greatest fear is leaving the house knowing that my immune system is not as good.  I don't want to get near anyone, not even in emergency rooms. A Stage 2 breast cancer survivor from British Columbia. 

Cancer Can't Wait!

I really miss the personal contacts with my oncologist.  Things come up in a conversation which are helpful and calming.  I have not seen him in four to five months and just communicate by email.  I feel a “bit in the dark.” A lymphoma survivor from British Columbia. 

Cancer Can't Wait!

I have to know more related medical terms than before to take care of my family member when no info directly from professional experts. When something happened we may not get the responds as soon as possible like before. Delay is becoming a big concern. A caregiver for a Stage 2 breast cancer patient from Ontario.

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