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Category: Public Interest Group on Cancer Research

Guest Blog: “Leaving our lives in the hands of time”

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Guest Blog Post – 3

By Jenna Neville

January 2024, Newfoundland and Labrador

Imagine this: It’s the beginning of the 2000’s, you’re in your early 30’s, married with a young daughter. The time has come to go to your regularly scheduled Pap test appointment; while there, the doctor also performs a routine breast exam.

This appointment changes everything, because it is during this appointment that a lump is discovered.

Then, the next thing you know, you’re told you have stage 1 breast cancer, you will need radiation, chemotherapy, and surgery. The cherry on top: some of these treatments are not available in your hometown. Instead, you have to leave all of your family support behind and travel 800 kilometers to receive those painful treatments alone.

Thankfully, because of that regularly scheduled appointment, your cancer was found early, your treatment regime worked, and you ended up cancer free.

But what if that breast exam wasn’t part of the protocol?

Though unfortunate in many ways, this was still a story of luck. It was the story of my mother, and it is not the reality for many.

As a young woman myself now, I also attend normally scheduled Pap test appointments. For me, in each appointment, a breast exam has been offered as an option, not given as a routine part of the appointment. Why? I suppose at some point through time the protocols changed, and now I fear for the young women who say no because they think they are too young to possibly have cancer.

* * *

20 years later.

While other parts of the world advanced and innovated, we still rely on the same inaccessible treatment and equipment that we did 20 years ago.

People are still forced to leave their support to travel 100’s of kilometers away for specific cancer treatments. People are told that it could take months to years to see certain specialists. People are dismissed by their family doctors (if they’re lucky enough to have one) but scheduled for testing they might receive several months later.

* * *

I can’t speak on what is experienced in of the rest of the world, but I can speak to the recent experience of my Spanish partner. A researcher in their late 20’s who moved from Spain to Newfoundland. For him, coming to Canada as a European was always talked about as being the ultimate experience; but he came to witness not only the limited housing, jobs, and fresh food, but unfortunately, the limited health care as well.

No one wants to find a new mysterious lump in their body. But if you ask me, what’s even more unfortunate, is he found it while living here. I say this because, in Spain, it is possible to have a doctor’s appointment, testing, and results all within 1 month. Here, you’re lucky if you can have all of that within 1 year.

6 months. That was the wait time given in order to just receive an ultrasound to assess the lump, and that is even considered a short wait time by most Newfoundlanders. But, instead of waiting anxiously during those months, he travelled back to Spain. Within 1 month, he had a doctor’s appointment, an ultrasound appointment, and another doctor’s appointment to receive the (thankfully non-cancerous) results. 1 month.      

There are a few important things to note here: first, this occurred through the private health care system in Spain. Second, I cannot know whether it would’ve taken more or less time through their public health system (but know their system statistically outranks ours). Third and most importantly, while there is controversy surrounding private health care systems, at least he had that option, something impossible for Newfoundlanders who are scared they may not have the time to wait.

* * *

I think getting cancer is a universal fear, which I experience too. But, If I am ever to become sick, my biggest fear is that it happens while I still live in Newfoundland. Because the saying “my life is in your hands” holds little meaning here. My life isn’t in someone’s hands, just merely the hands of time. It is only if time allows, that my life may be put in a doctor’s hands. And it is only if time allows, for my condition to not have worsened to the point of it no longer mattering who’s hands my life may fall into.

But the most frightening and painful thing, for me, is not to have these fears, but to watch family members live them.

Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider. The website owners are not responsible for the contents of the guest blog posts.

This guest blog is a part of a public – scientist collaborative project led by the Public Interest Group on Cancer Research in Newfoundland and Labrador, Canada. For further information, please see here: mun.yaffle.ca/projects/15039.

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January 24, 2024January 30, 2024 by sevtapsavas Categories: Blog, Public Interest Group on Cancer ResearchTags: Advocacy, cancer, Cancer Stories, guest blog, healthcare system, Newfoundland and Labrador, Public Engagement, Public Outreach, Sharing our stories 1 Comment

Pilot Podcast Episode – Introduction to our team and project!

On behalf of the entire Public Interest Group on Cancer Research, we are beyond excited to share with you our first ever podcast episode aired today!

Thank you Jason Wiseman, Janine Taylor-Cutting, Kayla Crichton, and Aaron Curtis for making this a reality!

Podcasting is one of the digital tools that we have proposed in one of our recent projects, to exchange knowledge about cancer with members of the public.

We hope to have more guests and have conversations about cancer from diverse perspectives.

You can find more info about this project here or can contact me (savas{at}mun.ca).

Please join us!

Funding by the Office of Public Engagement – Memorial University and support by NLSUPPORT are gratefully acknowledged.

Sevtap Savas, PhD. Jan 17, 2024

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January 17, 2024January 17, 2024 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: Canada, cancer, digital tools, Knowledge exchange, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Podcast, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, Science Communciation, St. John's Leave a comment

SAVE THE DATE: Documentary Screening and Panel Discussion event focusing on transgender individuals with cancer

MAY 16, 2024

All interested individuals are invited!

Registration details to be announced soon.

SAVE-THE-DATE-Flyer_2Download

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January 15, 2024January 22, 2024 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: 2SLGBTQIA+ health, Canada, cancer, cancer lived experience, Documentary Screening, knowledge dissemination, LGBTQ, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, Quadrangle NL, St. John's, Transgender individuals 1 Comment

New Project! Documentary Screening and Panel Discussion event focusing on transgender individuals with cancer

May 9, 2024 UPDATE:

We invite you to view our promotional video – it is so much fun!

April 24, 2024 UPDATE:

We invite you to meet our documentary makers and panelists.

Please see here: https://strength-in-community.ca/2024/04/24/meet-our-documentary-makers-and-panelists/

April 7, 2024 UPDATE:

Registration to this event is now open!

Please see here: https://strength-in-community.ca/2024/04/07/registration-open-documentary-screening-and-panel-discussion-event-focusing-on-transgender-individuals-with-cancer/

Jan 15, 2024 UPDATE:

Save the date – May 16, 2024!

Please see this post: https://strength-in-community.ca/2024/01/15/save-the-date-documentary-screening-and-panel-discussion-event-focusing-on-transgender-individuals-with-cancer/

Jan 12, 2024 UPDATE:

You can find more info about this event here: https://mun.yaffle.ca/projects/15110

In short, we plan to have a documentary screening by Trans Dudes with Lady Cancers (http://www.transdudeswithladycancer.org/) followed by a panel discussion on transgender individuals and cancer, focusing on themes, such as:

  • Lived experiences of transgender individuals with cancer in NL
  • Healthcare services available for transgender individuals in NL (e.g. cancer screening, treatment, support)
  • Awareness of potential cancer risk factors for transgender individuals
  • Advocacy and research priorities

As a small token of appreciation, we will be offering a one-time honorarium in the amount of $100 up to 5 panelists (transgender panelists will be given the priority).

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To be updated – please stay tuned!

In collaboration with Quadrangle NL.

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January 9, 2024May 26, 2024 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: Canada, cancer, Documentary Screening, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Outreach, Quadrangle NL, St. John's, Transgender health, Transgender individuals with cancer 1 Comment

Annual Newsletter for 2023_Public Interest Group on Cancer Research

We are pleased to share with everyone our Annual Newsletter summarizing what the Public Interest Group on Cancer Research is and its main accomplishments for the year of 2023 are!

We have enjoyed our work together and succeeding in conducting and developing public engagement projects on cancer. Our members also have contributed to a number of scientific projects and training events. Please take a look at our Annual Newsletter!

To access it please click this link:

ANNUAL NEWSLETTER_Public Interest Group on Cancer Research_2023Download

We will continue to create and disseminate public and academic knowledge on cancer and public engagement in 2024.

If you have any comments or questions, or would like to join our group, please contact Sevtap Savas, PhD at savas{at}mun.ca or 709 864 6507.

Happy New Year everyone!

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January 1, 2024January 2, 2024 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: 2023, Annual Newsletter, Canada, cancer, Giving back to community, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Outreach, St. John's, Stakeholder Newsletter 1 Comment

We would like to be a part of bigger solutions

The new questions I am working on. I know someone out there has the answers.

Feel free to comment or email me at savas{at}mun.ca.

Thank you.

Sevtap Savas, PhD. Sept 20, 2023, St. John’s.

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September 20, 2023September 20, 2023 by sevtapsavas Categories: Blog, Public Interest Group on Cancer ResearchTags: Bigger solutions, Canada, cancer, Champions of Change, Change agents, Decision making, Memorial University of Newfoundland and Labrador, New questions, Newfoundland and Labrador, NL, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, St. John's Leave a comment

Public Interest Group on Cancer Research made two presentations in a national academic conference!

We are delighted to note that our group has made two presentations at the The Canadian Centre for Applied Research in Cancer Control (ARCC) Conference (Sept 14-15, 2023)!

The titles and authors of these presentations are:

1. Partnering with patient advisers in designing and delivering public engagement events on cancer. Sevtap Savas, Alicia Follett, Holly Etchegary, Cindy Whitten, Namiko Sakamoto, Janine Taylor-Cutting, Jason Wiseman, Derrick Bishop, John King, Tristan Bilash, Teri Stuckless.

2. The Public Interest Group on Cancer Research – The 2022 Update. Sevtap Savas, Holly Etchegary, Cindy Whitten, Alicia Follett, Namiko Sakamoto, Janine Taylor-Cutting, Jason Wiseman, Derrick Bishop, John King, Teri Stuckless.

You can find the recording of the 1st talk here:

Our group will continue to produce public and scientific knowledge AND disseminate them for access by anyone locally, nationally, and globally.

We thank our funder (Office of Public Engagement at Memorial University) and supporters (NLSUPPORT) for giving us a much appreciated support to grow our group’s activities!

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September 17, 2023September 17, 2023 by sevtapsavas Categories: Public Conference on Cancer - 2022, Public Interest Group on Cancer ResearchTags: #ARCC2023, Academic conferences, Academic presentations, ARCC conference, Canada, cancer, knowledge dissemination, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, patient partners, Public Conference on Cancer, Public Engagement, Public Interest Group on Cancer Research, public knowledge, Public Outreach, St. John's, The Canadian Centre for Applied Research in Cancer Control (ARCC) Leave a comment

Project end report for stakeholders: Development of a community engagement & outreach strategy on cancer

We are very pleased to share the Project End Report for our latest Public Engagement project entitled “Development of a community engagement and outreach strategy on cancer”.

This is a project that was designed by the Public Interest Group on Cancer Research.

The project leads include John King a public member and Sevtap Savas, a researcher.

There is useful knowledge for all stakeholders, including communities, researchers, healthcare providers and administrators, and governments. Take a look.

Quick-Start-2022_project-end-report_revisedDownload

Sevtap Savas, PhD. On behalf of the Public Interest Group on Cancer Research, Sept 7, 2023.

*revised on Sept 12, 2023 regarding “Affiliations”.

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September 7, 2023September 12, 2023 by sevtapsavas Categories: Blog, Public Interest Group on Cancer ResearchTags: Canada, cancer, community engagement, community outreach, Knowledge exchange, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, patient partnership, Population health, Project end report, Public Engagement, Public Outreach, St. John's, Stakeholders Leave a comment

Public Interest Group on Cancer Research published their 2nd scholarly manuscript!

What a pleasure to share with you our new scholarly manuscript on lessons learnt, experience and perspectives gained as a result of the Public Conference on Cancer (Oct 15, 2022)!!

This conference was organized and delivered by the Public Interest Group on Cancer Research. I strongly believe that the public members of this group were crucial in making this Conference truly meaningful.

So, what do we describe in this paper?

Key points can be summarized as follows:

– “Participant feedback was overwhelmingly positive“

 – More than 95% of the 52 feedback providers said that “The session was presented in an understandable manner” and that “I learnt valuable information in this session”

– “The most impactful/valuable parts of the conference identified by the survey participants were the patient stories and talks“

Am I surprised? Not at all; These were real folks, real stories. It is impactful.

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We also learnt about how the conference participants heard about the event:

– It was mostly social media and Memorial communication channels.

This is good to know, as we know we have work to expand these, so that we can reach out to more folks in NL.

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This Conference also helped us the Public Interest Group on Cancer Research increase our skills as conference organizers, moderators, and speakers. We really loved this experience, but the contents of this Public Conference on Cancer were also impactful on us.

-“Some of us felt hope for others who could benefit from the information shared during the Conference but at the same time felt guilty too that if the information was out/accessible earlier, it could help their loved ones who were lost to cancer“

That was me.

To date, I still feel guilty That I could not help my family members and friends as much as I could, as a cancer researcher. The pain I feel is nothing like I know. Please know your rights and risks, and protect yourself from cancer.

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The Public Interest Group on Cancer Research and I try very hard to bring useful knowledge on cancer prevention, early detection, and support to you.

We need your support to change things for the better. It will be the residents who will change things here.

We try everything in our power, by disseminating knowledge and our work in public and academic environments. We have local and global presence. But, how do we get the attention of local decision-makers?

Sometimes I feel like I keep hitting my head on that wall we call “silos”.

 But luckily then I remember power of people and motivation given to us by the cancer patients and families, and I gather my strength I try and try and try.

One day, it will work out.

People have the power, not the systems or governments. We can change things for the better. I believe in this. I will keep trying.

NOBODY can say that I have not tried.

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Going back to paper, I wanna emphasize 2 points on patient speakers:

– Speaking about cancer can lead to emotional impact. So we had one patient speaker recorded their talk. We got one criticism about this – please understand that sometime it is necessary.

– The 2nd point is that sometimes speakers could not share their conference presentation materials publicly – we present these reasons on the paper. In one case it was because it could harm “personal safety of a patient speaker”.

We all are learning – so join us in this process. We will continue to provide a safe environment and conditions for patient speakers and speakers from vulnerable communities.

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There are many great points made, lessons learnt, and perspectives gained by organizing and delivering the Public Conference on Cancer We are beyond proud that we share these with you and globally in this scholarly paper.

Please check the paper – it is freely accessible here: https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx

You can also check this Saltwire article for a lay and short summary of this paper: https://www.saltwire.com/atlantic-canada/opinion/letter-nl-patient-scientist-partnership-continues-to-create-scholarly-knowledge-on-cancer-and-public-engagement-100887355/

Please remember to take great care of your health and do not be shy to demand better conditions, knowledge, resources, and services to protect and care for your health you deserve it.

Until next time,

Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Sept 4, 2023

PS: quotes from Savas et al. Journal of Psychosocial Oncology Research and Practice 5(3):110, July-September 2023 https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx and may have been modified only to fit to the text

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September 4, 2023September 4, 2023 by sevtapsavas Categories: Blog, Public Conference on Cancer - 2022, Public Interest Group on Cancer ResearchTags: Canada, cancer, lessons learnt, Lived Experience, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, patient speakers, Personal impact, power of people, Public Conference on Cancer, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, silos Leave a comment

NEWSLETTER – Public Interest Group on Cancer Research – 2022

We are pleased to report back to our community!

Please see the Newsletter below for our goals for and main achievements in 2022!

We wish all of you a wonderful Holiday Season and Happy New Year.

On behalf of the Public Interest Group on Cancer Research, Sevtap Savas.

NEWSLETTER_Public-Interest-Group-on-Cancer-Research_2022Download

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December 13, 2022 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: Canada, cancer, Happy Holidays, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, Newsletter, NL, Public Conference on Cancer, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, Reporting back to community, St. John's 2 Comments

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