On this World Day of Cancer, we are excited to release our Podcast Episode 1, where Jason, Janine, and myself talk about cancer, our province, and a bagel (!) in a comfy, cozy, and friendly way 🙂
A few things we – The Public Interest Group on Cancer Research – wanna achieve with this podcast series are to:
remove stigma around cancer
make it a conversation topic
learn from each other
so that we can help reduce our risk of getting cancer and support ourselves and others going through cancer better.
Please join us in this goal.
You can find more info about this project here or can contact me (savas{at}mun.ca).
Funding by the Office of Public Engagement – Memorial University and support by NLSUPPORT are gratefully acknowledged.
My name is Deanna Roy, I was diagnosed June 1st, 2018 with stage 4 HR2 positive metastatic breast cancer at the age of 42.
From St, John’s Newfoundland and my cancer journey is not a typical cancer journey in the way that I found out I had cancer.
Me and my best friend were out shopping. I left a local store to step down. From the sidewalk, I thought I tripped.
But later I found out my leg gave out, I could not get up so we had to call an ambulance. They brought me to the hospital, which was the Health Sciences, ‘cause that was the closest when I was there.
I went in Emerge. They gave me X-Ray, and then they said they were going to put me in surgery right away.
But it didn’t happen because something else showed up on the X-Ray, and then I had to go under another lot of tests. I was asked strange questions.
And later on that evening, in Emerge, I found out that I had breast cancer and that’s why when I stepped down, my knee and some of my tibia and other parts of my leg just, I guess, disintegrated.
Of course, they admitted me into the hospital. I had to have surgery, but I had to wait a week because they had to figure out how do they were going to do surgery.
And then, I found out that I had to have radiation and chemo.
It started. I only had to have 10 rounds of radiation so they started that while I was still in the hospital. I was in the hospital for 3 weeks. They had to reconstruct my leg.
And then after I left in the end of July, I started my cancer treatment, which was chemo.
I had to have so many rounds and that brought me until December of that same year, which I had to go every 3 weeks to get, and then after I was finished my chemo, I still had to get some treatments that was both to keep occurring for the rest of my life and plus I had to have a bone treatment as well to strengthen my bones.
But along this journey, I had many ups and downs.
And then, a year and a half ago I ended up with an infection in my leg.
They had it under control and then I shaved my leg and caused the hole and that caused the infection to start leaking.
And I had to go in and have 4 more surgeries on my leg and I was on very strong antibiotics.
And that would interfere with my treatment. So, I had to stop my treatments for total of 10 months.
Through the stoppage, and that, and after everything was clears and I could go back and see my oncologist, they did a CAT scan that showed that I had no cancer growth whatsoever. It was all clear, which you could not, because at the stage 4, it’s very hard to keep it under control.
But with all the treatment and stuff, now I don’t have to have any more treatment because the cancer is not growing. Every 3 months, I’ll just have a CAT scan and they’ll keep an eye on it until I need to start having some more treatment but hopefully it doesn’t come back.
I want to say this when you hear stage 4, you think it’s a death sentence. But it doesn’t have to be a death sentence. Go on and live your life the best way you can and keep a positive attitude. And, anything is possible you can beat anything and with my diagnosis, my average life span, which none of the doctors ever told me, was only as 3 years life expectancy. I’m almost going on my 6th year. So anything is possible.
I know it is hard but if there are people out there that can help you through it. You can go and you have family members.
You could talk to people and just share your story.
And another thing is all the professionals told me “Don’t go and research stuff online”, because it’s all negative and I took their voice. I never looked online to read anything.
I only started doing that probably around 4 years after, a couple of years ago, I just started looking up all the information because sometimes, there’s a lot of false information out and you don’t need that looking at all the bad stuff that could happen. All you need is positivity and a good feel and you can get through anything. You can talk to social workers you can talk to a therapist, if you need to.
I had good support and it made my journey a lot easier.
You will have bad days, but on your bad days, you’ll just rest and on your good days, go.
And it is, for me, it was a big life change. I never thought of it.
And also, my husband had to stop his job because he had to take care of me and it was a big financial burden, but through other programs and stuff as people there to help. I got long term disability and stuff with the company I used to work with. So, I’m more fortunate than other people that is going through the same thing. And they can’t afford to stop working. But sometimes you have to just to eliminate some distress and all that.
Sometimes you just, I don’t know, just live one day at a time.
Some people get in a rabbit hole that they can’t get out of but there is a rabbit hole that you can get out of and I just want you to know that.
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.
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.
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!
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 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
Last weekend was a very proud time for us – our manuscript describing the creations, aims, and the work of the Public Interest Group on Cancer Research is now published in a peer-reviewed, open access, and international journal 🙂
Very exciting experience. My first time authoring a scholarly article together with this team and patient partners 🙂
We not only engage with our community members/patients, work and advocate together with them, but also contribute to the scholarly field of patient engagement – that is so cool 🙂
Until next time.
Sevtap Savas, PhD. Sept 9, 2022, St. John’s, Newfoundland and Labrador
