This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.
I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.
It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.
Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.
I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more
I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.
I can’t tell you how excited I am to be heading from Ottawa to Atlanta on Friday for the American Association for Cancer Research Annual Meeting. This is a huge conference, with 20,000-30,000 of the top cancer researchers in the world, plus many clinicians and so many others … including me! I’m participating in their “Scientist <–> Survivor Program”, which groups cancer survivor advocates with mentors, both in advocacy and also science. That’s right: we get connected with an expert in cancer advocacy, and also a scientist mentor to help us make the most of this amazing conference! There are so many sessions, but no one can go to them all. I’ve been trying to plan which to attend, and I’m facing scheduling conflicts. So many great options!
The app also has maps to help us find places. No getting lost at AACR Annual Meeting 2019! It will even show the path to walk from where one is to where a particular session is taking place. (In case you were wondering, it would take about 15 days to walk from where I am now to the Georgia World Congress Center, home to this preeminent cancer research showcase. I’ll stick to my plan to fly!)
Yes, I am quite excited about this privilege to participate in the AACR Scientist <–> Survivor Program. I feel very honoured that I get to be at the Annual Meeting, and I know I’m representing Canada as well as lung cancer patients, survivors and advocates. I will endeavour to make the most of this opportunity, and I expect I will spend time with exceptional people and learn a lot while I’m there.
I wish I could take all of you with me! Since we can’t all go, I’m going to try to do the next best thing. Here is one of the ways I’m going to step out of my comfort zone while I’m in Atlanta: I’m planning to post videos on YouTube of my time there.
No, not even a migraine could stop me, last December, from submitting my application to the American Association for Cancer Research (AACR) Annual Meeting Scientist – Survivor Program, which takes place March 30 – April 3, 2019, in Atlanta Georgia! #AACR19 #AACRSSP19
This program intentionally connects scientists with cancer survivors during this big, exciting international cancer research meeting. It may be difficult for some of you to understand why I would be so terribly keen to go, but trust me! I really, really wanted to go and be part of this amazing opportunity to connect with people, learn things and tell my community about them!
The AACR’s website says their Annual Meeting’s program, “covers the latest discoveries across the spectrum of cancer research … and highlights the work of the best minds in research and medicine from institutions all over the world.”
I’d been trying to work on my application, as the days raced towards the December deadline. Busy days, Lung Cancer Awareness Month activities, end-of-year extra’s, concerts, wrapping up details from the November “Living with Lung Cancer: Ottawa’s 1st Patient-Driven Mini Summit”, kids’ activities, special Christmas events, family travel, etc.
Suddenly I was down to the wire with thoughts swirling in my head, so fast I couldn’t write them down. I had answered most of the questions, only a couple left plus the BIG ONE: an abstract for a scientific type of poster that I would actually make and present if I was accepted into the program. (No pressure!)
What made it worse was that my hands weren’t working well. Nerve pain is a side effect of the new drug I’m on. Writing or typing can be very painful.
A dear friend helped by sitting at a coffee shop with me the evening of the deadline, jotting down my words on paper, helping me to compile my myriad of lung cancer ideas and thoughts into one clear concise “sort-of-scientific-sounding” abstract. When it was time to go home I still didn’t have it, and my headache was growing worse. I started to feel terribly sick …
I’m not going to tell you how physically awful I felt that night as I struggled at the computer to get the words together and inputted to the computer so I could submit my application. But I did it!
And here it is, all official, at this link, or you can read it below.
I am so happy to say that I am incredibly honoured to have been accepted into the program! A lot of people didn’t make it. Only 40 of us did.
As I go to this amazing conference, I’m representing those who weren’t accepted and those who didn’t apply. That’s a big responsibility, and I intend to share the things I will learn with as many people as I can.
You’ll be hearing more in days to come, but for now, I’ve got to go work on that poster! 😀
ADV06 / 6 – Informed, inspired, empowered: The new era of lung cancer patients/survivors in Ottawa, Canada
March 31, 2019, 1:00 PM – 5:00 PM
Jill Hamer-Wilson. Independent Advocate, Ottawa, ON, Canada
This poster will discuss many aspects of Living with Lung Cancer. Jill Hamer Wilson’s mission is to raise up a team of lung cancer advocates whose voice cannot be denied and who will influence for change. Caring until there is a Cure through more research will equal more survivors. Initiatives include monthly support meetings for lung cancer patients, regular online support and communication, monthly outreach tables in the cancer centres, annual lung cancer patient summits, regular encouragement, inspiration and spreading of hope which goes beyond ourselves, beyond lung cancer, which breaks down walls that divide us. Constituencies include local lung cancer patients, and focus locally, but also reach to all affected by any kind of cancer, anywhere in the world. Ottawa’s 1st Patient-Driven Mini Summit took place on November 27, 2018. It provided a terrific stimulus to provoke discussion and networking with peers and leaders of interest. The psoter will also explore the experiences of lung cancer patients at the Ottawa Hospita; the journey from scarcity to abundance and the under resourcing to forming a community of hope and providing of resources for others. Examples of collaboration, such as speaking on panels about bench to bedside research and care, clinical trials, and fundraisers will be outlined along with learning and growth opportunities for lung cancer patients/advocates.
Please take a few moments to read what is below, what the good people of Canadian Cancer Survivor Network posted on their website about our day at Queen’s Park. If you follow the link, you can go right to their website which has more pictures from the event. CCSN does great work, including offering helpful resources like free webinars. I’m grateful for opportunities to partner with them. We are stronger and better when we work together.
CCSN & Lung Cancer Canada to MPPs: Lung Cancer Patients have a Right2Survive
March 1, 2019
Lung cancer is the most commonly diagnosed cancer in Canada. It kills over 20,000 Canadians every year – more people than colorectal, breast, and prostate cancers combined. Despite being the number one killer, outcomes in lung cancer fall behind other cancers. All cancer patients deserve a chance to become cancer survivors, and this includes lung cancer patients too.
The Canadian Cancer Survivor Network (CCSN), in partnership with Lung Cancer Canada (LCC), hosted a legislative reception and breakfast at Queen’s Park on February 20th, 2019. Patients, survivors, caregivers and patient groups from various parts of Ontario attended and spoke with MPPs on the importance of ensuring that lung cancer patients receive opportunities in survivorship.
Speakers at the reception included The Honourable Christine Elliott, Deputy Premier and Minister of Health and Long-Term Care; MPP France Gélinas, NDP Health Critic and Chief Opposition Whip; MPP John Fraser, Interim Liberal Leader; and MPP Mike Schreiner, Green Party MPP and leader of the Green Party of Ontario. The reception was sponsored by MPP Andrea Khanjin, Parliamentary Assistant to the Minister of the Environment, Conservation and Parks.
Lung cancer patient advocate, Anne Marie Cerato, spoke about her journey to survivorship after being diagnosed at a young age with stage IV lung adenocarcinoma. She also celebrated ten years of being a lung cancer survivor with the audience, one that she described as a “unicorn” and “rarity” in the lung cancer community.
Over 30 MPPs from all parties as well as cabinet ministers attended and interacted with patients, survivors, caregivers and representatives from the patient community.
Groups from the patient community included After Breast Cancer, Dense Breasts Canada, Gilda’s Club Greater Toronto, Canadian PKU & Allied Disorders, Life Saving Therapies Network, Lymphedema Association of Ontario, Alberta Lymphedema Association, Lymphoma Canada, Ontario Lung Association, Prostate Cancer Canada, Canadian Cancer Society and Niagara College Canada.
Cancer patient advocates, survivors and caregivers from all over Ontario attended the event. These included:
From the Greater Toronto Area and neighbouring cities: Anne Marie Cerato, Larry Frydman, Raymond Laflamme, Roz Brodsky, David Soberman, and Kathryn Hamilton
From Niagara: MaryAnn Bradley
From London: Palmerino Leone and Julianna Leone
From Ottawa: Jill Hamer-Wilson and Andrea Redway
These fantastic patient advocates met with many MPPs, attended Question Period and shared their stories and input on how we can improve Ontario’s healthcare system in meetings with MPPs from all political parties.
“This experience gave me the opportunity to share with MPP France Gélinas, MPP Jill Andrew and MPP Daisy Wai, the early detection lung cancer screening pilot project. These conversations helped me to bring awareness and what it would mean to be able to treat lung cancer earlier than when it has advanced to Stage IV, and how this would be cost-effective in the long run.
I found that we still have a long way to go to end the stigma behind lung cancer and bring light to how important early detection in cancer is.” – MaryAnn Bradley
What We Said: Screening, affordable medications and patient engagement
Earlier detection is an important tool for improving long-term survival rates. Early lung cancer screening programs can also save our healthcare system money. According to Canadian studies, early treatment can save up to $15,000 per patient, as opposed to treating it at a later stage. We urge all political parties to continue their support by turning the early screening pilot programs in Ontario into permanent programs.
Scientific advancements continue to transform treatments available for lung cancer patients, offering them more options and the potential of a longer life for those with advanced cancers. However, there are long delays between Health Canada approval and provincial funding in Ontario – with one treatment taking more than 1400 days.
Ontario patients also have to pay for take-home oral cancer medications. This presents a barrier for many as these medications are not covered in the province, in contrast to Alberta and British Columbia.
We urge all political parties to take leadership and to bring Ontario’s healthcare system up to date. We also urge all political parties to ensure that the voices of those fighting cancer are heard, as the government consults on evolving our healthcare system to best meet the needs of patients, survivors and caregivers.
About lung cancer and the Right2Survive campaign:
The Canadian Cancer Survivor Network (CCSN) has partnered with Lung Cancer Canada (LCC) to increase awareness of lung cancer and to destigmatize this disease. The Right2Survive campaign, www.right2survive.ca, aims to build a community of support around the need to do more to improve lung cancer survivorship.
Even though I set two alarms to make sure I woke up in time, I managed to sleep through both of them, plus the two that regularly go off on a Tuesday morning. I can’t believe I slept through four alarms this morning!!!
I’ve never done that in my life! I guess I needed that extra hour and a half of sleep, and somehow -miraculously- I wasn’t terribly late for my ride and we made it to the station in plenty of time. So thankful!
This Family Day long week-end has felt like a whirlwind, with all three kids flinging off in varying directions at various times. Good directions, great discussions! So glad to have them home and tucked into bed. I love our conversations around the table, and also the one-on-one times. I’m blessed!
Oldest is asking profound questions. Also cooked burritos for dinner. From scratch: tortillas and all. Amazing! Middle was at Ontario Youth Parliament and is energized, ebullient, keen for next year. Joy! Youngest (among many other things) made and photographed this gorgeous cake (from scratch) for one of her friends. I’m filled with gratitude and awe as I watch them growing up!
… and I’m feeling kind of nervous about my little whirlwind of a trip to Toronto in the morning.
I feel privileged to go. I’m healthy enough. I’m going with great people. It’s well-organized. We bring important messages… and -importantly- people have said they’re coming to hear us.
Thank you to everyone who contacted their MPP! It means a lot to have you standing with us. We need a team surrounding us as we speak for so many people affected by lung cancer who can’t make it to Queen’s Park this week.
Thank you to all the MPP’s who are coming to the breakfast and taking meetings with us. I’m grateful for this opportunity. And a heartfelt thank you to Canadian Cancer Survivors Network and Lung Cancer Canada, and everyone involved in the #Right2Survive campaign.
I’ll try to tweet and post #Right2Survive as much as I can over the next two days … while also holding onto my hat! #onpoli
Celebrating 5 years since my lung cancer diagnosis
Truth is, no one really knows how hard it’s been, these last five years. I don’t like to talk about the hard times. That’s part of my coping strategy. I focus on what’s good, what’s beautiful, what’s true.
When I was first diagnosed, I woke up several times in the night. Chemotherapy or cancer side effects, and perhaps the stress of it all. I would look out the window and note the position of the moon and stars in the sky. Knowing they were still there, still moving as they had been prior to diagnosis, somehow helped, and I would go back to bed, back to sleep.
My faith in God has made a huge difference. I am grateful for the love God has shown me, and given me for other people. Any good you see in me is due to the difference Jesus makes in my life. I don’t talk about my faith much publicly, but I’m always happy to. Ask me about Jesus anytime!
It took a whole huge group of people to help keep me alive five years past diagnosis. I don’t know who they all are: researchers, doctors, scientists, statisticians, fundraisers, donors, nurses, administrators, number crunchers, cleaners, clerks, managers … I don’t even know all the categories of people to list, but I wish I could thank every one of them.
Getting me to five years has definitely been a group effort! During the hard times, even the smallest kindness or encouragement can make a big difference. Even a kind word or a greeting called out across the street! Many of you may not know what a significant difference you’ve made for me. Thank you.
While I was writing my blog yesterday evening, a group of amazing friends came carolling and gift-bearing to our door, in honour of my five year “cancer-versary”. This five year journey has been one of unexpected kindnesses, unexpected grace. I could never write them all down.
So many of you have made a difference for me, for my family these past five years. I am hurting my brain trying to come up with a framework which would help me to include and express all the many kindnesses we have received, tremendously moving and generous gifts which have helped us make it through the terribly difficult times over the past five years.
I simply can’t do it. I can’t list all the people. I can’t even categorize the types of gifts you’ve given us. Not even with the broadest of brush strokes or the vaguest of generalities. There is no way this human can find to thank all you wonderful people in one single blog post.
I can say that each of you, even with the smallest of kindnesses, each of you who have helped us travel through this valley, have made a significant difference. You, perhaps, may have no idea. Thank you.
Thank you for showing love to this person affected by lung cancer. Thank you for showing love and kindness to my husband and children, also affected by lung cancer.
Not everyone has people like you.
Thank you for making a difference in our lives.
Could I ask just one more thing?
Help me win the Super Bowl Challenge! Whoever raises the most money for lung cancer research gets to go, and it’s not just about watching the game. If I win, I will tell my story to influential people who are in a position to help make a difference for people affected by lung cancer. Plus watch the Super Bowl … in Atlanta … in the Winter!