What a great healthcare team! Yesterday afternoon four skilled and caring nurses give great care at my chemo appointment (you can read that blog post here), and yesterday evening my terrific oncologist, Dr. Garth Nicholas of The Ottawa Hospital Cancer Centre, read that blog post and reached out. We exchanged messages so I could ask questions about the pro’s and con’s of ports and PICC lines. I was pretty sure I would go with a port line before messaging with Dr. Nicholas, but it was good to hear his thoughts in addition to the information in the brochures the nurse gave me yesterday afternoon. Even before the conversation he thought I would want the port line because he pays attention and knows me well enough to know.
Yesterday evening Dr. Nicholas submitted the request for a port line, so it’s already (!) in process and I’m very thankful. There are no guarantees since the request needs approval from the appropriate team for the procedure to take place. I’m very grateful to Dr. Nicholas for submitting the request so quickly and advocating for the port line in that request. Health care providers matter. Advocacy matters. Thank you, Dr. Nicholas, for being an advocate.
Team Draft works hard every day to encourage, uplift and strengthen lung cancer advocates. I have been the beneficiary of that encouragement and advocacy training in various ways since I first heard of Team Draft through this video What’s the Biggest Cancer Killer? made by Team Draft with our friend Keith Singer and the Catch it in Time team. I met Chris in person in 2018.
Team Draft has traveled worldwide to connect with the lung cancer community in cancer centres – over 60 in the first year – as well as meeting people in restaurants, at games, and in people’s homes. It matters to Team Draft to really get to know people and help them develop their strengths. Seeing people in their contexts is the best way to more fully understand their story and better support them. Team Draft works strategically, developing leaders and encouraging everybody.
With COVID Team Draft has quickly pivoted to making the most of opportunities. Thanks to online platforms such as Zoom, they meet regularly with a wide variety of people in many places, right from the comfort of home.
Team Draft values the importance of following best practices, such as researching our audience and tailoring our messages to our listener. Team Draft embraces the power of story and audience-appropriate messaging for advocates: “We have to know our audience and we need to know our ask.”
Through Zoom, Chris has introduced some lung cancer advocates to his friend Dr. Dennis Rebelo, a professor, coach and consultant who has developed an effective method for helping people tell their stories better. It’s called StoryPathing, and as we’ve started down this path it’s helped us more deeply explore the power in our stories. This process has great potential for helping advocates tell our stories better.
Advocacy is about relationships and storytelling. More effective storytelling means more effective advocacy and in this case, that can mean better outcomes for people affected by lung cancer.
I’m pumped about the possibilities!
Thank you, Chris Draft, Team Draft, and Dr. Dennis Rebelo!
Cheers to the researchers, and the whole team who has helped keep this mom of three alive for seven years since a stage four lung cancer diagnosis December 2013!
I’m so grateful to be here! My life is enriched through knowing and spending time with a variety of very special people (whether online, on the phone or in person). I’m blessed with dear friends and meaningful work as a lung cancer survivor advocate. This weekend, two of my fellow lung cancer survivor advocates sisters gave our family this feast to celebrate my seventh “cancerversary”, along with a beautiful card. Thank you, Andrea and Kim! (photo’s of people all taken before COVID).
This seventh year has meant a lot because my youngest turned 13. She was only 6 when I was diagnosed, and she doesn’t have many memories from before then. During these seven years she has grown and matured, and I catch so many glimpses of the amazing young woman she is becoming. Now we’re in this brief, sweet spot where all three are teens. Parenting adolescents isn’t easy, but it’s a privilege and there is so much joy. The oldest is doing well in his second year of Electrical Engineering and Physics at University, and the middle one is currently enjoying a high school co-op placement perfectly suited to him and his love of music and music education. What a gift to walk with them through this season! #ResearchMatters
Here are some photo’s of the kids from the past seven years. We are so grateful for milestones and memories!
We owe a debt of gratitude to the researchers who, through creative brilliance, steadfast discipline and diligent tenacity navigate the twists and turns, false starts and dead ends that form the research pathway from bench to bedside, from idea to effective treatment.
And the whole team of administrators, statisticians, economists, funders, panel members, visionaries, regulators, encouragers, and so very many more very necessary and important team members, Thank you!
Way to go, team! Thank you! Thank you for working to keep me alive these seven years! On behalf of family, friends and communities, THANK YOU!!!
We had no idea I’d still be alive seven years after diagnosis. Please keep working hard with urgency so that I and others like me can live longer and better!
I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!
Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.
Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.
That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!
Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…
Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!
Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!
All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!
In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.
In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!
Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.
This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.
Dear Hon. Christine Elliott, Minister of Health,
I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario.
I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.
It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.
Crizotinib for ROS 1 received NOC November 2017
It received a positive PCODR recommendation June 7 2019.
The PCPA (pricing) negotiations are complete.
Provinces across the country have started to cover it including BC, SK, QB, NL, NB.
It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication.
This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding. To date, there has been no response.
Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott firstname.lastname@example.org, and also cc me email@example.com.
Please don’t hesitate to reach out if you have any questions, concerns or comments.
I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: firstname.lastname@example.org email@example.com firstname.lastname@example.org email@example.com)
THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.
A pill can turn a life around. Thank you for acting to turn people’s lives around.
World Lung Cancer Day is August 1, and this year the focus was on team building for a group of over 30 lung cancer advocates from across North America! Team Draft gathered advocates online to welcome author and inspirational keynote speaker Marques Ogden as he – for the first time – shared his own personal story of losing his grandmother, the matriarch of his family, to lung cancer.
Not everybody is ready to be an advocate after they lose someone they love. We recognise that this can be a very hard thing to do. It takes courage to share one’s story, so it is important that we welcome people and provide a supportive environment that allows them to share their story. We are very grateful to Marques for opening up and telling us his story.
Marques Ogden’s life story is compelling, and he tells it well. After his six season career as an NFL offensive linesman, he navigated the challenging transition to life after football. He started a construction company and grew it to one of the largest in Baltimore Maryland. Marques shared openly about mistakes he made, and the bad company culture he allowed to grow. He went from being a multimillionaire to going bankrupt in a matter of months, then did some significant self reflection before charting a new course and pursuing it with steadfast determination. He is now a key note speaker, executive coach, business leader and author.
Marques has wisdom to share about life, business and teamwork. He shared some important words for lung cancer advocates, and we were taking notes! Lung cancer needs more advocates who work together as a team.
Marques’ words sparked thought and conversations about team building values, culture, communication and perseverance. He challenged us to be intentional every day, and to work together as a unit to reach our goals. Chris Draft also spoke about the importance of team, and how team building needs work, time, relationships, and valuing skills and strengths.
Thank you, Marques, for sharing wisdom, and also your personal lung cancer story. Thank you, Team Draft, for setting up this World Lung Cancer Day celebration and team-building opportunity. Thank you also for this great book which I’m enjoying reading.
Research makes a world of difference! Research is a reason to hope, and daily there are advances in cancer research.
Patients, survivors and caregivers can speak into the research process, making it better. There is need for people who have cancer experience to participate as research advocates.
I’m glad to finally have my computer back and running, the corrupted hard drive replaced. Not having a computer made life and advocacy much more challenging. Even without it, I’ve been busy with a lot of lung cancer activities, including ongoing research advocacy with the Canadian Cancer Trials Group and the International Lung Cancer Foundation.
If you are a lung cancer survivor advocate who is interested in learning and growing as a research advocate, please consider applying to the (IASLC) International Association for the Study of Lung Cancer’s “STARS” program, in which I participated as a mentor for six months last year. Such a great learning opportunity! You’ll need a reference and to set aside a few hours to apply. (The AACR Scientist <–> Survivor Program is also excellent, and open to advocates for all cancers.)
I spoke as part of a team to a group of patient advisors at The Ottawa Hospital in January, with the goal of working together to improve cancer clinical trials. They were engaged and inspiring! We are walking in new territory and innovating new pathways. I’m hopeful.
Our monthly lung cancer hope outreach tables at the Cancer Centre continue with good coordinating work from Andrea Redway, with support from The Ottawa Hospital, Lung Cancer Canada and the IASLC. It is clear that the information and conversations make a real difference for survivors who stop by, many are newly diagnosed or in process of being diagnosed, which is one of the most challenging parts of the lung cancer journey. We are privileged to invite them into community, share information and stories, and (perhaps most importantly) listen. It is clear by their facial expressions and body language that they tend to leave much more uplifted and encouraged. We have an amazing team of compassionate and skilled people. From time to time, we talk about the emotional toll it takes on our team. Most agree that it leaves us feeling a little emotional fatigue by the end of the day, but after a bit of rest we are restored. Overall, this work brings so much joy and fulfilment to team members. We get along well and enjoy each others’ company. It’s really good to work together as a team. I’m very grateful for these people and other teammates who invest a day each month.
There are many amazing people doing good work for people affected by lung cancer and other cancers. What a privilege to get to know some of them, and sometimes connect them with each other! It brings me joy to connect people to form strategic partnerships.
It was great to meet Amy Desjardins, Director of the Canadian Cancer Society, Ottawa Region, in person in January, and to learn that their holiday fundraising appeal which used my story has raised over $280,000 for cancer research.
I’m part of several online lung cancer communities, which offer information, empathy and support. I’ve met many hundreds of people around the world through these groups, and it’s exciting to meet in person. When Kim told me that she was coming to Ottawa for the Family Day long week-end, I asked my kids how they felt about having her family over for dinner. They jokingly gave me the “Stranger Danger” talk! They are very supportive of my lung cancer work because we’ve talked about it and they understand how important lung cancer survivor community and advocacy are. They know that it’s up to us to support people and stand up for better outcomes for people with lung cancer. We were very happy to welcome Kim and her family into our home. It was great to spend time together.
I continue to connect with many people affected by lung cancer and spend hours each month listening, encouraging and seeking to inspire hope. It’s an honour. We have the choice to live in hope or fear, so why not choose hope?
Did I mention that my youngest turned 13 recently? That’s right, now all three are teens and life is wonderful! I can’t tell you how grateful I am to be alive and be here with them and for them. I cherish these precious moments, and hope for many more. I dedicate time and effort to advocacy with hope that this will help improve outcomes for others affected by lung cancer, today and in the days to come.