Together We Make a Difference

A huge thank you to all you wonderful people who wrote letters, called and/or emailed for people with ROS1 to get access to Crizotinib. I asked you in a blog post on September 13, 2020, to write officials requesting for Crizotinib to be added to the formulary for people with ROS1 lung cancer. I heard from over 30 of you who took the time to help save lives. Thank you! Together with all the other people who communicated, our voices were heard and Crizotinib was approved! Together we make a difference!

This is wonderful news for so many people, including B. who dropped by to chat and pick up two The White Ribbon Project ribbons today. She was diagnosed fairly recently with ROS1 lung cancer and is taking Crizotinib. She’s a lovely person with a family and strong support community who love her. It meant so much to give her two ribbons with love: one for her and one for her to give to a supportive friend.

Thank you to Bill and Lisa Weir, Canadians who make each ribbon with love and give each ribbon with love. Following the lead of Heidi Nafman Onda and Pierre Onda , making and giving ribbons with love. Thank you Lisa Weir and Bill Weir for working with care, ensuring that each ribbon is exactly like the originals. Same measurements, same materials, same fonts, same stickers. Strength in uniformity. Love in every single detail. #thewhiteribbonproject bringing people together, reminding us we’re not alone. #love #team

#thewhiteribbonproject #inclusive #supportive #anyonecangetlungcancer

Thank you!

Made in Canada with Love

Strengths, Stories and Opportunities

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!

Four Down, One to Go

Many thanks to all you who have prayed, called, and messaged this week while I’ve been undergoing daily radiation treatments. I’m very grateful for your care and support. Cancer can be hard in many ways, and many of you know firsthand what it is like to be diagnosed or to walk with someone diagnosed with cancer.

We all need support, and this week has powerfully reinforced the difference supportive caring people make for someone facing cancer. Treatments this week have been challenging, and your words and actions have tremendously encouraged and helped. Thank you.

Never doubt the difference you can make for someone.

This is why I’m so passionate about lung cancer support groups. They can make a huge difference! It doesn’t take much to start one up. If you’d like to talk about it, please reach out. Helping get another support group going is definitely something worth investing time and energy in!

Four down and one to go! I’m so grateful I’m not journeying alone.

(All photo’s were taken prior to COVID-19, except the one of our Ottawa lung cancer support group meeting by zoom.)

A day in the life of an advocate

Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!

Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …

International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.

The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!

The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.

There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team

photo credit: Chris Draft

Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude

World Lung Cancer Day 2020

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.

Thankfulness at the End of the Decade

Thank you for supporting Team Jill in the Super Bowl Challenge! Together we raised over $1000., whether you count in Canadian or American dollars! That is over $1000 that would not have been raised if Team Jill hadn’t taken action to raise lung cancer funds, and if some of you hadn’t taken action to give them. Thank you! Thank you also for your many encouraging words of support, the “likes”, retweets, shares, etc. This kind of support matters too! While writing this, another person gave $50. Thank you!

All together so far, the Super Bowl Challenge has raised over $77,000 USD. That is money that might not otherwise be raised for lung cancer. The SBC has ended, but you can still give until Feb. 3rd. Thank you Chris Draft and Team Draft for the work you put in to make the Super Bowl Challenge happen this year. What a great opportunity for cancer centres and other charities to raise funds and get huge publicity for the important work they are doing!

As the year-end draws near, I’m thankful for life and meds that help keep me healthy, thankful for all I was able to accomplish this past year. A lot of the work I’m doing is new for lung cancer. For example, I’m the first Canadian Cancer Trials Group lung site patient representative who has been affected by lung cancer. Before my oncologist asked me to sign up, Carol had been kindly representing lung cancer patients, even though her cancer experience was a different kind of cancer. We owe a debt of gratitude for the good lung cancer work being done by people not affected by it. Much lung cancer work has been left undone. Many groups are only starting to wrestle with how to include the patient voice. Some are not yet convinced of its value. Being the first in new territory is harder, like carving a path in the jungle. (My University degree in Engineering where I was sometimes the only woman in classes of a few hundred men, and summer work where there was no women’s washroom, helped prepare me for this, along with summer work tree planting and working as a surveyor – not in a jungle, but in all kinds of terrain in the Ottawa region.) I work, not just to do the work, but also to carve paths to (hopefully!) make it easier for others who will come after me.

There are a few interesting projects in the works, which may be announced soon. I’m also sharing my story at my hospital in January, and continuing with my usual volunteering as patient representative for the Canadian Cancer Trials Group, The International Lung Cancer Foundation, and at The Ottawa Hospital. Our monthly support group and outreach tables at the Cancer Centre will be ongoing as usual. Too many to list them all!

Here’s a great opportunity for anyone affected by lung cancer in the Ottawa area. Back in November, Dr. Dugald Seely, Founder and Director, Ottawa Integrative Cancer Centre and Prof at uOttawa, set up a meeting with Andrea Redway and me. He wanted input from people with lung cancer experience as his team worked on developing a program for people affected by lung cancer. (He had also spoken at our summit in November.) So nice when others take the initiative for lung cancer. The free program starts January 23, and runs Thursday afternoons. Here’s the link for info and registration. Thank you, Dugald and OICC!

As 2019 draws to a close and we make the most of each last day that we are given of this decade, I have been doing a lot of reflecting. I may share some of it with you, but in case I don’t blog again before January, Happy New Year to you and yours! May the next decade be filled with love, joy, peace and thankfulness.

12 Drummers Drumming – Advocates

12 Days of Giving to Lung Cancer Clinical Trials

Drummers keep time. We’re loud. We call out, “We are here!” We have picked the time and place and we are letting you know where we are. We are not going to hide. The place is here. The time is now.

Drummers beat out the call to action, heart cry of the advocate. Advocates bring sense of urgency. Some of us embody it. We know lung cancer is life and death and we are not willing to wait!

Advocates are trained to watch and listen, ask questions, spot gaps, speak appropriately, and drive change.

Advocates are trained in best practices and how to apply them.

Advocacy is #team. We all need a team. We are stronger together, better together. In lung cancer we need everyone, patient, survivor, caregiver, friend, any age, every stage, anyone, everyone.

Our hope is that in 2020, the lung cancer advocacy community keeps growing, supporting, learning, applying best practices, driving change. We are powerful, especially when we are a good team.

We beat the drum. The place is here. The time is now.

We are here. Gather together. Support each other. 

We drive change.

We call for action.

TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight*. Please give and ask people to give. Advocate for lung cancer clinical trials today!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #TeamDraft #ChrisDraft #Please #Give #Advocate #ThankYou #lcsm

* Please give. TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight: technically very early tomorrow morning – 3:00am New York City time.


Day Ten – Thanksgiving

12 Days of Giving to Lung Cancer Clinical Trials

HUGE THANK YOU to all who have given so far in our 12 Days of Giving to Lung Cancer Clinical Trials!!

THANK YOU for giving to lung cancer clinical trials!!! You are making a difference for people now and into the future! It takes a team to tackle lung cancer. Thank you #team!

Your gift will help people living with lung cancer experience longer and better survivorship, and it will contribute to the eradication of lung cancer. That means so much. Thank you.

Huge thank you to Team Draft and Chris Draft for your hard work putting on the Super Bowl Challenge, developing leaders and supporting people affected by lung cancer around the world. You make a real difference. Today marks eight years since Keasha Draft’s passing. Chris, you have put in far more work than we realize and you deserve far more appreciation than we show. THANK YOU.

Sunday the 29th is the last day to give to the Super Bowl Challenge, but we will continue to accept donations for clinical trials into January. I’ll be honest with you. I would LOVE to win the Super Bowl Challenge, earn a trip to Florida in the Winter, the experience of a lifetime and opportunity to share lung cancer’s story with that huge platform … but …

What really matters is that we pull together as a team to tackle lung cancer. What matters is that we rally together for better care for people affected by lung cancer. Clinical trials matter because they actually extend lives.

Anyone can get lung cancer. I am frequently contacted by people shocked and saddened by a diagnosis, whether their own or someone they love. Lung cancer affects almost everyone.

Research is changing the story & saving lives, so we need more research! I have a deep passion for driving change in this field and sadness that so far we have raised less than $1000.

It’s not too late to raise more money for lung cancer research!

It takes a #team to tackle lung cancer. Join us!

Would you please consider giving if you haven’t yet? Would you have family or friends who you might ask to give to this important cause? Please invite them. This is a good year end tax deductible investment. It could extend your own life or the life of someone you love.

It’s not too late to give to lung cancer clinical trials. Please give, #team!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #TeamDraft #ChrisDraft #ThankYou #lcsm

5 Gold Rings Pillars of Lung Cancer

12 Days of Giving to Lung Cancer Clinical Trials

What do you think of when you think of lung cancer?

Before I was diagnosed, I did not know much beyond the connection between smoking and lung cancer.

For decades, an enormous anti-smoking, lung cancer prevention campaign has been waged. Huge amounts of energy and funding have been invested, but prevention alone is not enough. In spite of prevention efforts, the Canadian Cancer Society estimates that 29,300 Canadians will be diagnosed with lung cancer in 2019. That’s the size of a town. 

A town-full of people diagnosed with lung cancer each year.

Clearly a prevention campaign is not enough.

Candid conversations which evaluate the past and examine the present shine light on paths into the future.

It’s time for lung cancer to shift to a well-rounded campaign which dedicates appropriate resourcing to five pillars of lung cancer:

Awareness, Early Detection, Treatment, Research and Survivorship.

When we allocate funding appropriately, we will drive change in lung cancer survivorship.

A town full of people each year! Who will get lung cancer next year?

Anyone can get lung cancer.

The research we fund today might extend your life.

#ResearchMatters

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou

3 French Hens: Support Groups

12 Days of Giving to Lung Cancer Clinical Trials

All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!

There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.

Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!

Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!

It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.

We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.

I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.

If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!

Once you have three, there’s no telling what you can do!

To celebrate support groups and survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #ThankYou