Research and Hope

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.

6 Geese a-laying – Research

12 Days of Giving to Lung Cancer Clinical Trials

What is the connection between geese and lung cancer research? Why did “research” immediately spring to mind for the Sixth Day of Giving to Lung Cancer Clinical Trials?

The connection is the goose that laid the golden eggs. That is research. It may not feel like it to some researchers working away in their lab, but it is true!

This is a fabulously exciting time in lung cancer research! New treatments are being approved and people are living longer and better. We are expanding the horizon of the possible.

LUNGevity put out a compelling video last month with stories from people directly affected by lung cancer clinical trials. The link is below. Please take three minutes to watch it. “In the last three years, the FDA has approved more lung cancer treatments than in the last three decades, thanks to clinical trial patients.” The survivor stories are gripping.

I’ve been to just a few of the many conferences where lung cancer research has been presented this year, and it is phenomenal! There is no rush quite like the realization that thousands of brilliant and dedicated people are working hard all over the world to find cures for people affected by cancer.

We are seeing success! The research is working! New treatments for lung cancer are being approved at record rate! People are living longer and better.

We’re not there yet.

Research keeps laying golden eggs. Let’s be generous in our support.

Research works. Research matters. People matter. We need more research.

If you were thinking about giving me a Christmas present this year, or making a tax-deductible end of year donation, please give to lung cancer research here. Thank you.

#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 

Click here to see the video It will open up to another page where you can click on the big picture to watch it. You can also see individual stories if you click on the smaller pictures below. It was an honour to be part of this project, because clinical trials matter. Thank you, Linda, Jack, LUNGevity and the whole team. You did a great job!

This image has an empty alt attribute; its file name is screen-shot-2019-11-30-at-4.21.51-pm.png
Click here to see the video

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

STARS in Spain

The International Association for the Study of Lung Cancer (IASLC) has a new program for training patient research advocates, called STARS. The six-month training process began back in May when five Patient Research Advocates were chosen from around the world. It continues with webinars, calls and mentoring, culminates with the IASLC World Conference on Lung Cancer next week, and concludes with presentations in October.

The IASLC Supportive Training for Advocates on Research & Science (STARS) program aims to increase the number of Patient Research Advocates (PRAs) equipped to provide accurate scientific translation in their online or real-life lung cancer patient/caregiver groups and to provide the patient perspective for lung cancer research and policy.

More here.

I am very happy to report that Canada was chosen for one of the STARS positions. Our very own Kim MacIntosh, who lives in Cornwall Ontario and is part of our Ottawa Lung Cancer Support Group, is one of only five STARS worldwide! She has been learning more about lung cancer research and advocacy through webinars and conversations. Each one of the STARS is paired with a mentor for six months, and I’m delighted to be a mentor for Kim. We are both treated at The Ottawa Hospital.

Kim (with Chris Draft and me) at our #LungCancerStrong event in May 2019. Kim was a valuable planning team member who got the tee shirts printed and organized.

The IASLC World Conference on Lung Cancer (#WCLC19) is the world’s largest international gathering of clinicians, researchers and scientists in the field of lung cancer and thoracic oncology. This year it takes place September 7-10 in Barcelona. Kim and I will be there, representing Canada, along with Christine Wu who earned one of only five IASLC patient advocacy travel awards for her hard work in lung cancer advocacy. Among other achievements, Christine helped start the Winnipeg support group. I look forward to connecting with people, examining best practices and exploring partnerships that will best serve the Canadian community.

We know that representing Canada at #WCLC19 is a privilege and responsibility. We welcome questions, and will do our best to track down experts there to answer them. We will be sharing information about new lung cancer research with other lung cancer advocates who are leaders in their communities, and posting on YouTube, facebook, Twitter and Instagram. Please follow us and share the news about lung cancer research. It’s up to all of us to share about the exciting advances which are changing outcomes and extending lives.

Christine (above) and some Canadian survivor advocates & friends who have been to LUNGevity’s Hope Summit, Washington DC, 2019 and 2018 (below right)

I owe a debt of gratitude to many people and partners who helped prepare me for this mentoring role in the STARS program. I am especially grateful for the American Association for Cancer Research Scientist <–> Survivor Program, which I participated in last Spring at the Annual Meeting in Atlanta, #AACRSSP19. There cancer advocates were engaged, equipped, and honoured for their work. I am also very grateful for the ways I am learning through serving as Lung Site Patient Representative for the Canadian Cancer Trials Group, and the mentoring of International Lung Cancer Advocate Chris Draft.

Are you going to #WCLC19? Is your doctor? If you or anyone else you know is going, please be in touch and encourage her/him to connect with me. I’m looking forward to meeting more members of our lung cancer community!

What is happening at your local cancer centre for Lung Cancer Awareness Month (#LCAM)? At The Ottawa Hospital Cancer Centre, our team of survivors plus Ottawa Hospital people have already started planning our second annual survivor-driven Lung Cancer Summit, geared to the Ottawa community. This is a great opportunity to share exciting new research from the World Conference for Lung Cancer out into the community.

Dr. Paul Wheatley-Price is a stellar Ottawa Hospital oncologist, and President of Lung Cancer Canada. Andrea Redway (in the background with the white hat), is a great friend and Survivor Advocate. I am grateful for such dedicated teammates.

Cancer Centres plus advocates are a great combination! If we don’t tell people about exciting advances in lung cancer research, who will? It’s up to us to spread the news about the difference lung cancer research is making for survivors! #ResearchMatters #ResearchWorks

Please let me know what is happening in your community.

Jody of The Ottawa Hospital is awesome! She works hard to make her administrative endeavours appear effortless. She is a great support and encourager!