TOHCC

STARS in Spain

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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!


The difference a team can make!

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Before my diagnosis in the Fall of 2013, I didn’t give much thought to the lung cancer team here in Ottawa. Now I am very thankful for them and glad to be getting to know the folks at The Ottawa Hospital Cancer Centre (TOHCC), and others who’ve been working hard for people affected by lung cancer. There are many I’ve never met, and I don’t have enough pictures – couldn’t even find one of my own oncologist – but here are a few:

Above is Evening of Hope, November 24, 2016, organized by the phenomenal Louise and her dedicated team. It is one of the terrific annual lung cancer fundraising events in Ottawa. Top Left is Elizabeth, who blogged at this link, and changed the face of lung cancer. Her mom, Robyn, is pictured several photo’s below, from last month’s 2K.

Beverly (founding Ottawa support group member) with Chris Draft, NFL Legend & Legendary Lung Cancer Advocate, Sept. 2017
Our wonderful social worker, Diane, with some support group founding members (founded October 2017) – Jill, Andrea, Laurie, Peg, Kayla, Evening of Hope, November 2017
What a difference friends & supporters make! This creative friend surprised us with this lungs-shaped cake at the Cancer Centre on World Lung Cancer Day August 2018!
Anna, TOHCC researcher & prize-winning cyclist / fundraiser, with generous friends
Kayla (founding support group member) and Kayla’s Fight Club have done tremendous work
Michelle, a wonderful advocate and fundraiser, at a CCSN event on Parliament Hill in 2018
Dr. Paul Wheatley-Price, TOH oncologist and President of Lung Cancer Canada, ran the marathon as part of the same week-end event as our 2K, for for Canadians affected by lung cancer. Here he is giving a pep talk! We are grateful for the community of support! #RunOttawa2019 #LungCancerStrong #LungCancerTeamCanada
Paul with Robyn, lovely mother of Elizabeth, at our pre-2K rally #RunOttawa2019

Almost a year ago we held our first ever Lung Cancer Hope Table in our Cancer Centre. It was a special event for World Lung Cancer Day, which is August 1. You can read about that day and what led up to it here.

The first Hope Table was supported by many more people than are shown here!

That one Day of Hope made such a difference that we decided to hold them every month. This is what our terrific team has been doing ever since. Every month we co-ordinate with the cancer centre to have a table set out for us. We keep our supply of information from Lung Cancer Canada, the International Association for the Study of Lung Cancer (IASLC), and other organizations conveniently stored in a generous oncologist’s office at the Cancer Centre. Most importantly, every month we show up at the Cancer Centre to show love and share hope.

Some “Co-conspirators of Hope”, Support Group teammates staffing our table, June 2019.

What an honour to be there to brighten a person’s day! Our team makes a difference for lung cancer patients and caregivers, and everyone who stops by. People who work or volunteer at the Cancer Centre need hope and love just as much as the next person, maybe more. I can’t tell you how many people say things like, “This was just what I needed!” But they don’t need words to communicate the difference we make: we can see it clearly on their faces and in their body language. We are doing important work at the Cancer Centre.

Spring 2019 at TOHCC

This is a great way to tell people we have a support group and invite them to join us! We enjoy spending time together!

Ottawa support group, Fall 2018
Some support group members, Spring 2019

Our lung cancer support group has grown closer together because of these outreach tables. Our group has also grown larger! We have met so many wonderful people because we chose to invest a few hours sharing hope and love at the cancer centre. I want to give a big shout out to our support group for the difference we made at our Cancer Centre this year! Thank you for your great work! Thank you Andrea, for your faithful leadership! You kept us organized, and have established and maintained good relationships with people of our cancer centre!

The Cancer Centre has been very supportive. A big shout out to The Ottawa Hospital Cancer Centre! They supply the tables and have even started paying for our parking! They now post information about our group, with dates indicating when our next table will be. We have worked at building relationships at the cancer centre and earned trust. The oncologists have started telling their patients about us. It is encouraging and honouring that they do this, but it’s much bigger than that.

The amazing Jody, TOHCC
Two dedicated members of our TOH Cancer Centre Clinical Trials Team

When we partner together, then we can truly start making a difference for people affected by lung cancer. There is no limit to what we can do when people who work in differing ways in the lung cancer community partner effectively together. When doctors and social workers and caregivers and nurses and survivors and researchers and fundraisers and communicators and advocates … all work together, we can make a world of good for people affected by lung cancer.

One person can make a big difference by sitting at a Hope table, by getting to know people at their cancer centre, by forming relationships and becoming a team together, and who knows what kind of difference that team can make!

Get to know your lung cancer community! Ask questions! Reach out!

#StrongerTogether #BetterTogether #Team