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!


Grateful for Team

It takes a whole village! I’m grateful for the village that my daughter gets to be part of at camp. Leaders, campers, and so many behind-the-scenes-folks who have worked hard, given sacrificially, and made a tremendous difference for many people over 90 years. What a tremendous village!

It took a (much smaller) village to get my daughter to camp this year! My husband couldn’t, and I don’t have a lot of driving stamina. (It’s a five hour trip each way.) Thank you to friends who worked hard looking for a ride for her. The best choice was for generous friends to watch our dog, and another generous friend to come along and share the driving with me. So grateful for our generous team, and the strong support of our village!

What an amazing day! The dog-sitter (and family) was very happy spending time with our dog, and has offered to walk him while my daughter is away. I really enjoyed my day! Of course it was sad saying goodbye to my daughter, but I kept reminding myself about what a great time she’s having at camp. I did not feel tired out from the trip, in fact this morning my legs are full of energy and raring to go for a bike ride!

I’m very grateful for our dear friend Chris, who drove part of the way there and most of the way back. Our day was filled with great conversation, lots of laughter, a picnic lunch & wade at the Port Sydney beach, Kawartha dairy ice cream (thank you, Chris!), singing along to a great selection of tunes which Chris brought, and scenic Ontario views, some of which I share with you below…

Port Sydney Beach:

Algonquin Park:

Scenes From a Car, Ontario (taken en route from the passenger seat)

The difference a team can make!

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

#LungCancerStrong

So many great stories to tell, pictures to share, and blog posts yet to write! I’m feeling fantastic on my current med. I’m enjoying riding my bike. I’ve travelled three of the past five week-ends (all lung cancer related). I have loads of energy and I’m so very grateful.

#ResearchMatters #Hope #Grateful

On Saturday May 25, a fantastic group of lung cancer survivors, patients and friends are walking the 2K. It’s Ottawa Race Week-end, and we are joining in the celebration! “Lung Cancer Team Canada” is walking on behalf of all Canadians affected by lung cancer. We know that not everyone can walk, and we are walking to celebrate the fact that we can and to represent all who can’t.

If you can, we’d love for you join us! If you want to donate, we welcome that too. We are raising funds for Lung Cancer Canada, Canada’s only charitable organization devoted solely to Lung Cancer.

What I want most is for you to know that more research means more survivors and better survivorship! Please join in and celebrate the difference that lung cancer research makes. Cheer loudly for us, because we are lung cancer survivors, and we are strong!

We are also very grateful for our caring and hard-working #lungcancer team at The Ottawa Hospital. Dr. Paul Wheatley-Price, one of our terrific lung oncologists, is running the marathon for all Canadians affected by lung cancer on Sunday morning. Please join our group of lung cancer patients and survivors in watching for him and cheering loudly for him!!

Dr. Paul Wheatley-Price is pictured here with a select group of powerful, brilliant and beautiful advocates at a 2018 event on Parliament Hill.

On May 25, “Lung Cancer Team Canada” is walking 2K for all Canadians affected by lung cancer. We are #LungCancerStrong and we hope you will join us! Please walk with us, donate, and cheer for us! We welcome your support!!

Join us or donate by clicking here at this link!

We’re getting tee shirts! If you want one, please let me know straight away! They are purple with a green butterfly and white ribbon, and they say #LungCancerStrong in bold white letters.

Celebrating Life!

What a lovely Easter! If you follow me on facebook, you may have seen that I had beautiful times with church family and good friends on Sunday. Today I enjoyed a fun walk with my daughter in the morning, then my middle son tuned up my bike and we went cycling together – not super fast nor far, but I enjoyed the wind in my hair and the sun on my face. We went about 7km, which is a little over 4 miles, and it felt good to be out, moving this body and spending time with my son! This evening I let my oldest help with the taxes! 🙂

It was really good to celebrate the resurrection by being with people who I love and who love me, and being active in the beautiful spring weather! So much to be thankful for! So much joy! I can’t tell you how thankful we are for these meds which are holding back the cancer. We hope they will work for a long time!

#MoreResearchMoreSurvivors #ChooseHOPE

Reflection for the journey

Our church publishes daily reflections written by members of our congregation each day of Lent. This year I was given the honour of writing the Easter Sunday one, which I share with you below. We are resurrection people with much reason to rejoice and celebrate! I hope you are experiencing deep joy today and every day.

Easter Sunday, the Resurrection of the Lord   Jill Hamer-Wilson

Isaiah 65:17–25; Psalm 118:1–2, 14–24; 1 Corinthians 15:19–26; John 20:1–18

I faced a terrible diagnosis in 2013. Lung cancer research means better treatments, and I grow healthier with each one. By the grace of God I am alive and thankful, and doing what I can to improve outcomes for people affected by lung cancer. I love people affected by lung cancer. If you know someone affected by lung cancer, please connect with me.

Isaiah paints a beautiful promise. God is creating new heavens and new earth, where there will be no more weeping. One who dies at 100 will be considered a youth! Everyone will live in houses and eat the fruit from their vineyards: no one, nothing will prevent God’s people from enjoying the work of our hands. God loves us and is making good for us.

Do you ever wonder if God hears you when you pray? Do you wonder if he hears when you cry out in the night? God says of his beloved children, before they call I will answer, while they are yet speaking I will hear.

Do you hear that? God is always listening, always ready and willing to answer when we pray. Listen to God, have faith, choose hope!

Hear the Psalmist speak praise and lift your voice to join in.

The LORD is my strength and my might; he has become my salvation. / I shall not die, but I shall live, and recount the deeds of the LORD. /This is the gate of the LORD; the righteous shall enter through it.

There is hope beyond this life. The last enemy to be destroyed is death. Through Jesus, the dead experience resurrection. Hope against hope, Mary saw the risen Jesus and was honoured to share the good news. 

We can see God’s good work every day. Lord, open our eyes to see, our ears to hear, our heart to receive your love and to love

They are beautiful and delicious! If you want one, you’d better pop in for a visit soon!

#ResearchMatters

Five years ago I was feeble and fragile, just finished my fifth round of chemotherapy, having coughed for months before diagnosis, still coughing because although chemo helped, it didn’t really help that much. Facebook just reminded me of that time with a photo of some of the many gorgeous flowers that beautiful people sent to us to encourage us, because we all need encouragement, especially when we are travelling rough places in our road.

I could hardly talk, couldn’t do much more than lie on the couch looking at beautiful flowers. I pushed myself hard, not wanting to give up one millimetre to lung cancer, but even so, those were difficult days. Some of my friends are going through hard times like this now. Those were hard days, because no matter how tough I was or how hard I pushed, lung cancer kept pushing harder, and chemo sure wasn’t doing the job.

Thankfully lung cancer research made a difference for me. I’ve been on a series of targeted therapy drugs for almost five years now, and they have been -not without side effects- better than chemotherapy.

I’m alive and well, and now I’m still fighting! I’m not fighting for my life at the moment, but I’m fighting for others, including those who have not yet been diagnosed.

I’m thankful that I’m not fighting alone. Here are a few of my terrific teammates gathered in Atlanta for the AACR Annual Conference:

Lung cancer research has been neglected, and I can’t understand why. New treatments are game changers, so let’s keep going and make a great life and death difference for more people! Let’s find new targeted therapies to work for more of the lung cancer patients. Let’s turn more patients into survivors!

Lung Cancer needs a little more love, and a lot more research money. More research money means more survivors. Look at me! I’m alive and I’m living life! I’m celebrating life every day because every day is a gift to be celebrated!

A bunch of us -lung cancer patients and others- are walking the Ottawa Race Week-end 2K this May 25. Come join us! We’re going to have a great time! We’re getting tee shirts! We’re just getting started! Stay tuned for more details, and sign up to join our team please! We are “Lung Cancer Team Canada”, and we’re raising $$ for Lung Cancer Canada. Here’s the link.

People matter. People with lung cancer matter. Lung Cancer #ResearchMatters . Tell everybody!

#ChooseHope