Ottawa Lung Cancer Support Group

What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!

Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong

Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!

Wouldn’t it be good if everyone affected by cancer had a support group to be part of?

#ResearchMatters

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.

2 Turtle Doves

12 Days of Giving to Lung Cancer Clinical Trials

Here’s to all the care givers, whether family or friends, and neighbours and even strangers who reach out with care, knowing that people going through lung cancer, or any tough time, need extra care. It’s not good to be alone. We all need team. Cheers to the people who reach out with kindness, compassion, care, comfort, empathy, gentleness, grace, support, understanding, muffins, meals, encouragement.

We all benefit from from kind words and actions. How much better our world is when people are uplifting, inspiring, cheering, caring and giving.

Reverend Dr. Martin Luther King said, Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.

Cheers to all the people who shine a light. Cheers to everyone who makes this world a better place by walking – even part of the way – through the valley with someone who has received difficult news like a lung cancer diagnosis. Cheers and THANK YOU.

It’s not good to be alone. We are better together, stronger together. #TeamMatters

Cheers to everyone who makes a difference through caring!

To celebrate care givers 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 #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!


#Shift

This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

Ottawa to Atlanta

I can’t tell you how excited I am to be heading from Ottawa to Atlanta on Friday for the American Association for Cancer Research Annual Meeting. This is a huge conference, with 20,000-30,000 of the top cancer researchers in the world, plus many clinicians and so many others … including me! I’m participating in their “Scientist <–> Survivor Program”, which groups cancer survivor advocates with mentors, both in advocacy and also science. That’s right: we get connected with an expert in cancer advocacy, and also a scientist mentor to help us make the most of this amazing conference! There are so many sessions, but no one can go to them all. I’ve been trying to plan which to attend, and I’m facing scheduling conflicts. So many great options!

I’m thankful they have a conference app to help us figure it all out, because this event is packed with possibilities! If you are curious about what’s happening and who will be presenting, you can browse the sessions and check out abstracts from the comfort of your own home. Here’s a link to investigate the sessions and presentations. Here’s the link to my abstract. And this is the link to donate to the great work that the AACR does, through supporting my 5K walk on Saturday morning.

The app also has maps to help us find places. No getting lost at AACR Annual Meeting 2019! It will even show the path to walk from where one is to where a particular session is taking place. (In case you were wondering, it would take about 15 days to walk from where I am now to the Georgia World Congress Center, home to this preeminent cancer research showcase. I’ll stick to my plan to fly!)

Yes, I am quite excited about this privilege to participate in the AACR Scientist <–> Survivor Program. I feel very honoured that I get to be at the Annual Meeting, and I know I’m representing Canada as well as lung cancer patients, survivors and advocates. I will endeavour to make the most of this opportunity, and I expect I will spend time with exceptional people and learn a lot while I’m there.

I wish I could take all of you with me! Since we can’t all go, I’m going to try to do the next best thing. Here is one of the ways I’m going to step out of my comfort zone while I’m in Atlanta: I’m planning to post videos on YouTube of my time there.

Here’s a link to my first one! I hope you’ll follow my adventure in Atlanta on YouTube!

Choose HOPE! Inspire courage. Incite hope. Foment communities of hope.

#AACR19 #AACRSSP19

Not even a migraine…

No, not even a migraine could stop me, last December, from submitting my application to the American Association for Cancer Research (AACR) Annual Meeting Scientist – Survivor Program, which takes place March 30 – April 3, 2019, in Atlanta Georgia! #AACR19 #AACRSSP19

This program intentionally connects scientists with cancer survivors during this big, exciting international cancer research meeting. It may be difficult for some of you to understand why I would be so terribly keen to go, but trust me! I really, really wanted to go and be part of this amazing opportunity to connect with people, learn things and tell my community about them!

The AACR’s website says their Annual Meeting’s program, “covers the latest discoveries across the spectrum of cancer research … and highlights the work of the best minds in research and medicine from institutions all over the world.”

I’d been trying to work on my application, as the days raced towards the December deadline. Busy days, Lung Cancer Awareness Month activities, end-of-year extra’s, concerts, wrapping up details from the November “Living with Lung Cancer: Ottawa’s 1st Patient-Driven Mini Summit”, kids’ activities, special Christmas events, family travel, etc.

Suddenly I was down to the wire with thoughts swirling in my head, so fast I couldn’t write them down. I had answered most of the questions, only a couple left plus the BIG ONE: an abstract for a scientific type of poster that I would actually make and present if I was accepted into the program. (No pressure!)

What made it worse was that my hands weren’t working well. Nerve pain is a side effect of the new drug I’m on. Writing or typing can be very painful.

A dear friend helped by sitting at a coffee shop with me the evening of the deadline, jotting down my words on paper, helping me to compile my myriad of lung cancer ideas and thoughts into one clear concise “sort-of-scientific-sounding” abstract. When it was time to go home I still didn’t have it, and my headache was growing worse. I started to feel terribly sick …

I’m not going to tell you how physically awful I felt that night as I struggled at the computer to get the words together and inputted to the computer so I could submit my application. But I did it!

And here it is, all official, at this link, or you can read it below.

I am so happy to say that I am incredibly honoured to have been accepted into the program! A lot of people didn’t make it. Only 40 of us did.

As I go to this amazing conference, I’m representing those who weren’t accepted and those who didn’t apply. That’s a big responsibility, and I intend to share the things I will learn with as many people as I can.

You’ll be hearing more in days to come, but for now, I’ve got to go work on that poster! 😀

ADV06 / 6 – Informed, inspired, empowered: The new era of lung cancer patients/survivors in Ottawa, Canada

 March 31, 2019, 1:00 PM – 5:00 PM Section 29

Presenter/Authors

Jill Hamer-Wilson. Independent Advocate, Ottawa, ON, Canada

Abstract

This poster will discuss many aspects of Living with Lung Cancer. Jill Hamer Wilson’s mission is to raise up a team of lung cancer advocates whose voice cannot be denied and who will influence for change. Caring until there is a Cure through more research will equal more survivors. Initiatives include monthly support meetings for lung cancer patients, regular online support and communication, monthly outreach tables in the cancer centres, annual lung cancer patient summits, regular encouragement, inspiration and spreading of hope which goes beyond ourselves, beyond lung cancer, which breaks down walls that divide us. Constituencies include local lung cancer patients, and focus locally, but also reach to all affected by any kind of cancer, anywhere in the world. Ottawa’s 1st Patient-Driven Mini Summit took place on November 27, 2018. It provided a terrific stimulus to provoke discussion and networking with peers and leaders of interest. The psoter will also explore the experiences of lung cancer patients at the Ottawa Hospita; the journey from scarcity to abundance and the under resourcing to forming a community of hope and providing of resources for others. Examples of collaboration, such as speaking on panels about bench to bedside research and care, clinical trials, and fundraisers will be outlined along with learning and growth opportunities for lung cancer patients/advocates.

AACR Annual Meeting 
Home Page

Super Fun!

Well, that was the most excitement I’ve had in a long time! I can’t believe I almost won (i.e. almost came top three) the Super Bowl Challenge! Thanks to you, for a while there I was even in SECOND PLACE!!!! I’m getting excited again, just thinking about it!

Thank you for your tremendous support, encouragement, and generous donations! Together we raised a lot of money for lung cancer research and lung cancer survivor support. Together we raised a lot of excitement and encouragement for this lung cancer survivor too! Thank you!

One of the ways you increased my joy was by inviting your friends and family to participate as well. You told people my story, you widened the circle, you grew the team, and that was terrific! It takes a real team effort to compete in the Super Bowl Challenge! Thank you to all of you who are Team Jill, all year long. I can’t thank you enough!

Screen shot taken from https://www.crowdrise.com/o/en/campaign/2019superbowlchallenge

These top three will do a fantastic job representing all of us lung cancer survivors: Patty at Super Bowl 53 in Atlanta GA, Jeff & Rhonda at 2019 NFL Pro Bowl in Orlando, FL, and Gina at Taste of the NFL in Atlanta GA. They will have opportunities to share their stories with key influencers, and they will have a LOT of fun!

Grand total raised so far is: $32,594 USD, and Patty is holding another big event on January 19th. This is something to celebrate! I’m still hoping to make it to Atlanta, maybe even before Summer – watch this space!

Lung Cancer Advocate (and former NFL player) Chris Draft visiting our family

Chris Draft works with tremendous energy and tenacity to encourage and support the lung cancer community. Team Draft is Changing the Face of Lung Cancer, focusing on Awareness, Early Detection, Treatment, Research and Survivorship. Chris genuinely cares about people, thinks strategically and acts to make a significant difference. Plus, he knows football and enjoys taking people affected by lung cancer out to games, Survivor at Every Stadium.

www.TeamDraft.org – that’s Chris at the upper right

Thank you!! I had a lot of fun participating in the Super Bowl Challenge this year! That was one exciting ride! Thank you for your generosity.

The Inappropriate Ask

Celebrating 5 years since my lung cancer diagnosis

Truth is, no one really knows how hard it’s been, these last five years. I don’t like to talk about the hard times. That’s part of my coping strategy. I focus on what’s good, what’s beautiful, what’s true.

When I was first diagnosed, I woke up several times in the night. Chemotherapy or cancer side effects, and perhaps the stress of it all. I would look out the window and note the position of the moon and stars in the sky. Knowing they were still there, still moving as they had been prior to diagnosis, somehow helped, and I would go back to bed, back to sleep.

My faith in God has made a huge difference. I am grateful for the love God has shown me, and given me for other people. Any good you see in me is due to the difference Jesus makes in my life. I don’t talk about my faith much publicly, but I’m always happy to. Ask me about Jesus anytime!

It took a whole huge group of people to help keep me alive five years past diagnosis. I don’t know who they all are: researchers, doctors, scientists, statisticians, fundraisers, donors, nurses, administrators, number crunchers, cleaners, clerks, managers … I don’t even know all the categories of people to list, but I wish I could thank every one of them.

Getting me to five years has definitely been a group effort! During the hard times, even the smallest kindness or encouragement can make a big difference. Even a kind word or a greeting called out across the street! Many of you may not know what a significant difference you’ve made for me. Thank you.

While I was writing my blog yesterday evening, a group of amazing friends came carolling and gift-bearing to our door, in honour of my five year “cancer-versary”. This five year journey has been one of unexpected kindnesses, unexpected grace. I could never write them all down.

So many of you have made a difference for me, for my family these past five years. I am hurting my brain trying to come up with a framework which would help me to include and express all the many kindnesses we have received, tremendously moving and generous gifts which have helped us make it through the terribly difficult times over the past five years.

I simply can’t do it. I can’t list all the people. I can’t even categorize the types of gifts you’ve given us. Not even with the broadest of brush strokes or the vaguest of generalities. There is no way this human can find to thank all you wonderful people in one single blog post. 

I can say that each of you, even with the smallest of kindnesses, each of you who have helped us travel through this valley, have made a significant difference. You, perhaps, may have no idea. Thank you.

Thank you for showing love to this person affected by lung cancer. Thank you for showing love and kindness to my husband and children, also affected by lung cancer.

Not everyone has people like you.

Thank you for making a difference in our lives.

Lung cancer friends at Evening of Hope Lung Cancer Fundraising Gala November 2018

Could I ask just one more thing?

Help me win the Super Bowl Challenge! Whoever raises the most money for lung cancer research gets to go, and it’s not just about watching the game. If I win, I will tell my story to influential people who are in a position to help make a difference for people affected by lung cancer. Plus watch the Super Bowl … in Atlanta … in the Winter!

I would LOVE to win! Please help me!

Please click this link and help me win


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

… Was that inappropriate?

Here are just a few special moments of lung cancer work over the past couple of years…

Please click this link and help me win!


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

(Was that inappropriate?)  Thank you!