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!


#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.

#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

This is Hope!

LUNGevity’s summits have made a huge difference for me. I’ve deeply connected with my lung cancer family, my silver linings. I’ve learned about new research, and my hope has grown tremendously.

Being at this conference has been incredibly inspiring, and I would love to go again this year. I want to be there to represent Canada, and be a supportive presence for all who are there. I also want to get a booster shot of hope and bring back news of exciting research and great stories to share with Canadians (and others) affected by lung cancer. I know I’d come back a better advocate.

If I can raise $1500 or more in donations, LUNGevity will cover my travel expenses, including airfare and hotel accommodations.

Many of you were so generous for the Super Bowl Challenge, and I’m thankful! I wouldn’t want anyone to feel pressure, but if you’re able to help me get to this year’s summit, I’d be grateful.

Here’s the link:Jill’s LUNGevity Summit Fundraising Page

Deadline is March 15!

LUNGevity earned a 4-star rating (the highest rating) from Charity Navigator again this year. You can read more about that here.

Two of my Ottawa lung cancer sisters are coming to the summit this year, maybe more! Others are coming from elsewhere in Canada. It would be strategic, and so good to spend time with them!

LUNGevity’s summits have been getting growing numbers of people affected by lung cancer from around the world, so this year it’s “The International Lung Cancer Survivorship Conference”. I’m going to represent Canada and I look forward to spending time there with some of the Canadian lung cancer advocates that I try to encourage regularly.

Click here for Jill’s LUNGevity Summit Fundraising Page

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

The difference lung cancer research makes

Right in this moment, today friends, I have to tell you that I am overflowing with joy and a sense of wonder and well-being. Maybe that sounds a little crazy to you because of the lung cancer, but it’s true.

I am grateful beyond words for so much good in my life. The best is that I am loved, by God, by so many people, including my sweet daughter who makes me little “I love you” notes all the time. She is filled with love and joy, and I cherish her. I am so thankful to be here with her and with you all.

We were made to love and be loved. Love gives us a reason to live. I’m thankful to be alive so I can love, be loved, and make a difference for others.

And I am alive, more than five years after my diagnosis, I am alive! In fact, I feel better than I did a year ago. I keep feeling better and better. I can breathe well, most of the time. I can move my body in ways I haven’t since this whole thing began. Cancer, chemo and meds weakened me, zapped my energy, and made my body stiff and sore. But I’m regaining muscle strength and flexibility, which is such a good gift. For the past five years, I’ve pushed through the pain, telling myself, “Use it or lose it!” I know what it means to push through pain, being a former national athlete and a mom who delivered two of my babies without pain relief. (Did I mention the second one weighed almost 11 pounds?)

I’m feeling better, more able to move, in much less pain, with much more energy, and I am rejoicing! What a difference lung cancer research makes!

This new lung cancer med is doing more than keeping me alive. It’s helping me to live! I give thanks for lung cancer research! Let’s have more of it!