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.

#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

# Hope Unites

A whirlwind trip and a great opportunity to meet patients, caregivers, advocates, donors, doctors, and many others at Lung Cancer Canada’s Toronto events last month! I’m so grateful that I was able to participate in their fundraiser and first ever Canadian Lung Cancer Patient Summit. I’m very impressed with the good work that Lung Cancer Canada is doing!

The “Evening of Hope”, the Thursday evening fundraiser, was a fun night where I met a variety of interesting people. Woven through the laughter and tears was much hope and joy, and deep appreciation for the people and work of Lung Cancer Canada. I felt very blessed!

If you look below, you’ll get an idea of what kind of day the Patient Summit was on Friday. It was, in its own very small kind of way, a marathon of hope! So many excellent presentations about innovative and exciting advances in the treatment of lung cancer! A lot of good info about how to access and pay for new treatments too!

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During lunch, we were honoured to hear from Darrell Fox, Terry Fox’s younger brother. The Terry Fox Foundation has raised over $700 million for cancer research worldwide! We are so grateful for Terry Fox, his family and legacy! What a treat to hear Darrell speak – humbly and powerfully – and then talk more with him later in the afternoon. I am grateful for his encouragement!

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There was a beautiful atmosphere of encouragement and sharing at the event, and I appreciated the opportunities to listen to and learn from a variety of people. Many patients have to travel for treatment, and that can be very costly. I heard one oncologist offer a spare room to a patient. Such kindness!

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I got to meet Chris Draft, a former NFL linebacker who founded the Chris Draft Family Foundation and serves as a huge advocate on our behalf. You can watch a video he made by clicking: Team Draft – What is the Biggest Cancer Killer? (Spoiler alert: the answer is Lung Cancer) What an encouraging and inspiring person!

 

Probably my highlight of the two days was to meet this group of special women, listen to their stories, and receive their support and encouragement.

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These lung cancer patients / caregivers travelled from the West Coast, the East Coast, and places in between to gather at the Patient Summit. What a gift to connect! Lung cancer isolates. # Hope Unites!

And there is reason for hope!

But there are also a lot of grim statistics. Lung Cancer Canada recently released their 2016 Report, which you can read here: Faces of Lung Cancer Report 2016, if you’re feeling brave.img_7968

There’s a picture of me & my kids in the report.

Last month was Lung Cancer Awareness Month, and I learned a bit about advocacy and Twitter through trying to tweet some Lung Cancer facts. I’m @JillHW on Twitter, and you are welcome to follow, though I can’t promise how much I’ll be there in the coming months!

Lung Cancer causes 27% of cancer deaths, yet receives only 1% of personal donations.  

I’ve entered Team Draft’s Superbowl Challenge fundraiser, and I would be honoured if you’d consider supporting us by clicking on Hamer-Wilson Hope Team.

I came home from Toronto exhausted and energized! I came home inspired to serve as an advocate for Lung Cancer Patients and our families. I hope I will get many opportunities for many, many years!

Hope is powerful!