Icing on the Cake

You may have heard me say that hope is an act of defiance. You may have heard me mention a conspiracy of hope… I’m happy to report a growing crowd of co-conspirators!

It’s taken me a while to tell this story. That’s because I can’t figure out how to tell it. I can’t do it justice, can’t even come close.

August 1st 2018 was unlike any other August 1st I can remember. It started small and kept on growing.

I spent weeks getting ready for it! I painted “Hope” rocks,

37878023_10156455262974318_4517379153766383616_oand more hope rocks,

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and more hope rocks …

38481222_10156469364944318_3341712253979197440_oI bought chocolates, ordered supplies, connected with a variety of folks, including key people at the Ottawa Hospital Cancer Centre and Lung Cancer Canada …

I organized a lung cancer awareness table staffed by lung cancer patients at the Cancer Centre. It really wasn’t that big a deal! But it was, after all, WORLD Lung Cancer Day!

And it was, to my knowledge, the first time such a thing had ever been done!

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I wanted to make a difference, brighten people’s day at the Cancer Centre, inject a little hope, raise some awareness about lung cancer … hence the hope rocks and chocolates and information. But what ended up happening was so much more!

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(OK, I know it looks like we were blocking the elevator, but that elevator was out of service!)

We enjoyed a beautiful collaboration among a number of different groups and individuals who all want the same thing: to help and support lung cancer patients.

We didn’t count the number of people we had conversations with, but there were many! There were always at least two of us staffing the table, usually three and sometimes more! It seemed there was a constant flow of people who stopped by wanting to talk. I couldn’t estimate the number!

Here’s the thing: I was blown away by the difference we made! I can’t find words to describe the impact that we seemed to have on people. You could see shock and bewilderment on the faces of people when they first stopped by the table … especially when they found out we were there because of lung cancer. Many could not grasp that most of us were actual lung cancer patients / survivors. We looked so healthy …

Lung Cancer is the deadliest of all the cancers. We know that far too well. But that doesn’t mean we can’t enjoy each other’s company! 🙂 We cry together and we laugh together, and on August 1 it was a tremendous privilege to gather with some of my lung cancer sister-friends and bring joy and hope to the cancer centre! I don’t have words to describe how much it meant to me to be bringing hope to the cancer centre together!

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A conspiracy of hope! (In a place that can be so difficult to walk into.)

Here’s an excerpt of a letter I wrote to thank the team:

Thank you so much for your support yesterday! It was such a gift for us to be able to connect with lung cancer patients, other cancer patients, caregivers, staff, volunteers and friends! I loved the looks on faces when they learned we are LC patients/survivors! I’m confident we made a significant difference for many people yesterday.

It was significant for me too! Last year I painted hope rocks and brought them to the cancer centre all by myself. While I am glad I did that, and think it was a good thing to do, this year was so much better because I was doing it with you! Better because it made a bigger impact, and better because I got to do it with you!

I’m honoured to have served the Cancer Centre with you in celebration of World Lung Cancer Day 2018.

With love and appreciation –
Jill

But there’s even more!

Two of my dear (non-lung cancer) friends came and surprised me! They made and brought a huge, lungs-shaped cake to the Cancer Centre for us to share. What unexpected joy! They blessed us so we could in turn bless others even more! No words for how much this means to me! 🙂

A conspiracy of hope surprise party?

Here’s the best part, the icing on the cake: because we’ve got strong co-conspirators and teamwork, we’re going to keep these events going, raising hope and awareness about lung cancer. Monthly awareness tables, in ongoing partnership with Lung Cancer Canada and the Ottawa Hospital Cancer Centre, organized by my dear friend and co-conspirator, who is alive and making a difference thanks (in part) to excellent medical care and lung cancer research!

Hope could benefit from a whole lot more co-conspirators!

World Lung Cancer Day Aug 1 2018 TOHCC LCC Jill Cecilia Peggy Andrea

(Apologies: I don’t know who to credit for all of the photos. Most of them are from Mieke. Thanks again Mieke!)

 

Real Live Superheroes

This morning something pretty awesome happened. I got to enter a room filled with superheroes! These are amazing superheroes who do their superhero work all day long, cleverly disguised as ordinary people.

I was asked to show up at 9:00 am on the first Wednesday in July to meet the person who would escort me to a secret location. Thankfully no blindfold was needed, no large sack thrown over my head.

As we reached our destination, the door opened and I recognized many of the people inside. There were nurses, administrators, researchers … a whole team of people dedicated to cancer research at The Ottawa Hospital!

This was a meeting of The Ottawa Hospital Cancer Centre’s Clinical Trials Superheroes (not their official name!), and I’d been invited to share my story with them!

About a month ago their team leader contacted me. She’d heard me speak at the big fundraising breakfast for the Ottawa Regional Cancer Foundation in May, and she wanted to connect with me.

I was excited to meet her, not only because I was curious to see what she had in mind, but also because I’ve been trying to understand the Lung Cancer landscape in Canada and had loads of questions about research. She answered many of my questions and then set up another meeting so I could learn even more.

As I got to know this inspiring team leader, I quickly realized she is amazing! She wakes up early in the morning to come up with new and better ideas for how she and her team can do their superhero work.

They strike me as a humble group. You won’t typically see them in their superhero costumes. They work hard day in and day out, many of them behind the scenes, caring for cancer patients and helping to develop better treatments for us. And I was given the privilege of telling them my story, how a clinical trial – THEIR CLINICAL TRIAL – saved my life.

A little over three years ago, I had run out of treatment options. I was coughing non-stop, weak, unwell. It looked like cancer was gaining the upper hand. Then the clinical trial. Everything changed. Three years later here I am!

A clinical trial at The Ottawa Hospital changed our family’s story! A new investigational drug extended my life two years: long enough for another drug to be ready when I needed it! In this way, that clinical trial is still at work, continuing to extend my life. Four and a half years after diagnosis, I’m still on treatment, still going strong and still so very thankful!

Of course, many of them already knew my story – at least bits and pieces of it – because many of them have played significant roles in it. In this room were people who filled out paperwork for me to enter the clinical trial, listened to me and listed all my many side effects, and did all the ongoing work (like booking scans and more paperwork) to keep me in the trial. There were nurses who extended kindness as they interacted with me, drew blood and ran tests. I went into the hospital at least twice every three weeks for almost two years, and I received excellent care.

Not only do they provide excellent professional care, but these superheroes actually do care. I’ve seen them go out of their way, above and beyond, to take care of people, and I know that is why they do their job.

These superheroes, cleverly disguised as ordinary members of the cancer centre’s clinical trials team, save people’s lives on a regular basis!

It was such an honour to be in the room with them. I’m grateful for the opportunity to thank them for their hard work and the difference they have made for me and my family. So many memories these past three years, so many milestones our family has been able to share. Because of the grace of God and because of superheroes like this awesome team!

Here is a picture of some of them right after I spoke this morning … and if you look very closely, you might even catch a glimpse of one of their superhero capes!

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# 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!

 

 

 

 

 

 

 

 

 

Good News and Good Gifts

Here’s a bit of good news that made me cheer yesterday morning:

My regular clinical trial protocol has changed! So, instead of going in to the hospital two days in a row every three weeks, I’ll now have all my appointments on the same day – yay! It will be one long day, but only one day and I’m pretty sure it will be less tiring overall!

To celebrate, I slept in this morning! My 8:30 am appointment was cancelled because I did all my tests and meetings yesterday! I feel tired today, but not as tired as I typically do on the second appointment day!

Yesterday at the hospital, I rejoiced again to receive comments about how thick my file is and how many weeks I’ve been on this trial. I’m very thankful that these meds continue to work for me! I’m grateful that I get to keep taking them, and hopeful that the good work they are doing will continue for a very long time!

In other exciting news, my kids have been away at camp (a great opportunity for which we are deeply grateful!), and they’re coming home soon! I wrote a poem this year which I will have posted below. (Sorry about the formatting: not exactly what I wanted, but it’ll do!)

I hope you will enjoy the rest of the Summer (or Winter, for those in the Southern Hemisphere), and give thanks for the gifts of each day! Our doorbell just rang, announcing the good gift of a dear friend visiting and presenting me with a gorgeous shirt she just made for me! I’m feeling rather bowled over by this generous gift! I am grateful for so many gifts, including your ongoing prayers and encouragement! Thank you!

Heart Pressed

They bump out the door,

Duffle bags bulging with sleeping bags and swimsuits,

Enough for fourteen fun packed days

The door bangs behind them,

Its vacuum pulling my heart along with them, 

Pressed up against the glass,

Aching for their presence

Yearning for their laughter

Echoing around these now empty rooms

And they’re off!

Bundled into the car

Bright smiles, cheerful waves and calls of, “I love you!” “xoxoxoxo!”

Last year, she said, she blew me kisses all the way down our street, down the next one and the one after that, and even along the highway …

Our love is a bungie cord

It stretches and stretches and

Will not break

My heart squeezes out through the door and sneaks into the car with them,

Travelling that 400km journey, tucked away like the messages I hide in their bags,

Like my note she keeps safe under her pillow at camp

And I remain, heart pressed against the glass,

Aching for them to deeply know the One who will never leave nor forsake them,

Yearning for them to encounter Him in bigger and truer ways,

Trusting that as they grow, He is always more than enough.

Heart eagerly pressed against the glass,

Excited about the people they will meet, skills they will learn, songs they will sing, stories they will savour, beauty they will behold …

And bundle up to bring back home to me

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A sample of our summer adventures:

(Diefenbunker, Nature Museum, History Museum)

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My firstborn, serving his delicious homemade ice cream!

Marathon Weekend

Like many weekends for most of us, this past weekend was a marathon for our family … but what made it different was that my husband actually ran the marathon, and the kids and I volunteered at it!

Jono has run a few marathons before, but this time he ran to raise funds for the Ottawa Regional Cancer Foundation. Thanks to the generosity of a cheering crowd of supporters, not only did he run a personal best 3:25:29 but he also raised $1725 (so far)! We are happy with his achievements, and so glad that he is recovering well from the run.

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No pressure, but if you want to give, there’s still time: http://ottawacancer.kintera.org/ottawaraceweekend/jono

Speaking of recovery, at the end of each race is the “recovery” area where volunteers give food and drink to the runners. The kids and I volunteered there on Sunday, setting up and handing out yogurt, chocolate milk and bananas. It was a privilege to be part of the team who served 47,000 runners this weekend. So many of the runners expressed gratitude for the volunteers who served in a variety of ways. We were there for about 4 hours, and I am thrilled to report that I was able to complete my shift! I was exhausted afterwards and very stiff, but I also recovered well from my volunteering “marathon”.

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A quick photo with our friend who coordinates volunteers and generously welcomed us to her team. (My daughter was the youngest there.)

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Calm before the storm! It was a privilege to be part of the team who served 47,000 runners this weekend with a smile! Very well organized effort!

The past few months I’ve been deliberately pushing myself harder and harder to try to increase my endurance. Life is a marathon! I’m noticing my stamina has improved and also my ability to bounce back after exerting myself. I’m still not well enough to take on a job, but if this trend continues, I’m very hopeful!

Also on the weekend the kids and I put on a lemonade stand fundraiser for the Cancer Foundation. We surpassed our fundraising goal and raised $225.25! Thank you to all who encouraged our kids and donated!

We’ve been fundraising because I have the energy to, and because we are grateful for the ways the Cancer Foundation has helped our family and many others, through clinical trials, workshops, coaching, classes, etc. I have recommended their cancer coaching to two people this week alone!  The Ottawa Regional Cancer Foundation supports people who have been diagnosed with cancer and their families and friends. For more information: http://www.ottawacancer.ca

Now it’s time for a break from fundraising, time to focus on the next chapter, the next segment of our race. I don’t know what’s next, but I’m looking forward to it!

How’s your marathon going? Is it time to take a break from something? Time to dive into a new challenge? Time to keep on keeping on in some rough terrain? Are you running a good race? Looking forward to what’s coming next? I hope you are, and I hope you are surrounded by teammates who cheer for you and support you!

Thank you for cheering us on in our marathon … we all do better with encouragement and support, don’t we!

 

Fundraiser: an inside look

They say the vast majority of people are so afraid of public speaking that they would rather die than give a speech. I’m certainly not in that category! Yesterday I spoke about clinical trials at the Ottawa Regional Cancer Foundation’s fundraising breakfast, and had a great time doing it!

I was privileged to be able to share my story and to thank some of the people who help make a difference for cancer patients, their families, friends and broader communities through clinical trial funding.

This was an extremely well-organized event, with loads of people working hard both upfront and behind the scenes.

I don’t know the exact numbers, but there were about 50 tables of 8, each with a table host and an “expert” (e.g. oncologist, cancer coach, etc.). Our table expert was a cancer fitness instructor, and I would have loved to have had more time to pick his brain! 🙂

I am very grateful for the many people who invested so much time and energy into making this event a success. There is a great commitment to excellent cancer care in the Ottawa region!

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Even with a crowd of 400 or so, I didn’t really feel nervous. I felt moments of nervousness, but I prayed and breathed and felt peaceful and calm. I felt like I was meant to be there and really excited for the opportunity! I give thanks to the Lord for this good gift of confidence and peace!

Just as the breakfast was about to start, one of the Cancer Foundation people asked me if I’d do an interview for a local radio station right then, so I ducked out and missed the opening few minutes of the breakfast. Again, I felt completely calm and glad to do it! I haven’t heard the story yet – don’t even know if it has aired.

The breakfast was so well organized that I knew well in advance exactly when it would be my turn to speak. They confirmed it with me again before the breakfast yesterday morning, but there was also someone who came to my table at the right time, to get me and practically escort me right onto the stage! No backing out! haha 🙂 Seriously, I felt very well-cared for by the team in the lead-up to the event, during it, and afterwards. Very encouraging!

The mayor served as MC, and did a great job! He helped me to relax in the moments before I spoke, while they showed a video much like the one which had been on the news last month. He quietly asked about my kids, where I live, people we know in common, etc. For a very brief moment I considered mentioning to him that the sidewalks on our street are in terrible shape and could really use his attention (I’ve been emailing our Councillor about that lately!), but instead I chose to focus on why we were there! 😉

My speech was only 5 minutes long. So much more I wish I could have said, but these are busy people who need to get to work. I honoured the 4 – 6 minute range they gave me.

I spoke about the strong community of support we have, and the generosity lavishly poured out on our family. I specifically mentioned the prayers, encouragement and the food!

I mentioned that the Lord has made a huge difference for me. Afterwards a woman I didn’t know approached and kept thanking me for speaking and saying, “Praise God!” I’m assuming she was a Christian: it was encouraging to hear from her and shake her hand!

It was good to connect with people who introduced themselves to me afterwards. It’s a small world, and I spoke with a few folks I knew or who knew who I was. I am so thankful for the two friends who came with me, and the team of dear people who weren’t there, but encouraged me and prayed for me. I carried this support with me, and felt carried by it.

Here’s an excerpt from my speech, the end bit:

Every day is a gift! I don’t know how many more I’ll have, but I want to make the most of each one.

I’m thankful that research continues to develop new and better treatments that I hope will help extend my life for many years. I want to celebrate many more birthdays with family and friends, and I’d love to see my kids grow up and even my grandchildren. Clinical trials are helping me to have hope!

Your generosity in supporting clinical trials is making a significant difference for cancer patients, their family, friends and communities. Thank you for standing with us, as members of our support team.

I dream that one day soon the treatment for cancer will be 3 months of a daily pill, and then you’re done. That’s a dream worth working towards, and we get to play a part in that!  Thank you for the part that you are playing.

(Where do you think I teared up? If you guessed when I mentioned my kids, you’d be right!)

The feedback I heard the most afterwards was that people were inspired, and that I spoke clearly and powerfully …

… but what really excites me is that the Foundation raised over $215,000 at the breakfast yesterday morning! What generosity! I hope it makes an even bigger difference!

I’m thankful that I could play my small part!

I count you all of you, dear readers, as members of our support team, and I thank you!

The Ottawa Regional Cancer Foundation helps fund local clinical trials and offers cancer coaching to anyone who has been affected by cancer, including family members and friends.  http://www.ottawacancer.ca

If you’d like to donate to the Cancer Foundation, consider supporting my husband Jono’s fundraising efforts as he runs the marathon next week-end in support of the Foundation.  http://ottawacancer.kintera.org/ottawaraceweekend/jono   (No pressure!)

Now I’m off to run some errands and enjoy this beautiful Spring day!

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In the News

A few appointments ago, my oncologist asked if I’d be willing to speak at a fundraiser for clinical trials. I agreed to consider it, and a few conversations later this was on the news:

 

I’m grateful to Patricia Boal, Bryan the camera operator, and the CTV news team for doing such a great job telling the story.

The breakfast is next month. I’m feeling a bit nervous, but I said yes for a number of good reasons and I’m glad I’m doing it. I hope my story will encourage and bring hope to others. I also hope it helps raise funds which will make a difference for many.

I dream of the day IV chemotherapy will be obsolete and cancer will be cured by a few weeks of daily pills with insignificant side effects. I hope it happens in my lifetime!