Disappointing News

One advantage of needing help getting into the cancer centre is being allowed to bring a friend into my appointment with the oncologist. I’m very grateful that I could bring dear friend and awesome lung cancer survivor advocate, Andrea Redway, into the little room to talk with the oncologist about test results. It means a lot to have her ears and wisdom, and know that she will feel free to speak up with questions and ideas. (Of course I ran it by the oncologist beforehand.)

Part of the disappointing news is that there is no news from the blood biopsy that was sent to Canexia lab in Vancouver BC. Just because they didn’t spot any cancer info doesn’t mean there is none present, similar to the way we don’t find a chunk of chicken in every spoonful of a bowl of chicken soup.

My awesome oncologist looked back over several ct scans, comparing multiple scans rather than merely the most recent to the one previous scan. When he put five scans in a row, it became clear that it looks like slowly progressing cancer growing. Disappointing news.

We control what we can control.

There are several potential options to consider choosing. I would love to participate in a clinical trial, but unfortunately the cancer is growing in a way (without “measurable disease”) that does not meet criteria for the trials that we’ve looked into so far. Currently I don’t qualify for any trials that we’ve found. I’m very grateful for the team who have influenced our thinking, including patients, survivors, caregivers, doctors and researchers, very thankful for those who have offered input to guide our choices. My oncologist and I have been communicating with each other, and including the thoughts of other experts.

A big shoutout to Colin Barton and the ALK+ Research Acceleration Committee who are made up of patients, survivors and caregivers. They not only stay on top of cutting edge research related to the type of lung cancer we’re affected by (ALK+), but also drive research. They are a brilliant bunch who also care.

Another big shoutout to our Canadian team of doctors and researchers. Through years of advocacy it has been a privilege to get to know and partner with many top lung cancer researchers, surgeons and oncologists from across the country, as well as around the world.

My oncologist reached out to several people including Dr. Alice Shaw, MD, PhD, also known as the Queen of ALK. Dr. Alice Shaw remembers me as the Canadian advocate who chased her from the escalator and interviewed her for this YouTube video at the American Association for Cancer Research Annual Meeting in Atlanta, 2019. #AACR19

Dr. Ross Camidge spoke to the importance of testing to find the most appropriate treatment. Here he is at an event in April 2019 at The Ottawa Hospital where Dr. Paul Wheatley-Price obtained permission for me to invite people to be part of a special presentation to patients. Dr. Camidge also fielded questions from people across the country who were able to participate remotely. Dr. Christine Lovly is another top ALK doctor/researcher who genuinely cares about people and remembers us. They are part of our lung cancer team, and they are terrific teammates! So very thankful! (I also included a few photo’s below from our ALK+ family summit in Atlanta in August 2019. Such a great gift to be with these amazing people.)

But back to the news… my oncologist has asked a thoracic surgeon at The Ottawa Hospital about doing a procedure to get a biopsy to test. I’m waiting to hear back. Waiting is hard, but we can only control what we can control.

In the meantime, we continue the same course of treatment which is holding back much of the cancer, and we also take symptom management steps ahead. This seems to be a slowly progressing cancer, and being slow is a mercy which we’ll take.

The pain and symptom management clinic at The Ottawa Hospital gave an appointment next week. Research shows that people whose symptoms are well-managed tend to live not only better, but also longer. I’ll take it!

Yesterday morning I presented a White Ribbon to my awesome respirologist, Alyson, who came by to replace the oxygen machine which had started beeping. She has listened to a lot of advocacy talk about lung cancer, is very informed and empathetic. She goes above and beyond. Very thankful for her.

#hope

This just in! A call from the doctor’s office for a phone call appointment to discuss the potential procedure on Friday afternoon, April 29. (I asked and they don’t have a cancellation list.)

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 Matters

On Monday March 14, The Ottawa Hospital Cancer Centre lab drew blood to be analyzed by Canexia in Vancouver, British Columbia, to test to see if there is a treatable kind of cancer attacking me. We’re still waiting for results and holding onto hope.

Biomarker testing matters.

If the testing comes back with information about a treatable cancer, then taking daily pills could potentially turn my health around. Many lung cancer patients go from extremely poor health to feeling quite well in only a matter of days, once they start taking the right treatment (targeted therapy pills). This is what we are hoping for me. New research, as you probably know, is a game-changer for many people affected by cancer. We are hopeful that there will be some effective new research that will make a difference for me.

It’s possible that I may have to travel to get access to the pills through a clinical trial. We won’t know until we get information from the test. As many of you know, there can be challenges for people affected by lung cancer to get access to the life-extending treatments they need. Advocates fight for drug approvals and funding, for better access to clinical trials and for clinical trials to be offered in more geographical locations. Access matters.

Research matters – it matters for testing, for treatment options and for access to those treatments. Research matters, to me and to so many others, for people with lung cancer and so many other kinds of cancer. Advocacy matters! Research matters!

Advocacy in my DNA

When I was a little girl, my Mom was a neighbourhood activist. She connected with people from all over our neighbourhood and worked to change traffic patterns. My mom worked with a team who mobilized the community with teams and block captains. They fought City Hall and won! Our neighbourhood streets were slated to become arterial thoroughfares, but because people took action, our neighbourhood is now one of the most desirable and most walkable areas in the city.

It seems advocacy is in my DNA!

Advocacy brings me joy. I love connecting with people and doing meaningful work. Advocacy can include amazing things like working with teams of people to decide which international research proposals gets funded (prepping for this tomorrow), or giving input into Canada’s cancer research priorities for the next five years (online meeting tomorrow). It’s important that people affected by lung cancer are represented in these kinds of conversations.

I’m keeping quite busy with my regular lung cancer advocacy work. I have a number of regular meetings and ongoing projects, and there are also frequent additional opportunities to learn, connect, and/or serve in some way.

On Saturday, for example, I worked with someone from an organization I’m connected with to shoot a brief video via zoom for an upcoming conference, participated in a great zoom team meeting for The White Ribbon Project, and had a prep meeting via zoom for a speaking engagement that I was invited to do through my volunteer work with the Canadian Cancer Trials Group. I’ll be team speaking with a dedicated cancer advocate and an oncologist about clinical trials at a big online meeting in May.

Over the weekend I spent a lot of time connecting with lung cancer advocates from across North America, which I really enjoy. Advocacy is accomplished through relationships and teamwork, a lesson I learned as a little girl from my Mom and have seen repeated over and over again. I am grateful to get to know so many amazing people! This is one of the silver linings of lung cancer.

Advocacy work lights my fire!

#lungcancer #advocacy #lcsm #CCTG #thewhiteribbonproject #joy #relationships #team #Mom #itsup2us #grateful #neighbourhood #walkable #teamwork #work

Strengths, Stories and Opportunities

Team Draft works hard every day to encourage, uplift and strengthen lung cancer advocates. I have been the beneficiary of that encouragement and advocacy training in various ways since I first heard of Team Draft through this video What’s the Biggest Cancer Killer? made by Team Draft with our friend Keith Singer and the Catch it in Time team. I met Chris in person in 2018.

Team Draft has traveled worldwide to connect with the lung cancer community in cancer centres – over 60 in the first year – as well as meeting people in restaurants, at games, and in people’s homes. It matters to Team Draft to really get to know people and help them develop their strengths. Seeing people in their contexts is the best way to more fully understand their story and better support them. Team Draft works strategically, developing leaders and encouraging everybody.

With COVID Team Draft has quickly pivoted to making the most of opportunities. Thanks to online platforms such as Zoom, they meet regularly with a wide variety of people in many places, right from the comfort of home.

Team Draft values the importance of following best practices, such as researching our audience and tailoring our messages to our listener. Team Draft embraces the power of story and audience-appropriate messaging for advocates: “We have to know our audience and we need to know our ask.”

Through Zoom, Chris has introduced some lung cancer advocates to his friend Dr. Dennis Rebelo, a professor, coach and consultant who has developed an effective method for helping people tell their stories better. It’s called StoryPathing, and as we’ve started down this path it’s helped us more deeply explore the power in our stories. This process has great potential for helping advocates tell our stories better.

Advocacy is about relationships and storytelling. More effective storytelling means more effective advocacy and in this case, that can mean better outcomes for people affected by lung cancer.

I’m pumped about the possibilities!

Thank you, Chris Draft, Team Draft, and Dr. Dennis Rebelo!

A day in the life of an advocate

Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!

Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …

International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.

The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!

The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.

There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team

photo credit: Chris Draft

Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude

A pill can turn a life around

I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!

Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.

Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.

That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!

Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…

Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!

Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!

All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!

In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.

In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!

Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.

This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.


Dear Hon. Christine Elliott, Minister of Health,

I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario. 

I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.

It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.

Some facts:

  • Crizotinib for ROS 1 received NOC November 2017 
  • It received a positive PCODR recommendation June 7 2019. 
  • The PCPA (pricing) negotiations are complete.  
  • Provinces across the country have started to cover it including BC, SK, QB, NL, NB. 
  • It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication. 


This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding.  To date, there has been no response. 

https://www.lungcancercanada.ca/LungCancerCanada/media/Images/Crizotinib-for-Ros-1-ON-FINAL.pdf


I look forward to hearing from your office and discussing this issue with you.

Warm regards,
Jill 

Jill Hamer-Wilson  BEng, BEd, MTS      

613-325-5695

www.ThroughtheValley.ca

Lung Cancer Survivor Advocate

Canadalung@gmail.com


Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott christine.elliott@pc.ola.org, and also cc me canadalung@gmail.com.

Please don’t hesitate to reach out if you have any questions, concerns or comments.

I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: christine.elliott@pc.ola.org fgelinas-qp@ndp.on.ca karen.hughes@ontario.ca jfraser.mpp.co@liberal.ola.org)

If you live in Ontario, please also email your local MPP and mention your address so they know they represent you. It’s easy to find your MPP:  https://www.ola.org/en/members/current

Please cc me: canadalung@gmail.com

Please also reach out to the Health Minister on social media if you are able.

Twitter: https://twitter.com/celliottability?s=21

Facebook:https://www.facebook.com/ChristineElliottON/

Instagram: https://instagram.com/celliottability?igshid=157mo9u4heruz

Please tag me, and include #HOPEUNiTES Thank you!

THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.

A pill can turn a life around. Thank you for acting to turn people’s lives around.

World Lung Cancer Day 2020

World Lung Cancer Day is August 1, and this year the focus was on team building for a group of over 30 lung cancer advocates from across North America! Team Draft gathered advocates online to welcome author and inspirational keynote speaker Marques Ogden as he – for the first time – shared his own personal story of losing his grandmother, the matriarch of his family, to lung cancer.

Not everybody is ready to be an advocate after they lose someone they love. We recognise that this can be a very hard thing to do. It takes courage to share one’s story, so it is important that we welcome people and provide a supportive environment that allows them to share their story. We are very grateful to Marques for opening up and telling us his story.

Marques Ogden’s life story is compelling, and he tells it well. After his six season career as an NFL offensive linesman, he navigated the challenging transition to life after football. He started a construction company and grew it to one of the largest in Baltimore Maryland. Marques shared openly about mistakes he made, and the bad company culture he allowed to grow. He went from being a multimillionaire to going bankrupt in a matter of months, then did some significant self reflection before charting a new course and pursuing it with steadfast determination. He is now a key note speaker, executive coach, business leader and author.

Marques has wisdom to share about life, business and teamwork. He shared some important words for lung cancer advocates, and we were taking notes! Lung cancer needs more advocates who work together as a team.

Marques’ words sparked thought and conversations about team building values, culture, communication and perseverance. He challenged us to be intentional every day, and to work together as a unit to reach our goals. Chris Draft also spoke about the importance of team, and how team building needs work, time, relationships, and valuing skills and strengths.

Thank you, Marques, for sharing wisdom, and also your personal lung cancer story. Thank you, Team Draft, for setting up this World Lung Cancer Day celebration and team-building opportunity. Thank you also for this great book which I’m enjoying reading.

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.

12 Drummers Drumming – Advocates

12 Days of Giving to Lung Cancer Clinical Trials

Drummers keep time. We’re loud. We call out, “We are here!” We have picked the time and place and we are letting you know where we are. We are not going to hide. The place is here. The time is now.

Drummers beat out the call to action, heart cry of the advocate. Advocates bring sense of urgency. Some of us embody it. We know lung cancer is life and death and we are not willing to wait!

Advocates are trained to watch and listen, ask questions, spot gaps, speak appropriately, and drive change.

Advocates are trained in best practices and how to apply them.

Advocacy is #team. We all need a team. We are stronger together, better together. In lung cancer we need everyone, patient, survivor, caregiver, friend, any age, every stage, anyone, everyone.

Our hope is that in 2020, the lung cancer advocacy community keeps growing, supporting, learning, applying best practices, driving change. We are powerful, especially when we are a good team.

We beat the drum. The place is here. The time is now.

We are here. Gather together. Support each other. 

We drive change.

We call for action.

TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight*. Please give and ask people to give. Advocate for lung cancer clinical trials today!

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 #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #TeamDraft #ChrisDraft #Please #Give #Advocate #ThankYou #lcsm

* Please give. TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight: technically very early tomorrow morning – 3:00am New York City time.