Story

Kindness

Posted by

1

Last June I asked a really lovely medical oncologist/researcher friend, Dr. Narjust Duma, if she knew the YouTuber @chubbyemu. I was thinking that my son would really like it if @chubbyemu reached out to him. COVID was turning everyone’s world upside down, and I knew my son was a big fan, so I hoped it might help make his world a little better. Turns out she didn’t know him, but chose to reach out on our behalf anyway, and @chubbyemu said he would be happy to connect with my son. I got all teary when I read her message, and I’m feeling the emotions again as I reflect on it now. So very grateful!

@chubbyemu emailed my son, and my son was thrilled. I was very excited too, and messaged @chubbyemu to thank him. I also mentioned that if he ever needed a lung cancer advocate, he could reach out.

In September, @chubbyemu messaged to ask if I would be willing to share my lung cancer story. A conversation ensued, culminating in this video shoot and release in March. Here is the link for the video on his @HemeReview YouTube channel: Interview with a Stage 4 Lung Cancer Survivor (Jill Hamer-Wilson) .

What an exciting experience that was, especially since we were filming it separately in different countries, and Dr. Bernard was masterminding the production and helping me navigate various technical challenges at a distance!

Naturally, The White Ribbon Project was part of the 25 minute interview, and we were honoured to send Dr. Bernard (aka @chubbyemu) a White Ribbon, with sincere thanks for his support of people affected by lung cancer and The White Ribbon Project.

It’s so important that people affected by lung cancer know that they are not alone, they are loved, they are welcomed, they belong, you are loved, you are not alone. If you or someone you know would like a White Ribbon, please reach out. The White Ribbon Project is about #love and #hope.

It also matters that we recognize The White Ribbon Project is inclusive, including lung cancer doctors, nurses, researchers, fundraisers, administrators, physiotherapists, social workers, technicians, cancer centre CEO’s, media, newly diagnosed, care givers, people who have lost a loved one, survivors, former smokers, current smokers, never smokers, early stage, late stage, surgeons, radiation oncologists, medical oncologists, pharmacists, cancer centre staff, managers, social workers, respirologists, primary care physicians, health educators, friends, family members, speech-language pathologists, YouTubers, bloggers, and so many more! #inclusive

Thank you, Heidi and Pierre, for making the first Ribbon with love, making this particular Ribbon with love, and sending it with love to Dr. Bernard.

Thank you, Dr. Bernard for supporting The White Ribbon Project, this lung cancer survivor advocate, and so many other people affected by lung cancer. Thank you for raising lung cancer awareness. Thank you for your compassion, generosity, and kindness. Thanks also for the great photo’s! #thewhiteribbonproject

Thank you, Dr. Narjust Duma for choosing to reach out to a stranger to do a great kindness for the son of a lung cancer advocate. Thank you for being a fierce thoracic oncologist, Asst. Prof, researcher and advocate! Thank you for supporting people affected by lung cancer and The White Ribbon Project. We are grateful!

#gratitude #kindness

Strengths, Stories and Opportunities

Posted by

0

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!

4 Calling Birds Sharing Stories

Posted by

0

12 Days of Giving to Lung Cancer Clinical Trials

Here’s to all those who bravely share themselves, who share their stories. It can be hard to be vulnerable, to open up and reveal your authentic self, to share difficult details, engage in courageous conversations. It can be hard to go public with your story. Stories matter. Sharing stories shifts culture, drives change, changes the face of lung cancer. Here’s to all who brave those challenges who share their own stories.

Here’s to all who share lung cancer stories, hospital communications teams, writers, photographers, videographers, sound technicians, cancer centre public relations people, reporters, and all kinds of media and behind the scenes folks. Cheers to all those who are supportive and work hard to tell our stories well. Thank you for helping get our stories out, for they are important and need to be heard. You are changing the face of lung cancer, and we are grateful.

Here’s to Lizzie and Kayla, two brave young women who changed the face of lung cancer through sharing themselves, their stories, and fundraising. They knew the importance of sharing their story and the importance of raising funds for research. They were also both lovely people, kind and encouraging, loving and inspiring, deeply missed. What an honour to have known them.

Cheers to all those who join online lung cancer communities, who authentically contribute and genuinely care. That is another kind of brave and important story sharing! Online communities are powerful for support and information, and also fundraising.

I’m involved in several online groups, including one international ALK+ group. ALK is a rare kind of lung cancer. This group has almost 2000 members, and held its second annual summit this past August in Atlanta. Thanks to a generous family, I was able to go and meet some of my ALK family in person, and what a celebration that was! This group is so supportive and encouraging, and tremendously knowledgable. We heard from world leading oncologists at the summit, because this group highly values research. We know our lives may depend on being informed so we can gain access to clinical trials and latest treatment options. We know very well that research is life, and we fundraise for research into our particular kind of lung cancer (as do people with other kinds of cancers). The ALK+ group raised $500,000 USD last month alone, and this month they have secured matching grants up to $200,000 USD.

Research matters. People matter. More research means more survivors. Money = research = life.

Here’s to all who bravely share lung cancer stories! Here’s to all who tell them so well. Thank you. Stories matter.

Thank you for giving generously, for supporting lung cancer research, for opening pathways for more people to live longer and better!

To celebrate stories 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 #Support #SilverLinings #Stories #ThankYou

Queen’s Park Day, described by CCSN

Posted by

0

Please take a few moments to read what is below, what the good people of Canadian Cancer Survivor Network posted on their website about our day at Queen’s Park. If you follow the link, you can go right to their website which has more pictures from the event. CCSN does great work, including offering helpful resources like free webinars. I’m grateful for opportunities to partner with them. We are stronger and better when we work together.

Canadian Cancer Survivor Network/Connect/News/CCSN & Lung Cancer Canada to MPPs: Lung Cancer Patients have a Right2Survive

CCSN & Lung Cancer Canada to MPPs: Lung Cancer Patients have a Right2Survive

March 1, 2019

Lung cancer is the most commonly diagnosed cancer in Canada. It kills over 20,000 Canadians every year – more people than colorectal, breast, and prostate cancers combined. Despite being the number one killer, outcomes in lung cancer fall behind other cancers. All cancer patients deserve a chance to become cancer survivors, and this includes lung cancer patients too.

The Canadian Cancer Survivor Network (CCSN), in partnership with Lung Cancer Canada (LCC), hosted a legislative reception and breakfast at Queen’s Park on February 20th, 2019. Patients, survivors, caregivers and patient groups from various parts of Ontario attended and spoke with MPPs on the importance of ensuring that lung cancer patients receive opportunities in survivorship.

Speakers at the reception included The Honourable Christine Elliott, Deputy Premier and Minister of Health and Long-Term Care; MPP France Gélinas, NDP Health Critic and Chief Opposition Whip; MPP John Fraser, Interim Liberal Leader; and MPP Mike Schreiner, Green Party MPP and leader of the Green Party of Ontario. The reception was sponsored by MPP Andrea Khanjin, Parliamentary Assistant to the Minister of the Environment, Conservation and Parks.

Lung cancer patient advocate, Anne Marie Cerato, spoke about her journey to survivorship after being diagnosed at a young age with stage IV lung adenocarcinoma. She also celebrated ten years of being a lung cancer survivor with the audience, one that she described as a “unicorn” and “rarity” in the lung cancer community.

Over 30 MPPs from all parties as well as cabinet ministers attended and interacted with patients, survivors, caregivers and representatives from the patient community.

Groups from the patient community included After Breast Cancer, Dense Breasts Canada, Gilda’s Club Greater Toronto, Canadian PKU & Allied Disorders, Life Saving Therapies Network, Lymphedema Association of Ontario, Alberta Lymphedema Association, Lymphoma Canada, Ontario Lung Association, Prostate Cancer Canada, Canadian Cancer Society and Niagara College Canada.

Cancer patient advocates, survivors and caregivers from all over Ontario attended the event. These included:

  • From the Greater Toronto Area and neighbouring cities: Anne Marie Cerato, Larry Frydman, Raymond Laflamme, Roz Brodsky, David Soberman, and Kathryn Hamilton
  • From Niagara: MaryAnn Bradley
  • From London: Palmerino Leone and Julianna Leone
  • From Ottawa: Jill Hamer-Wilson and Andrea Redway

These fantastic patient advocates met with many MPPs, attended Question Period and shared their stories and input on how we can improve Ontario’s healthcare system in meetings with MPPs from all political parties.

“This experience gave me the opportunity to share with MPP France Gélinas, MPP Jill Andrew and MPP Daisy Wai, the early detection lung cancer screening pilot project. These conversations helped me to bring awareness and what it would mean to be able to treat lung cancer earlier than when it has advanced to Stage IV, and how this would be cost-effective in the long run.

I found that we still have a long way to go to end the stigma behind lung cancer and bring light to how important early detection in cancer is.” – MaryAnn Bradley

What We Said: Screening, affordable medications and patient engagement

Earlier detection is an important tool for improving long-term survival rates. Early lung cancer screening programs can also save our healthcare system money. According to Canadian studies, early treatment can save up to $15,000 per patient, as opposed to treating it at a later stage. We urge all political parties to continue their support by turning the early screening pilot programs in Ontario into permanent programs.

Scientific advancements continue to transform treatments available for lung cancer patients, offering them more options and the potential of a longer life for those with advanced cancers. However, there are long delays between Health Canada approval and provincial funding in Ontario – with one treatment taking more than 1400 days.

Ontario patients also have to pay for take-home oral cancer medications. This presents a barrier for many as these medications are not covered in the province, in contrast to Alberta and British Columbia.

We urge all political parties to take leadership and to bring Ontario’s healthcare system up to date. We also urge all political parties to ensure that the voices of those fighting cancer are heard, as the government consults on evolving our healthcare system to best meet the needs of patients, survivors and caregivers.

About lung cancer and the Right2Survive campaign:

The Canadian Cancer Survivor Network (CCSN) has partnered with Lung Cancer Canada (LCC) to increase awareness of lung cancer and to destigmatize this disease. The Right2Survive campaign, www.right2survive.ca, aims to build a community of support around the need to do more to improve lung cancer survivorship.

Canadian Cancer Survivor Network
https://survivornet.ca/news/ccsn-lung-cancer-canada-to-mpps-lung-cancer-patients-have-a-right2survive/

How did it go?

Posted by

2

“How did it go?” I can’t tell you how many times I’ve been asked that question the past few days!

I travelled to Toronto last week to meet with MPPs at Queen’s Park, to share my story with the hope that …

Four of us are lung cancer patients/survivors

… and that’s the real issue. What was I hoping for? Well, you know how I feel about funding lung cancer research. Lung cancer causes 27% of cancer deaths in Canada but research only gets 7 cents for each cancer dollar. That’s not fair! I hope for lung cancer research to be fair!

Last week, though, we weren’t asking for research dollars.

On Wednesday morning, Canadian Cancer Survivors Network and Lung Cancer Canada hosted a #Right2Survive Breakfast, with quite a good turnout. Thank you to all of you who contacted your Ontario MPP. Many good conversations were had, and several people spoke from the podium. I took pictures whenever I remembered to, and a professional photographer was present. One of the MPPs told me her people were always telling her to take more pictures and tweet more. I finally had time to tweet during the train trip home! (I’m @JillHW – please follow me if you’re not already!)

I think my cards were an effective way to get across the main point from my story – that lung cancer research makes a real difference for families like ours (and is worth funding) – very powerfully and quickly. Access to innovative new treatments has extended my life! Everyone I gave my card to looked at it, and I think the message hit home.

MPP Robin Martin

I listened as MPPs shared personal stories of losing loved ones to lung cancer. Some of the people in the room were clearly already committed to the cause. Others seemed very interested and open to further conversations and deeper commitments. I was grateful for everyone’s presence there and spoke with as many as I was able. Many good conversations were happening around the room!

One speaker noted that lung cancer kills over 20,000 Canadians every year, the size of a small city every year!

Our three main messages for the day were: screening programs (save lives, time and money), lung cancer patients deserve timely and affordable access to innovative treatments, and patient voices must be heard!

After breakfast, several of us observed Question Period in the Legislature. What an interesting experience! (My first time.) For those who may not know, our provincial government has recently introduced a new plan for families with an autistic child or children. They claim it will help more families, but it works out to less funding per family. Families have been protesting, and that day quite a large number were in the gallery. One after another, members of the opposition introduced families and described their situation and how the funding changes would negatively affect them. It was very sad, very hard to listen to, but it reinforced to me the importance of telling our stories. Clearly the Opposition together had determined this was the best strategy to sway the Government, and I can tell you that it was powerful.

Fellow advocates and CCSN

After Question Period, quite a few meetings were scheduled with MPPs. I wasn’t very nervous about meeting with MPP John Fraser, because I had sat beside him at the pre-election town hall meeting at which I spoke last Spring, and he was very encouraging. This time he expressed interest in our messages and appreciation that I had traveled all the way to meet him there in his Toronto office rather than in Ottawa. He honoured me by listening intently and saying how important my story is. My fellow advocates had many similar experiences in their meetings.

MPP John Fraser and LCC’s Christina Sit

So, how did it go? To be honest, I’m not sure. I plan to ask the organizers what they think, once they’ve had time to process it. They’re the experts. I’m just a voice of lung cancer, telling my story, representing countless others, and trying to do that well.

I hope that it makes a difference – even the smallest difference. That’s what I hope for.

Grace

Queen’s Park

Posted by

2

I am honoured to travel to Toronto next week to represent Ontario lung cancer patients as I tell my story to MPP’s at Queen’s Park. If you live in Ontario, it would mean a lot if you would take a few moments to call or email your MPP’s office to ask if she or he will be attending the Lung Cancer Patients – Right2Survive Legislative Reception breakfast on Wednesday February 20 at Queen’s Park (presented by Canadian Cancer Survivor Network, in partnership with Lung Cancer Canada).

It’s not hard to do! Every time I’ve contacted a politician’s office, a very kind person has been very helpful. It only takes a moment or two.

While you’ve got their attention, please also mention that lung cancer is Ontario’s number one cancer killer (Number 1 in the world), but outcomes lag behind all other major cancers. But more than just hearing statistics, people of influence need to meet real people and hear real stories.

Please tell your MPP about me. I’m representing Ontarians affected by lung cancer. Please tell your MPP that I’ll be there and I’d love to meet them.

Here’s the paragraph I wrote for the “leave-behind”, the materials that are left for the elected officials to look at after we’ve left:

We were shocked by my lung cancer diagnosis when our kids were only 6, 10 and 12, because we thought all my healthy choices would protect me from getting it. We are incredibly grateful for the five years which brand new lung cancer treatments have extended my life, starting with an investigational drug in a clinical trial. I can’t tell you how much it means that I’m alive to see my oldest accepted into Electrical Engineering at both Carleton and University of Ottawa. I hope I’ll live long enough for more milestones and memories.

I’ve got more meetings with influential people on the calendar, so I decided to have new cards made.

I paid extra to have our picture on them because I want to emphasize that we are real people, not just numbers. This picture of my family, prior to my diagnosis will help tell our story and communicate the value of lung cancer research to people of influence. My kids don’t just have pictures of their mom. My kids have a Mom who is alive, who loves them and makes a difference in their lives! I have been here to hug them at night and help them navigate life during these significant years, and I am grateful! A mom’s yearning is to be there for her kids. As lung cancer research improves, more of us will be here for our family and friends. We’ll live longer and healthier.

We don’t look the same now: we’ve changed these five years. New lung cancer research (and the grace of God!) has allowed me to continue to be in the picture. I get to see my oldest get accepted into Electrical Engineering programs everywhere he applied! I get to see my middle child play more musical instruments, and play them better and better as he keeps practicing and practicing! I get to see my youngest be the oldest kid in her school, and face some of the challenges 12yo’s encounter. I am so thankful … and I hope I’ll get to be there for many many more milestones and memories!

I’m going to Queen’s Park next week to represent lung cancer patients by telling my story! What a difference this gift of five years has made for our family! Lung Cancer patients need more money for more research for better outcomes for more survivors and better survivorship!

Will you stand with me, with us?

Please ask your MPP to meet me at the #Right2Survive breakfast on Wednesday February 20. (and if you did, please tell me how it went!)

Here are a couple of links to help you get started! To find contact info for your MPP, click here for a current list of all MPP’s. If you’re not sure who your MPP is, click here to find your Electoral District, by entering your postal code or lot and concession address, and you’ll find a link to info about your MPP.

I really hope I’ll get to meet your MPP!

Please also Tweet it out (I’m @JillHW), or post it on fb or Instagram (I’m not there lately but working on resolving the problem.) Thank you!

Thank you to Canadian Cancer Survivors Network for organizing the event in partnership with Lung Cancer Canada.

Thank you for standing with us!

#StrongerTogether #hope #onpoli