Sharing Hope

An encouraging email from a dear friend this morning reminded me that if you don’t follow me on facebook, you may not know how grateful I am for your generous flow of donations which filled my LUNGevity Summit Survivor Challenge account all the way to the top and even a little bit over! I am excited to be going to LUNGevity Foundation’s International Lung Cancer Survivorship Conference in Washington, DC, April 26-28!! THANK YOU!!!

I am grateful to be blessed in so many ways, and one of the biggest gifts is my community, my circle of friends who hold me with such love. Thank you for being part of that community. I have no words for how grateful I am for you.

Yesterday my husband bumped into a teacher from back in our eldest’s elementary school days. She told him she follows this blog and prays for me every night. When he told me, I got a little teary with gratitude. I can’t tell you how many times people have said they read this blog and think of me and/or pray for me regularly. Thank you! You are making a difference!

You help me have hope! Thank you!

As my dear friend said in her email, I have opportunity to share amazing hope… here in Ottawa, in Atlanta the end of this month, at the LUNGevity conference in April, and who knows where else! Thank you for the ways you help me open up the doors!

This kind of care

I’m heading to Atlanta for the special Scientist <–> Survivor program at the preeminent cancer research conference (AACR Annual Meeting) in two weeks, and I am excited! I want to make the most of this opportunity, so I’m preparing! One of the articles I read, recently published by the National Cancer Institute (US), was about lung cancer treatment disparities in The United States. Here’s what I learned:

Black patients who are diagnosed with early stage lung cancer are less likely to be treated than white patients (in the US). A study tried to address some of the reasons, and ended up significantly increasing treatment rates for black patients and also white ones.

Outside of the study, only 69% of black people and 78% of white people completed treatment (that could potentially cure them of lung cancer). In contrast, during the study, a remarkable 96.5% of the black people and 95% of the white people completed treatment. What a significant improvement!

Do you know how they did it?

  • They paid attention to whether or not people were getting treated.
  • They communicated.
  • They hired nurse navigators to engage with people and break down barriers.

This kind of care – just a little more care – made an enormous difference! We need this kind of care for every lung cancer patient in every cancer centre!

I wonder how the care compares in Canada…

You can read the article here!

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.

Not even a migraine…

No, not even a migraine could stop me, last December, from submitting my application to the American Association for Cancer Research (AACR) Annual Meeting Scientist – Survivor Program, which takes place March 30 – April 3, 2019, in Atlanta Georgia! #AACR19 #AACRSSP19

This program intentionally connects scientists with cancer survivors during this big, exciting international cancer research meeting. It may be difficult for some of you to understand why I would be so terribly keen to go, but trust me! I really, really wanted to go and be part of this amazing opportunity to connect with people, learn things and tell my community about them!

The AACR’s website says their Annual Meeting’s program, “covers the latest discoveries across the spectrum of cancer research … and highlights the work of the best minds in research and medicine from institutions all over the world.”

I’d been trying to work on my application, as the days raced towards the December deadline. Busy days, Lung Cancer Awareness Month activities, end-of-year extra’s, concerts, wrapping up details from the November “Living with Lung Cancer: Ottawa’s 1st Patient-Driven Mini Summit”, kids’ activities, special Christmas events, family travel, etc.

Suddenly I was down to the wire with thoughts swirling in my head, so fast I couldn’t write them down. I had answered most of the questions, only a couple left plus the BIG ONE: an abstract for a scientific type of poster that I would actually make and present if I was accepted into the program. (No pressure!)

What made it worse was that my hands weren’t working well. Nerve pain is a side effect of the new drug I’m on. Writing or typing can be very painful.

A dear friend helped by sitting at a coffee shop with me the evening of the deadline, jotting down my words on paper, helping me to compile my myriad of lung cancer ideas and thoughts into one clear concise “sort-of-scientific-sounding” abstract. When it was time to go home I still didn’t have it, and my headache was growing worse. I started to feel terribly sick …

I’m not going to tell you how physically awful I felt that night as I struggled at the computer to get the words together and inputted to the computer so I could submit my application. But I did it!

And here it is, all official, at this link, or you can read it below.

I am so happy to say that I am incredibly honoured to have been accepted into the program! A lot of people didn’t make it. Only 40 of us did.

As I go to this amazing conference, I’m representing those who weren’t accepted and those who didn’t apply. That’s a big responsibility, and I intend to share the things I will learn with as many people as I can.

You’ll be hearing more in days to come, but for now, I’ve got to go work on that poster! 😀

ADV06 / 6 – Informed, inspired, empowered: The new era of lung cancer patients/survivors in Ottawa, Canada

 March 31, 2019, 1:00 PM – 5:00 PM Section 29

Presenter/Authors

Jill Hamer-Wilson. Independent Advocate, Ottawa, ON, Canada

Abstract

This poster will discuss many aspects of Living with Lung Cancer. Jill Hamer Wilson’s mission is to raise up a team of lung cancer advocates whose voice cannot be denied and who will influence for change. Caring until there is a Cure through more research will equal more survivors. Initiatives include monthly support meetings for lung cancer patients, regular online support and communication, monthly outreach tables in the cancer centres, annual lung cancer patient summits, regular encouragement, inspiration and spreading of hope which goes beyond ourselves, beyond lung cancer, which breaks down walls that divide us. Constituencies include local lung cancer patients, and focus locally, but also reach to all affected by any kind of cancer, anywhere in the world. Ottawa’s 1st Patient-Driven Mini Summit took place on November 27, 2018. It provided a terrific stimulus to provoke discussion and networking with peers and leaders of interest. The psoter will also explore the experiences of lung cancer patients at the Ottawa Hospita; the journey from scarcity to abundance and the under resourcing to forming a community of hope and providing of resources for others. Examples of collaboration, such as speaking on panels about bench to bedside research and care, clinical trials, and fundraisers will be outlined along with learning and growth opportunities for lung cancer patients/advocates.

AACR Annual Meeting 
Home Page

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!

Queen’s Park Day, described by CCSN

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?

“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