Ontario’s Public Healthcare??

It’s been ages since I have posted, but fear not I am of good health (except for the flu…I’m better now!). Good health means I have been extremely busy in my personal life. I am writing today because I am seriously worried about what might happen to health care in the province I live in, Ontario.

Leaked documents have revealed the Ford government’s plan to open the door to the privatization of Ontario’s healthcare system. An expert with the Ontario Health Coalition says that the government’s plans “will undoubtedly compromise quality, safety and lead to two-tier health care.”

Send an urgent message to the PC government and local MPPs to demand that they protect public health care and scrap privatization plans.

https://docs.google.com/…/1FAIpQLScipV_9ddSf7IBaef…/viewform

If you’re part of the young adult cancer community, or you want to support us, please take a moment to sign this petition in defence of public healthcare.

[1] Toronto City News – Leaked Documents

If signing this petition isn’t your cup of tea, please make your voice heard by contacting your local MPP.
Be well,
XO

#GivingTuesday

Screen Shot 2017-11-28 at 9.25.44 PMAbout a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.

So why do we need a reminder?! Goodness and giving should be a no brainer, right?!

Is it that we get so wrapped up in our own drama, that we don’t see, or make time? AreScreen Shot 2017-11-28 at 9.26.08 PM we keeping score? If we are, then we shouldn’t, because life owes us nothing.

So I’m reminding you, Awareness is great, be aware, but also act.

I’m leaving this here, because I have to.

Be kind. Be good. Be present. Be generous. Give. Be well.

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Organizations I love.

Lung Cancer Canada

Young Adult Cancer Canada

First Descents

Save Me Dog Rescue

Konichi wa Nihon

So today is the big day, day one of the IASLCs World Lung Cancer conference! After a few days getting our feet grounded after so so much travel, I’m ready to report! 

So far it’s a busy day (what an understatement). I type this as I wait for my second big session. I’ll be back later with a summary of my day, and a few highlights of the conference’s first day. Until then, you can keep posted by following on Twitter (@thesearemyscars, @iaslc, #WCLC2017, or #LCSM, or Facebook). 

Sorry I can’t live link, but I will later on. Blogging by phone has its limitations! 

Sayonara for now, 

AM

So long Hong Kong

I write this as I am waiting to taxi out on my connecting flight to Tokyo. I am on my way to the International Association for the Study of Lung Cancer’s global conference, an annual gathering being held in Yokohama this year. In my pervious posts, you will have read about my excitement, so I’ll refrain from repeating myself.

What I will say is, thank you! 

Thank you to all the people who contribute and organize World Lung. Thank you to the researchers, those in clinics and those behind a microscope in the lab. Thank you to the oncologists and their teams, to the nurses and social workers, and the army of people who chose to work in the field of lung cancer. Without you, I wouldn’t be writing this, or writing anything. 

I am so greatful to the IASLC for being an excellent resource and for opening their conferences to patients, but for also having an award that helps patient advocates with limited means attend. If it weren’t for this generous award, I would not be able to attend. I would be at home, glued to twitter waiting for the latest developments in lung cancer research and care. Of course I have a vested interest in what’s going on at a “World Lung” because it tends to be where patients like me, living life line to life line get our info. That is, if we aren’t already in a clinical trial. It may sound weird that I’m excited about exons, translocations, and serum diagnostics, but that’s where all the juicy details are being studied, that is a gross understatement! There is so much incredible research being done in lung cancer. 

So as the stewardess asks me to turn my phone to airplane mode, I ask you to keep tuned here. I am hoping to post a daily summary of the things I have gotten to do (I can’t get to everything, that would require cloning.). I hope to be well rounded and share not only the patient experience, but the science and social events as well. 

Stay tuned,

AM

Look out Yokohama

Screen Shot 2017-08-22 at 4.14.12 PMIt has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!?Screen Shot 2017-08-22 at 4.05.37 PM

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

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Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

As always, be well.

XO AM

*taken from https://www.iaslc.org/about-us

World Lung Cancer Day

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The Forum of International Respiratory Societies

Honour, Unite, Inspire. It’s 12:01, the dawn of the 6th World Lung Cancer Day and I struggled trying to write this. I wondered if I should write about numbers and facts, or maybe about how lung cancer is the most common cancer globally*. That of the  estimated 1.8 million new cases (in 2012)*, most (58%) occur in less developed countries*. That it is the most fatal cancer globally*. However, it might be more meaningful to tell you what “Honor, Unite, Inspire”, means for me, a lung cancer patient.

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Pan-African Thoracic Society

I write and share about living with lung cancer is because, I truly feel that if my experience, struggles and joys can touch or inspire just one person, then I have done my job as a good human. I think back to when I was diagnosed, and throughout treatment, I felt so very alone. I think of all the people out there with that same diagnosis, and how they too must have felt isolation and loneliness. I think about all the questions and fears I had, and no one to advise me, or let me know that what I was feeling was normal. I needed blogs like this, connection to patients who have survived and were surviving. Back then, it was hard to find. Now, not so much. Thankfully, but we still have work to do. Its for this, we have a Day like today.

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American Thoracic Society

Everyday I am blessed to see, I get to honour those who have given me strength, those who live with this disease, and those I have lost to it (sadly there are so many). Their courage and grace, push me to be better and instil me with passion to advocate for others living with this disease. It helps me channel anger in to action, frustration into hope. One of the reasons I advocate is so that those who are newly diagnosed don’t have to. So that they won’t fall into the cracks, and so that they don’t have to face the stigma of their diagnosis. There it is, the “S-word”, that assumption that lung cancer is our fault. That deadly misconception, that impedes compassion and funding. That idea that adds unnecessary stress

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European Respiratory Society

and shame on a patient and their family. It is for this, we need a Day like today.

It has been over 8 years since my original diagnosis, I know that I am alive in part to where I live. I am very lucky to live in a country that has a health care system that is accessible to all of its residents. I know it isn’t perfect, we have problems too, but its still pretty damn good.

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American College of Chest Physicians

Therefore, it would behove me if I didn’t point out the disparity between first world nations and developing nations. We are often so focused on our own problems, that we forget to think of those of others. Here, we might concern ourselves with accessing the latest and greatest treatments, there they may worry they will get treatment at all. Many countries don’t have the infrastructure and provide basic care, people may not  get

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Asian Pacific Society of Respirology

a proper diagnosis, let alone treatment that costs thousands of dollars a month. Their governments like ours focus PSAs on smoking cessation, the difference it that is their man way to “treat” lung cancer, after all you don’t have to treat the patients you don’t have. Here we concern ourselves with late effects or secondary cancers, there patients may worry they and their family will be shunned by their community, because there they think cancer is contagious. It is for this, we need a Day like today.

Until, we can ensure patients everywhere are being screened or

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Asociacion Latinoamericana De Torax

diagnosed quickly and comprehensively, are receiving the appropriate standard of care and support, are receiving as much funding as every other common cancer group, and we have either increased the survival rate to above 50%, or reduced the number of new diagnoses, we will need a Day like this.

AM

*Source WLCD Fact Sheet.pdf, http://www.firsnet.org/news-and-actions/86-forum-of-international-respiratory-societies-continues-grassroots-world-lung-cancer-efforts 

 

 

When Worlds Collide

Screen Shot 2017-05-04 at 8.30.28 PMToday is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results  and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”

It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.

Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If yoScreen Shot 2017-05-04 at 9.28.07 PMu are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.

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I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.

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Look at all those beautiful survivors!! Also that’s Katie hope dealer extraordinaire 🙂

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.

I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.

It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.

I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath.Screen Shot 2017-05-04 at 9.22.20 PM

Be Well and May the 4th be with you.

AM

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