Queen's Park 2.0

Again this week I had the opportunity to visit Queen's Park, a little more than two years since the first time the girls and I were invited by Save Your Skin Foundation to attend a reception and presentation on the landscape of melanoma treatment in Canada. 

In fact I was there twice this week, once to meet with our very own Bruce-Grey-Owen Sound MPP Bill Walker, and a second time to attend a breakfast event to inform on the topic of immuno-oncology in cancer treatment.  One of the big parts of my cancer story is that I was lucky enough to receive immunotherapy treatments in the adjuvant setting, following my stage IIIb nodular melanoma diagnosis in April 2014.  I am a special snowflake in this regard, as I received it by clinical trial, when it wasn't (and still isn't) available in Ontario - or Canada.  It quite possibly saved my life; with each month that passes I celebrate that I am getting that much more time than I was first given when diagnosed.  

Anyway, in the name of sharing the importance of a story like mine in order to to give hope to others, and to advocate for better access to these life-saving treatments, I was invited this week to represent Save Your Skin at the "Queen's Park Advocacy Days" in Toronto.  This event was coordinated and hosted by Canadian Cancer Survivor Network (CCSN), and included a series of advocacy meetings with MPPs and other provincial government advisors and representatives, to discuss the importance of timely access to the cancer treatments that Ontario patients need.  

CCSN is a patient organization based in Ottawa, which works on behalf of all cancer indications, recognizing the value of immunotherapy treatments in various types of cancer such as lung cancer, some types of lymphoma and myeloma, and even bladder cancer.  Melanoma is the poster child for research in immunotherapy, as it was among the first to respond to this type of treatment, one that uses the body's own immune system to fight cancer cells.  

CCSN President Jackie Manthorne delivered heart-warming opening remarks at the breakfast event, and then we heard from an Ottawa-based Oncologist as to how immunotherapy works and what benefit it holds for treatment of lung cancer, as well as Sudbury MPP France Gélinas who commented on the need for improvement in the Ontario healthcare system, and the importance of the patient voice in our drug approval process across Canada. 

It was my first time seeing Jackie speak, since I first "met" CCSN online in 2016, and she did a great job of addressing the patient advocates in the room, as well as the government folks who took the time to attend the event.  Any opportunity to connect patients with decision-makers is a great one.  I was pleased to represent Save Your Skin Foundation as a friend of CCSN, and enjoyed seeing my colleagues from fellow patient groups such as Lung Cancer Canada, Myeloma Canada, and Lymphoma Canada.  We often work together in this field and join voices at events such as these.  

Another group we have crossed paths with in the past is Bladder Cancer Canada, and I had the pleasure of chatting with one of their representatives this week at both meetings.  Bladder cancer survivor and incoming Chair of their Board Ferg Devins, a communications strategist in Toronto, was my advocate-buddy in meeting with Bill Walker, and an experienced navigator of the many hallways and entrances/exits of the "pink palace" that is the Queen's Park main building.  We had a productive discussion about cancer care in Ontario with Bill, and I expect we will collaborate again in future. Shout-out to Ferg - and thanks to Bill Walker for generously offering for us to use his parking spot yesterday! (super huge help for this non-city girl trying to find a parking spot anywhere in downtown Toronto agh! - and a nice bonus for those of us who wear stylish high heels to meetings ;-) 

I also had the honour of bringing my daughter Cass with me, so she saw first-hand what I work on in my job every day.  She was pleased to realize she understood what everyone was talking about, and she even had a nice conversation with a curious MPP who asked her what it was like being the caregiver of a cancer patient who received "this immunotherapy stuff."  

She had expressed some nervousness on the way to the event, worried that she might not know what to say if anyone asked her a question, but I assured her she would be great, as she has first-hand experience with the topic at hand... and sure enough she was a fantastic spokesperson!  And who knows, she may have touched a nerve with the gentleman she spoke to, and he may have left the meeting with just that little bit more insight into the reason for the event and the need for government to understand and work to improve. 


After the immunotherapy information session we were invited to attend Question Period!  Thanks to CCSN and to Bill Walker MPP, Cass and I, along with my colleague Louise Binder, Health Policy Consultant (Toronto) with Save Your Skin, were introduced in the Legislative Assembly of Ontario.  It was awesome to hear our names and that of Save Your Skin Foundation go on record in Ontario, an experience I was happy to relay to my boss and friend Kathy Barnard, President & Founder of this Vancouver-based group. Save Your Skin Foundation is a national not-for-profit patient organization, and we were all thrilled to be recognized in Ontario.  We support patients across the country, and have many friends in Ontario, so it was a sweet moment to make it official.

Was interesting to witness Question Period too, especially the day after the budget dropped - woo hoo lots of clapping and table-banging theatrics between party representatives! You can view archives of the Question Period HERE. Of course we couldn't take any photos inside the chambers, but at that link you can see what we saw.  Cass and I concur it was worth leaving Meaford at 4am to travel to!   
I also got a look at the new Minister of Health and Long-Term Care for Ontario, so I can picture who I will be addressing in an upcoming letter about melanoma patients' needs in immunotherapy treatment.  :-) 


A few more pics from the day, enjoy...

 

Queen's Park, Toronto, Ontario, Canada

Oh and as we were walking around the outside of the building too, and I was oooh-ing and ahhh-ing about the architecture and lamenting the history of this building, Cass sweetly breezed past me unconcerned, and with a flip of her hand said "MOM... please remember I just travelled to EUROPE!"  LMAO - point made.  This is not Gaudi.  But I do appreciate the history of our local capital.  Huff.  ;-)


PS - the kid did have a great trip to Italy and Spain, we all survived. LOL  I am proud of her for putting herself far outside her comfort zone and achieving that trip (and daily gelato tastings!)  And I am proud of her twin, for holding her own while her sister was away, and for going to school yesterday while Cass and I went to the city.  Claire - I will ask Mr. Walker for another opportunity to visit Queen's Park, so you too can see the spectacle that can be our government in action.   Love you both!

Patient First

I woke up this morning to an email from youTube that my favourite account had posted a new video.  Naturally, I clicked on it, watched the video. Then I snuggled back down, and spent an hour lying there watching more and more (great job youTube, just as you intended!).  As I lay there daydreaming about my favourite car, I thought about how I have had little time to write on my blog anymore.  I rarely have a quiet Saturday morning to myself anymore, and I rarely put money into the savings account that is to fund the lifestyle which is portrayed in my video-watching guilty pleasure this morning.  But today I was brought back into the room, so to speak.  

Hearing the rumble of the subject in the video reminded me of why my blog is named what it is - and thinking of blogging reminded me of why I started in the first place.  

I am a patient, first.  I am a writer, patient advocate, and now full-time Managing Director of a fabulous Canadian skin cancer patient support organization, but I am a patient first.  Almost four years ago I was diagnosed with metastatic melanoma, and I remain at high risk for recurrence of the disease. That will never change.  In the time that I am here I feel it is my responsibility to talk about this, share it, help others the way I have been helped.  

But there is also a natural progression that comes with all of that. I am learning so much about the disease, and about the landscape of treatment access (or lack thereof) in Canada, that I sometimes find it difficult to separate my work from my personal, especially in a public forum such as this blog on the big ole' world wide web.  I don't want to become one of those advocates that becomes just another name in the melanoma world that can't relate to those who are newly diagnosed.  

I am now farther along in my journey and one would have to use the tags to the right side of this screen to go back to see all of what my family and I went through.  Not many people want to do that, which is okay, it's there if they change their minds, but I still want to stay relevant, let others know they are not alone.  

Though I am now working in the field and traveling a bunch to further this work for Canadian patients like me, and haven't had time to write about it as much, I am still dealing with the every day challenges of being an advanced melanoma patient.  

I still parent my kids 24-7, I still have CT scans (and Scanxiety!) every six months, I still have bloodwork every six weeks to monitor my health (because I have proven inconsistent in taking my prescribed meds and supplements - tisk!), I still have the very valid fear that the next mole or bump or swollen lymph node could land me back on the surgeon's table, and I still really fear the possibility that I won't get treatment if I need it, because my government doesn't deem it (but I digress..). 

I follow several well-known melanoma advocates and bloggers around the world that were a huge support to me personally; we went through a lot "together," they helped me so much (though they are not aware of me LOL).  Actually in October in Australia after one session I was on Twitter and realized that I had been sitting LITERALLY two seats behind one of my fave Aussie bloggers!! I missed my chance to meet her but we did have a brief Twitter conversation afterward, where I could adequately fan-girl over her presence in the room I had been in. Yah, you remember me Naked Gardiner, I know you do. ;-)

But sometimes I read their articles and feel they are harder to reach than normal people, normal patients.  These blog celebrities shared their painful experiences, their challenges and their triumphs as they encountered them, as I have, but they have moved on to the higher-level advocacy that comes with the territory.  When I was first diagnosed I didn't understand those things, and I felt they weren't entirely accessible.  
Now I do understand those things, and I want to remain accessible. That's part of why I don't post as much as I used to, the stuff I talk about on the advocacy front is perhaps more applicable to those who seek out an organization like Save Your Skin, not necessarily "regular people" like myself, who are simply melanoma patients.  But I still am that regular person, and I still want to speak to melanoma patients.  Give hope.  You too can survive.

Recently I have been in the situation where my blog has come up, and I have told my story, and shared tears with the new friends I made in that conversation, and I remembered that this is where it all started.  My blog to keep friends and family updated, turned place to vent my whiny fears and frustrations, turned dream career, is still the mainstay of my goals for my future and that of my kiddos.  

I still want to move to Italy and live in my Maserati. Just saying.  (and my boss says no problem - I can work from there just as well!)

But in the meantime, I will stay here, get the girls through high school in the town they have lived all their lives, and continue my work in the Canadian melanoma space, as an advocate, as a patient.  

Actually there are a couple of opportunities on the horizon where I will be sharing my story in a public space again.  Both happen to be in Montreal (poor me, I know, having to randomly fly to this lovely city); one is a speaking engagement in which I will share my story with a room full of pharmaceutical industry representatives (who are wonderful people by the way - don't let the tree-huggers make you think they are the evil in the world) (THEY saved my life).  

The other is a filmed interview for a website that was launched in 2016 in conjunction with our patient project "Melanoma Through My Lens."  More to come on these, I will be facebooking them etc. as well as sharing them through the Save Your Skin Foundation website - shameless plug - on which I spend a lot of time writing and updating. 

In the meantime I'll be working on our report from attending the Canadian Melanoma Conference in Banff last weekend.  Since I have heard that there is such a thing, I have wanted to go, so that was a very cool experience.  I was fortunate to meet in person many of the Oncologists from around the world that we work with on a regular basis, plus, from Sunnybrook, my very own Medical Oncologist AND my Surgical Oncologist (who I haven't seen in a couple years!) were there and presenting on the agenda.  It was an unspeakable honour to be in the same room as all of these melanoma experts and to be able to bring back their teachings to our knowledge base. 

Was awesome too, to be having lunch with my Surgical Onc. and she recognized me, I certainly didn't expect her to.  I had spotted her name on the program and planned to stalk her at the conference teehee - She said she saw my name as an author on the scientific poster displayed at the conference and wondered if I was the same one as her patient - sure enough it is me. :-)  We had a nice chat to catch up.  

And yes we did just complete our poster, we are working to have it peer-reviewed, and possibly published at the Society for Melanoma Research Congress in October in Manchester UK.  I am making that a personal mission.  The poster is based on our patient survey results from last Fall, about the mental wellness of patients after a melanoma diagnosis.  Feel free to check it out here.  We are continuing work on this project so I'll keep you posted.  hehe  posted... on the poster... get it  ;-)    OK time for me to stop rambling and get to work on the report.  

Happy Saturday All, and thank you again for your interest and support (extra thanks if you have made it this far in yet another long blog post).  

For your viewing pleasure, here is a photo of my future Maserati.  Mine is the black one, although I haven't yet decided whether or not it will be a convertible... I'm leaning toward not, to help protect myself from gratuitous sun exposure (for which I used to be a glutton, hence the melanoma blog).  

PS - Eleven years ago I spent a week in Florence, and next Tuesday my daughter is going there on a school trip.  Emotions are high in my house at the moment, as this is the first time the twins will be so far apart for so long.  And because I am jealous as hell. LOL  I want to go too waaaannhh