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