My work at SYSF, explained

A few years ago I posted about finding this group called Save Your Skin Foundation (SYSF), founded by BC-based melanoma survivor Kathy Barnard, and all about how Kathy and the SYSF team helped me through my cancer experience.  (Click here for a quick re-cap: "Queen's Park Yesterday")

Since that time I volunteer-blogged for SYSF, and was a Spokeperson for them at Ontario events and then nationally, until I felt well enough to go back to work, knowing I needed to do something meaningful with my career and help others the way SYSF had helped me. I badgered Kathy into hiring me part-time as a Project Coordinator, and off we went! 

I tested the employment waters for about eight months, got my legs back under me, and then moved into a full-on Director role in which I have been working for the past five years. As you know, that didn't leave me much time to write on my blog - but it's okay - I was able to pour all of my creativity and combined professional skills into my work at Save Your Skin, and I love it. Love working in this field, though stressful at times, I am proud of what we do, and I endlessly appreciate my mentor and friend, Kathy.  

Recently we were both interviewed for a joint article for AIM at Melanoma in the States, and this write-up took me right back to how I felt about Kathy and SYSF six years ago, and it is still how I feel today:

From Survivors to Advocates: Two Leaders are Pushing for Progress in Canada and Around the World

It is true that the Oncologists on our team joke with Kathy and I about how they help save melanoma patients and then Kathy hires them.  Kathy saved me - then she saved my career, and then she saved my love life LOL!  (More on that later - as I mentioned, Mike is a melanoma survivor and he has long been a Spokesperson for SYSF, and that is how we first met and became friends years ago. 😊 )

Many of my family and friends have asked me over the years "what IS your job?" 

I can explain. It is oncology patient support and advocacy across Canada. Helping patients like myself navigate the health care system, figure out - and access! - treatments, support them through the emotional and sometimes financial hardships of a skin cancer diagnosis, inform them about their disease and options, and simply in general BE there for them.

In the last five years, along with the Team and Board and Medical Advisory Board at Save Your Skin, I have supported the Foundation's work by:

• facilitating 14 educational webinars on melanoma, non-melanoma skin cancers, and ocular melanoma 
• hosting two fund raising Galas in Toronto, and one virtual one (since covid)
• attending the Canadian Melanoma Conference in Banff three times
• traveling around the world to attend conferences such as the Society for Melanoma Research Congress, European Post-ASCO Melanoma/Skin Cancer Meeting, CureOM Science Meetings and Patient Symposiums, Society for Immunotherapy of Cancer, European Society of Medical Oncology, and many more - next post is all about these! (Travel to all the conferences helps us learn all the latest news in skin cancer and advocate for the best treatments to come to Canada)
• representing SYSF and working with many Canadian and international groups to endorse and support work in the field of melanoma skin cancer research and support, including being on the cover of the newest National Comprehensive Cancer Network® (NCCN®) Patient Guide for Melanoma. True story:

• writing content and guiding awareness and support initiatives in all aspects for the SYSF community across Canada - annual Melanoma Awareness Month, Cancer Survivor Day, press releases, city proclamations, media opportunities, development and publishing of video productions, educational materials, blogs, newsletters, countless patient/caregiver meetings and roundtables, the list goes on...

Below are a bunch of photos of my work in the last five years.  

To kick those off I want to show you our newest video - among other items, most recently we launched a project about which I am very proud and excited: Sty-Lives - Styling Hair and Saving Lives.  (You may or may not know my Cass is a Hairstyling Apprentice, graduated from Marca College in Toronto, so she was a contributor on this project.)

Sty-Lives is being rolled out across the country by a team of Medical Student volunteers, plus our SYSF staff and supporters, to hair salons and barbershops for the education of hair professionals to help detect suspicious spots on clients' heads/ears/necks, encouraging them to seek an appointment with a Dermatologist for professional examination. All salons are eligible to register for this free program, so if you'd like more information or for me to mail you some materials for your salon, email me or let us know, here:

https://saveyourskin.ca/sty-lives/

And here is the video:

***

Collection of photos  - just some of the many friends I have made and experiences I've had along the way.  Enjoy!  

Giving Hope Gala

<--- oh and there's Mike! :-)

Move for Melanoma Annual Event

Global Coalition - Melanoma Research Foundation, U.S.

           ( and you might recognize this guy... --->  )

Conferences and Roundtables

MI-PAC - AIM at Melanoma, U.S.

And some random shots from over the years at the Cdn. Melanoma Conference at the Banff Springs Hotel:

And a random selection of our materials:

Thank you Save Your Skin Foundation, I love you! 

Save Your Skin Foundation (SYSF) is a patient-led organization dedicated to the fight against non-melanoma skin cancers, melanoma, and ocular melanoma through education, advocacy, and awareness initiatives across Canada. SYSF provides a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship.

My involvement in Melanoma Month this year

On my fourth anniversary of diagnosis of advanced melanoma skin cancer (which is this week), I am reflecting on my experience, and that of those around me.  Above all, I am grateful for all of the support I have received, and I am motivated to carry forward that feeling.  That is why I do what I do, in working for Save Your Skin Foundation.  

I have told you lots about Save Your Skin and how they have helped me - just check the label to the right of this blog. I have also told Save Your Skin lots about how you have helped me... my family and friends in Ontario, who really floated this boat in those couple years where the water was extremely rough.  

I love you both, and my girls love you both. And now, by some bizarre miracle, I have the chance to connect you - my family and friends, with my Save Your Skin family and friends.  May 10, in melanoma awareness month, in Toronto, we are having a party. :-)   A big, kickass party.

If there is any way you may be interested in helping to support this event (that I am seriously devoted to) (for many reasons that I have already explained on this blog) (many times), I would love it.  Claire and Cass would love it, my co-workers would love it, and all of the patients we represent would love it.  

Tickets include delicious catering, yummy cocktails, a super fun night with a silent auction and entertainment, lots of hugs, and a sprinkling of updates on how awesome it is to be sun safe and melanoma patient supportive.  We're even launching a big project we've been working on, a lovely video of some patient friends who represent the work we do at Save Your Skin Foundation.  

Here is the link to the Eventbrite information page, for more details or to buy tickets: 

Save Your Skin Foundation Giving Hope Gala & Auction 2018

If you can't make it, I understand, but if there is anything you can or want to do to support the event, and you know I never ask for donations.. but if you wish to, you could do so here: 

SaveYourSkin.ca/donatenow/

Thank you 

 

 

 

Sun Awareness Week June 6-12, 2016

Since 1989, the Canadian Dermatology Association’s annual, nationwide Sun Awareness Week has helped educate Canadians about dangers of excessive sun exposure — and reduce the incidence of skin cancer in the country.

This year’s Sun Awareness Week takes place Monday, June 6 to Sunday, June 12, 2016.

I celebrated National Sun Awareness Week by having a mole removed.  I had this funny mole that was developing a black edge, so... I took it to my doctor and she relieved me of it right on the spot! So to speak.

She said it was a classic "S K"(seborrheic keratosis) - Nothing to worry about, totally normal.  She burned it with liquid nitrogen right there and confirmed that yes indeed, it was even freezing up like a SK.  So yay!  I was stressing about that mole a bit, even though I was told melanoma would be more likely to appear internally than on the surface, especially in a new spot so far away from the original wide excision.

Otherwise I have been working on various melanoma awareness initiatives during this, National Sun Awareness Week.  I am preparing for a photo shoot with a local magazine that I will share when the Summer Issue is published - very exciting.  Bucket list stuff, that one.

I have also been invited to participate in a project with Save Your Skin Foundation to bring awareness to the "journey" of advanced melanoma.  It too is top secret until reveal time, but it is a very creative concept that I am proud to be a part of.  Stay tuned!

Thank you Save Your Skin Foundation for arming me with a whole bunch of great swag to help spread awareness of Sun Safety and Skin Cancer Awareness!  I will wear it with pride and share it with everyone I meet.  

The bracelets especially will be of interest at the speaking engagements I have been invited to at a couple of elementary schools. They change colour in sunlight to indicate the level of the solar UV index.

The key chains as well... the centre changes colour depending on the level of solar UV index. The darker the shade the higher the UV. The shades match the tones around the outside as a guide.  Very cool! 

My 2nd ByLine on Huffington Post Canada

I received a nice little surprise today: an email from Her Magazine letting me know that they submitted the article I wrote in April (for Her Magazine) to Huffington Post, and it was re-published. 

My second byline on Huffington Post! This time on Huff Post Living (Canada) now titled It's Time We All Take Skin Cancer More Seriously, posted by Her Magazine Canada, with myself listed as the author, at the end of the article. It even links to my Huff Post profile, and to blog!

Please click here ...and I appreciate your clicks and shares...  xoxo 

I am grateful to all involved: Huffington Post for publishing, Her Magazine for the collaboration, and Save Your Skin Foundation for asking me to be part of the #NotJustSkinCancer campaign in the first place.   

A bonus for this, May is Melanoma Awareness Month. 

PS - My Portfolio  :-)

Column - Meaford Express - Simcoe.com May 2016

Please click below to view my column in the Meaford Express this month; I appreciate CF putting it in print as well as online.  Much gratitude for helping to share this message.  

May is Melanoma Awareness Month

There are 12 months in every year, and hundreds of diseases or reasons to raise awareness, but for the sake of this column I will choose the one that is closest to my heart: May is Melanoma Skin Cancer Awareness Month... 

Me, Guest Blogger! Yahoo Canada - Style: Why no tan is a good tan

I am excited to share that I was asked to write an article for Yahoo! Canada in the Style section, about melanoma awareness and the Become A #SkinChecker campaign which kicked off in Toronto on May 2.  Thank you Yahoo! for helping us to share the message that it's #NotJustSkinCancer  

This guest blog piece required me to write in an open letter format, so it was an interesting challenge to write in that style for Yahoo! Style's Open Letter Series.  I am honoured to have been asked, and I stepped up to the topic in a bit different way - beauty, skin, tanning, vanity, style... a fashion-thinking approach.  I would be sharing the page with articles about the likes of the Kardashians after all!  

As for a photo to accompany the article?  Why my MOST tanned-skin picture of course!  The first one that came to mind was this one - my Southern-Belle tan was the perfect shade to show off this exquisite ivory silk dress which shimmered and was so soft and fluffy. 

I have recalled this particular image many times over the last two years, it has become a bit of a symbol in my archives.  For many reasons (since my divorce of course) but mainly as evidence of my perpetually bronzed complexion.  

Update November 2022 ~ Sadly, this article is no longer live on the Yahoo! Canada site. I have pasted it here for reading purposes: 

Dear Sun Worshipper,

I noticed your tan.  I fondly remember the warm relief of turning my face to the sun and feeling the heat through to my bones.  My happy place was lying, sitting, walking, anything! - under the bright rays of the sun.

  

I have been a sun-baby my whole life, my Ukrainian-Canadian skin rarely burned, and was always glowing bronze.  Even before it was called a “contour,” my contour was naturally golden, blemish-free and required a dusting of bronzer only on days I would wear black, or want to stun the party scene post-vacation. 

Come the month of May I would be flaunting my tank tops and starting the summer-day ritual of sneaking out on my lunch breaks to a private sunny corner to expose as much skin as possible to the renewing spring sun.  Little did I know this habit would lead me to spend sunny days far differently later in life. 

 

May is now for me the start of a season of limited outdoor time and repeated pangs of regret.  May is Melanoma Awareness Month, and I am painfully aware of that… as I have melanoma. 

 

Two years ago I had a mole turn ugly, far uglier that any piece of skin should have a right to be.  When I had it removed, the testing showed an aggressive form of skin cancer.  More tests quickly led to a diagnosis of stage 3b nodular melanoma; it had spread to my lymph nodes.  I quickly learned this was not JUST skin cancer.  It was inside my body, never to leave.

  

To help rid my body of this disease, I have had four surgeries, one of which landed me on bedrest for two months and has caused permanent damage to my leg, which remains swollen and heavy from lymphedema.  After that I had immunotherapy treatments over the course of 68 weeks which have so far staved off the spread of melanoma to my organs, but in return have disrupted my gastrointestinal system to uncomfortable proportions.  

My children, friends, and family have suffered alongside as I have struggled to survive melanoma.  We have all learned too much about this deadly disease, this disease that will afflict over 6 800 Canadians this year, almost 1 200 from which will perish.  Even writing those words makes my blood run cold.  I can no longer heat it up in the sun, and I wish I never had. 

 

I continue to recover from the blow that melanoma has given me, but I also continue to have CT scans every three months and frequent appointments with my oncology team.  I cannot make a medical move in the care of my own health without first discussing it with at least three doctors.  I appreciate my physicians immensely, but if I could choose?  I would prefer my old lunch breaks back; my carefree days of privacy and a glowing complexion, my confidence and ambition for a long life ahead. 

 

All of those are gone, but what I am left with is a new perspective on beauty and a better glow, a glow from within.  An ambition to change perspective on what appears to our society as healthy skin.  It is not the old days, when tanned skin was perceived to be healthy, connected with athleticism and a blooming lifestyle.

  

Tan skin is damaged skin.  Melanoma is a disease in which malignant (cancer) cells form in the skin cells called melanocytes (cells that color the skin).  Melanoma is caused by overexposure to ultraviolet (UV) radiation from either sunlight or tanning lamps; UV radiation damages genes that regulate cell growth and division.  It is considered the least common yet the most serious of the three main types of skin cancer, which also include basal cell and squamous cell cancers. (source)

In my case, melanoma has metastasized to my lymphatic system, therefore my risk of malignant cells making their way to my vital organs is high. I live in constant fear, waiting for the other shoe to drop.  I live with stage 3 cancer.  No tan was ever worth that. 

I am thankful that I have the opportunity now to bring awareness to this critical issue.  I started with my teenaged twin daughters: they avoid sun over-exposure at all costs and they encourage their friends to share their sunscreen.  I see their generation being more careful with their skin, and I love that tanning salon attendance now allows only 18+ customers.  

I would like to speak with the 18+ tanners as well, I could show you my scars and describe to you the tears through which I have learned this lesson.  I would show you photos such as the one above: myself as a young bride with a remarkable brown shade of skin.  And then I would show you my new favourite brand of mineral sunscreen with a tinted base.  I feel beautiful – AND healthy – when I put it on.   

I would tell you to look after your largest organ, to keep it out of the sun and to inspect it regularly for irregularities or unwelcome changes in mole appearance.  And I would invite you to learn from and participate in such campaigns as the Dalmatian-loving “Become A Skin Checker” movement.  

Detect. Protect. Keep Skin Cancer in Check. Spot Skin Cancer to Stop Skin Cancer.  

All easy things to keep in mind.  Besides the informative message to stay out of the sun between the hours of 10 a.m. and 4 p.m., wear sun-protective clothing, UV-blocking sunglasses, a hat, and SPF30+ sunscreen, Become A #SkinChecker offers detailed information on how to find a dermatologist to help maintain your skin health.  

#SkinChecker is connecting people world-wide with a healthy approach to skin and in turn, a greater awareness and observation of skin maintenance.  An earlier-detected skin cancer diagnosis means less pain, fear, and risk of shortened life span.  Don’t put your beautifully tanned head in the sand as I did, it’s not worth it.  

I guarantee you are beautiful with your natural skin, please embrace it, look after it, and enjoy your healthy body without skin cancer melanoma.  

Your Truly,

Ex-Sun-Worshipper

Portfolio, Invitations, and Events

Wow - May and June are always busy around here, but so far one week into May and this has got to be a record.  All good stuff, but I find myself emotionally overwhelmed and definitely humbled. 

 

I am so incredibly motivated to be all things to the melanoma awareness world - well OK, in my tiny circle anyway - that I am just rolling with this.    It is likely a good thing that Scott has been working(stuck) out West so much as I need just level-girl and blog-dog time.  ;-)  

News from around here, in no particular order; in point-form for your reading pleasure:

• Last evening one of my dear friends from high school surprised me with an email and then a facebook launch of a fund raising effort she is doing in September 2016.  My world-traveling Toronto friend, Rhonda from grade nine typing class :-)  is participating with her colleagues in the OneWalk Toronto, and she is raising funds on behalf of melanoma research.  WOW  Thank you Rhonda... I am so touched by your choice to aim for melanoma, when I know you have many other friends and family that inspire you as well.  xo

• Help Me Save Your Skin!
  Friends and Family for a Cause
  OneWalk. One Day. ALL Cancers.
  "OneWalk to Conquer Cancer™ benefiting Princess Margaret Cancer Centre is a game-changing movement to conquer cancer once and for all.  I will walk 25 kms through the streets of Toronto, united with thousands of others, knowing that together we are changing the future for all those affected by this terrible disease.
  
  As part of this walk, we can choose to have our fundraising dollars focused in one area of research.  I have chosen to have my funds go to Melanoma research.  A childhood friend of mine has battled the disease for 2 years and has turned her struggle into a focus on education and awareness http://impatientpatientmomma.blogspot.ca/
  

  I will be walking along with the Capital One team as we all choose to use our steps towards a day where those we love don't suffer from cancer."
  
  If you can, I appreciate your support of Rhonda's walk in September, for melanoma research and for Princess Margaret Cancer Centre.  Thank you
  
  
  
  

•  I have created an online Writer's Portfolio.  I have been wanting to do this for a long time, but now that I have been so fortunate as to be published in an increasing number of places, I need to be able to showcase my work in a format that is easier than sifting through this blog.  I still have plenty to blog about so I will still be here, but I am posting highlights and using the new link in my professional Bio going forward.  Please feel free to take a look, and by all means please share it with anyone whom you may know that is interested in having a new writer friend! (ahem, I mean a new friend, who is a Writer)         I am happy to have found this portfolio host site through research I have been doing for my potential writing career.  It is excellent, very user-friendly, great options for customization and SEO behind the scenes... Plus it sounds cool! "JournoPortfolio" - Italian...?  Yes please! (they are in the UK but I'm still dreaming of a future of blogging on my Tuscan Trattoria)

 https://natalierichardson.journoportfolio.com/

• Save Your Skin Foundation has asked me to be an official Spokesperson, an invitation which I am proud to accept.  We are still working out what that means going forward, but in the meantime I have added that to my list of volunteer interests on the likes of sites such as LinkedIn.  Just so you're not surprised to see that in my Bio :-)  Thank you SYSF!  I endeavour to represent you well. 
• I have been invited by another high school friend to speak to her elementary school class about sun safety and skin health awareness.  We are going to try to fit it in in June, and I already have ideas about how to make a fun little handout which includes the Dalmations from the Become a #SkinChecker campaign (with no copyright infringement of course!).  This ties in with the request from my friend at The Cancer Society office in Owen Sound, as to how we may be able to reach school-aged children.  I'm working on it J, and will be in touch with my ideas soon.  :-)
• Hoping also to help a friend by way of "sunscreen sponsorship" for a fun event right here in Meaford in July.  More on that to come as well!
• In September as well there is an exciting event in Beaver Valley, Mudmoiselle - a fund raiser for The Cancer Society.  I will soon be working out details for my involvement with that.
• The first part of June is still reserved for Sunnybrook visits for CT scans and the dreaded Gastroenterologist consult.  Nothing new on all of that.  *blech*

Thanks for reading, and for all of your good vibes, positive energy, love, and support.  I appreciate your sanction in this long haul!