Picture above – Colleen with Sue Cox at Colleens bell ringer dance party – November 2015
In February 2014, after finding a growing bump on my scalp, I was diagnosed with stage 3 melanoma. I immediately had aggressive head and neck surgery at Sunnybrook Hospital where the surgeon removed a 2-inch circle of my scalp; additionally removing 14 lymph nodes as well. Two weeks after this surgery, we got more bad news; melanoma was confirmed in two lymph nodes. The Sunnybrook medical team told us that I needed adjuvant therapy which included aggressive radiation and experimental drugs right away.
A ton of information was thrown my way that day. I heard it but could not absorb it. It was so overwhelming! My husband and I went home to North Bay to think things over. With tears streaming down my face about what could be my disparaging future, I took to the internet. Everything online was doom and gloom. I read everything – from medical journals to personal blogs. In the midst of despair, I found the Melanoma Network of Canada, a credible website and organization with a Board of Directors comprised of the brightest in the business. Desperate to talk to someone who would understand my situation, I reached out to MNC. Twenty four hours later, Annette Cyr, founder and Chair of the Board of the Melanoma Network of Canada contacted me directly with the intention of connecting me to peer-support.
Twenty-four hours later, I got a phone call from a complete stranger, a peer supporter from the network, who single-handedly changed my outlook going forward. In our two hour conversation, Sue Cox covered everything – she listened to my entire story, in detail, overviewed the latest research and even “kindly kicked me in the pants”. She gave me current information and realistic hope that I so desperately needed to hear. She told me that there was significant cutting-edge research happening in melanoma: that weirdly, it was a “good time” for this serious diagnosis (at least a better time than in the past). After an incredibly uplifting conversation, with a healthy dose of reality and optimism, Sue told me to pick myself up from the kitchen floor, put on my best head scarf and go to the local OHL game that night.
Sue and I later met face to face in the summer of 2014 when I was having radiation therapy. That day we coincidentally both brought each other orchids… flowers known to represent love, beauty and strength. That day we laughed more than anything else. In the fall of 2015 Sue and her family travelled north to North Bay to attend my “bell ringer dance party”, post Nivolumab treatments at PMH. It is now over 48 months since that first desperate phone call. That phone call to MNC changed my life forever. I had to displace sadness and prioritize strength: put one foot ahead of the other, hopeful that things would be okay. Since then I have had one recurrence and consequently have been part of the cutting research trials discussed with Sue that first day. I am doing extremely well now in 2018. The docs are pleased and I am happy and hopeful.
In addition to the personal peer support given me, I so appreciate that MNC does advocacy work for all melanoma patients. The MNC is the voice that has helped with the funding of drugs like Nivolumab, my wonder drug. Because of this political activism, many are now able to reap the benefit of research such as immunotherapy. Undoubtedly there will be more work to do: more people to support, more research to fund, and more money to raise, and MNC will be there. The work of MNC is both personal and political; its work has lead many people including myself to hope and health.
For More Information on the Melanoma Peer-to-Peer program visit www.melanomanetwork.ca/peer-to-peer/
Story provided by Colleen Piekarski
Top Image of Sue Cox and Colleen – Colleen’s bell ringer dance party – 2015
Below: The Piekarski Gang – summer 2018
