On October 1 I had the opportunity to share my story with MPP’s and staff of the Ontario Provincial Government. I was the guest speaker for an advocacy reception hosted by Rethink Breast Cancer. The issue that they were hoping to bring awareness to is that there is a huge need for province wide nurse navigators for young women diagnosed with breast cancer. I didn’t get a chance to tape my talk so I have included the text of the story I shared instead. I was honoured to be there and hopefully help make some change for newly diagnosed cancer patients.
In 2011 I gave birth to our second daughter Adria. That year kicked off with the excitement of a new baby and watching our older daughter get use to her role as big sister. I started out my mat looking forward to life with our girls and all the new adventures it would bring.
I never expected one of those adventures to be a cancer diagnosis. What started out as a year of new life ended with me staring at my mortality in the face.
When Adria was only 8 months old I was diagnosed with invasive ductal carcinoma. I had a tumor that was almost 3 cm and had already spread to my lymph nodes. I still remember the day my GP called me, only 2 hours after going for a breast ultrasound for what I thought at the time was only a blocked milk duct as a result of breast feeding the baby. Turned out it wasn’t.
I heard her say that I needed to go for a biopsy to confirm that it was breast cancer. In that moment could feel my adrenaline starting to kick in and my heart start to race. I think I even stopped breathing for a minute as her words sunk in. I continued to hold my breath for the next few weeks as we went through what felt like hundreds of tests and doctor’s appointments.
It was the start of so many big changes for our little family.
I ended up going through 5 months of chemo, having a mastectomy, radiation and then delayed breast reconstruction. My tumor was estrogen positive so I am also on Tamoxifen for 5 years.
In the middle of all this, my own mother who was always a source of strength for me, passed away from cancer related complications while I was in the middle of going through chemo. I wasn’t sure how much more my heart could take. But I knew that my choice was clear, I was going to kick this and enjoy a full and happy life with my family. Nothing was going to stop me.
It was a challenge – and our daughters were so young. They wanted to know why mommy had no hair and so many band aids. We tried to keep things normal for them – even though it was far from normal. We had daily kitchen dance parties to keep my spirits up. They would consist of me dancing around in my pj’s,bald following a routine my 5 year old was leading. It was fun and my girls were my ray of sunshine through it all.
As was my hubby, he drove me to all of my appointments and treatment sessions. He had to miss work sometimes which was stressful since he was the only one working while I was in treatment. I was lucky because he never complained even though I knew he was anxious about what this all really meant for us as a family and if I would be around to raise the girls with him?
My diagnosis affected all of us in so many ways.
We were completely overwhelmed by the sheer amount of tests and appointments I had. It was like a full time job to keep track of it all. My husband and I had to research all these new drug names and read up on everything we were told. It was confusing and scary. How did I know if every doctor I saw would know exactly what was going on with my treatment. There were so many people involved in my team and I didn’t want anything to fall through the cracks. It was hard to make so many life changing decisions so quickly.
Thankfully I was one of the few lucky women who had a nurse navigator during treatment. In fact most of the women who I have met didn’t. Their experience with treatment was very different than mine and I truly believe it is because I had Christel, my nurse extraordinaire guiding me through it. She is the nurse navigator for the Pynk Program at Sunnybrook. She connected me to a fertility specialist and a plastic surgeon to discuss all of my options before treatment. She explained things to me when I was confused, kept track of my appointments and talked me through many teary conversations about what was happening to me during treatment. Treatment was the hardest thing I have ever done and I can’t even imagine how much more difficult it would be without a nurse navigator.
While in treatment I started to feel like I needed more support from other young women. Honestly it was very hard to find anything geared ay my age group since the majority of women diagnosed are over 40.
I looked into Rethink Breast Cancer’s programs and I decided to try their Rethink Connects peer support program. It was a huge help for me, so much so that I have since decided to become a peer volunteer myself and I really love it. Through Rethink I have met a community of strong young women on this same journey and we support each other in so many ways.
I speak to you today from my own experience, my own journey but at the same time I stand here on behalf of all young women with breast cancer.
When diagnosed so young our lives as we know it change forever. We are just starting out, just starting new jobs, new families and all of that gets put on hold to make it through the fight of our lives. This journey is one that can be painful, frustrating, and tiring for us and our families but with the right support in place we can find our strength, our voice and our ability to make it through one day at a time.