I feel so guilty about not being able to be there for my children in the truest sense that a Mom wants and needs to be. I often hide away to work on curriculum or online courses to cope. It is an avoidance technique that allows me to be busy and to push away the thoughts that threaten to quell any happiness. Yesterday after chemo, I went home and signed up on a TNBC support site knowing that it was time to seek out answers and support from those women who have done that and been there. It didn't take long for a few ladies to offer their kind support and some information about their own diagnosis. Each member it seems has documented their entire journey on the bottom in the signature line. So many woman have gone through what I have and some of them are incredibly young. Triple negative diagnosis seems to have its own set of rules and there are limited resources for combating this rarer form of cancer. Some have done genetic testing and information would dictate that their body does not have the ability to to fight off the genetic mutation when it presents itself. It can be very aggressive or be a slow mover. http://www.tnbcfoundation.org/understandingtnbc.htm
I have considered my mortality many times over the years since my first diagnosis. I suppose I could have simply laid down and refused to get up but I didn't. I chose to find a way to make my life count. So began the political fight of my illness in February of 2010. I went to Queens Park with the ONA (Ontario Nurses Association) just after my last radiation treatment to defend the nursing layoffs at the LRCP (London Regional Cancer Program) as a guest of Andrea Horvath. She would also come to an event to address the layoffs on the hospital lawn. I spoke to the media, visited with politicians, showed up at the annual hospital meeting, and started a petition through FB. I had a meeting with Brian Orr (then director of the LRCP) with Carol (who passed away in October last year), met with the LHIN's Chair Michael Barrett a number of times and eventually found that the Board of Directors held ALL the power. I even spent a weekend in Toronto with a Breast Cancer Advocacy and took training in how to conduct myself during a visit to Queen's park at the annual event where you could make appointments and speak one on one with the MP's of your choice. I spoke to Chris Bentley and Lauren Broton. I liked Lauren. I wrote to NDP Mr. Layton just weeks before his death and he personally wrote me back..... it would take months for Deb Matthews to respond to me. Eventually we got 8 jobs saved!!! I tried to combat the hiring of the two CEOs who made extra-ordinary wages... but I had already done enough and there were others to take up the cause. That year, I was a guest on the ONA Gay Pride Float. My cancer had given me a purpose and an opportunity to make something right. The nurses all know me now at the LRCP and will always come over to say hi and to give hugs. My friends from Middle School would also tell me how strong I was in my early years always trying to advocate for others and paying for it in some small personal way.
The year 2010 also brought me in touch with an amazing team of women breast cancer survivors after a chance meeting in the 'Braz for the Cause event'. Rowbust brought me in touch with a number of amazing women but I had already been through enough and just wanted to have fun. The coaches had other ideas about pushing the limits to get us in top notch physical condition and to compete in the International competitions. The year 2011 had me competing in the Canada wide competition in Welland with the team and we took home gold.... only my family wasn't there to witness the event and I felt somehow that the 3 days a week commitment had taken valuable time from them. Although they supported me whole-heartedly, I felt selfish and decided that the atmosphere was not in keeping with what I had expected a survivor team to be. I tried to begin with the team the following season but after speaking with Max, who supported me either way, it was time to move on. The Waves team was a great pick and I immediately felt connections with many of the team members and my new soul friend James. We both sit in the engine room of the boat and paddle like we mean it in a friendly and loving way. James is a dietician now with the cancer unit and I get to see him almost every visit!!! Yesterday he came in when I was having my infusion and brought the basket of cookies which he shared with us and our new friends in the station across the aisle . Yes I am still laughing and being a clown much to the chagrin of my nurse. He is so amazing and I totally adore him. He is sad that I will not be paddling this year in the boat but I have promised to lend him my new paddle for him to try out. Maybe next year... I will put it on my bucket list.
While I may have lost my full-time job as an electronics engineer due to the constraints of my physical ability to do my job, I did not want to be on long-term disability and so, with the help of an amazing insurance lady, I got back to teaching at the local college with them offsetting my college income. It gave me a new purpose and I began to ask my boss about the possibility of going back to school. He thought it was a great idea and so I tried to apply in 2010 but was late by a week. I tried again in September of 2011 and was accepted to Western Faculty of Education for the 2012 fall intake where I worked hard and achieved a Teaching Certificate with distinction. I then took two additional courses in Special Education and Green Industries. This while in the beginning of my new journey with cancer.
My bucket list is not long but it is long enough for whatever time my mortal life has for me..... Anna this morning reported getting up in the middle of the night to fix the TV but knew she had done it through her soul mate who left his earthly confines on Thursday. Yes, she has her angel looking over her. My daughter knows, through pre-arrangement that I will do something after I cross that will let her know that I have moved on. Hmmmm, while I know we talked about moving pictures and possibly her hair, I am sure I can come up with something more creative!! I am planning for my future while living in the present and it is something we all forget to do when we set life goals..... sometimes we can only focus on the goal and forget to enjoy all the side trips and adventures along the way. I have done a lot with my life and have a lot more to do. I will accomplish what I can and promise myself to take time out to enjoy my life with my family. Carol would continue her advocacy right until the last minute of her life.... making notes in the fears that no one would take the responsibility of the cause she started. I have learned sometimes if you take a step back and realize that you are not the only one who others can depend on, it gives you permission to just say no to the many requests you get when others feel they have no voice and to hand the reins over to someone who is equally able to help. I, like Carol never asked for help and her life taught me to let go and not try to be everything to everyone.
The sun is shining this morning and I am enjoying an early morning cup of Joe.... Max has just come downstairs and is puttering around the kitchen making noise. My head aches from the chemo.... it causes my already stuffed sinuses to swell, my hearing to be super human and my fingers to feel like clubs on the keyboard. Let's not talk about the skunks this summer and where that takes my olfactory system!! Today is an new day filled with new opportunities for laughter and fun. It is also a day when a friend of ours will be popping in for a visit with a set of graphite golf clubs for Max... he doesn't know I have asked for help yesterday on FB and that Colleen and Richard are generously donating a set after Max broke his second golf club on Saturday. My Max will be so excited, I can't wait. xoxoxo
I dedicate this blog to all those souls who step out of their comfort zone to help others... their reward for their efforts isn't always acknowledged or even appreciated. They are the catalysts for change. It takes strength and conviction to make a difference. Do something nice for someone today and make a small difference in someone's life... remember, we are all on a journey and you never know what those kind words will do for someone's day. I also dedicate this blog to Anna and Sharm, whose soul mates are now looking down on them. They aren't far away... xoxoxoxo