So where does my journey start?

November 5, 2009, is when cancer first impacted my life. After several operations and two years of misdiagnosis I finally had an answer to why I’d been in so much pain. I had a Synovial Sarcoma in my left arm, 2 cm in size. Although a great shock, I finally had an answer and realized I wasn’t going completely insane.

The wonderful team at the Royal Orthopaedic Hospital in Birmingham headed by Dr. Roger Tillman did an amazing job and I underwent removal of my radial head, then underwent 33 radiation sessions.  Radiation was debilitating, but with being constantly kicked in the butt by my late husband John and family, I managed to kick cancer’s ass for the first time (Cidney as I now call it).

In February 2012 we took another curveball from Cidney when John was diagnosed with terminal inoperable bowel cancer. After battling the disease for just three months, with a legendary attitude, John sadly passed on May 31, 2012. His encouragement and his attitude and bravery has always stayed with me and always will.

So, let’s skip forward to 2014 when I followed my dream and came to Canada to start a new journey. I attended Mohawk College where I graduated in business, making some amazing friends on the way. In 2015 I met Chris, who proved to me it was okay to love again.

Halloween, 2016 - After having a few more pains in my left arm I thought it was sensible to follow up with my GP and that’s when Cidney hit for the second time. After some scans I was told that my cancer was back in my left arm, three times the size that it was originally. The amazing Dr. Ghert spoke with me and Chris and really there was only one option: amputation above the elbow. I was on board to get rid of this festering Cidney once and for all.

Surgery went well and I did not need any treatment. I got back into the swing of things after a month and things seemed to be going really well.

So that brings me to January, 2018. After undergoing a routine CT scan I was found to have a spot on my lungs and 2 on my pelvis. Seriously, Cidney must love me because it just keeps coming back.  My diagnosis is to have chemotherapy as the tumours on my pelvis cannot be removed. However, I will not be beaten and I will do everything in my power to kick its butt.

Chemo treatment was very intense started with 5 rounds of 3 days, 4 hours a day, with some pretty crazy side effects. After the first and last treatments I contracted some infections which put me in the hospital for a week at a time. You definitely get to know your body through this disease and need to listen to it (which I have not always done).  

After chemo they hit me with some radiation, which worked on the lung but just kept the pelvis stable.

It was a heavy 6 months but things got better. I got stronger went back to work and thought that would be it for awhile. Sadly, that’s not quite what happened. Although the lung tumour was destroyed, before that it must have metastasized to a lymph node next to it, where it measured 3.7 cm long and 2.5 cm wide (this was discovered end of Dec 2018. So, more treatment had to happen: they hit it with another 3 rounds as before and the scan in Jan showed that the chemo again was working and shrinking the mass).

A few weeks later, in February of 2019, I started to feel pain in my chest, head, neck, etc. so I contacted my oncologist to get checked out. Before we could meet, everything became so intense so quickly that I ended up in emergency again with a heart rate of 175 and felt so ill I think I fell asleep in triage with the pain.  As always, the staff at Jurvinski were amazing, working quickly to assist me.  They scanned me and could not believe that the mass which had shrunk was now doubled in size in just a few weeks. I was admitted and have just spent another week recovering. I can feel that the mass has moved and is impacting on my throat and I find it hard to eat and swallow sometimes.  I am currently undergoing radiation in the hope that it will again shrink, then there will be more chemo, although different now as I hit my lifetime max with certain chemo.

People going through this journey all have different experiences and tales to tell. We should share where we can as it helps to talk and you learn from others and their loved ones. It is not just the patients who go through this horrible journey but all of our family and friends. I have the greatest support and feel honoured for that, never taking anything for granted. I hope my words can give comfort and help to people struggling with this disease.  Sarcomas are a rare cancer and there is not much info out there so if there is anything I can do to help, I will try.

This is my story and my experience and if I can help anybody be more positive than that is the main purpose. I have a blog which I try to update as I can. Please feel free to check it out at http://cooperscrusade.com/