What does it feel like when you are told a treatment stops working and there is progression?
Nine days before our wedding, I was told that after being in remission for four years, Tamoxifen had never worked for me. The pain that I had been feeling in my spine and in my hips had been the cancer eating away at my bones. My cancer had not only returned, but it had spread into my bones from my head to my toes. I have metastatic breast cancer.
I got the call a couple of weeks after my 31st birthday. My oncologist started by saying ‘it doesn’t look good’. I swore. A lot. I spent the following week in the hospital, getting scans and having procedures. I walked down the aisle at my wedding, towards my groom, with stitches in my head, knowing that he was going to be a widower way too young.
Stage 4 is a different beast and the same way that I didn’t understand what it meant to have cancer before my original diagnosis, I had no idea what metastatic disease was like before being told I had it.
It is clear that my medical team is trying to prolong my life, not save it. There is no cure. I am scared and the only thing that changes day to day is how well I manage to stifle the fear.
To be honest, after I was told that the cancer had returned, there was the slightest bit of relief; I could stop waiting, and finally focus on dealing with what we are all fearful of after treatment is over; progression.
How would it feel to learn that a promising drug treatment for your cancer will take another year or two before it can be available to you?
I don’t know if I have a year or two to live so I can’t afford to wait a year or two for the availability of a treatment.
When I think about talking to those responsible for making promising drugs available, I often think about the line from the movie Erin Brockovich. She is asking the defending law firm how much each of their body parts are worth; “So before you come back here with another lame ass offer, I want you to think real hard about what your spine is worth, Mr. Walker. Or what you might expect someone to pay you for your uterus, Ms. Sanchez.”
I often picture myself sitting face to face with individuals who might have a say in when a treatment becomes available. I fantasize about asking them how much their lives are worth. How do they suggest I pass my final days knowing that a treatment exists, but my life just wasn’t worth enough to make it available?
My husband and I have discussed our willingness to up and move if it came down to it. The downside is that there is no guarantee. Is it worth moving across Canada or to another country in hopes that a treatment will work? Hopefully, it won’t come to that.
What’s the financial cost or financial impact of cancer mean to you?
I was diagnosed with breast cancer less than 2 years after I graduated university with three degrees. I had racked up a tonne of student loans and now I was going to be off work for a year. How was I supposed to make a name for myself and start paying off my loans while I was in the hospital with cancer?
After treatment, I went back to work until my subsequent four surgeries were spread out over three and a half years. At a time when so many of my peers were getting promotions, buying houses and shopping for new cars, I was on sick leave more than I was at work.
Just when it felt like we could stop playing catch-up with costs, I was diagnosed with stage 4 cancer and had to stop work permanently. Along with the loss of a second income, comes added expenses from being sick. I have travelled more than 2000kms back and forth to the hospital this year alone. Massage therapy from an RMT specializing in oncology has helped the bone pain in my spine but the therapy is not covered so often times I go without due to costs. We have spent thousands of dollars between hospital parking, premium healthcare benefits to cover the myriad of expensive drugs that I’m on, in addition to other therapies and supplements that aren’t covered.
Financially, cancer has so many additional costs outside of a few prescriptions.
To learn more about metastatic breast cancer and access to treatment options, subscribe to our emails.