The Cancer Waiting Game – My Results are Finally Here
*Edit 26.06.17: My results have been downgraded! Click here to read my latest post 🙂
Knowing that I have cancer inside me, and yet I have to wait days, weeks, even months, to find out what the solution is… terrifies me.
I first found out I had cancer on the 14th of April. I was then referred to a specialist to have a colposcopy. This was completed on the 3rd of May.
Apparently, this was classed as an urgent referral. Now, just a mere 47-days later, I have an idea on what my treatment will be.
I’ll admit, that I’ve stayed relatively calm throughout this entire waiting game. The main reason is that I knew we had caught
I also kept thinking how lucky I am, and that there are people out there with far worse health issues than me. I have no qualms about having to wait for my surgery at all. That doesn’t concern me.
But having no communication or follow-up from our healthcare system does.
Here’s the part where I will be brutally honest.
Since having that colposcopy, no-one has been in touch with me to discuss my results.
And that pisses me off.
Because as if having cancer isn’t hard enough, I’ve been left in the dark.
Because every day that I wait, time goes by slower than before.
Because knowing an outcome, would feel like one step forward.
After my appointment with my specialist, I had been told I would receive a phone call with my results and a follow-up letter. Admittedly I didn’t entirely know if that would be from my doctor, or the Manukau Counties District Health Board (CDHB), but I knew I had to wait.
So I waited.
And waited some more.
Weeks went by. It got to the point where I started wondering if my results had been misplaced.
I called the nurses at my doctor’s practice. One of the nurses explained that there were some results against my patient file, but they were still awaiting the official letter with my results.
Another week went by.
I had to take my little girl to see my doctor so I checked with her then. My results still hadn’t ‘officially’ arrived. She checked my notes and it showed that I had adenocarcinoma in situ CIN 3. But still, no letter.
My doctor gave me a contact number for the Manukau CDHB.
I rang them.
It’s hard when family and friends started asking me where my results were. I felt like a fool. As though, perhaps it appeared that I wasn’t concerned for my health, or that I wasn’t actively following up.
I kept thinking, surely most people would know by now?
My husband was becoming increasingly frustrated. “Get on the phone to them every day,” he would say. I understood how he felt, I completely felt the same, but something kept telling me not to be a brat. That there were people out there that needed more help than I did.
That their health was critical, I knew mine wasn’t. I wasn’t going to die. So I compromised. For the sake of my family, and my own sanity, I called a couple of times a week.
It wasn’t until the 26th of May, that I started to get some answers.
I phoned the Manukau CDHB and they advised that I had been placed under clinical management and that my results were put through a virtual clinic on the 24th of May. This is where they would be discussed with a group of doctors. From there, they would go through to the surgical booking team.
Again, I was told someone would be in touch.
This ‘someone’ never did.
They had a lot to answer for.
I called again, and finally, I received an update. An update with some meaningful information.
That day is today, the 31st of May.
It turns out that I am indeed on the urgent waiting list. This means that within the next 2-4 weeks I will receive a letter (you know I’m doubtful that I will!) with the date and time for my surgery with the gyno team.
At this point, nothing had even been confirmed – even though I assumed I was having surgery, I hadn’t actually been told anything.
I asked the Manukau Counties DHB what type of surgery would be taking place, and they explained that I would be booked in for a cone biopsy.
A cone biopsy is performed under a general anesthetic where the tissue in my cervix is cut in the form of a cone shape and removed (hence the name, ‘cone biopsy’). The tissue is then sent off to the laboratory for testing to make sure that all of the abnormal cells have been removed.
All going well, that should be all the treatment I need.
So it’s back to the waiting game for now.
But you already know that I’m not putting my hopes on receiving a letter… I’ll be calling the Manukau Counties DHB myself in a few weeks time to get an update.
Until then, I’m just thankful that this little bump in the road hasn’t been any worse.
See cancer? I told you I’d beat you!
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ABOUT THE AUTHOR
Kylie is a survivor. She’s endured events that no-one should have to experience. That’s why she wants to share her story; to help other women live beyond their pain so that they too can take control of their life, and live the life they deserve.