My phone rang a few weeks ago. I looked at the number and it was the cancer hospital. My stomach lurched into my throat and I picked up the phone. It was an unnamed booking clerk, calling to schedule me back for more diagnostic testing, a response to the report from my recent mammogram.
You and I know this is never good, but she couldn’t tell me why I was being called back. If you don’t tell me why, I’m going to presume the worst. Had they picked up that my cancer had spread?
Yes this is how me, a person who had cancer thinks when I get phone calls from the cancer hospital. I couldn’t get any answers, so I scheduled the tests and put down the phone in a cold sweat.
I was thankful when my family doctor called me a week later. She had just received a copy of the report from my previous scan and read the report to me over the phone. I was being called back in because of two ‘suspicious spots’ on what I call my good breast – the one that didn’t have cancer in it. Now at least I knew. I settled down a bit. ‘Suspicious spots’ aren’t great but they don’t mean that I’m automatically going to die.
I absolutely benefitted from having that knowledge from my family doctor of WHY I had been called for more diagnostics. But a booking clerk won’t tell you the why. And not everybody has such a thorough and thoughtful family doctor as I do, who would take the time to call me to read me my report. As I’ve said before, good health care in Canada shouldn’t be hinged on good luck.
Here are my wishes:
Wish #1a: I can access copy of my own damn diagnostic imaging report.
OR if that’s too pie in the sky:
Wish #1b: When you call patients back for additional testing, have someone call who can actually tell you why you’ve been called back.
Wish #1c: Speed up the time it takes to get the report from the cancer hospital to my family doctor. In this case, it took TEN DAYS. I could have walked it over faster. (It is a 48 minute walk from the cancer hospital to my family doctor’s clinic. I Google-mapped it).
Now, even armed with knowledge of why I was called back, I waited three weeks immersed in scanxiety. The tests were scheduled for a Monday afternoon. My husband and I searched for someone to pick up our son from school that day but came up empty. So my husband had to leave work early to pick him up instead. And I had to go to the cancer hospital alone. As pathetic as it sounds, with no other family support in town, I often go to appointments alone. It sounds sad because it is sad.
The whole afternoon deteriorated fast. I went for one test, a special mammogram. Then I went for an ultrasound. The ultrasound tech was pleasant enough, but she disappeared for a long period of time and I sat in the dark and looked at my images on the ultrasound machine. Two of the images had big orange writing on them that said: areas of concern.
Finally the radiologist came in. It isn’t good when your radiologist redoes your ultrasound. He then sent me back for more mammogram images. He did take the time to explain to me what they had found (micro-calcifications, could be nothing, could be something they monitor, could be a sign of more cancer).
At this point in the afternoon, I was emotionally exhausted. My boobs were tired of being squished and manipulated. I was in the room alone and was desperately trying to remember what the radiologist told me as he was telling me it. I couldn’t reach my purse to grab my little notebook to write things down. I was sitting there half-dressed in a gown trying to stay calm. I kept repeating what he said so I could remember.
He ended by saying that someone would call me by the end of the week after he’d looked at all my scans to decide if I needed a biopsy or not. I did not ask him to call me personally either way. I should have asked him to call me personally either way. But I didn’t. I was out of energy and traumatized. In my head, as he was talking to me, I was also remembering how my cancer had been diagnosed the first time two years ago. It felt like Groundhog Day. I thought – unreasonably + oddly – if I am here much longer, I am going to hit rush hour traffic on the way home.
I honestly had run out of any patient advocacy skills that I might have brought with me to the appointment. My patient advocacy well was bone-dry.
I waited all last week for the cancer hospital to call me. I carried my phone on me everywhere and constantly checked that the ringer was on. Nobody called. No news is good news, right?
If you have seen Greg’s Wings, you know that no news is not necessarily good news. Someone could have forgotten to call me. The request to call me could have been lost. At this point, I’m counting on my family doctor to call me instead in a week, when she finally gets the report.
(Note: I am not writing this to solicit medical advice or for anybody to tell me I should have been a better advocate. I KNOW I should have spoken up. But I didn’t. If you are a health professional, I ask you to think: what can I personally do to change this process?).
My final wish:
Wish #2: Call patients back with results no matter what. Particularly if it concerns a biopsy or cancer. Have someone call who can explain the results and answer any questions.
Because not calling me back does not help my precarious mental health. I’ve thought of nothing else the past week. Not calling me back does not give me closure so I can move on with my life. It is just a big gaping unresolved hole. I just need someone to call me to say: we’ve decided that you don’t need a biopsy right now. We are instead going to monitor this in six months. Then I can calm down.
Because once you’ve had cancer, getting cancer again is not a distant concept. It is something that can happen because it has already happened. It is cruel and unusual punishment to leave us patients hanging.