Exhausted by Awareness
When there’s no bell to ring
I don’t know if you’ve heard, but October is Breast Cancer Awareness month (BCAM). We’re just over halfway through the month, and I for one am exhausted by all the awareness-ing.
Some breast cancer patients and survivors feel recognized and appreciated during BCAM, and I don’t want to take anything away from their experience. If the visibility of pink ribbons and the uptick in patient (especially survivor) stories and the mantras of mammograms and early detection make someone feel better, I’m not here to squelch those vibes. And I’m certainly not interested in returning to the days when people would barely utter the words “breast cancer” in public. I can acknowledge that awareness campaigns have made it possible to talk about breast cancer in ways that were unthinkable a generation ago.
But for many metastatic/secondary breast cancer patients, this month is a slog. There are two main types of stories during BCAM: the plucky woman who got through treatment and the deceased woman who inspires her loved ones. Metastatic patients will not be survivors and are not yet saints. Early detection and mammograms didn’t save us from cancer that spread to our bones and brain and liver and lungs. We’re the unhappy endings that few want to talk about during BCAM. We don’t need more awareness—we need more research and systemic treatment options and better support.
Some of the most egregious pinkwashing, a term coined by Breast Cancer Action to describe the way that brands and products use the pink ribbon of breast cancer as a marketing ploy, has improved in recent years. (To understand pinkwashing and why it’s a problem, I highly recommend this article.) I’m personally thrilled that the NFL doesn’t go through a charade of pink cleats and gloves and towels anymore as if it were an organization devoted to the health and wellbeing of women. But plenty of breast-cancer-advertising-trickery is alive and well this month; enjoy this round-up of beauty brand PR messages collected by writer Jessica DeFino.
If you do want to contribute financially to a breast cancer organization, be sure you understand its mission. Is it primarily about awareness, or is it funding research and providing patient support? Several that I can recommend include Metavivor in the U.S., Maggie’s Centres—the one at Ninewells has been helpful for us—and Make 2nds Count in the U.K. (Full disclosure: I am on the board of trustees for Make 2nds Count and can attest to their work in research, education, and support for secondary breast cancer patients.)
By all means, celebrate the women who have completed treatment for primary breast cancer! I have loved ones who have either just had their bell-ringing milestone or look forward to it soon. Ring away! It’s a wonderful moment and deserves to be commemorated. But also spare a prayer for those of us who will never complete treatment and ring the bell. We might be weary, feeling both marginalized and manipulated by the pink ribbon campaigns. We might be ready to get through these weeks of heightened awareness of breast cancer so that we can get back to our regular daily existence of living with it.
Treatment Updates
Here’s how treatment is supposed to work for me right now: Every month I get my bloods checked, especially my white count, and if it’s OK I go to Ninewells to pick up my targeted therapy tablets. I take them with my daily aromatase inhibitor tablets. Every three months I get a bisphosphonate infusion at Ninewells to help strengthen my bones. Every three months I get a CT scan to check whether there is any cancer progression and meet with the oncologist for the results. If there’s no progression, I can continue on with treatment for another 12 weeks.
This month, as if to underscore that it is BCAM and I should be VERY AWARE of life with metastatic cancer, all of these appointments ended up clustered together. First, my infusion appointment: it doesn’t normally take that long to complete the infusion, and the tea trolley comes round and I can read or relax. But the veins on my hands are starting to get cranky about how often they are poked with needles; it took numerous attempts to finally get a line in, and my hand is still sore. At least there was tea! Next, I had my bloods checked, but the chemo nurse called to say that my white count was too low and I needed to arrive early to have them checked again. Up to Ninewells I went, where this time the veins in my arm didn’t cooperate … and then my white count was still too low, so we had repeat the whole sequence last week. Thankfully both veins and white count complied and I’m back on the targeted therapy.
And it is scan season! After a scheduling snafu when the oncologist ordered the scan and then radiology said they never got the order, I had an appointment in Perth on Friday. The journey there was its own tale: I got to Cupar and discovered that a road was closed and there was a lengthy diversion. Worried that I’d be late for my scan appointment, I called the radiology desk and they assured me that they’d hold my scan slot for whenever I could make it. I wound my way through beautiful central Fife and had gone past Newburgh when the road was closed again—because a horse trailer (sans horse! No one was injured!) had overturned and was blocking the entire road. Wanting to help me get to my appointment in Perth, the farmer thought I could squeeze through on the side since my car isn’t that wide. Alas, my car is also not that high—and I got stuck on the rounded height of the berm without enough wheel traction. After much head scratching and attempts at different wheel angles and the collective shove of some five farmers, we managed to get my car kerplunked back on to the road and off to Perth. Oh, it was also pouring rain at this point. Of course.
The scan experience was fine, and the radiographer was lovely. After the scan, when she was removing my cannula, I asked: “I know this is outside your control, but is there a way to include a note saying that this is a metastatic patient who has a great deal of scanxiety and would really like her results at her consultant appointment in two weeks?” She said, “I’m going to put a note in that this is urgent and they need to turn around the results in one week! And hopefully they’ll be in well in time for your appointment.” I don’t remember her name, but God bless Angel Radiographer.
So that’s the next appointment: meeting with the oncologist in two weeks, hopefully with scan results, hopefully showing no progression.
BCAM Awareness: Irony Edition
In addition to appointments, my other exciting activities this month have included … awareness! (This makes me laugh for so many reasons.) During BCAM in the U.S. and the U.K., the 13th of October has been claimed as metastatic/secondary breast cancer day. Metavivor has a #LightUpMBC campaign and Make 2nds Count sponsors #ShineALightOnSecondaries, both of which invite major landmarks and buildings to light up in their colors as a way to increase media focus on advanced breast cancer.
I was asked by Make 2nds Count to do some of the media events as a board member and also a patient, primarily serving as a quote source and doing some brief recorded interviews. There’s no forthcoming fame and glory from my few seconds of media exposure, but we did get to record one interview up on the roof of the Balmoral Hotel in Edinburgh at sunset, which was gorgeous. (You can see part of the That’s TV Scotland interview here.)
Prayer Requests
Continued improvement in my post-surgery rehab. Strength and balance are progressing but still need to get better
Reassuring results and good conversation with the oncologist
Heather, thank you for your honesty; for sharing the importance of recognizing that breast cancer comes in many forms and for helping to bring secondary, or metastatic breast cancer awareness to the attention of many who may not have knowledge of it, even as you battle it yourself. Praying for continued improvement in your rehab, and that you will have wonderful scan reports to review with your oncologist. Love and hugs ❤️🙏🏻🤗
Car journey sounds horrible, but excellent outcome! Bravo Heather! Sending love