I call Tamoxifen hot flashes: bonfires with a flood. Because when one hits you, it feels like your entire body is going up in flames right before it’s soaked in a flood of hair-flattening, body-drenching sweat. It’s horrible and exhausting, never mind totally gross. And there was nothing I wouldn’t do to avoid having one. Even giving up sugar.

I wasn’t feeling the hope. Not this morning. My pre-breakfast state of mind was consumed by a knot in my stomach, a persistent sense of anxiety and frustration, and the crappy reality that I really and truly don’t know what I’m doing with my life or what my future holds.

I’m a Tamoxifen fail. I quit taking the drug just shy of my five-year prescription’s halfway mark. The estrogen-blocking pill fried my short-term memory within the first 14 days and then, tormented me daily with its version of Jay-Z’s “99 Problems.” And lucky me. I experienced every single one of them.

Trapped beneath my bra, cotton t-shirt and cropped pants, pools of sweat mingled with dust and grime before being absorbed into my clothes and skin. Despite the cold showers I soaped up under twice daily, one before heading out into the wee hours of the morning and another again in the dark of night before crawling under a thin sheet to sleep, the dirty damage was done. A skin fungus had formed. I had ringworm.

Is there anyone out there who feels like I do? Like they’ve lost a part of their memory to tamoxifen, chemotherapy and/or radiation and will never get it back? If you are like me, do you ever wonder where your memory went, like, is it on the beach in Puerto Vallarta or maybe it took a sabbatical and didn’t provide a return date?

The past year allowed us a return to a more normal routine in a lot of ways, and our blogs from 2022 reflect that. Posts about being able to gather for the holidays, get mastectomy tattoos, and having in-person healthcare visits were some of the topics of our top 10 blog posts from last year.

Growing up, every time I passed a mirror I would pause and stare at my reflection. I got busted for it too. A lot. My mom and aunties told me it wasn’t nice to look at myself, that it was vain or to cut it out—sometimes they said all three statements at the same time. To be clear, I wasn’t always admiring myself, I mean sometimes I was, but after I turned 12 and went to junior high school, my covert glances were more about me feeling insecure than anything else. I had to make sure I didn’t look weird, that my bobbed hair was tucked behind my left ear just so or that my highly Ten-O-Sixed skin wasn’t shining like a too-bright light. I was looking because I needed to reassure myself that I looked good. That I was good enough.

“Breathe.” “Just breathe.” If I had a dollar for every time someone told me to do this —while I anxiously waited for my biopsy results, had another round of MRI exams, before and after surgery, throughout the months-long treatment and the years I spent swallowing a daily dose of Tamoxifen — I’d have a down payment for a vacation home in Mexico.

Nothing can prepare you for the onslaught of side effects the tiny little hormone-blocking drug Tamoxifen can create in your body and your life. At least that’s how I feel…now. When my oncologist first handed me the five-year prescription for the 10-mg daily dose along with a pamphlet listing 40-odd side effects, I thought differently. Then, my oncologist explained how Tamoxifen works and what I may experience—including hot flashes, weight gain and irregular periods—in such an airy, breezy way that took, maybe, all of 45 seconds to share I figured, okay, I’ve got this. This’ll be no big deal. If there was anything to worry about my doctor would warn me. Thousands of women pop this pill every single day without complaint, I’ll be fine.

Joycelyn Merkley, from Shelburne, Ontario, describes herself as: a girlfriend, mother, grandmother, sister, and daughter. She has lived 53 years embracing these roles when in July of 2021 she was thrown into another role: breast cancer patient.

The only thing I miss about Tamoxifen is not getting my period.

2021 was the year of the patient voice and patient advocacy. Across Canada, we saw patients become more active participants on their healthcare team. Whether due to the current circumstances, because of personal interest, or because of unfortunate situations, patients are increasingly becoming involved in their care. This was also reflected in the blogpost that we published in 2021. Overall, we published 23 posts that came from breast cancer patients and their various experiences dealing with their diagnosis. It’s no wonder that so many of these stories were part of our top blogposts of 2021. Even the posts not written by breast cancer patients reflected empowering breast cancer patients to take charge of their health.

Chances are, if you have breast cancer you’ve heard about Tamoxifen. I remember the first time my oncologist talked to me about the chemo-infused hormonal-therapy drug. It was during my weekly check-up when I was still having daily radiation. He explained that because the cancer cells found in my right breast were 95 per cent estrogen and progesterone receptor positive, my body’s natural hormones could attach to the cancer cells and help them grow. Obviously I didn’t want that, so I said yes to the drug without even hesitating.

If you are at high risk for developing breast cancer because of family history or because you have the BRCA1 or BRCA2 gene mutation, you have several preventative treatments to consider. These options include close surveillance, chemoprevention, and prophylactic mastectomy, with or without breast reconstruction. 

Self-care. It’s not a phrase that even flickered across my radar when I was diagnosed with breast cancer, let alone after my surgery or during treatment. But it should have. And, no, it’s not a selfish act.

Two days ago, my lower back seized and then, seemingly stuck. Never have I ever had back problems. Yet, here I am frozen with body-gripping spasms. I can’t roll over in bed, stand up straight or even wipe my bum without yelping loudly. Thank God, and I don’t say this lightly, I was able to call a friend (who suffers from chronic back pain), who called her chiropractor, who graciously booked me in at the end of his appointment-packed day.

2020 was eventful, to say the least. It was a year where many had to shift and pivot from their everyday normal. Appointments were cancelled, surgeries were delayed and rescheduled, and patients found themselves having to access their doctors and healthcare team through a screen. Breast cancer patients had to not only worry about their risk of contracting the COVID-19 virus, but they also had to maintain their cancer care as best they could, something that was a challenge both mentally and physically.

I have been struggling with my body image these last 8 weeks. The funny thing is that it’s not with the two scars I have running across my chest. I have actually adapted well to that change, even with my right scar being lumpy and misshapen. What I have been struggling with is my weight gain thanks to Tamoxifen. Without estrogen, my mid-section is taking on the appearance of a barrel. A barrel made of pudding, with an oatmeal crust! Having always been fit and healthy, I am finding myself disturbed by this body morphing of mine.

I hope I can write this column without crying. Or at least if I do get emotional, that I won’t need to stop a million times while I wait for the sobbing to ease up so that I can see clearly enough to continue typing. And no, I’m not being dramatic.

Breast cancer made my hair thicker. And wavy-er. Not right away obviously. It’s not like it was a special prize I was gifted with to make up for the shock and fear of being diagnosed with breast cancer.