Finishing my holidays in January 2020, I set about attending to those annual tasks on my to-do list before going back to work. Dentist appointment - check. Eye examination - check. – check. from age 50, but here I was being super thorough at age 47 electively undertaking mammograms. I’m a nurse after all.
I had my mammogram, but then I got a call-back. "Lots of women get asked to come back," the nurse told me on the phone. "Often it's just to get better pictures on your mammogram. Try not to worry. But do allow four hours for the call-back appointment." Right then and there I WAS worried. Four hours for nothing to worry about? And within a week of the initial mammogram?
I told myself to be reasonable. I had no symptoms, no lumps or bumps, no pain. I sat in the waiting room, with all the other women who also had a call-back. I felt sick.
One-by-one we had repeat mammograms - the lucky ones were allowed to get dressed and leave. The rest of us waited. As the group got smaller, I knew they'd found something. Soon a kind nurse came and took me to a private room and told me they'd found calcifications in my breast, that it looked like early stage ductal cancer. A biopsy under ultrasound would confirm diagnosis, but she said "nurse to nurse, I would bet my house on it being DCIS - ."
I went home. I told my husband and I sobbed. The moment I could muster the strength to stop crying, or perhaps when I'd simply run out of tears, I did what I do best. I scanned journal articles, I read every appropriate website and I educated myself on DCIS, prognosis and treatment options.
I returned for my official results, which were as the nurse predicted – DCIS. I was prepared, and I knew what options would be offered to me - lumpectomy and radiation or some kind of mastectomy. The DCIS was extensive, and the doctor giving me the results indicated that he would lean towards mastectomy, but it was my decision.
Justine's daughter was keen for her mum to get a breast re-construction after her mastectomy. Source: Supplied
I decided that the best course of action for me would be mastectomy of both breasts. Some people asked me why I would want to remove the 'innocent' breast? From all I'd read, I knew too many stories of women who'd undergone lumpectomy or single mastectomy only to return a few years later with DCIS or invasive cancer appearing in the remaining breast. For me, I wanted this to be over. I wanted to give myself the best chance of survival and I didn't believe that my mental health would do well with a constant state of waiting for the axe to fall.
Then, the next decision to be made was whether to 'go flat' or be reconstructed. I cried some more, and when I felt slightly braver it was time to tell my 12 year old daughter. It was one of the hardest parts. I could see the fear in her eyes. I felt guilty putting her through such worry at such a young age. We talked about the options of going flat or reconstructed, and she broke down. I asked her why she was crying. She said "you have to get reconstructed! Otherwise you won't look like my mum."
I found a wonderful surgeon and within four weeks I was checking into the hospital and mentally giving myself over to the professionals conducting my eight hour operation.
When I awoke after the procedure I groggily looked at my chest which was heavily bandaged and glued. I felt strangely calm. At least it was done, I had survived, and actually the pain was minimal. I stayed in hospital for six days followed by eight weeks off work to recover at home. I looked forward to having family and friends visit to cheer me up. It was also going to be my 48th birthday, and so a small celebration would be well-earned.
Justine said the support of her co-workers helped her after she went back to work. Source: Supplied
But then COVID-19 hit. Suddenly my recovery looked a whole lot different. No one could visit. I couldn't go anywhere. I was also afraid for my own health - as someone who'd just had a major operation, was I more vulnerable? As a 'cancer patient' would I be more at risk? I was reading messages from my colleagues about the seriousness of the situation, and the changes being made to our hospital and to healthcare in general. It was terrifying. I started projecting to the end of my recovery period and wondered whether I'd be sent to work with COVID-19 patients. I felt guilty for putting my fears ahead of the desire to help my colleagues.
My follow-up appointments were via virtual platforms and this alarmed me. My surgeon was trying to see my scars and reconstructed nipples via my mobile phone that I was trying to hold in exactly the right position to get a good view. I was frightened about having a wound breakdown, or an infection and being forced to seek help online. I had my recovery physio appointment also virtually and while it was wildly amusing watching the physiotherapist demonstrate the various exercises and stretches on her treatment table while propping her own phone on her desk, I worried that I wouldn't be doing them properly on my own. It was surreal.
After eight weeks of a somewhat lonely recovery, I went back to work. While I'd been fairly open about why I was going on leave, I was filled with a sense of trepidation. I didn't feel remotely used to my new breasts, they simply weren't the same. I wasn't sure how I felt about them, let alone be ready for the thoughts and opinions of others. These new breasts, while beautifully constructed, didn't feel or look like mine, and they were oh-so-numb. I had known that all of the nerves would be removed with the breast tissue, but I hadn't thought about what it might be like to live with a part of your body that had no feeling.
Once I was back, my nursing colleagues were amazingly curious. "Tell us about the surgery! What was it like? How do they look? How do they feel? What does a nipple reconstruction look like?" and in the spirit of sharing, I told them as much as I could. Nurses are nurses - we like to understand the physiology, the repair phase and the marvels of plastic surgery - and so, just once, I gathered my closest colleagues and I removed my shirt and bra and showed them. We marvelled together at the surgical repair, the amazingness of the nipples, and the altogether wondrous skill of my surgeon. And it felt good. Real and honest enquiry and care.
But not all people have approached it the same way. A number of people told me how lucky I was to be able to have new, perkier and uplifted breasts. Others asked me if I still had to wear a bra. Such comments made me feel odd - after all, nobody wanders up to someone with a prosthetic limb and tells them how lucky they are to have their new leg/arm and how great their prosthetic looks, yet people seem to feel that this is OK with a breast. We all know that the prosthesis could never take the place of the original limb, will never be the same, however useful and necessary it may be. Strangely, a new and 'prosthetic' breast isn't acknowledged the same way. It is seen as improved on the original or something others would like to have. The loss and grief that I feel for my original breasts is strong, sometimes overwhelming. My breasts were part of me. They nurtured my child, and were a source of pleasure for lovers, were part of my shape and who I was. To have others tell me how lucky I am to have implants feels ignorant, and arrogant. I realise that those who've not been through an amputation of any sort can struggle to understand, and their comments are not meant as slaps to the face. People mean well and are trying to find the positive, but years of nursing tells me that the preferred alternative is to just simply acknowledge and be present in the space that is grief filled.
Having cancer, and losing my breasts has been a profound experience. It showed me what it is like to be drowning in extraordinary darkness, but also gave me glimpses of profound love and selfless kindness from others. While it sounds clichéd, I really did begin to understand the properly important aspects of my life and let go of things that don't matter. I was reminded of the fragility of life, of my life. And I'll never be the same again.
It's now 12 months on. In many ways it feels like five minutes ago, and yet it has been a battle too. Returning to work was a part of the recovery, a normalising of things, and for me it was important to be real. Online support groups for DCIS sufferers really helped, as did going to a counsellor regularly. These helped give me space to explore my grief, as well as keep me grounded and able to move on with my work. I shared much of my journey with friends and colleagues, but there were parts where the darkness enveloped me and I needed to lean on my closest loved ones to get through the day. But in these times, others surprise you with their compassion and strength and the only thing to do is try to use some of theirs when yours is wobbly.
