I am a 59 year old single mother of three beautiful young adults: one daughter, Anna, lives in Sydney; my son, Dominic, lives in Brisbane; and my eldest daughter Lara, due to a disability, lives with me also in Brisbane.
I work fulltime as a Nurse Educator, a role though challenging at times, is one that I am dedicated to as I am passionate about supporting nursing staff in their care of our clients and their families. It is because of this role that I am a strong advocate for encouraging and having routine health checks.
This is where my story begins, with a routine breast screen. Usually just a box to tick off my ‘to do list’ once every two years. This time it was different as I was called back for a follow-up scan and possible biopsy. The nurse told me not to worry as 9 out of the 10 women usually return normal results. On hearing that I felt reassured that everything would be alright.
On arrival I noticed that the waiting room was slightly different. At this stage I was not familiar with the words ‘social distancing’ and seeing every second chair turned to the wall was quite strange. All too familiar now, this was a new process for COVID-19. The waiting area was filled with ladies similarly gowned. We chatted and had cups of tea as we watched the ongoing broadcasts of PM Scott Morrison talking about this virus, which I thought would be the only alarming news for the day at that stage. Little did I know that a world-wide pandemic would pale in significance to me in my world by that afternoon.
The doctor explained that my initial results were unclear and then outlined the plan for the morning. An ultrasound was performed and I was sent back to the waiting room. Time passed before I had an x-ray and then more waiting. A routine ‘in-this-situation’ biopsy was taken and it was again back to the waiting room.
Eventually, one-by-one the ladies dressed and were called to the doctor’s office to triumphantly return with a big smile, and the occasional air pump, as they said ‘all clear’ on the way out. After spending all morning with these women, it was great to hear their good news and a small cheer followed them as they left. I remember thinking who would be the poor ‘1 in 10 ‘ lady that on leaving would possibly not receive good news today.
Though I counted more than 10 ladies that morning, I did not think for a second that it would be me. That was until the nurse who walked with me to the doctor’s office asked if I had a support person with me. ‘Support person. What?’ Was the nurse unintentionally hinting there was bad news to come? The doctor however told me not to be alarmed as the area they’d been looking at was so small that a biopsy was necessary to properly assess it. I just needed to come back in three days for the results.
I felt relieved until I was half way back to the waiting room. I staggered to a stop and thought am I that poor lady? What do I do? Pretend? I could not see myself doing a lame air-pump as I scurried pass the remaining ladies. So I squared my shoulders, smiled and said, ‘darn I need to come back on Friday for the biopsy results. Wish me luck!’ There was a hearty cheer of ‘good lucks’ but as I rounded the corner I clearly heard someone say, ‘shit.’ At that my heart sank as I thought, ‘Yes, shit.’
Over the next three days I convinced myself everything would be fine and I was sure a support person would not be needed for the next appointment. Thank goodness Karina, a dear friend and nursing colleague, who called the night before ignored my protests and rearrange her schedule to be my support person. I agreed with Anna and Dominic that I would give them a thumbs up text or, heaven forbid, a thumbs down as soon as I knew; not for a minute believing a thumbs down was possible.
After a preamble the doctor said, “I am sorry to say you have ductal carcinoma in situ and a grade 1 invasive breast carcinoma”. I remember smiling at the doctor still awaiting an all clear and with those words my smile froze on my face before it slowly, breathlessly slid away. The doctor’s words started to sound muffled, as though I was under water. A sinking feeling came over me as I thought, ‘I’m going into shock’. In what felt like slow motion, I turned my shocked gaze to Karina and without a word she knew I needed her to take over.
I knew Karina would asked all the right questions and, once I was capable of hearing, she would tell me all that I needed to know. Karina is someone I would take into any challenging situation, I just didn’t imagine it would be my own health crisis. This is when I started to count my blessings. Karina was blessing number 1.
Blessing number 2 came when I messaged Anna and Dom with the thumbs down. Without me knowing they went into immediate action. Anna left work, packed a bag and was at Sydney airport within an hour. Dom took time off work to pick her up and all my children were home in Brisbane before I made it back from my GP appointment that afternoon with the breast cancer specialist referral.
Blessing number 3 was my breast cancer specialist. My specialist was genuinely empathetic, gave clear information and when she listened to me I felt heard. As I had radiation treatment with Hodgkin’s disease at 30, I was not eligible for radiation treatment again with a lumpectomy. This moved the discussion onto mastectomies and for me the answer was clear. I loved my breasts and they had done their job admirably having breastfed three beautiful infants but it was time for them to go.
At that point all I could think was ‘get them off me and then put something back.’ It was like the panicked scream of when I was young and found a leech on me while bush walking. I ran around screaming ‘get it off, get it off’ to everyone’s amusement. In this situation there was no amusement but my internal mantra was the same.
However new surgery restrictions due to COVID-19 were coming in and while category 1 surgeries for mastectomies were continuing, breast reconstructions, classified as elective surgeries, were not. This came as a shock and even though I was assured that reconstruction could be done later, even years later, I was truly upset that I couldn’t have the procedures done together. My specialist then went on to say there are many women who decide not to have reconstructions, nor wear breast prostheses, and this is called ‘Going Flat’. I can now say this reluctantly became blessing number 4, as without the elective surgery restrictions I know I would have had breast reconstruction and missed this opportunity to pause and experience going flat.
Once the decision for a bilateral mastectomy was made there was a two week wait for surgery and my two girls and I self-isolated at home to make sure I didn’t get sick even with a head cold, let alone the coronavirus. Being in hospital during that time was strange and very lonely. I was only allowed one visitor per day for an hour. With three children, one being disabled, this was horrible. Anna and Dominic took turns visiting me but Lara who needed a support person to bring her up to the ward was not able to visit me at all. It was a very challenging time.
Once home, my elderly parents and friends, all healthcare workers, still weren’t able to visit due to increases in COVID-19 cases. I felt isolated, miserable and disconnected. However, I was cheered with delightful gifts of flowers, home delivered meals, many phone calls and texts to ensure I didn’t feel too forgotten. Their support was wonderful and again I felt blessed.
I really do have to thank my three incredible children for supporting me, and each other, during this difficult time. Dominic on the outside delivered meals and groceries to our door; Anna living with me, worked from home for four months to look after Lara and me, with only an overnight bag; and my dear Lara, who lovingly made many cups of soothing tea for her Mummy, and kept me company on the lounge throughout my time of recovery and our isolation together.
There were certainly other positives that came from this pandemic. One being the creative, loving and often funny supports I received from my friends and family. One being Anna suggesting we make breast casts before the surgery. That was such a funny, messy experience. Most importantly the pandemic gave me breathing space to stop and consider a different way of approaching life post bilateral mastectomy. Without that time, I would have certainly pushed for an immediate reconstruction as in my mind there was no other option.
The pandemic has given me time to adjust and feel comfortable within myself. It gave me an opportunity to realise that I am not defined as a women because I do or do not have breasts. I personally find the wearing of a post-mastectomy bra with prostheses very uncomfortable, more so than the emotional discomfort I feel when peoples realise that I have a flat chest.
Therefore, I have chosen to go flat and while this decision has not been easy, as time goes by I am feeling stronger in my physical and emotional health, and more comfortable within my new body. So being flat is the truth for me now, but I am also happy knowing that I can change my mind at any time, if I choose.