INSTINCT
It was a cold September day in The Adelaide Hills. I was dressed for the weather in a hat, scarf, gloves and a big warm coat. My ex husband and I were watching our son Elis play football in their Grand Final. In the third quarter, I suddenly experienced a sharp, stabbing pain to my left breast. I crouched to my knees in pain, my ex - husband thought instantly that I was experiencing a heart attack.
I knew this wasn’t a cardiac event, this was different.
Unfortunately for my son’s team they lost the Grand Final but luckily for me, we were able to return home without spending hours at the clubhouse celebrating!!
We returned home and I checked my breast and axilla thoroughly for any lumps or swelling but couldn’t palpate anything out of the ordinary. I am a Registered Nurse of 30 years. I work in an Outpatient Setting in a large teaching hospital south of Adelaide. A large proportion of my work is working with women post-operatively, who are on their breast reconstruction journey. I have been in this role for 15 years and have always been extremely vigilant with my own breast examination due to my experience as a nurse in this field.
On the Monday, despite not being able to palpate any abnormality, I booked an urgent Mammogram with Breast screen SA. I self -referred. The waiting time for an appointment was within a week .I went alone with a positive outlook .They reassured me that despite calcification being present ,my mammogram was clear and that I was to “come back when your 50”.
Over the next eight weeks I experienced intermittent buzzing sensations in the left, lower quadrant of my breast. I recall describing the feeling to a friend as a ‘factory of ants building a nest’. This didn’t sit right with me, it wasn’t normal for MY breast and I knew in my heart this needed further investigation. I followed my intuition and instinct and rang Breast screen SA for another mammogram. This mammogram came back showing a small 1cm lesion above my nipple. I recall discussing with the doctor who reported on the mammogram how strange it was that this lesion wasn’t there on a previous mammogram and stated to him it was nowhere near to where Id experienced the stabbing and buzzing pain. Luckily for me this ‘new’ 1 cm lesion was found…….reading on you will work out why.
A few days later, I attended Breast screen SA for a biopsy of the 1cm lesion and it was confirmed by my General Practitioner a few days later on the 30th November 2017, that it was indeed a DCIS. (Ductal Carcinoma in situ) I remember sitting in the GP’s office thinking “Great! I’ve been diagnosed with breast cancer on the day I’ve been nursing 30 years…..I have a party to go to tonight!!!
My GP frantically and nervously looked through her computer for a breast surgeon to refer me to. Due to the work I do, I had a few breast surgeons’ names in my phone! I dialed a colleague and friend and handed her the phone. He reassured her all would be fine and that I was to attend his office the next day at 9am. I’m glad I’d followed my instinct.
I met with my ex - husband after he finished work that day to inform him of the news and as he hugged me in the car he said “we will deal with this as a family ”. (We emigrated out together in 1994 from the UK. We have 2 children Meg 18 in Year 12 and Elis 16 in Year 10.) We have no other immediate family in Australia. Him and I, despite being separated 13 years have a caring, respectful relationship towards each other. I asked him to inform my elderly mother and my sister in the UK of the news, as I couldn’t face telling them.
That evening after a big glass of wine I told the children that I had a small cancer in my breast that needed to be removed. They were strong and supportive.
I hardly slept that night thinking what if? ….. Am I going to die?..... Will I see my children get married? My daughter is in year 12, she has a tough year ahead ……Will I be a Grandma ?....... I live life to the full, I haven’t got time for this breast cancer shit!!!
The Breast Surgeon reassured me it was small, it was an in- situ carcinoma and informed me that all I would need to have was a partial mastectomy and a sentinel node biopsy. Luckily, I took a best friend with me to this appointment. She is a Plastic Surgeon. I found myself zoning out at the appointment looking at his face and the diagrams he was drawing for me but, really not listening to him. More so looking at the paintings on his walls and thinking the plant on the window shelf needed a drink! He told me he was happy I’d followed my instinct.
By this time, it was nearing Christmas. The public hospital where I work and was being treated at had closed their theatres for elective surgery for a month over the Christmas and New Year period.
Christmas and New Year that year was quiet and a blur. I was booked in for surgery mid January 2018.
I was overwhelmed with the support I was receiving from my friends both in Australia and UK. I was raised in a small village in North Wales and a strong work ethic and community spirit had been installed into me by my late father. I was always encouraged to be a kind, good friend and the saying “You reap what you sow” definitely came into play. My friends rallied around my children and I, surrounding us with love and support. This cocoon of love protected me and kept me from spiraling out of control.
The day for the partial mastectomy surgery came, my friend escorted me in and all was well. I was positive and trusted my surgeon 100%. I had faith in him after knowing him over 25 years. On my return to the ward and after returning to real life after the fog of the anaesthetic , I noticed under my gown that my breast looked very similar to what it did pre operatively. I remember thinking “this doesn’t look right….it looks too good for a partial mastectomy”. My nurse brain was kicking in and this was the beginning of my transition from Nurse to patient. I found myself trying to read between the lines and second guess the health professionals. I recovered well and was discharged with the instructions my surgeon would ring me with the results the next day. I remained positive. The phone call came and my world fell apart.” Awen……your sentinel node has metastases present and the margins wern’t clear for a partial mastectomy, we need to do a full mastectomy”.
How could that be? It was 1cm and wasn’t there on a mammogram 8 weeks prior?
I went into shock, I got in the car and drove around in tears for an hour. I rang my friend who told me to stop the car and she drove to find me. We sat under a tree with a beer she’d brought with her! I was spiraling, again trying to second guess and thinking “THAT’S why my breast looked ok after the partial mastectomy ”. I knew then , deep down something wasn’t right. My instinct was right again
I always liked my breasts they were 12 EE, friends were jealous of them and they were often a talking point!!
As the date of my mastectomy and axillary clearance loomed , once again, I kept a positive outlook. I had to be strong for my children. I was a single mother, they needed me. I grieved for my breast in the shower. I would shut the door, put on very loud music and sob uncontrollably in there. I would look in the mirror whilst drying myself thinking “you’re never going to look like this again”.
The day came, the day my body was going to change forever. From the second I entered the hospital as a patient, I was cared for by my colleagues, cared for in the hospital I’d worked at for 15 years. I was looked after and treated like a VIP from the holding bay to recovery to the post op ward. Everyone knows me due to my unusual name and friendly character, I’m well known at the hospital! This helped me tremendously.
The post op news what NOT what I expected.2 out of 7 nodes had metastases present and a 4.5 cm lobular carcinoma was discovered. This tumour was EXACTLY where I had felt the pain and EXACTLY where I had told the mammogram professionals where I could feel the buzzing sensation. But all along it hadn’t been palpable. I’m glad Id followed my instinct.
So…….my journey started……seeing an Oncologist ( this means you REALLY have cancer!)
She is a Professor , a Polish, straight shooting type of woman. I told her not to bullshit me and to tell me how it is. I told her to throw at me the strongest stuff she had. She told me in her strong Polish accent “we will get on, you are a straight talking woman like me!” I was prescribed 16 rounds of chemotherapy, she told me “you will be sick, your hair will fall out in 3 weeks, but this is what you need”.
The next 6 months were long, difficult, hard and tough. I am a feminine woman who takes great pride in my appearance. The Oncologist suggested I cut my long hair short. This was hard, but nothing prepared me for loosing my hair, my eyebrows and my long eye lashes. I couldn’t give a shit about the arm pits, bikini line and legs! (this is THE only bonus of chemo! I saved a fortune on waxing ,shampoo, conditioner and hair treatments!) She was right, week three to the day of starting chemo is when my hair started to fall out. It became patchy. I decided to take control. I couldn’t ask anyone else but my ex husband to wet shave my hair. We have a 30 year history. He came around with a bottle of French Champagne. I drank, whilst he shaved. He happily did it, proudly stating he had for the first time, more hair than I !!
I bought a wig, this was a tough day, but my 18 year daughter comforted me with the words “Mam….your hair doesn’t define you”. After a week, I decided to donate the wig and wore my scarves, beanies and beautiful hats.
On the first day going to the shopping mall bald. I walked in, sad, head bowed. A woman with short hair and a beautiful smile approached me. She greeted me and told me how beautiful I looked. I teared up and told her it was my first time at the mall bald. I instantly connected with her and felt saddened when she walked away after a brief conversation, not knowing her name but knew we had breast cancer in common. On returning home I wrote about my experience on my Facebook. Unbeknown to me at the time , she had also done the same and a mutual friend had read both stories and connected us both. We ,to this day are friends and will always be.(another positive to chemo!)
During chemo I was told by a friend in Victoria, about The Otis Foundation. I researched them and was overwhelmed to see what kind of work they do. Properties are donated nationally and any woman with a breast cancer diagnosis can take advantage of a property in their state and stay free of charge for 7 nights with their family. I contacted them and was thrilled to be offered a property called St Brigid’s in Goolwa SA. A 100 year old Baltic pine old church that was relocated from interstate. As my children were overseas at a family wedding that I wasn’t able to attend, I went with a friend, driving up to Adelaide during the week for my chemo. It was beautiful, peaceful and serene We read, slept in and I made the most of the beautiful outdoor bath they had despite my PICC line !I am forever grateful to The Otis Foundation and hope one day to become an ambassador for them.
During chemo, my friend’s son Xander saw me at the petrol station. It was winter and I was cold. He asked his mum why I was bald ,she explained about chemo and it’s side effects. He said “she must get cold with no hair”. Xander went home, spoke to his grandma whom is an avid knitter and they both decided knit beanies to sell at Xander’s school for $5 each to raise money for The Otis Foundation. This was very successful and Xander is hoping to beat his target in 2019.
Once chemo ended, the next stage was Radiotherapy. This was the stage I battled with the most. Being a nurse with reconstruction patients, I knew skin doesn’t deal well with high doses of radiotherapy. I had decided that I didn’t want an autologous breast reconstruction (Lat dorsi/TRAM Flap/DIEP), but that I wanted both breasts removed, tissue expanders inserted and expanded and implants inserted. I was obsessed with symmetry and the final result. My Plastics & Reconstructive Consultant warned me about the disadvantages of surgery on skin that has been treated with radiation. I became obsessed, researching papers from the US, Googling and pestering my Plastic Surgeon friend about it. Out of the kindness of her heart, she could see how exhausted I was mentally with this battle to have or not have Radiotherapy and told me sternly to “stop being a nurse and start being a patient”.
I met with the Radiotherapy Consultant and expressed my fears. She had never come across a patient who works with breast reconstruction before and who was raising such concerns. Most patients don’t question the consultants, but I was different!!!!She compromised with me and adjusted the dose accordingly . I moisturized and cared for my skin like it was a newborn’s skin. Following the completion of my radiation I got the good news from the oncologist that I was now cancer free and that I had beaten the beast inside me.
She also stated she was glad I’d followed my instinct, as If Id returned for a mammogram, when I was 50 it possibly would have been too late. I walked out of the Cancer Centre with a spring in my step.
The next step of my journey is now all positive. I saw the Plastic & Reconstructive Consultant and approached her with an educated and well researched view . I asked her would she attempt to expand my skin. She agreed. So , February 2019, I had my second mastectomy with insertion of bilateral tissue expanders .Loosing the second breast was much easier, as Id had plenty of time to grieve for loosing it and my obsession with symmetry was getting closer to being achieved.
My story’s ending is thankfully a happy one but, I think daily about the what if? and the what if I hadn’t of followed my instinct?
My journey has taken me to a point that I will be a completely different nurse , a nurse with more empathy and care than I had. There is certainly a positive to my breast cancer journey and my daily purpose in life is to educate every woman to know what is NORMAL for their breast. Any sensation, feeling, discolouration, dimpling, discharge, rippling. GET IT CHECKED.
Follow your instinct………my instinct saved my life.
Awen Griffiths
Mother – Friend - Registered Nurse - Breast Cancer Survivor
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