Amy’s Breast Cancer Journey

Like many women, I discovered my lump by accident. Well actually my husband Scott did. We both knew it wasn’t normal. Going to sleep that night I tried to not think about it, after all it was only 9 months earlier I had clear scans, so surely it was just a cyst – I had many of them show on ultrasound before but none that I could feel. The next day, Scott urged me to go get it checked out. I saw my GP who said I would need to go for a mammogram/ultrasound and thankfully I got an appointment the next day. After they did my mammogram, I was sent to wait for my ultrasound only to be called back into the mammogram room for more pictures. In that moment, I knew something was wrong.  I moved into the ultrasound room and watched as they measure a mass inside my right breast. He left the room and returned to tell me that they needed to do a biopsy but I’d have to come back on the Monday as it was too late on a Friday afternoon and the courier had already collected their samples for that day. My heart sank but I still tried to convince myself it was nothing and for the next 48 hours I continued to check the lump hoping and praying that it would disappear, but it didn’t.

Monday arrived and my mum came with me to my biopsy. It was confronting and painful and once it was done, I had the agonizing wait for the results. All week I kept feeling to see if the lump had disappeared but it never did. By Friday I had hardly slept, I rang my GP office to check if my results were there and they were so I made an appointment that afternoon.

I declined mums offer to come with me as I was still convinced it was nothing. So I arrive at the doctor’s office alone. When I entered the room my doctor stated she didn’t have my results. I immediately burst into tears as I didn’t want to have to wait the weekend. She took me into another room and told me to wait while she rang for my results. I rang my mum in tears and she immediately came to the doctor’s office. We were both called back in to the doctor’s office. She pulled her chair close to me and softly uttered the most heartbreaking words “I’m sorry Amy but it is cancer”.  I don’t think I heard anything else after that. That day I began the rollercoaster ride that would be my life and still is my life 15 months later.

This isn’t the first time Cancer has touched my family. My own mother is a survivor who had breast cancer in her 40’s and her two sisters in their 30’s. Now here I was, 39 years old facing my own journey.  Because of my family history I have always been proactive in having yearly checkups of mammograms and ultrasounds and have been seeing our family breast surgeon since my 20’s. However I wasn’t self-checking and just relying on these scans to do it for me.

Before I arrived home after getting my diagnosis from my GP, our family breast surgeon had also received my results and rang me.  He made me an appointment to see him the next week.  My husband and I sat in silence that night trying to process it all. We decided that we want to be upfront and honest with our kids, Jamisyn (13), Ruby (11) and Jye (10), so over the weekend we sat them down and told them. It was one of the hardest things I’ve ever had to do. Putting on a brave face when I had so much fear inside me, reassuring them I was going to be OK when I had no idea if I was. I’d lay in bed at night completely terrified I wasn’t going to get to watch them grow up.

Mum and I arrived in Melbourne on the Tuesday to see my breast surgeon. I hadn’t received all my results on Friday, I still needed to find out what type of breast cancer I had. My mums breast cancer was hormone positive so assumed mine would be the same.  He read my report and said “No, its triple negative breast cancer”. Triple negative breast cancer is a kind of breast cancer that does not have any receptors that are commonly found in breast cancer. It tends to grow and spread faster and has fewer treatment options. I looked over at my mum and the pure shock on her face. I’d heard of this type of breast cancer and the person I knew with it was terminal.  I burst into tears and thought “I’m going to DIE.” I was sent straight for an MRI. I sat in the waiting room, tears streaming down my face absolutely terrified. I rang Scott and sobbed so fearful of what was to come. In the MRI machine, I tried so hard to stay still but the tears just wouldn’t stop. I didn’t stop crying that day. It was one of the lowest moments in my life. The MRI revealed more cancer spread throughout my breast. They called it multifocal cancer, and I also had activity in my lymph nodes that needed further investigation.

My breast surgeon organized for me to have a biopsy done on my lymph nodes in Bendigo. My dad came with me but because of Covid had to wait outside. It was excruciating. I walked out of that appointment and collapsed in my dad’s arms so exhausted and so scared. I cried telling him I didn’t want to do this anymore it was too hard. The biopsy revealed what we already suspected and it had spread to my lymph nodes. I was sent for PET scan to check the rest of my body for cancer. This was probably the most terrified I had been in this process, laying in that machine I prayed it hadn’t spread further than my lymph nodes.  Finally we got some good news – it hadn’t spread and my treatment plan was to begin. My breast surgeon and a team of experts reviewed my case and put together a treatment plan to CURE.

I met with my oncologist at GV Health and we discussed the plan. 16 rounds of chemotherapy, 4 being fortnightly with the strongest chemo drug also known as the “red devil”,  followed by 12 weekly rounds of two other chemo drugs known as Carbo and Taxol.

So 9 days since being diagnosed I was sitting in the chemo chair for the first time with Scott by my side. As they put the line in and started the chemo I watched the red liquid run through the tube and into my veins praying it was attacking and killing all my cancer cells. I was sent home with a lot of medication and a needle that Scott would need to inject into my stomach after each chemo. The next few days were rough. I spent a few days in bed and just felt terrible. It was decided that I would get a PICC line inserted into my upper arm. This would allow the oncology staff to collect blood easier and also give me my chemo through it. So I dragged myself out of bed and headed to GV Health to get this inserted. Another painful procedure that left me traumatized, but worth it as it saved me being a pin cushion each chemo.

After my 2nd round whilst in the shower I started losing my hair. It was such a bizarre feeling but also gave me hope that the chemo was doing its thing and killing all the cancer cells. After days of clumps coming out, I decided to let my daughter shave my head. My son also wanted to do it with me. We had a laugh whilst doing it. She gave me every hairstyle, a fringe, a mullet, a bowl cut etc. then finally a number 2. Along with Jye.

With each chemo, I started to become so much weaker and had exhaustion like I had never experienced. I was spending days in bed, and when I was out of bed, holding a conversation was even difficult. Some days I sat in my chair and just felt like a zombie. The kids would come home from school and climb into bed with me and just lay there with me. The guilt of not doing all the things I used to do for them really upset me but I also enjoyed the time we spent together without me rushing around doing 100 things that in hind sight were never really important.

On my good weeks between chemo, I would start to feel human again I would go to work. It was so good to have a distraction from everything that was happening. My work mates, family and friends showed us so much love, kindness and support. They fundraised for us, made us meals every week.  Checked in on us. Our close mates surprised us one weekend and gave us a backyard blitz. It was overwhelming how many people reached out to support us in one way or another even complete strangers. Our community is amazing and made our journey so much easier. We will be forever grateful.

I pushed through the last two “red devil” and was due for a few weeks break before I had to start the weekly chemo.  I was booked in for an ultrasound to see how my cancer was responding. It showed it had shrunk but only a tiny bit. We spent the weekend camping out the river with our mates and enjoying the sunshine.

Monday came and 1st round of the weekly chemo. Because of Covid, we weren’t allowed chemo buddy’s so each chemo my mum would drop me at the door and my dad would drive me home afterwards. Each week rolled into each other with not many good days before I was back in the chair for another lot. I was weak, exhausted and at times didn’t know how I would go on. My taste buds changed and nothing tasted good, I lived on peach iced tea, and the fatigue was nothing like I had ever experienced before.  My eyelashes and eyebrows started coming out and when I looked in the mirror I didn’t even recognized myself. I longed for the life I had before this.

Before we knew it, December came around and my last chemo was here. The same day my daughter Ruby graduated primary school. My dad dropped me off one last time and my mum arrived with balloons and flowers and watched me put my finger print on the chemo tree. She dropped me home where my family had set up a little party to celebrate the end of the chemo part of our journey.

I enjoyed Christmas with our families and I turned 40 a few weeks later.  Again, covid got in the way of our party plans and I had a small gathering with my family and close mates instead of the big party we had planned.

I underwent gene testing early on in my diagnosis and the genetics team found that we have a mutated gene and my chance of getting ovarian cancer were high also. Not only for me, but all the women in my family. My girls would also need to be proactive when they were older. I pray they never have to experience this journey for themselves. Watching me go through it is more than they should ever have to experience.

Making the decision on what surgery I would have, was easy.  I wanted to eliminate the chance of ever having to go through this again, so I decided with advice from my team, to get a double mastectomy.  With the gene testing done I would also need to have my ovaries removed once I was through all of this.

19th January 2022, Scott and the kids drove me down to Melbourne and dropped me at the front doors of the Cabrini Hospital in Brighton. Probably one of their hardest days. I made my way to waiting area in theatre, there I was given my gown and those sexy long orange socks. I was rolled into theatre absolutely terrified but was greeted by my breast surgeon who took my hand and reassured me I was in the best care, he introduced me to his team. After a 6 or so hours surgery to remove my boobs that were trying to kill me, I woke in recovery feeling so nauseated and felt like I had an elephant sitting on my chest. I sobbed all the way to my room.

As I still needed to have radiation, I didn’t have an immediate reconstruction, instead I had expanders put in to keep the skin stretched for reconstruction that would be done at a later date.

I spent the week in hospital on my own. Face Timing my family. I had 4 drains in which were so uncomfortable.  The nurses were so lovely and caring.  Taking me outside for sunshine and sitting with me.

I went home with 3 drains still in. I was so happy to see my family and hug them. Once home, the reality of it all hit me and I really struggled. Struggled with not being able to move freely, or sleep comfortably and looking in the mirror at my body and scars was really confronting.  I had district nurses from Kyabram District Health Service visit me daily and check my drains.  Finally, 3 weeks later the last one came out and it was such a relief.

My breast surgeon called me with my pathology results from my mastectomy. I didn’t get a complete response to chemo and I still had residual cancer. This gutted me. I once again was completely consumed with fear and I knew I would now need to do another 6 months of chemo after I did radiation. I kept thinking, how was I going to do this?! I didn’t want to do it.  But after the tears stopped I knew I had to.

I met with my radiation team and they marked my body for radiation.  I then underwent 15 rounds of daily radiation. Radiation was much easier for me then chemo was.  I would work in the mornings then do radiation in the afternoons. I was excited to finish knowing I ticked another thing off.

My next step was oral chemo.  I dreaded having to do this but was assured it wouldn’t be as exhausting as the IV chemo. I need to do 8 rounds which are two weeks of taking 4 tablets morning and night then a week’s break then start again.  I am currently on round 7.  I have had to stop and start a lot on this chemo, it isn’t as exhausting as the IV chemo but definitely has its side effects. My main one being hand and foot syndrome. My feet are so sore, cracked and peeling. I’ve also been thrown into early menopause which is definitely not fun. I will be so relieved when this part of my journey is done.  Knowing I’m throwing everything at it helps me keep going. My next step is my reconstruction and getting my ovaries out.

Throughout my cancer journey I have tried to remain positive. While things have been difficult, I’ve always felt there was light at the end of the tunnel. I really appreciate life now and everything about it. I try not to let the little things become big things and I don’t want to waste a minute of it. I look forward to the day when all this is behind us and we can get on with living life to the fullest and making so many memories as a family.