I am clear about who I am - Jo
12 months ago, I was preparing for a double amputation and DIEP flap surgery.
12 months ago, I was re-learning to trust that there were people within the health system who genuinely cared about me and what I needed from cancer treatment. The previous 6 months of cancer treatment had eroded that trust.
On Feb 14, 2020, I was diagnosed with bilateral breast cancer. At the time my husband was still being treated for cancer.
We had just entered into our first period of “keeping each other safe” during COVID-19. To say this was an unsettling time for me is an understatement.
When a woman is diagnosed with breast cancer, a lot of things happen fast. And we can be grateful for early intervention and for a health system here in Australia that has a lot of resources dedicated to the treatment of this disease. The pace at which medical appointments happen, and information being thrown at you is overwhelming. And I was to learn that where you live has a HUGE impact to the types of surgical options that are available to you.
Prior to my own experience of breast cancer, I had worked with many cancer survivors in my role as Consultant Rehabilitation Counsellor. I knew that breast cancer wasn’t necessarily a death sentence, and I knew that treatment was rough. I had always shown kindness, compassion and allowed my clients to express their stories, their goals and their needs with me. I expected the way I operated as a health professional would be the way that all medical and health professionals would conduct themselves, especially in oncology working with women when their entire sense of who they are as women was about to be pulled apart with multiple surgeries, chemotherapy, radiation therapy and hormone therapy.
Imagine my surprise when I started meeting medical professionals where I felt rushed, ignored and as though my wants and needs didn’t matter. Coming up against this attitude was incredibly difficult for me. In my desire to advocate for myself, I found I was being belittled, shamed and was often met with the phrase “you are difficult aren’t you”. No, I am not difficult, I am clear about who I am, what I want and what I am prepared to let someone do to MY body.
““I am clear about who I am, what I want and what I am prepared to let someone do to MY body.””
When it came time for me to make decisions about surgery, I had clear expectations of the type of person who was going to be allowed to make such drastic changes to my body.
The first expectation was that I was going to be treated like a person who believed I had a long life expectancy after cancer treatment. My surgery needed to help me live the life I was expecting to lead. It took 3 surgeons to find Dr Joe Dusseldorp.
I could stop working so hard to find people to care for me – I was now being cared for. I look back on my first meeting with Joe and am embarrassed. I was so used to being rushed and ignored that I was doing everything I knew how to keep control of the situation. I was so used to turning up to medical appointments where paperwork hadn’t arrived, or had gotten lost, or hadn’t been read. I would take a lever arch folder with me with all my medical information, and I had a notebook with my questions and concerns written down in it because, well Chemo brain and anxiety. I was exhausted, I was halfway through chemotherapy, I had lost my hair and I looked sick, and everywhere I went people needed to look at and touch my breasts. I was so used to being a strong, vibrant, capable woman and here I was feeling anything but. It left me feeling like I was nothing but a couple of tumours with a significant histopathology that needed to be cured. Who I was as a person wasn’t as important as getting rid of the cancer cells and the threat of cancer cells returning.
Like many women, I had done a lot of research about surgical options.
I had lived with myself for 48 years; I knew what was important to me and what wasn’t. I had a very clear idea about the type of lifestyle I wanted to lead post cancer. I chose a DIEP because that’s what made sense to me. I wanted to use my body to help reconstruct my body.
““The absence of disease does not automatically mean wellness.””
What I wanted was medical professionals who knew how to listen, who knew how to engage and who practiced medicine from a patient centred philosophy.
Many women will tell you how much breast cancer treatment takes away from them. The list is long. Work with people who enable you to take back control of your body, and restore your faith and trust in your body’s ability to heal itself.
If you or someone you know is making decisions about surgery, please know that none of your questions are stupid. Ask as many questions as you need. And find people who are willing to sit with you, listen to you and help you understand your choices.
Jo, 49, Breast Cancer Survivor, Patient Advocate and Lover of Life. @jo_muirhead (instagram)
Note: just as no two individuals are alike, no two surgical results will be exactly alike. Seek surgical advice from a FRACS qualified professional.