Flashback to the middle of 2019, it was just like any other normal day at work for Amanda, until she noticed a lump in her groin.
“First thing you do is tell your mother,” Amanda said. Worried it may be something troubling, she visited her doctor and was immediately sent to get some x-rays and an MRI done, followed by a biopsy.
“That’s when it came back that I had an 8cm rare soft tissue Sarcoma in one of the adductor muscles on the inside of my leg.”
All of a sudden Amanda had a whole team of specialists around her talking about radiation and all sorts of other things, “I didn’t even cry, I had no time to process.”
She was later sent for a PET scan and was receiving radiation treatment at Genesis, Chermside at the time. Just when things couldn’t possibly go further downhill for Amanda, her doctor reads her results from the scan, “it also looks like breast cancer.”
At this point Amanda does start crying, “I just thought I’m going to die.” Amanda continues, “I’ve got this in my leg, I’ve got breast cancer, it’s spreading… I thought that was it for me.” Amanda was put into a room while she collected her thoughts before going out to see her children in the waiting room.
Through all the turbulence and uncertainty of this situation, Amanda tells us about the moment she met Dr Janine Porter-Steele.
Dr Janine Porter-Steele is The Clinical Nurse Manager of the Wesley Hospital Choices Cancer Support Centre in Brisbane. Janine believes very strongly in providing interdisciplinary and comprehensive support for people affected by a diagnosis and treatment of cancer.
“I met Janine and she became my one person… When you have so much information coming at you your mind never rests.”
Janine told Amanda to stop thinking, she said “I will take all of this off you, manage the information and tell you what to do so you don’t have to worry. If you want something, ring me and we will take this one step at a time.”
“She was like my own personal assistant, she saved my life,” Amanda concludes.
Amanda was scheduled to have 25 rounds of radiation before she went for leg surgery to have the sarcoma removed. Her surgery involved removing muscle from her stomach to graft onto her leg, due to the sheer size of the sarcoma that had to be taken out.
Amanda was told not to move in her hospital bed for 10 days after the surgery due to the procedure involving microscopic re-attachment. To make matters worse, she was allergic to most pain relief; Endone, Morphine, and PALEXIA, which made the pain during recovery so much more unbearable.
During all this, Amanda was often asked by support people what she needed. “I don’t even know what is going on myself, so how am I supposed to ask for help,” she exclaimed. “It’s hard when you don’t know what you want, you get more frustrated and upset.” Amanda felt completely isolated for not understanding her own situation, yet cancer isn’t something you are supposed to go into knowing what to expect and what to ask.
Amanda’s biggest fear was chemotherapy as she didn’t know anything about it and assumed that she would get really sick. “I didn’t want to talk to my oncologist because, childishly I thought if I didn’t engage with her, then I wouldn’t have to have chemo.”
During Amanda’s recovery from her leg surgery, one day she went to get out of bed and couldn’t weight bear very well. Her mum rung an ambulance and Amanda ended up spending 2 and a half weeks in hospital with an infection in her leg.
“They were unsure of how to tackle my situation, as they were expecting this at the beginning of my chemotherapy, not nearing the end.” Using just local anaesthetic, the doctors’ stuck needles into the scar tissue to try and drain the fluids from Amanda’s swollen leg. “I thought I was going to pass out, it was a pain I had never ever felt before.” Sometimes it’s as simple as a hand on the shoulder in these situations, “you don’t need someone to tell you that you will be okay, but that human touch makes all the difference.”
Through all the ups and downs of her treatment and chemotherapy, Janine was Amanda’s only point of call. “She guided me through how to ask for what I needed and helped me take control of my treatment. She didn’t give me deadlines or timeframes, she let me process things in my own time. I would have been lost without her.”
Sometimes living with cancer is worse than the initial diagnosis. Amanda felt she was able to ask Janine the ugly questions that she didn’t want to scare her friends and family with. “No one else told me it’s okay to feel crappy, it’s okay to be sad and scared.”
After everything Amanda went through, she joined a lifestyle intervention study for women’s wellness after cancer run by Dr Janine Porter-Steele. “There are not enough words to say how beneficial the program is. The one-on-one support is really important, and they always have a solution or a recommendation to help.”
The EMERALD Study is a virtual lifestyle program that aims to improve health and wellness in younger women after treatment for breast cancer. Support through this program ranges from managing menopause, sleep, and stress to promoting physical activity, optimal diet and sexual wellbeing.
Amanda is now visiting the gym weekly, “exercise is so important to reduce my risk of recurrence, I have learnt that since doing this program.” She continues, “they teach you a lot about the benefits of exercise, especially for lymphedema which is a life-long issue for me. I had no idea either that exercising pre-surgery and chemo has really amazing benefits.”
“I have been to hell and back, but I get so much satisfaction knowing that the experience Janine and I have had together is now helping other people going through the same sort of thing.”
If you are recovering from breast cancer, know that you don’t have to go through this alone. Dr Janine Porter-Steele is currently running the EMERALD Study and is looking to help other women like Amanda get back on their feet after cancer treatment. Amanda could not recommend Janine’s support and the value of looking after your body after going through cancer enough.