My name is Julie and I am an Ovarian cancer Survivor and the creator of cancer Warrior Australia.
There is a quote written by Oliver Goldsmith, an Irish poet and playwright, and it says,
“Life is a journey that must be traveled no matter how bad the roads and accommodations.”
To me, this is cancer. Once diagnosed, you must travel the road and it does get bad.
I was 48 when I was diagnosed. I had a busy life, working in HR and Compliance and renovating my house on weekends. I was constantly tired, I had a few food issues, my appetite was low, and I was eating smaller and smaller meals because I would feel full quickly. The only symptom that was bothering me was the tiredness. My GP eventually diagnosed me as having Hashimoto’s Disease and I started on thyroid replacement hormones and three-monthly blood tests. About a year into my Hashimoto life, my GP noticed my red and white cell counts, had started to rise quickly. He decided to send me to a Hematologist to check on the counts. The Hematologist wasn’t concerned and didn’t think the counts were very high. As almost an afterthought, he suggested we do a chest x-ray and a CT Scan to check everything was OK. The tests came back and a small cyst near my pancreas had been ‘incidentally found’. Again, my doctor wasn’t overly concerned. Apparently, the size, shape and density didn’t indicate anything sinister. He decided we should have it removed and I was referred to a general surgeon. I showed up at the general surgeon’s office and he said, “No, you will a pancreatic surgeon”. I showed up at the pancreatic surgeon’s office and he said, “No, you will need an endoscopic specialist”. I showed up at the endoscopic specialist’s office and finally a time was booked to do a biopsy before removing the cyst. From GP to endoscopic specialist took 9 months.
The Endoscopy was done, and I waited for the results not having even the slightest clue of what was about to come.
July 7, 2017, around 10am. I was sitting at my desk at work, busily working away and my phone rang. I answered it.
“Hello Mrs. Blackley. This is Jane from the Hospital. I was just calling to confirm your appointment with the Oncologist ……………”
I stopped breathing, as soon as that word was spoken.
Unfortunately, for the poor lady on the other end of the phone, when I could breathe again, she didn’t get the best response. I think it went like this, “What are talking about? An Oncologist? The only people that see Oncologists have cancer! Are you telling me I have cancer?”
That poor lady. She went silent. She had just told me, unknowingly, that I had cancer, by telephone. She clearly didn’t mean to and was just as upset as I was.
Well, that got the attention of everyone at the hospital. I had Counselors calling me every hour, I had the Medical Oncologist call me to have the “You have cancer” conversation over the phone, and an appointment was made for the very next day to meet my Oncologist face to face.
The cancer was Stage 3c and was in lymph nodes near my pancreas and liver. No cancer could be seen near my ovaries but the fluid tests from the endoscopy presented Ovarian cancer cells. There was another spot in my chest, near my heart, that was of concern. They weren’t sure if it was malignant and wouldn’t know until it was removed.
Five days later, I was in the chemo chair receiving my first infusion. The oncology nurses are angels. They stayed close, answered every one of the questions that crept into my mind and kept me as calm as is possible in a horrible situation.
10 rounds of chemo later and it was time for surgery. I already had a port installed and an exploratory laparoscopy to look for disease in, near or around my reproductive organs. None had been found but I was told it may be inside my organs and would be found when the hysterectomy was performed.
The first surgery was to remove the node in my chest. A stay in hospital, 24 hours in an induced Coma in the ICU and I was told the node was cancerous, but they had removed it all with perfect clearance. I had complications with inflammation when they removed the breathing tube after surgery and had to be placed in a coma to allow the swelling to settle so I could breathe. I also experienced a pneumothorax. As a mother, I am going to tell you, the pain of a pneumothorax is worse than child birth. From this surgery, I also received an upgrade. I was now Stage 4. This is the only journey I have been on, when an upgrade, has been a really bad thing.
The next surgery was a month later. Every organ that deemed me a woman, was about to be removed. I didn’t’ have a problem with losing my female organs. I said my goodbyes to my uterus, tubes, cervix and ovaries. I told them they had done their job well by giving me 4 children. I said, I am thankful and you are now free to leave (please take the cancer with you). The nodes near my pancreas were also being removed (if possible, no guarantee) in the same operation.
After surgery, my organs and the nodes were sent for testing and the results were:
1. Two nodes removed near pancreas. Both with malignant disease.
2. Complete hysterectomy with bilateral salpingo oophorectomy. The result - “No cancer cells present, nor indication of being previously present, in any part of my reproductive organs”. My gynecological oncology surgeons’ words were, “they were pristine”.
Now, how can I have Ovarian cancer with no cancer in, near or previously been in or near my Ovaries. This has been the hardest part of my cancer journey to understand. My brain, no matter how many times it is explained to me, will not comprehend how I could have Stage 4 Ovarian cancer with “pristine” Ovaries. Still to do this day, I have difficulty accepting this.
Recovery from all the surgeries was fairly trouble free and I returned for my last 2 rounds of chemo. On the very last chemo, my Oncologist suspected I had developed blood clots. A CT scan confirmed clots in both lungs and my chemo was rescheduled while I started injections to break up the clots and prevent more. It frightened me when my oncologist told me I could have just dropped, at any moment, and my life would have been over. I thought my breathlessness was from the chemo. I wasn’t aware that I was at risk of clots.
21 February 2017 and the chemo bell rang loud as I left my treatment center knowing it was over. I had survived the treatment and was declared cancer free.
I am not the same person, physically or mentally, that I was before cancer. cancer and the treatment to save my life, did a lot of damage and my GP and I have almost become best friends trying to repair the damage. I feel extreme pain from Neuropathy every waking moment. At times I am depressed, anxious, moody and I recluse from life. The after effects are, for me, worse than the treatment.
What I have learnt from cancer, medically, is that cancer doesn’t come in a neat little package. It will package itself the way it want’s too. It doesn’t care about the statistics for age, symptoms, signs or bodily location. I had Ovarian cancer Stage 4. I had pristine ovaries. I am alive only because of good investigative doctoring. Knowing something was wrong even though it wasn’t presenting in a bad way. My doctor went searching, checking and the cancer was found. He saved my life because if he didn’t go the extra mile, I may have been diagnosed at Stage 5 and we all know there is no Stage 5!
Thank you for reading to my story. I hope it will help others to hear the whispers of Ovarian cancer and save the life a woman like me.
Ovarian cancer is a general term used to describe a cancerous (malignant) tumour starting in one or both ovaries. The ovaries are made up of three main kinds of cells – epithelial cells, stromal cells and germ cells. Each of these cells can develop into a different type of tumour. The average age of women when they are diagnosed with ovarian cancer is age 64. It is mainly diagnosed in women over the age of 50; however, there are cases diagnosed in younger women.