February 5, 2018
My diagnosis came as a complete surprise. Until a few weeks before, I was symptomless. I thought I was constipated and a bit bloated. It turned out I had a massive ascites, (fluid sac), in my abdomen. Within weeks, I looked nine months pregnant and could barely move.
It was right on Christmas so the medical world’s reaction was intentionally slow. I ended up having that ascites drained three times before the New Year startup happened and chemo began. The chemo was a mixture of two drugs and after nine weeks, I had surgery to remove ovaries, Fallopian tubes, uterus, cervix and abdomen wall, even though there was no evidence of cancer in the uterus or cervix.
Post surgery, I had a further six weeks of chemo. That regime was stopped when the side effects of one drug became too much; I suffered permanent damage known as peripheral neuropathy.
Three months later, blood tests showed two small tumours were growing again. I was devastated. Another three months of chemo followed, this time using just one drug that appears to have fewer side effects.
Yesterday, my oncologist told me the tumours had shrunk and that my blood markers were reading normal. My head space is much better this time and although this journey has been just 14 months long so far, I understand far more than I did when I was first diagnosed.
One of the biggest issues for me was that I knew nothing about ovarian cancer. Since my 20s, I have had cervical smears and mammograms, but knew very little about most other forms of cancer. Hence, right from the beginning, it was a huge learning curve and obviously not a very welcome one. As a result, perhaps I did not always “hear” relevant data or seek information because I did not know the right questions to ask.
I resented the impact this cancer had on my life; a life governed by appointments where I seemed to lose control.
I simply could not live as I had been and there was no way I could consider working, for instance. I was just too sick. I hated that my immune system was so compromised that I could not see my sons and grandchildren, let alone my friends. I refused to allow myself to become isolated, even though I spent most of 2017 in various forms of quarantine. With very little support near home, (apart from a wonderful husband), the internet was my savior, allowing me to interact with friends, interest groups and medical professionals.
One of the key support groups was, and still is, the Ovarian Cancer New Zealand Support Group on Facebook.
Just being able to share experiences and to read of others has increased my understanding immensely.
Obviously I am not happy about having ovarian cancer, but I am much more accepting of the situation now and my response to that cancer is much more positive than it has been.