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My Story | Fay S., Victoria, Australia

Endometrial cancer, Stage 1A, May 2002 at 46
Total abdominal hysterectomy, bilateral salpingo-oophorectomy (TAH/BSO)

"It's good news, Fay. Your cancer was staged at 1a and you don't need any further treatment." I thanked Dr. S, hung up the phone, and looked at the piece of paper in front of me where I had written "1a." Then I heard strange sounds - low, growling moans. The sounds were coming from me, sounds of relief straight from the pit of my stomach. My husband gently held me for a very long time. My teenage daughter watched both of us. I felt truly blessed. We felt truly grateful.

My story really starts back in my childhood. Indecent sexual acts from an uncle and two cousins left me feeling vulnerable and powerless. But I got on with my life, and a happy life it was, and still is. However I never really could cope with doctors - those old feelings of vulnerability always swept over me. I didn't trust them. I didn't want them touching me. Two days after the complicated birth of my daughter, I picked her up and left the hospital against the advice of the doctors. I had to get home to feel safe. Following a miscarriage in 1989, I had numerous tests and internal examinations. The gynaecologist was old, didn't say much, and didn't tell me what he was going to do to me or why. Worst of all, he was very rough. The strong desire to have a second child was the force that helped me to endure his examinations. I kept telling him that I was having hot flushes, but he didn't believe me until a blood test revealed premature ovarian failure - menopause at 33 years of age. I grieved for the loss of my fertility.

But once again, I got on with my life. Because of my anger towards this doctor as well as my childhood experiences, I decided I would never let another doctor touch me again. And I didn't until May 2002.

In December 2001, I started to bleed - and it was very heavy. After three weeks, I went to the General Practitioner who prescribed non-hormonal medication to stop the bleeding. I had 100 tablets, and a repeat prescription for another 200 tablets. They worked, so I stopped taking them. Within days the bleeding started again. This time I went to a women's clinic - hoping it was a hormonal problem, and terrified that the doctor might want to examine me. She wanted me to have a trans-vaginal ultrasound to measure the uterine lining. This was the first of three such procedures over the next few months. Although not physically painful, the ultrasounds were emotionally painful before, during, and afterwards. Memories and unpleasant feelings started to resurface.

The ultrasounds indicated my uterine lining was thickened and there were ovarian cysts. I was told that I needed a hysteroscopy. I had never heard of such a procedure so I phoned the clinic to ask what it was. I asked about sedation and anesthesia. "Oh, we don't do that here," she replied. So I told her that they would have to tie me to the table first. The poor nurse didn't know what to say.

So I knew it was finally time for me to have some sexual assault counseling. This was a real help. I also knew that my past gynaecological experiences were unpleasant because I didn't know what was happening - nothing was explained. I needed to be informed. I made an appointment with the clinic nurse so she could show me the instruments, the procedure room and couch, and explain the procedure to me, step by step. This also helped me. Information is empowering. I insisted on having my husband present to hold my hand.

By now it was early May. I hadn't slept in weeks. On the day of the hysteroscopy, I was shaking at the knees, my heart was pounding, and my throat was dry with fear.

Dr. M was gentle. He kept talking to me and kept making me look at him. He found a number of polyps in my uterus and on my cervix. Some were large, with their own blood supply. He seemed a little upset, saying, "You are too young." At the time, I didn't really know why Dr. M was upset; I didn't think polyps were such a big deal.

When my husband and I got home, I turned to him and said that the results of the uterine biopsy might turn our lives upside down. Two days later the phone rang at 8:00 a.m. I was at home alone. It was Dr. M, he said, "There's no easy way to tell you this, but you have uterine cancer." From then on, our lives were turned upside down. My husband came home. He cried. When my daughter came home from school, she cried. Eventually, I cried too.

I was referred to a gynaecologist-oncologist who told me that I would need to have a hysterectomy. The fallopian tubes, ovaries, and some lymph nodes would be removed as well. She answered my questions. She understood my fears. She was a caring and compassionate woman and for the first time I trusted a doctor. But I still didn't think I would be able to go through with surgery. I didn't think I would be able to cope with being trapped in hospital bed, hooked up to drips, not being able to run home to safety.

I knew I needed some help. The thought of surgery was just too hard. At the time, it seemed like it would be easier to forget the whole thing and let the disease run its course.

But one night I found I asked for some help. These wonderful women prepared me for my surgery. Through cyberland they came to me with open arms and warm hearts. These women surrounded me with the type of support I needed - a connection with women who understood what I was feeling. My questions were answered so there would be no surprises. They understood my somewhat irrational need to have my car at the hospital in case I changed my mind at the last minute. Those e-mail hugs meant so much to me. These women understood how scared I was and told me that it was ok to feel fear because it meant that I was being courageous. When the time drew near, they told me to 'Fear Not' and to go 'resolutely' to hospital - and I did. I knew if my husband was anywhere near me before surgery I might just make him take me home again. So I drove myself to hospital - I needed to go there alone.

I went alone in a physical sense, but I knew that my special support people from around the world were with me in my heart. I felt strong. I held my head high. I told the nurses and the doctors that my car was in the carpark in case I changed my mind. I explained they needed to tell me what they would be doing to me and perhaps a bit of sedation to hinder my ability to drive. My best friend sat with me until 11:00 p.m. on admission day and was back at 6:00 a.m. the next morning. When it was time to go to theatre - my husband arrived to kiss me. They wheeled me away. It was time to get this cancer out of my body. I coped with the surgery and with the hospital admission. One week later I received the phone call that started this story. It's two months later and I feel great. With the ongoing support of the community, I am adjusting to my new life as a cancer survivor. It is a different life, full of richness, and one I am determined to enjoy.

December 2002

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