Ovarian Cancer Research Foundation

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2006 - 2007

The first two years

2006

When it all changed

I was still living at home but trying to save up to buy a place and move out. In hindsight, I wish I’d been more present—but I was pretty busy trying to find myself in the working (adult!) world and probably came and went a little bit like a ship in the night.

It was a Monday morning in January when Mandy went to an appointment with her local GP, Dr. Walker. She only went to see her initially for a check up because she’d lost weight and didn’t feel like eating much. That’s the thing about ovarian cancer, it remains too silent for too long . That first appointment quickly led to blood tests, a CT scan, an ultrasound and fluid being removed from Mandy’s abdomen. Things went from a blissful normality to a dire prognosis in 10 short days.

It was January 23, a Monday. I vividly remember that I’d just gotten out of the shower and was in a towel when Mum said, “Can you pop back into the lounge room when you’re dressed, I've got something to talk to you about.” I just assumed it wasn't going to be particularly important so I plonked on the couch in my towel and said, “No worries, tell me now.” With the Australian Open was on TV in the background Mum said “I have ovarian cancer” . I had NO idea what ovarian cancer was, and whilst it was upsetting, I think at the time I just assumed that she’d beat it.

Thursday, 12 January 2006

Appointment with Dr. Walker. Went for some blood tests. Prob need a colonoscopy.

Friday, 20 January 2006

Ultrasound at Cabrini and fluid being removed. Plus footballers over for dinner.

Mum lost the four closest people in her life to cancer before she was diagnosed. She was married the first time when she was 19 and at just 21 her husband died of non hodgkin lymphoma.

Then she lost her boss and close friend to leukaemia, her dad to lung cancer and her mum to a cancer of which the original source was never really known. Mum always remembered my Grandma letting the elastic in her pants loose because she was so bloated, now it seems likely that she too had ovarian cancer. So Mum lived her cancer life having watched it cut down four people she loved deeply, and I’ve always thought about how scary that must have made it for her.

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Monday, 23 January 2006

Appointment with Dr. Walker. Confirmed OvCa.

“I was devastated when she was diagnosed. Neither of us knew anything at all about ovarian cancer so it was a steep learning curve. Telling the girls was one of the most difficult things. It was pretty grim. When Mandy saw the GynOnc for the first time and he wanted to do surgery the next day, I knew the prognosis wasn’t good.“

- Philip Herbert (Mandy’s husband)

Friday, January 27 2006

Surgery (the 'hamburger with the lot' operation) at 5.20pm. Eeeeeeek. Can hopefully go home by Feb 6.

Monday, 13 February 2006

The beginning

Learning about the cancer itself was the first step—we had no idea about it. It was pretty shocking to hear the stats and the prognosis in the days following Mum’s diagnosis. The doctors said if she survived 18 months it would be pretty good. Even though I heard that, I still remember thinking, “That’s what happens to other people, it won’t be Mum.”

Saturday, 4 March 2006

Ros and Trevor’s wedding. Hair fell out.

That first chemo

Some chemo knocked Mum about more than others and the doctors would switch up the combos when that happened. Part of trying to create an individualised plan for her was making sure the combo she had was the best at defeating the disease but also worked for her in terms of the severity of side effects.

The first round of chemo was probably the worst. Mum’s hair started falling out at my cousin Ros’ wedding and in her typical style we joked around using the hair she’d lost as a pretend moustache and snapped some photos. It was her eyebrows she cared about most though—and they never came back.

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Tuesday, 9 May 2006

Chemo 5 of 6

Tuesday, 30 May 2006

Chemo 6 of 6. Finished the first round.

“I had just finished studying when mum was diagnosed and was only working part time, so that gave me the flexibility to drive her to some of her early chemo appointments. She quickly made friends with all the nurses and hospital staff. She took the time to know them all by name, and find out what she could about their families and especially their pets!”

- Penny (Mandy’s younger daughter)

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Monday, 17 July 2006

After six months of treatment a CT scan showed no evidence of disease (NED). Over the course of the next year Mandy had regular CA125 tests , CT scans, a colonoscopy, ultrasounds and constant doctor’s appointments for monitoring. Things were looking okay until almost exactly one year after her clear scan. Mandy’s medical team had early discussions about the possibility of her joining a trial at that stage but they decided that getting straight back into chemo was going to be a better course of action for her.

One of a few cheeky benefits

Mum was sometimes given steroids to counter the side effects of chemo. They gave her a lot of her strength and energy back and then she’d crash when it all balanced out.

Mum made the most of it though—the first thing she’d always do once she had them was clean the house from top to bottom. We used to joke and invite her around to our house to clean every time she had them. It was Mum’s humour and positivity that really carried us all through. For our sake she isolated her fears and frustrations, put them into a box and moved it aside to protect us. Sometimes when she was down she’d say, “It's been one of those days, I’ve spent some time on the "pity potty" but I've flushed it now and I'm off.” Even in her toughest moments, she’d find a way to make light of it all.

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Tuesday, 24 July 2007

“They found seven hot spots, slow growing. I had an appointment with Dr. Garry Richardson re: a clinical trial and a port inserted for easy treatment.”

The risk we face

There’s no BRCA 1 or 2 gene mutation in our family but since Mum’s diagnosis Penny and I have been getting a CA125 test every six months and an ultrasound every two years, just in case. We know our baseline CA125 and it gives us the reassurance we need to know that if ovarian cancer was detected hopefully it would still be in its early stages.

Tuesday, August 14, 2007

A Tuesday morning and the first chemo back—a combo of Carbo and Gemzar.

September, October, November

More Gemzar. Then Carbo and Gemzar and then a reaction. Repeat chemo, repeat reaction. 15 infusions down now.

December 2007

PET SCAN = , CA125 = 9
CLEAR

After two years of treatment, including debulking surgery, port insertions, 15 chemo infusions, multiple side effects and complications and a number of delays when her neutrophils levels dropped too low for chemo, Mandy went in for a CA125 test (something she did most weeks through treatment) in early December.

When things were really bad her CA125 level was up in the 1000s. On this day it was down to 9. Finally. Her doctors followed up with a PET scan and delivered the best possible news—Mandy was in the clear.

Getting the all clear

Mum would report her CA125 numbers to the family every time she was tested. And when they were low enough she’d have some fun with the announcements to try to turn what was a scary process into something less fearful.

We’re big Demons fans so she’d reference the Demons player whose jumper number corresponded with her CA125 level. Almost two years after Mum’s diagnosis she gave us the news that “her levels were David Neitz (#9)” and that her PET scan was clear. We were all so happy! I think I was still blissfully ignorant about just how bad an ovarian cancer diagnosis generally is though. I figured she’d ‘won’ and that life would shift back to normal. I suppose I felt a bit smug that I’d known all along that it couldn't be that bad. How wrong I was.

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The next phase

The remission and the relapse

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