Ovarian Cancer Research Foundation - Mandy's Timeline

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2016

Our last year

2016

A decade

It had been 10 years since Mum was diagnosed. We knew we had to be grateful for the good times we got, those years were a significant bonus when you consider the initial prognosis was pretty terrible—and no doubt the research, the trials, the individualised treatment plans all contributed to giving her, giving us all, that extra time. But that doesn’t change how horrific it was to learn that the cancer had worked its way around the success of the trial drug Mum was on.

We knew the risks, a trial is exactly what it says it is, it’s a trial. And when assessing whether or not to take part in one, the agreement notes that it could be fatal—something we all had to grapple with in deciding whether or not to do it. But Mum knew that not only could the trial help her, it would help women in the future.

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When Mandy was first diagnosed her doctors informed her and her family that it would be extremely unlikely that she would survive longer than 18 months. Five years was almost out of the question, let alone a decade.

For the last 18 months the trial (which Mandy referred to as the Mouse Factory) had provided a 'very palatable quality of life' for her but the dose was increased to its limit before it was considered 'no longer working' at the end of March 2016.

Bravely, Mandy agreed to a second trial with researcher Dr. Jason Lickliter (who she comically called the Mouse Doctor!). This was the first human trial of a new drug, which commenced on 3 November 2016. The first round of treatment was successful. But the second infusion three weeks later caused an anaphylactic reaction and a 'code blue'. Mandy was revived and rushed to the Alfred Emergency. Her participation in the trail ended.

Despite the challenges, we were still optimistic that Mum could shift to another trial and have some success. And she was prepared to give it another go, so we went for it. But it was just too much for her at that point. She had to be revived at one point after an anaphylactic reaction to a glucose drink she had to have before one of her scans. That was just one of a few big setbacks, the biggest being when she experienced a ‘code blue’ in the second round of the trial drug and had to be revived again. We rushed to the Alfred Hospital Emergency Department and walked in to find her sitting up in bed with big blingy earrings exclaiming, 'What are you all doing here and why do you look so concerned?” Even then she was trying to ease the load of it all for us with her humour.

In hindsight, that was really the beginning of the end. The hardest thing then was being so torn between wanting Mum to live on, but not in the state she was in, and not in pain.

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Tuesday, 1 March 2016

29 cycles of the trial drug (at 21 days per cycle). Dosage increases as the cancer strengthens. Trial starting to lose its effect.

Friday, 11 March 2016

Last mouse factory. CA125=233

“In December 2016, we lost our dear friend and fellow OCRF ambassador Helen Hatzis to ovarian cancer. This really rocked Mandy. Losing such a close friend and confidant to the disease she knew she was close to losing her own fight with was so difficult.”

- Philip

Our final moments

Mum was admitted to Cabrini Hospital in Brighton in December 2016 and spent a few weeks there for respite. Somehow she still had her humour, referring to it as her “Brighton Beach House”! She came home for Christmas and gave it her all to enjoy a tiny mouthful of turkey. We put together a huge Merry Christmas video from everyone we could and on Christmas morning we sat with Mum to watch it and cried together. It was pretty obvious it would be her last one with us.

By New Years Eve Mum had deteriorated significantly and Dad had to get emergency care to our home. He had to learn how to inject her with morphine and other drugs and I helped him care for her. It was a very low-key New Years. We ate spaghetti marinara whilst Mum slept.

A few days later we were able to get her into palliative care. I had a work trip followed by a holiday booked in Mexico for mid-January and we talked at length as to whether I should go. Mum insisted and was adamant that I needed to live my life. A few days into the holiday Dad called and said Mum only had another 24-48 hours left. I immediately tried to rearrange flights home, which was absolutely horrific. As I waited for a flight out of the small town I was in, in the south of Mexico, there was a brilliant blue butterfly tapping at the departure lounge window and I felt like it was Mum saying goodbye.

She died while I was in the air somewhere between Mexico City and LA. My sister rang to tell me just as we landed. I remember going into a bathroom to cry and a beautiful air hostess noticed and asked if I was okay—then, just instinctively, she said “has someone died?” When I sobbed, ‘Yes, my Mum’, she dropped her bag and threw her arms around me in the biggest warmest hug.

I now have a ‘thing’ for butterflies, and I always will.

Her final moments

Mandy’s cancer quickly took hold in the last few months of 2016. She was home with her family for a short time over Christmas and New Year before leaving this world and all those who loved her on 30 January 2017.

“I loved everything about Mandy. She was a wonderful person, a terrific mum and a devoted wife. I couldn’t have asked for anything more.”

- Philip

Let’s change the story
for future women

What you’ve read here is hard, but it’s real. This is what 1,800 more women in Australia will face in the year to come, and the years after that—unless we invest in research now to ensure our future women have a better chance of survival.

You can make that possible by starting a monthly donation to the OCRF today. Your regular gift will go directly to ovarian cancer research.

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2016

Our last year

Let’s change the storyfor future women

Let’s change the story
for future women