Ovarian Cancer Research Foundation - Mandy's Timeline | 2010-2015: The second half of the decade

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2010 - 2015

The second half of the decade

2010

The newest family member

Roy joined the family at the best possible time. Mum had just had a bad bowel obstruction and was in hospital during his first weeks with us. It gave her something she needed to get home for.

But he ultimately became closest to Dad, which gave Mum a lot of comfort because she knew he would need to be Dad’s best mate eventually.

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Over the next few years Mandy continued her treatment often intertwined with and delayed by a lot of complications that were incredibly tough for her to work through and difficult for her family to witness. But they pushed on with life, found the silver linings and made the most of their time together. There were milestones throughout that no one should ever have to face (50th chemo infusion, 12th CT scan). But like always, Mandy led the way—with her humour the biggest ally for them all.

Saturday, 30 January 2010

Terrible gut ache, vomiting. Got my results at Cabrini in emergency today—another bowel obstruction.

Saturday, 13 February 2010

Gut ache. Back to emergency again. Plan for 12 total infusions across the rest of 2010. Also got hand/foot syndrome, very bad.

The simple things

I had a friend’s wedding to go to and I was on crutches and didn’t have a dress. Mum was well enough to drive so I asked her to take me to Chadstone Shopping Centre to quickly grab a dress and head home. When we got there she said she wanted to come in and we ended up making a full day of it, we wandered around most of Chadstone, fought at the check out about who was buying my things, and when we stopped for lunch in the food court I remember thinking, “Wow, this is the stuff that mums and daughters do all the time and we haven’t done it for years”. I’d forgotten the joys of such a simple thing. That’s how it is with the “simple things” though, when they’re taken away from you, you realise just how special they were.

Tuesday, 1 February 2011

Heart palpitations and pain, CT scan to rule out clot in lung.

Friday, 4 March 2011

Chemo again—Cisplatin/Gemzar. My 50th infusion. Port issues, urgh, had to be removed and replaced.

Monday, 4 April 2011

Aches, thrush starting in mouth again, balding some more. In hospital for Good Friday this week for my 54th infusion.

Sometime in May 2011

Neutrophils were too low so no chemo right now. Bone marrow is toxic, elbows are sore, hands are bad, yukk. Also out of petrol, and deaf.

Saturday, 25 June 2011

CA 125 = 8. All okay for now.

Wednesday, 16 November 2011

My 12th CT scan ever

Wednesday, 30 November 2011

PET scan. My lymph were involved. Likely another bowel obstruction around the corner.

Christmas 2011

One week off, but not really

February 2012

More chemo. Next week is my 67th infusion and last of the round. Gutty, kidney grabs, very very hot, and weeing lots. Temperature up 37+.

Sunday April 1 - Thursday April 19 2012

Bad cramps, distended, admitted to ER. Yet another partial bowel obstruction. Had to get an NG tube. Home on April 5. 6th recurrence, chemo again, Cisplatin/Gemzar this time. And my gut ache is subsiding at last.

Tuesday, 1 May 2012

Platelets too low for chemo. They are 49, should be 1500. Also, cold. Will need a platelet transfusion.

Thursday, 5 July 2012

My final chemo of this cycle (the 75th infusion)

Wednesday, 28 November 2012

OCRF cocktail party tonight. Stomach was like a coffee percolator, nauseated and very tired, but went anyway. CA125 up to 51 at the moment.

Friday, 7 December 2012

Chemo begins again—Cisplatin/Gemzar and three infusions in December before bloods get too low.

Mid-February 2013

Chemo up to the 81st infusion but did need the blood transfusion to enable chemo to continue.

June and July 2013

Constant hot, cold, chills, chest infection, terrible headache, no appetite. Also gut aches, CA125 back up to 67, 6th vomit (big time), feeling lousy. Chemo starts again, it will be Cisplatin this time.

October 2013

CA125 down to 10 in early October, Diverticulosis showed on the scan in my sigmoid colon.

December 2013

CA125s going up. Gut aches on Christmas Day.

Thursday, 2 January 2014

New Year. Start chemo again today (CA125 up to 86), 90th infusion happens on 14 January, a full dose of Cisplatin/Gemzar.

Friday, 31 January 2014

Low platelets and low neutrophils but CA125 down to 53 at least. Need more food with B12 and Folic Acid to try to boost platelets and neutrophils. Very tired, kidney grabs, very melancholy, emotionally strained.

February 2014

Very tired and dizzy, it feels like a bus has hit me. Chemo on and off until the last one on 10 April. It will be my 96th infusion. CA125 down to 10.

Shortly after Mandy was diagnosed she found an online forum of women from around the world who had ovarian cancer. Those women became people she confided in, went to for advice and support and shared the load of ovarian cancer with. They got it. They understood. Because they had their own stories. Reets was one of those women.

Thursday, 6 March 2014

Reets died. Murdered by ovarian cancer.

Tuesday, 1 July 2014

CA125 back up to 54. Andrew (my oncologist) is looking at trials and referred me to Jason Lickliter for the PARPS trial . Thinking about these trial "smart bombs". My questions: If you survive, do you immediately start cycle 2? Should I bring lunch? Will I lose my hair?

Tuesday, 8 July 2014

My family has raised the money for the research, it’s time I did my bit and became the research. Agreed to the trial and had a physical exam. ECG, BP, bloods, urine, etc. and CT scan.

Wednesday, 9 July 2014

Day 1 of trial. 10 hours at the Alfred (Hospital). Day 3 of the trial—take the drug at the clinic in the morning and go home in the evening. Day 4 of trial—take drug at home.

Monday, 20 April 2015

Two litres of ascites was drained from my abdomen and CA125 has climbed to 670.

Wednesday, 15 July 2015

Reached a total of 104 chemo, today was the last one for this round.

A rare moment of celebration

On July 21, 2015 Mum turned 60. We wanted to do something fun to surprise her so I invited a bunch of AFL footballers over to my place and when she arrived she opened the door to a room full of Demons players that she’d come to know over the years in her generous capacity as their ‘other mum’

(the one that cooked monthly roast dinners for them because they were mostly young and living away from their own families!) It was probably the best birthday gift we could have given her. She always used to say, "I don't really like football but I like footballers."

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“Mum was often the life of the party. That’s one thing that didn’t change much after her diagnosis. Even when she wasn’t very well, she always made every effort to brave the crowd and wow everyone with her big cheeky smile. There were laughs a plenty because she had a joke or two for every occasion. I think her humour helped her get by too.”

- Penny

Finding support in unlikely places

When Mum was diagnosed she went online looking for support and information and found an ovarian cancer forum. She met a lot of women there and used to refer to them as "the girls with whom I’m having internet relations", but she became closest to a woman named Fran in the United States.

Penny and I went to New York to meet her in person and she became like family. She still calls us "Kiddo". I wasn’t sure what to think about the whole forum thing in the beginning but it meant a lot to Mum. It meant she could share the burden with other women going through a similar thing.

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“I first met Mands (aj to me...always lowercase and no punctuation!) somewhere in the early 2000s. We met in an online ovarian cancer group. Since I used green type to help differentiate between all conversants, aj promptly named me Kermy after Kermit the frog. Lucky me!

Our little chat group met almost daily and grew. At one point we were online to China, Australia, Canada, United States and England on any given night! Pretty amazing stuff. aj shared her anger at the "beastie" but never showed fear. Her wit was absolutely wicked and INCREDIBLE! She experienced multiple recurrences and the sessions of chemo like a champion, squeezing all the life she could into the periods of remission. Announcements of dropping CA-125 numbers were met with joy from us all. Rising numbers were met with hope and encouragement to "kick the beastie to the curb". Her warmth and loving spirit kept us all going in some dark times as we watched and mourned our members slowly passing away, one at a time.

Though I never met aj, I felt that I knew her. Having met her two remarkable daughters in New York was absolutely wonderful! My heart broke when I received word of her passing in January 2017. It remains so.”

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- Fran Weed (Kerm)

What community really means

From the day Mum was diagnosed, support became central to our wellbeing. And we got so much of that support from the OCRF. It gave us hope and a focus and the type of community that makes you feel far less alone.

There have been some extraordinary friendships struck as a result of our involvement with the OCRF—it’s connected us to inspiring people we wouldn’t have met otherwise and that has been really magic.

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Wednesday, 21 October 2015

More fluid build up. Another 3.5 litres of ascites drained.

Christmas Day with ovarian cancer

Christmas was always difficult if Mum wasn’t well, but she was incredible at ‘getting herself up and about’ for big occasions. Regardless of how terrible she felt she’d push it aside for our sake, so we could have a good day

The most important element of our Christmas Day happened no matter what—Mum cooked the gravy to go with Dad’s amazing turkey. She never missed making it until her last Christmas Day when I stepped in and now I am responsible for her gravy every year.

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The clinical trial

A good quality of life is hard to come by when you have ovarian cancer so we had a strong focus on dialing up the good days and the clinical trial really helped that enormously. On July 4, 2015 I got married.

I never would have imagined the possibility of not having my Mum there on one of the most meaningful days of my life—who does? But thanks to the trial, she was well enough to be there and experience it all with me. And that was everything.

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“We started looking for possible clinical trials when the standard chemotherapies had been all used for Mandy and we were running out of options. Thankfully, she was still in good shape and well enough to try other options like a trial.”

- Dr Andrew Haydon, Mandy’s oncologist

The next phase

Our last year

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