Marina passed away peacefully on 10 January 2018, a few weeks earlier than expected. Her daughters are safe in the care of a trusted legal guardian. May she rest in peace.
My name is Marina and I have just spent my last Christmas with my daughters. I have been battling metastatic breast cancer for the past six years but my oncologist has told me I only have a few weeks left to live.
The thing is I can feel it in my body now. I am tired and know that I am at the end.
When I was first diagnosed I was given six months to two years to live, so I've already exceeded medical expectations. I've had more rounds of chemotherapy than my oncologist considered humanly possible, there have been radiation treatments, multiple operations including a mastectomy, and many other courses of medication.
At the moment I'm on a course of a drug called Ibrance, which has recently been in the news. With the help of an amazing insurance policy and an incredible oncology team I was able to buy five months' worth of Ibrance for $30,000. Yep, $30,000.
Ibrance is the drug women are fighting to get funded in New Zealand due to its high success rate in halting the progression of metastatic breast cancer. Assuming I respond to the drug (because my last round of chemo failed) it will keep me alive until March.
My twin daughters Olivia and Ella turn eight in March and I will do anything it takes to make it to their birthday.
Ibrance is basically chemo with all the effects of chemo, so managing the nausea, pain and exhaustion is challenging. I do truly appreciate, though, how privileged I am to be able to afford health insurance which has chemotherapy cover. I am also grateful to have an oncologist prepared to go the extra mile for me.
There are an estimated 400 women in New Zealand that will die sooner than they would have because they don't have access to Ibrance and as a country we should find this completely unacceptable.
In my life I have always worked hard and valued education. I started my career as a nurse then later retrained to become a teacher. In 2016 I graduated from Massey University with a Post Graduate Diploma in Education, which I was very proud to receive in front of my daughters, and that same year I received a Zonta New Zealand 50 Women of Achievement award.
But to my mind my greatest achievement has always been my children. My daughters are my world and the only reason I have fought so hard for so long to stay alive.
To say it was quite a journey to conceive them would be an understatement. I underwent seven years of IVF treatment, and in the end they were conceived using a donor egg and donor sperm (the first in New Zealand). To have found out when they were not-quite-two that I had cancer seemed a cruel twist of fate.
I have struggled with acceptance - even though my liver is now riddled with tumours and my oncologist has told me it is time to find acceptance. A few weeks ago I sat next to a woman in the waiting room at the oncology unit and she shared with me that she only has a few months left too.
She appeared so at peace with what lay ahead and I found her attitude confusing. I didn't know if I was jealous of her or angry or sad; she said her daughter won't accept it and she found this frustrating and I wanted to say why did her daughter need to accept it?
Then I realised that she accepted it. That night I lay in bed wondering how do you do that? How do you accept that you need to stop fighting - and how can you stop fighting when your enemy is so evil?
The girls have always known about my illness but they've seen me fight for so long… seen me lose my hair then grow my hair back… They don't yet realise that this really is the end now.
They keep saying 'next year at Christmas can we…' and 'when we do this again next year', and it's ripping my heart each time because I know I won't be part of their next Christmas.
A big part of my journey over the past six years has been finding someone to replace me. Not replace me, but take over from where I left off. It has been a difficult journey, marked by many highs and lows.
I have always raised them alone and the only extended family I have, haven't been a part of my life. Family friends had offered to take the girls when they were toddlers and we invested a lot of time into building memories together. The couple even had bedrooms ready for them.
But I didn't die when the doctors had predicted I would, and over time our relationship became strained. It's complicated. Where do the boundaries fall between a mother and someone who is going to become your children's mother?
I met another couple who offered to have the girls and for a while we pursued that, but that also fell through. I went on to reconnect with extended family and they offered to take the girls. Life couldn't have felt more perfect. But our relationship broke down too.
What I have settled on is a legal guardian who in the past two years has become a trusted friend. I knew I had made the right decision when one of my daughters said: "One day we're going to love that man."
Perhaps it was the fear of being replaced by another mother that had always got in the way before. It seems ironic that after this six-year search for a maternal figure, what I've settled on is a paternal figure.
The next part is the part I dread the most – saying goodbye. How does a mother say goodbye to her children? I don't even know where to begin.
I love my daughters so much it actually hurts. I don't want to leave them and I feel robbed of my time with them, but I'm also thankful for the seven precious years we've had.
Considering I've been ill for so much of that time we have packed a lot of living in. I've taken them to Paris and to England to see where my family are from. We've laughed together, cried together and always, always talked our heads off.
As a former history teacher I am a little obsessed with recording everything. I have documented the girls' entire lives in the form of photo albums, scrapbooks and a Pandora bead collection, with beads to represent every special moment we've ever shared. I have written the girls letters to open when they sit their first exams, the night before their weddings and to mark the births of their children. I've even kept the clothes they have worn on special occasions.
My fastidiousness has actually become a bit of an 'in joke' now, with the girls often saying to me, 'Oh, you'll have to record that.'
But I know they understand. I never want the girls to forget me.
I haven't been a perfect mum but I've done my best and I hope that was enough.
What I know is that my girls are amazing little people who are going to grow up to do amazing things. They're smart, they're funny, they're curious. They are, quite simply, my everything.
This story was completed in December 2017 and published with permission from Marina's next of kin.
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