Tag: pancreatic cancer

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The gift of time

The day my mum was diagnosed with pancreatic cancer was the most frightening of my life. I sit here today, more than seven years later, and still, I can feel my heart racing when I remember. 

The quiver in my voice as I asked what the hell it all meant. 

My dad staying ever so strong for his baby girls. 

My mum defiant – we will beat this. 

We didn’t know then what we know now… 

Being told it was operable. That mum would be ok. And sitting down at the kitchen table being told that yes, the cancer will be cut out but we’ll still have to live with it hanging over our heads for years to come – fear of it returning. 

And then being told surgery was no longer an option. That doctors would do the best they could to keep my mum alive for as long as possible. But being told that it was a fine balance between quality of life and quantity.

Some days I forget what it was like. 

And some days, it’s clear as day. Racing to find mum’s gloves because she was cold from the chemo. Holding mum’s chemo bag just outside the shower door so it wouldn’t get wet. Sitting in recovery, alone, while I waited for her to come out of surgery to insert a stent. Shopping for wigs. 

Shopping for wedding dresses… 

The chemo days were hard. The days going back and forth to the hospital for radiation were hard. The days spent in the hospital to drain the build up of excess fluid were hard. 

But those days gave us more days.

They gave us days to shop for bridesmaids dresses and mother-of-the-bride dresses. I’ll never forget when my mum called my dad who was overseas at the time and told him she was buying two dresses for my wedding – one for the ceremony and one for the reception. My dad, only wanting to see his wife happy, simply said ‘whatever you want dear’. The smile on her face that day lit up the room. And then she turned to me and said ‘if I knew I was going to be this skinny, I would have chosen a more fitted dress’. She only ended up with one by the way. And she was absolutely radiant! 

Those days gave us more days.

They gave us holidays. They gave us family dinners. They gave us birthday parties. They gave us snuggles in bed. 

They gave me a walk down the aisle, with my dad and my mum.

They gave me her hand to hold, one last time. 

Those days were hard. But they gave us time. 

This year, World Pancreatic Cancer Day is about time. It’s about time that everyone knows the symptoms. It’s about time that everyone knows the horribly low survival rate. It’s about time that funding is directed to pancreatic cancer research and clinical trials. 

But for me, personally, it’s about the time I was given with my beautiful mum because the cancer was found relatively early. It was found early enough for longer treatment options. 

Imagine what would have happened if it was found earlier…

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The manifestation of grief

Grief manifests in very strange ways. And you never know when it’s going to hit.

It’s been an emotional rollercoaster of a month for me.

I’ve been working very hard on our pancreatic cancer awareness initiative #PurpleOurWorld and that always stirs up some feelings. I spoke to a lot of my mum’s students in the week leading up to World Pancreatic Cancer Day and it was a very difficult presentation to give. These were students who have been impacted heavily by my mum, she cared for them, educated them; for the eight hours that they were at school, she treated them as her own. The outpouring of love the school demonstrated was exceptional. Her ex-students went to great lengths to honour her memory, as did the staff she worked with.

Last week, I learnt something new. That for the rest of my life, grief can creep up on you, no matter what day or time. Something as small as the realisation that you won’t have access to a car for a weekend, while hours away from home, can send you into a tailspin.

Halfway through my panic attack, as I slowly understood why the tears were falling, I realised that no matter how old I get, there will always be a first time that I experience something that mum will miss. There will always be something that will make you remember, that will made you sad. Something you had no idea would affect you. There will always be some sort of reminder. And you never know how it is going to hit you. It could be the scorching heat that suddenly makes you anxious – all because she loved to swim. The shortness of breath could start just because you hear a song on the radio. Every time I hear Moondance on the radio, a flurry of emotions follows. It can all go downhill very rapidly, because you visit a place you last visited with her.

The day before mum’s birthday, I was watching our favourite show, Gilmore Girls (side note: why I’ve chosen to start re-watching every episode of a show dedicated to a mother-daughter duo, and a show my mum and I adored, is beyond me). I was already starting to tear up at random things, knowing the next day was going to be exceptionally hard and sad. And without so much of a warning, Thank Heavens For Little Girls blasts out through my television speakers. When I was little, my mum would sing this to me. Until she passed away, the song served as my ringtone whenever she was on the other end of the phone. The tears welled. Yet at the same time, a smile formed on my lips. Ever so slight, but it was there. I didn’t actually know what I was feeling but in hindsight, I guess it was a mixture of incredible sadness that I’ll never hear her off-tune voice sing out to me (never thought I’d say that), and a tinge of joy.

Because, when you lose someone, I think the scariest thing of all is to forget.

I’m petrified I’ll forget her voice, forget her touch, forget her smell. I’m so scared that I’ll forget the little things we used to share.

I think even though it may hit me at the most random times, without me even suspecting it, for me, the tears and heartache are a blessing in disguise. When I cry, and hopefully my tears will continue to be accompanied by the sliver of a smile, it’s only because I’m remembering her.

I don’t know why I worry though, my mum truly is unforgettable.

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Grief

Grief is a strange process. Some people expect you to be fine after a week, some a month, some a year. And some don’t understand how you can’t be ‘over it’ after five years. The thing is, everyone grieves differently and everyone copes differently.

And the truth is, one never truly gets over the loss of a loved one.

It seemed fitting to me that one of the first books I read after my mum passed away was one by Jodi Picoult. Mum and I always shared a love of Jodi’s books and would often debrief following a read – ‘did you pick the twist?’ ‘Did you expect that to happen?’

I didn’t read the blurb about Leaving Time before downloading it. Turns out it’s about a daughter searching for her mother after she disappears under mysterious circumstances. It’s also about the way elephants grieve.

There was a paragraph that really stayed with me, long after I’d read the final page:

“I think grief is like a really ugly couch. It never goes away. You can decorate around it; you can slap a doily on top of it; you can push it to the corner of the room – but eventually, you learn to live with it.”

Some people say that grief is a subjective state – a feeling that arises after a significant death. Whereas mourning is a set of rituals or behaviours according to your culture. In some cultures however, there is no difference. Some languages don’t even have a word for ‘grief’. Personally, I will be mourning and grieving for the rest of my life. I will mourn the loss of my mum, yes. But I will also be grieving for everything else that she will miss and everything else that we won’t be able to do together.

Cultures respond to death differently. In Islam, traditionally a person mourns for three days and then they must accept Allah’s verdict. For her husband, a woman mourns for four months and ten days.

In Hinduism, mourning lasts for 13 days. For Catholics, the length of mourning depends on the relationship with the deceased but three stages of mourning are distinguished – heavy, half and light.

While most animals have no qualms about leaving the weak to die alone, elephants often stay with their loved one for an extended period of time, watching over them and ensuring their body is safe until they can bury them.

In Judaism, there are stages of grief designed to help the mourner re-enter society. The shiva period – the first seven days after burial – where mourners are not allowed to do anything for themselves, sit on the floor or low stools, do not work and do not do things for comfort or pleasure. Mourners wear the clothes that they wore at the funeral and prayer services are held at the place where the shiva is held.

For me, the shiva period is a blur. I don’t know who came or went. My husband and I were camped on the floor of my mum’s study. I don’t know what I ate or how I even moved around the house. But those seven days came and went, and following, I was expected to return to some sort of normalcy.

The sholoshim marks the end of the mourning period for siblings, parents and spouse of the deceased. This lasts until the thirtieth day after burial. During this time, mourners can go back to work and their daily routine but cannot attend parties, shave or cut their hair and do not listen to music (among other things).

For a child of the deceased, mourning continues for a year.

In July, it was a year (according to the Hebrew calendar) since my mother passed away.

It’s been a hard year, there’s no doubt about that. They say that the first is the hardest but I’m not sure it’s ever going to be easy.

It was a year of firsts – first birthdays without her, first anniversaries without her, first holidays, first holy days.

And I’m not sure I’m quite ready to let that go. Because the thing is, you never stop grieving for the loss of a loved one. You grieve for the loss of memories created, you grieve for the loss of the laughter you would have shared, you grieve for the loss of hugs and kisses, coffee dates and dinners. You grieve for the questions that go unanswered. There will always be something you’re grieving for.

But there are also moments where you realise just how far you’ve come and how strong you’ve been.

Since mum passed away, I’ve quit my job and gone freelance, my family and I have launched an awareness campaign for pancreatic cancer (#PurpleOurWorld), we sold our family home and my dad bought a beautiful new home – one where we will make the most magical memories together as our family grows. We’ve been on two wonderful family holidays together, where we cried because she wasn’t there, yet still managed to laugh and enjoy ourselves. My husband and I continue to build our own home together, one where my mum will forever be present. My sister and brother-in-law found a new home for their little family and my nephew continues to grow and develop into a spirited and special little man.

The thing is, I will never come out of mourning. The official period may be over but like Jodi said, you just learn to live with it. You learn to see grief for what it is, deal with it when you have to and adapt when you can’t. Cry when you want to and smile when you can. Because when you’ve lost a person who shaped you, who loved you and cared for you, who raised you and taught you everything you know, finding your way out of the darkness is all you can really do.

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Facing Mother’s Day

Dear friends,

I know you’re looking forward to Mother’s Day. If you’re a mother yourself, I know this day is doubly as important.

But when you’re talking and planning and sharing, please spare a thought for little old me – the girl who’s lost her mum.

Everywhere I look there is a reminder that mother’s day is approaching. Signs, cards, emails, reminders that I should be buying my mother a present because she is wonderful.

Buy her a mug with your face on it. Buy her some comfy pyjamas. Buy her a beautiful frame of you and your siblings so she can wake up to it everyday.

Everywhere I look there is a reminder that mother’s day is approaching.

And everywhere I look there is a reminder that my mother’s not here to celebrate.

I wish I could buy her a present. I wish I could shower her in cheesy gifts to show her how much I love her. Because she is the most magnificent mother a child could ever dream of having. And she was taken way too soon.

Just remember friends, that this year will be my first mother’s day without her. Know that I am dreading it.

Please understand that I have no children of my own so there truly is not one single thing to look forward to.

Don’t worry, I’ll listen as you tell me of your plans. I’ll smile and tell you to have a good time. I’ll tell you to hug your mum a little closer. Tell her that you love her just that one extra time. Remind her that she is beautiful and that everything you are, every fibre of your being, is because she made you that way.

Yet understand that secretly I’ll be so saddened that you get to make those plans. I’ll feel a sense of loss that I can’t make those plans too. There will be a touch of jealousy. And I’ll be upset that while you’re out smiling with your mums, I’m at home weeping for mine, because no matter how old you are, there will always be days when you just need your mummy.

Know that every day I ache for my mum and today will be so much worse.

Know that today is a reminder that there are so many things in my life I wish my mother were here to share.

Understand that you should never take any moment for granted. Be there with your mother. Be totally and one hundred per cent present – mentally, physically and emotionally.

Remember that no matter how long my mother has been gone, my bond with her is unbreakable. Yet today, is a reminder that I cannot physically see her, touch her or talk to her.

Also know that this doesn’t mean you have to hide your plans from me. All I ask is that you recognise that I’m hurting. Hold my hand a bit, give me a smile and that little nod which shows me you’re thinking of me.

Don’t try to tell me that you understand. I know you mean well. You know I’m broken. You know that my heart is falling into a million pieces. You know how sad I am.

But the truth is, you don’t. Nobody knows. Even if you have lost a parent, you don’t know how I feel to lose my parent. You’re not me losing my mummy. My incredible mummy who taught me so much. My best friend.

Everywhere I look there is a reminder that mother’s day is approaching. And every time I’m faced with another email or another card display I just want to throw my computer at the wall or smash the billboard with my very own hands. On Sunday, I’ll face my first Mother’s Day without my mother. And my first Mother’s Day without my nana. And I’m heartbroken.

We never really put that much importance on any particular day to celebrate our parents. Every day is mother’s day and every other day is father’s day.

Remember friends, cherish every moment with that fabulous woman you call mum. Because now I wish, more than anything in the world, I had taken advantage of every mother’s day I had with her.

Because I’ll never get those Sundays back.

And I’ll never again get to wake up, pick up the phone and say ‘Happy Mother’s Day Mum.’

 

This post first appeared on Essential Kids.

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New adventures

Today I embark on a new journey. I spoke to my mother a lot about taking control of my life. It was something she supported vehemently. It was something I believe she wanted to see. But I waited too long.

I always planned that I would someday throw in the towel and try to make a living by freelancing. I have always dreamed of writing. I relish the investigation, the construction of a well-researched piece. I love to spit my thoughts on a page and take my time, reading over and over again, changing sentences, chopping words, swapping paragraphs, until I’m 100% certain that it’s the best it can be.

My mum always believed that I could make a living out of writing. She urged me to take the chance. To resign from my 9-5 job. To set my home up as my tranquil domain where I could sit peacefully and write.

I always planned that when I grew up I would be my own boss, floating between my parents’ house, the local coffee shop, picnic blankets in the park, restaurants overlooking the beach and my own serene study. The thing is, I always planned to have my mum by my side. I always planned to pick up the phone and tell my mother where I was going to be that particular day, demanding that she meet me for coffee so that between typing, sips and bites, we could gossip the day away.

I know she’s proud of me for taking this step. I believe there was a moment when something in my heart clicked and insisted that I make the decision. I believe it was my mother pushing me in the right direction.

I have faith that I’ll succeed.

Because I know she’s right next to me as I sip my coffee and bite into my toast. I know she’s right next to me as I type these very words. I know she’s right next to me, guiding me along on this very scary but exhilarating path.

I have no choice but to succeed.

I made my mother a promise and what my mother wants, she gets.

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Home

We recently returned from our first family holiday without my mum.

Coming back to what will come to be known as our normal life was exceptionally difficult.

Here, at home, while she is constantly in my thoughts, there are a myriad of things to distract me from what my reality now is, a myriad of things tearing me away from dark thoughts. On the ship, cruising in the middle of nowhere with nothing to do but think, read, sleep and eat, my thoughts were always with her, every minute, every hour, every day.

Pacific IslandsThere was no escaping them.

She would have loved everything about that holiday. She would have grabbed every show, every quiz and every activity by the hand and participated in the lot.

She would have indulged in the food, and eaten all the milky desserts and the cheese that was on display, despite being lactose intolerant – because who the hell cares when it comes to enjoying life.

She would have been immersed in the water, trying to escape the uncomfortable heat.

She would have scurried after her two-year-old grandson as he took control of the baby pool, declaring it his and his alone where no one else was allowed to slide down his precious dolphin slide.

She would have been the first on the sand, commandeering our spot before rushing into the clear, blue water to float on its surface.

But most of all, she would have relished in the fact that her beloved family was together, 24 hours a day.

Every moment, I thought of how we needed this holiday. How horrific the past two years have been for us all. How terrifying it is to settle thoughts of life without her. Yet every moment I thought of how she needed this holiday. I thought of how we needed this holiday with her.

I know there will be hundreds of holidays without her. I know there will be loads of memories that we’ll have to create without her. I know that there are a lot of things that are coming my way that I’ll have to handle without her on speed dial. And while ‘normal’ life here keeps me constantly distracted, there’s no running away from that.

I miss my mother every day. And I will continue to miss her every day for the rest of my life. Perhaps what was most hard about our holiday is that family holidays are meant to be taken together, with the whole family in tow. For us, someone was missing.

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Happy birthday

Baby mumToday is mum’s 58th birthday. Normally, I’d get up and go to work, call her first thing and sing away. I’d probably call her four or five more times during the day and after I’d finished work for the day, head to her house to smother her in kisses. We’d head out for a family dinner and then on the weekend, she’d have her friends around to celebrate.

This year, we have to do it all without her. I can’t pick up the phone, even though I haven’t been able to delete her number. I can’t smother her in kisses. There’s no birthday present to hand over.

Today is another reminder that she’s not here.

Someone walked past me the other day wearing her perfume. My stomach contracted as the punch ploughed through. I was on a plane and in a confined space. For the next hour and a half I couldn’t escape the smell. And it hurt.

I forced myself to take three very big and deep breaths and closed my eyes.

I could see my mum spraying the perfume on her wrists and neck, and I could feel the smell moving its way through the house as she floated from room to room, changing handbags, putting on her shoes, lining her eyes with eyeliner and her lips with dark red lipstick. I could hear her voice asking whether she looked ok and I felt myself looking up at her, smiling and saying ‘yep’.

It’s amazing how something so small as smell can shatter your heart into a million pieces.

Today is mum’s 58th birthday.

Today, instead of celebrating with her, we’re celebrating for her.

We’ll spend the day brunching with her friends, playing with her grandson and having dinner as a family. Because my mother always celebrated everything and today is no exception.

Today we will celebrate my mum with food, friends and laughter. We’ll go for walks and pamper ourselves. We’ll spend the day together.

Because she wouldn’t have it any other way.

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Bullshit

Whoever coined the phrase time heals all wounds obviously never lost a loved one.

I call bullshit…

I doesn’t get easier. Nothing about this situation will ever get easier. You just learn how to manage the heartache.

I miss my mother more everyday. Because every day the reality of life without her sinks in just that little bit more.

I can’t bring myself to take her number out of my phone. I have picked up the phone to call her more times than I can count – wanting to ask her a million questions. How long should I cook the beef for? What shoes should I wear with my new dress? Wanting to tell her a million things.

But I can’t.

And that hurts… every day. It will continue to hurt… every day.

In fact, the hurting gets worse. There are so many things I’m yet to accomplish in life. And I’m going to have to do it all without her.

There are so many things we planned to share together. There are so many things that are yet to happen – exciting things that I planned to share with my mum. So many things that I thought I would be able to lean on her for.

Now I have to go it without mum. And that hurt, that heartache, that horror will never go away.

Time doesn’t heal any wounds. I will carry my wound with me for the rest of my life.

I will learn how to deal with my wound. I will learn how to bury it when I want to and deal with it when I have to. Slowly, slowly I will learn how to manage the hurt and the pain, and I will learn how cope. I will learn how to patch my heart.

Occasionally the wound will scab over. But then something will happen, something amazing will happen, and that wound will start to ooze all over again. Because for the rest of my life, someone … someone who was my whole world … will be missing.

 

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2 August

Today is my parent’s 34th wedding anniversary. I chose today, a very significant day to us and the first milestone that we’ve had to face without my mum, to share this with you all.

August 2 … same day, different years.

A day of unconditional love, laughter and happiness. And a day of heartbreak and pain.

Both a day of family.

A day of absolute contrasts, a day of remarkable similarities.

Fam photo 2 August 2013: my now husband proposed to me. I can still hear my mother’s reaction echoing in my ear ‘I’ll be here! I’ll walk her down the aisle’. I hugged her tight, with tears rolling down my cheeks, and vowed that I would move mountains to ensure that she would walk, step by step with me, as I married my best friend. That night, we celebrated with our families. And my mum couldn’t wipe the smile off her face.

2 August 2014: the world was in chaos – troubles in the Middle East, MH17 was shot down, an Air Algerie plane crashed. But none of these really resonated with me. Because my own world was crashing at exactly the same time. My mother started to lose her battle.

My mum was always always always the life of every party, radiating light, happiness and above all joy and laughter. She would ensure that every birthday, every anniversary and every celebration was marked, with a party if possible.

There’s no question that my mother was a fighter. She had strength and resilience like you wouldn’t believe. But she was also unbelievably scared of everything she was going to miss.

For 16 months she fought very hard against a cancer that generally claims lives within months, if not weeks, defying many medical beliefs. But she accomplished most of the goals she set for herself.

Jess & Daniel_1312The past year was a year of heartbreak and sadness sprinkled with some magical memories. Mum saw her grandson turn one, she celebrated my engagement, she enjoyed a wonderful family holiday with us and just five weeks ago she celebrated my cousin’s engagement with all three of her nephews and her soon-to-be niece. And almost five months ago, she walked me down the aisle and then danced the night away surrounded by all of her loved ones.

It was a Thursday night at about 10:30 when my sister called to say my mum had been taken to hospital. It was a call I had been dreading for 15 months. We rushed to the hospital to be by her side. She was diagnosed with pneumonia. She was already exceptionally frail and thin, and had been told a few times that she was too weak for chemotherapy. Every time her doctors said she couldn’t have chemo, I knew it was another step closer to losing her.

After just over a week, she moved to a rehabilitation hospital where she worked with physios and doctors to get her strength up before she came home. Two days after she came home, dad and mum told my sister and I that there was nothing else doctors could do. That it was a matter of months. In my heart, I knew that this moment was coming. But knowing doesn’t make it any easier. It didn’t change how hard my heart broke, sitting on my parent’s bed, hearing that I only had a few months left with my mum.

Just five days later, on the Friday night before she died, mum was determined to come to my new home to share our first Shabbat dinner at our apartment. This was her final goal. She came and watched as I lit my candles for the first time, as my husband said the prayer over the wine and as her grandson said the prayer over the Challah. And even though she was exceptionally uncomfortable, she stayed right until the end.

Family and friends meant everything to her and we have always been surrounded by a very large, loving and wonderfully crazy family. It’s how she lived and it’s how she passed away.

Ever so stubborn, on the morning of 2 August, she kept saying that she was feeling ok, despite struggling to breathe. By late morning, we’d called the doctor. That afternoon, her breathing laboured and she was given a sedative to help calm her. It was at that exact moment, lying next to her and holding her hand that I realised I was losing my mother.

There were many close calls on Saturday. My sister and I slept in the bed with her on Saturday night. My dad and uncle sat by her bedside, neither sleeping if the other’s eyes were closed. My aunts were nodding off on the floor and in the lounge room. My cousin was asleep on the couch. My husband and brother-in-law eventually went to sleep downstairs. My other aunt and uncle stayed until the wee hours of the morning. She was never alone.

On Sunday, my extended family floated in to our house, saying their goodbyes and early on Sunday afternoon she passed away peacefully, holding mine, my sister’s and my dad’s hands. There were about 20 members of her extended family in the room. We have been saying since she passed away that she was waiting for her family to be with her so she wouldn’t miss out on the party.

Just like my mother, I believe in visions. Those moments in life that give you an insight into what is coming. What fate will soon deliver. For the past 16 months, we’ve been unsure as to whether my grandfather has understood what has been happening. Suffering a stroke almost 27 years ago, my grandfather’s memory is very diminished. The moment he walked into the room, he suddenly understood. Despite having been asleep for several hours, mum opened her eyes when she heard her father’s voice. Despite not having moved anything except her legs, she hugged her grandson back when he came in to say goodbye. She squeezed my hand several times when I spoke to her. And just before she passed away, she opened her eyes and looked at my father. Those moments will stay with me and comfort me for the rest of my life.

While the past sixteen months have definitely been harrowing for our family, we have been surrounded by the most loving, caring and compassionate friends and community. The outpouring of support and kindness that we have received has been overwhelming. It is a true testament to the person my mother was – loyal and generous who touched so many people’s lives. The number is incomprehensible. I will forever be grateful to those people who have surrounded us with such love, care and warmth. It has shown how amazing people can be, and while nothing can possibly take away the pain, the words of comfort definitely touched our hearts.

For seven days, my life stood still. The world was moving around me but I just couldn’t be part of it. I just wanted to sit. I didn’t have the energy to talk, to move, to do things. I just wanted to sit, watch and listen, hoping that it would somehow sink in.

And then all of a sudden, normality tried to creep it’s way back in.

But it will never be the same normal.

Until 16 months ago there was ‘normal’ – what my life had been for 26 years.

For 16 months there was ‘cancer normal’ – doctors appointments, chemo, wigs, vomiting, nausea, sprinkled with giggles, smiles and love.

I’m not sure what this next ‘normal’ will be.

There are moments that I break down, scream, cry and curse the world. When I don’t want to accept my new normal because I’m scared I’m moving too fast, not processing things, not giving myself enough time.

But there are also beautiful moments where I can see her smile and hear her voice. And it’s then that I realise that the last thing my mother would want me to do is wallow. I pick myself up. I go to work. I go for a walk. I play with my nephew. I cook and clean and do the laundry. Because as much as I wish time stood still as I boogied on the dance floor with my mother almost five months ago – me in my white gown, she in her burnt orange dress – it didn’t. Life goes on.

I know that the most significant moments in my future life will also be marked by sadness and longing for my mother. The birth of my children, birthdays, anniversaries, weddings.

IMAG0978But she will never be far away. I will forever hold every memory close. My children will know who their nana is. I will give them 12 kisses a day to help them grow, just like she gave me. I will fill my home with photos of her. I’ll play them videos so they know her voice. I will celebrate every milestone, with a party if possible.

I will continue her legacy the only way she would want me to, with laughter, love and a whole lot of smiles.

 

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I wish…

I’ve seen the ads being run in the UK about pancreatic cancer and I’ve read all the comments on the Mamamia post as well. It’s taken me a while to realise how I feel about the whole thing. Truth is, I’m still not quite sure what to think about anything when it comes to cancer.

When I was young, my aunty beat breast cancer. A few years ago, my great uncle passed away from prostate cancer. Right now, my mum is fighting pancreatic cancer.

So I understand what it’s like to go through the ‘good’ cancers and the ‘bad’ cancers. Everyone’s right – there is no such thing as a ‘good’ cancer. There’s no such thing as a ‘good’ illness. But when it comes to pancreatic cancer, the numbers speak for themselves. Between 2006 and 2010, the survival rate for pancreatic cancer was 5.2 per cent. For breast cancer it was 89.4.

It’s a pretty scary word. The big C word. You never think it’s going to happen to you.

It’s coming up to a year since my mum was diagnosed. When my parents told us, my sister and I were (thank goodness) with my aunt. A grown-up to take care of us, two grown up girls ourselves, one with a child I might add. I was holding my baby nephew. “Girls, it’s not good,” dad’s voice shook. Here he was, telling his two baby girls that their mother has cancer.

I couldn’t rip my eyes away from my nephew for fear I would burst. But I felt the bullet going right into my heart, I felt the knife delving into my chest and I felt the wind yanked right out of me. The baby started to cry. Almost like he knew something was wrong. All I could do was hold him as tight as I could.

We saw the gastroenterologist together. My mum apologised to him for having to break that kind of news to someone’s family. Because that’s just the person my mum is – she has cancer, and she says sorry. The four of us went in holding hands and walked out broken.

Broken but determined. As we walked out, my mum was the one comforting us. We’re going to beat this.

My sister, brother-in-law and nephew moved back in with my parents and I. My fiancée all but moved in as well. We spent the Easter long weekend burrowed at home. Family and friends poured in and out. Family and friends who made my mum laugh. People who never made my mum repeat things or talk about anything she didn’t want to talk about, who made my mum feel normal.

But it was still there… lurking.

After facing a barrage of tests already, my mum went for several more. Ones that would tell us where the tumour was, what it was holding onto and how we were going to beat this.

We were told she would have an operation almost immediately. Her whole pancreas was going to be removed. Already a type-2 diabetic, my mum would become insulin dependent. Not ideal… but manageable. That’s a word that’s been used throughout this whole process – manageable. Not having a pancreas. It’s not ideal, but it’s manageable. Chemo. It’s not ideal, but it’s manageable.

The operation was booked in. We were geared up for it. The tumour was going to come out. It wasn’t going to harm my mum anymore. And then she would undergo chemo as insurance.

And then, as quickly as it was planned, it was snatched away.

The tumour was wrapped around the portal vein. It needs to be shrunk and disconnected in order for my mum to have a more successful chance at beating the cancer.

This year, my mum has undergone 10 bouts of chemotherapy and one bout of radiation therapy. There have been some pretty horrific days, some pretty horrific weeks. There were days when mum just didn’t eat. She has stomach aches constantly. These got worse during the chemo and especially during the radiation. On chemo days, when she was attached to the tube, she would need help showering. She called it her lover because she had to sleep with it. During the radiation, when the lasers were going through her stomach to her pancreas, she had what people described as tiny little ulcers on her stomach. She would get sharp, shooting pain and had to dose herself up on some pretty harsh medication.

And then slowly her eyes developed a yellow tinge, she got really itchy and then her skin went yellow. We rushed her to the emergency room, only to be told there was something wrong with her liver. She was admitted to hospital for what we were originally told would only be a couple of days. A stent would be put in to open the blockage. Two weeks and four major procedures later, mum was still in hospital. I’ll never forget meeting her in recovery after the tube was put in to drain the bile duct. It had been two excruciatingly long hours since she was taken into the operating theatre. The nurse came out to get me. When she was brought out of the theatre, she was rambling to the nurse about his kids. She had been given some pretty strong sedatives. She didn’t even see that I was there. When we took her back up to her room, I have never seen someone in more pain. Every time she winced, every time she shrieked, my heart broke just that little bit more.

There are days where all I feel like doing is curling up in my bed, not talking to anyone and eating ice cream. There are days where I curse everyone and yell and scream at how unfair it is. Everyday I wake up with the horrifying thought of whether my children will ever have the privilege of knowing their nana. And I feel completely alone because my sister has had this whole year with her precious son, creating memories with my mum. And what if I never get that? I’ve been the sucker getting up everyday and going to work, losing those precious hours with my mum.

Mum doesn’t really like to cry in front of us. I don’t really like to cry in front of her. We all try to be strong for each other. But at the end of the day, we have all recognised that there’s no point trying to be strong if you don’t feel strong. What’s the point in masking your true feelings?

My dad has been an absolute pillar of strength. Looking after his wife – taking her to appointments, cleaning up the vomit, rubbing her back to soothe her to sleep – and all the while ensuring his daughters are managing. I always worry that there’s no one looking after him. My mum always tells him that she’ll haunt him if he ever remarries.

But there have been good times as well. There was an engagement party for my soon-to-be husband and I, a couple of trips for mum and dad, and then a big family holiday to Fiji for the seven of us where we frolicked in the pool all day. We are surrounded by the most caring family and group of friends – despite the barrage of phone calls after even the smallest check-up with the doctor. But we know that it’s from a place of love and care. Family and friends who come in and out of our house and bring with them plenty of laughs. And we appreciate everything they do, whether it’s listening to us bawl our eyes out or talking about the most mundane things to help us live normally, even just for a moment.

When mum was first diagnosed, the outpouring of hope, prayers and support from our community was overwhelming. I don’t think we bought fruit for three weeks – baskets would just turn up at our home with beautiful cards attached.

Truth is, as with any illness, cancer doesn’t just affect the patient.

It affects the whole family, the extended family, the friends. And the problem when it comes to pancreatic cancer, is that so often, you feel like you’re so unbelievably alone because there are so few other people going through it.

Pancreatic cancer doesn’t have the funding that other cancers have. It doesn’t have the outpouring of support that other cancers have. Most often than not, it doesn’t have survivors to talk. That advertisement in the UK – all it’s saying is give us a voice, give us some kind of hope that in a few years, the survival rate for our loved ones will be so much higher than 5.2 per cent.

In just over three weeks, my mum will button up my wedding dress and hold my hand as I walk down the aisle and marry my best friend. We’ll dance the night away and create the most beautiful memories.

After that, we’re not sure what the next step is. But until then, we have something very big to look forward to.