garvan institute – jessica abelsohn

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.

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.

The 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.

IMAG0978 But 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.

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.

Tag: garvan institute

2 August

I wish…