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.

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8 thoughts on “I wish…

  1. Tooti says:

    With tears rolling down my face I read this Jessie! What a gut-wrenching yet beautifully written article.

    I love you and your family and cannot wait to celebrate with you in 24 days!

    What a lucky girl I am to have you and your family in my life!

    Like

  2. Melinda Itzkowic says:

    What a lovely, moving article Jess. I think about you all often & I wish you a big hearty mazel tov on your forthcoming wedding, hold tight these special times & enjoy each and every day
    With love Melinda

    Like

  3. Jonathan says:

    Jess, my future daughter-in law, I am so proud to call you that , what a beautiful article and brilliantly written, yes, my eyes too are wet as I read this and yes we are going to have one helluva party and dance the night away.

    Like

  4. Judy Lipshutz says:

    Jess my heart aches for you. These things change you forever. Our family has beautiful memories of holidays in noosa with all of you. Cherish every day, with all my love
    Judy Lipshutz

    Like

  5. Gerald Abelsohn says:

    Jess
    What a a heartfelt ,emotive and beautiful piece of writing.Our heart goes out to you,your mom and family,who have all shown such strength and fortitude under such difficult circumstances.

    Like

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