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Cervical cancer

I never thought it would happen to me.

I was THAT girl. The one who had never had a PAP test because it was “too embarrassing” and “too uncomfortable”. The girl whose friends were always horrified when I admitted to never having one, promised I’d book in and then never did because it felt ‘icky’.

Fast-forward to September 2021, my husband and I had been trying to conceive naturally for over 12 months, after losing a pregnancy in March 2020, which devastated both of us. We had finally admitted that we needed help and sought out IVF as an opportunity to have our much wished for family. The last hurdle, before we could book in for our first cycle, was an up-to-date PAP test. “No worries”, I thought, “I’ve got this! I’m 35 years old, I can let a lady doctor pop a speculum in my nether region and take a swab!”

What I wasn’t prepared for was the ‘less than ideal’ result of HPV-16. No matter, plenty of people have had a bad PAP result, I just needed to see a Gynaecologist who would perform a colposcopy to determine if any further treatment was required and I’d be good to go.

Having another woman stare up my birth canal at my cervix with a microscope was a confronting thought, but by absolute chance the OBGYN I was seeing not only delivered me when I was born, she also remembered it! I mean, you probably don’t forget the kid who was born on Christmas Eve and impeded on your Christmas festivities, to be fair. But as soon as the dye was applied, it was apparent that there were high level cell changes and that a LLETZ procedure would be needed. Huge shout out to Dr Jane Wood, she really is a superstar.

Ok, not ideal. Wasn’t expecting that, but that’s fine. It’s a simple procedure and I was in and out in under an hour, and home on the couch by lunchtime. “I’ll see you in 12 months’ time”, she said post-op, “you’ll only hear from me if it’s not good news, but I think it will all be fine”. Phew!

Six days later, I was stuck in peak hour traffic on my way to work when the phone rang. As soon as I heard her voice all I could manage was, “It’s bad, isn’t it?”. It wasn’t good, she needed to see myself and my husband right away, today. Everything from there, and for the next two hours before the appointment, was a blur of adrenaline, anxiety, tears, and trepidation.

I remember saying to my husband, “I don’t want to die, please don’t let me die”, while we both hugged and cried on the floor of our walk-in wardrobe.

As soon as my OBGYN said the words, “You have cancer”, something switched in my brain and I went into survival mode (or shock, I’m still unsure which). Ok. Cancer. Not going to give that too much purchase in my brain, just going to focus on the next step. Organise the CT scan. Done, got in that same afternoon.

My OBGYN got me in with my amazing gynae-oncologist, Dr Sellva Paramasivam, not even a week later to get my CT results and discuss a treatment plan. I’m not going to lie, I was absolutely terrified going into that appointment, I never thought I would be the person needing to see an oncologist at 35! Never mind that all I could think about was ‘what if my CT scan lit up like a Christmas tree and I was riddled with cancer?’, how was I going to face that?

Stage 1B. The relief was overwhelming. I was then booked in for a cone biopsy to remove the 6x6mm lesion from my cervix the following week, via robotic keyhole surgery. I was hoping this would have cured me.

Two weeks after the surgery it was my first day back at work, I made it to 4:15pm before I went to the ladies’ room and discovered I was bleeding profusely, soaked through my underwear and pants (black – thankfully) and, what felt like gushing from my vagina. I could feel large clots with it. More panic. I was triaged at the Emergency Department as a Priority 2 and was in a cubicle with a doctor inside of 30 minutes of walking through the ED doors.

I cannot sugar coat this part – I bled A LOT. The bed I was on looked like a crime scene, the doctors pumped various coagulants and other medications through my drip to try and stem the bleeding. The site of the cone biopsy was bleeding from inside and the only way to try and help stop this was to put pressure on it – PRESSURE! From the INSIDE. “How?” you ask? By stuffing me full of dry cotton wadding. It was the single most painful experience of my life. The worst part? I bled through it in 10 minutes, and it had to be done a second time. This was the absolute worst experience of my whole cancer journey, in terms of physical discomfort and mental anguish. That night my Oncologist stayed back after a very long day and performed cautery surgery to stop the bleed.

I saw him the next day and this is when we were told that the cone biopsy did not have clear margins and that there were signs of vascular invasion. The cancer was trying to move outside of the cervix and into the lymph nodes, and my only option at this point was a radical hysterectomy.

Our dream of having our own family was dashed with one word. The picture I had in my head of our future was shattered into a thousand shards that lodged in my brain and it’s not overdramatic to say it felt like the world fell away from underneath us.

Trying to navigate this new unknown was something we just were not expecting and the emotions that went with it were so monumentally massive that they felt insurmountable. I knew that surrogacy would be our only option, but that it was also not exactly ‘mainstream’ here in Australia, as opposed to countries where it is a regulated industry – we had a long road ahead of us.

In the coming month, I underwent a mid-cycle round of IVF to create and freeze embryos, prior to my hysterectomy procedure. I spent 4 days in hospital recovering, as this time it was full open abdominal surgery to make sure all the vascular invasion margins were clear. I then had 8 weeks of recovery across the Christmas break and well into the New Year, before I started a round of radiotherapy just to be certain we covered all bases.

Everything about cancer is confronting, terrifying and painful in so many ways, so always allow yourself room to process your individual situation and honour your emotions because there really are SO MANY of them on the road to finding your post-cancer ‘normal’.

How has your life changed since your diagnosis?

I am now considered “cured” but having cancer, in any form, changes you in so many little ways that you often don’t realise until you’re in a moment, any ordinary moment, and you feel or react differently to how you “used to”. Struggling around obvious things like pregnancy announcements and baby showers or birth announcements is somewhat expected, but what I didn’t expect was being triggered by things like opinion pieces in publications, regarding anti-surrogacy sentiment or events like Father’s Day.

I see my oncologist every 3 months currently, and every single appointment is filled with anxiety and dread in the lead up. Every time I step foot in his office, I relive that day I was told my diagnosis and prognosis, these feelings are normal and valid, but still difficult to navigate.

Our beautiful friend and surrogate is currently 24 weeks pregnant. Our little girl will be arriving via planned c-section on the 19th January 2023 and while excitement is the main emotion around her impending arrival into the world, it is still intertwined with anxiety, bitterness at missing out on carry my own child, guilt for having to put my friend through 9 months of physical stressors because I couldn’t do it, and anger at the financial pressure the surrogacy and IVF transfer process has placed on us when we have already gone through so much. It is a hard balance, and if you are in this position or know someone in this position, I would implore you to be kind. Kind to yourself and kind to whomever is experiencing this as it truly is a multifaceted beast that constantly writhes inside. There is no such thing as “just being grateful” inside cancer and infertility.

What is the one piece of advice you would offer someone going through their own gynae cancer journey?

Be true to your emotions. Don’t hide yourself away or try to be “strong”.

My diagnosis really brought my life priorities into sharper focus for me, it made me more aware of myself and what I need to do to preserve my own peace. People are often full of Hallmark sentiment and inspirational quotes when they find out you have cancer, and I have quickly learned that (with the kindest of intentions) they believe that they are trying to help support you. When in reality they are placating their own discomfort with your situation. Humans, as a species, are hardwired to seek relief from any form of discomfort, be it physically or emotionally, and these ‘reflex’ reactions of platitudes, ‘positive vibes’ and trying their best to “fix” things for you, is their way of dealing with this discomfort.

Being frank, open, and honest about what you need from people is the best way to help them support you in the way(s) you need support. Often your family and friends cannot fathom your journey or your emotions so helping them to understand how you are feeling instead of putting on a brave face, is the best way for you to help them help you.

I have often found that trying to put how you are feeling in the throes of this journey into words can be very difficult, so finding some educated and well-informed positive influences online can be a huge help. I personally resonated a lot with Miss Conception Coach on Instagram, Chiemi is a counsellor based in Canada who deals with navigating grief and loss around infertility and how to put basic coping mechanisms in place for managing these emotions.

I’ve also been working with my own psychologist locally on a regular basis who has been a huge support resource, so please if you are offered any kind of psychology or counselling service, I would urge you to take it. It truly is invaluable!

Finally, surround yourself with family and friends who offer unconditional support and do not be afraid to remove yourself from people, groups and situations that do not fully support you or make light of your situation. You are processing enough without having to expend energy you don’t have on maintaining relationships that don’t nurture you.

 

What do you wish more people knew about gynaecological cancers?

Gynaecological cancer, specifically cervical cancer, is not “the good cancer”. Just because it has a high survival rate and generally positive prognosis, does not diminish the fact that a person is navigating a cancer diagnosis. Trying to put a positive spin on a woman’s cancer diagnosis is toxic positivity and often we, as the woman in that position, are too ‘in shock’ to call it out for what it is because we believe it ‘comes from a good place’.

Cancer is cancer. We should not try to put a positive spin on it no matter how well intentioned.

Gynaecological cancer is also very preventable with the right tools, such as regular PAP tests. You do not need to be showing symptoms to have cervical cancer. I personally showed none of the normal ‘early warning’ symptoms of cervical cancer, and had it not been for my personal aversion to a PAP test, I potentially could have avoided everything I have been through. But instead of beating myself up about this fact, I have chosen to be open and honest and tell my story in the hope that my advocacy will help to bring awareness to other young women. If my story inspires just one woman to go and put her fears and personal discomfort aside for the sake of her health, then I will consider all my advocacy a great success.

AGCF provides research grants to Australia’s brilliant minds researchers, so they can find new ways to screen, treat, and conquer gynae cancers. Our research grants will give women, just like Rhianna, a fighting chance.  They will give women hope.

So, this Christmas, give the gift of hope.

Who we are

We are the Australian Gynaecological Cancer Foundation.  The only organisation that focuses on funding laboratory research into all eight gynae cancers.

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Where to find us:

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For general enquiries:

telephone: +61 401 512 167
email: [email protected]

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