For those of you who don’t know my story here is a quick recap:
In March 2016 I tested positive or a gene mutation known as CDH1.
Cdh1 gives you’re a high risk of both gastric cancer and lobular breast cancer. With this knowledge I was being screened for gastric cancer by way of gastroscopes.
In August 2016 I under went my first and last gastroscope.
Dec 2016, yes 4 ½ months after my screen I was told they had found Gastric Adenocarcinoma at this stage I was 20 weeks pregnant with Alfie.
I was told to terminate my pregnancy and have my stomach removed immediately. Obviously, I did not follow Professors advice and waited an antagonising 12 weeks to give Alfie his best chance at life.
One week after having Alfie at 32 weeks gestation I underwent my own life saving surgery.
In March 2017 I was cleared of cancer. Maybe one of the quickest cancer journeys you’ll hear of. The cancer was contained within the stomach and no further treatment was needed.
So then came life after cancer. WOW how different it is.
During the 3-4 months following my diagnosis my story went National. With my story being shared on news channels, papers, magazines and even an appearance on Sunrise. With that came the overwhelming love and support from our community and then, the ugly trolls on the internet (yep even cancer attracts bullies).
I tend to down play my experience a lot, mostly because I have had A LOT of people question me about radiation and Chemo, when I respond that I didn’t require it 99% of the time they find it welcoming to say “Oh, so you didn’t really have cancer?”.
Let’s be clear, no, I did not require further treatment but I will live every day for the rest of my days without a stomach and soon I’ll be living without both my breasts. So, no I didn’t need chemo but I will carry the side effects of cancer with me every single day FOREVER, because I DID have cancer. I will forever be mindful of what I am eating before heading out for the day, or be nervous beyond belief if I’m going somewhere new and don’t know where the bathrooms are, I will live with the consequences of cancer and the fear of its return every day.
When your diagnosed you immediately think of all the things you’re going to miss out on in life and vowel to start living every moment for what it is. When in actual fact that is the last thing you’re ever going to do. Instead It’s like your soul leaves your body and you just float around yourself for most of the days. You are here but you’re not present.
I spent so many days leading into Alfie’s birth and my surgery just getting by. A constant well of tears, sleepless nights, blank stares, bad thoughts and confusion. So many questions but no answers. I spent every minute with my babies and really just loved on them and Cam because deep down I was scared I would maybe never be the same person again.
In my mind I so desperately wanted to come out the other end with a new lease on life. Ready to live to the fullest and embrace every opportunity or adventure head on. But in actual fact I came out more timid, anxious and pulled back from all the things I wanted to do. My new lease was not one filled with excitement and joy but nervousness and angst for all the things that could put my life in danger.
I now know what it feels like to think you’ll possibly never see your kids or husband again; it sounds dramatic but that feeling will never leave me. It literally rattles my insides to remember back to the fear that flooded my body that day I found out.
I thought once I had my surgery and was cleared of cancer, I would be my normal self again, a lady once said to me “The best thing about life after cancer, is LIFE” if only that rang true to me now as much as it did then. I mean of course there is nothing better then being alive and able to see my babies every day, hell I even had one more, but I’m honestly not the same at least not to me, not deep down.
I’m the sort of person who can wear a smile well even if it’s all going to shit on the inside. I’ll always answer with “I’m doing really well”. And mostly I am but there’s just something different very different.
Since my diagnosis my medical anxiety is especially heightened every ache or pain is escalated in my mind, not just with my own health but the kids even more so. We know this is genetic and I was living with the cancer not having any symptoms, very common for gastric cancers, so I am on high alert ALL the time.
Then there is survivors’ guilt, I don’t understand it, I don’t want it but I feel it. This is one of the tings that tears me apart the most. I am beyond lucky to be here for my family so why would I feel guilty for surviving, why would I wish that away. I hope one day this feeling goes away because its honestly a really hard feeling to shake, its constantly lingering.
I’m finding it very hard to put what I am feeling in words but I think you get the idea. Obviously, this is my experience and how I have found life after cancer, I so hope that if you’re a survivor or know a survivor that they have been able to twist this crazy journey into a positive future.
At the end of each day I remember how lucky and fortunate I am to be here to watch my little people do everything I ask them not to, read to them and cuddle them all super tight.