From Sydney, Australia. 45 years old. Working mum (2 kids). Ocean swimmer. Bad-ass from way back. Bowel cancer survivor. Now super-bad ass (but the journey was tough).
That's me on the left, 3rd place at the Australia Day Swim at the Sydney Opera House 2018 - almost two years after whipping bowel cancer's ass (no pun intended).
I was 43 years old when diagnosed with bowel cancer in May 2016.
My first colonoscopy was routine - they biopsied some inflamed tissue for good measure knowing my family history of bowel cancer and I'd insisted on early testing.
The doctor started with "they found cancer cells in the biopsy". He saw the look on my face. What did you say?! He looked me in the eye and said "Don't worry we were shocked too. We double tested your sample. It's definitely you - I'm sorry!"
The second colonoscopy was to determine the location and size of the cancer. They found a 2cm tumour growing in my colon and ended up removing around 20cm of my colon.
I had absolutely no symptoms prior to diagnosis.
I'm adopted yet was fortunate to have a wonderful relationship with my birth mother. She was diagnosed with bowel cancer, along with secondary liver cancer, at 55 which was terminal. After 4 years of aggressive treatment the cancer returned and she passed away at 59. Her oncologist advised that her children be tested 10 years prior to her own diagnosis but I insisted on the testing earlier.
If I hadn't known my family history, mine would be a very different story today.
On diagnosis there are three responses - flight, fight or freeze. I automatically went into my fight response. (I didn't know what these responses were but found out down the track I've been in the "fight" response along the way- and still am).
The words that came out of my mouth next were "ok ... So where is it? How big is it? And what do we do from here?
As my treatment began I felt scared, vulnerable and not in control as the pain set in.
In May 2016 I had a bowel tumour resection colectomy with an ileostomy. I was in hospital for 10 days. Biomarker tests were used to determine the stage of cancer. The oncologist advised of 'no stage' as it hadn't penetrated the bowel wall or the blood stream and all 19 lymph nodes they removed came back negative.
Conclusion was no need for radiation or chemotherapy - just six-monthly blood test (bio markers) and yearly colonoscopies to keep on top of things.
I developed a hernia from the incision (40 staples removed from the origin of surgical point naval to pelvis) from a weakening of the stomach wall. They would have repaired that during the reversal but the risk of infection was too high. I had this hernia operation 4.5 months (Feb 2017) after my reversal. I have another little hernia above my navel and hopefully that is only keyhole surgery in a few months (2018)
I was one of the fortunate ones that didn't need further treatment of chemotherapy and radiation. However, my recovery has been hard and slow both mentally and physically.
These days I'm making the most of the cards that were dealt but the recovery has been slow mentally and physically.
I had my ileostomy reversal in November 2016, six months after my operation.
I wish I’d had the opportunity to have a stoma nurse measure me prior to the operation. Apparently, I was entitled to one but it was never offered and I didn't know to ask.
I also wish I had access to a Bowel Care Nutritionist throughout because it's been a lot of trial and error - and still is. I have always had a very good diet and I eat extremely well. I don't think my bowels will ever be the same but you learn to live and adjust to what you have.
I ended up with a blocked bowel after my first solid meal due to incorrect food given. Hospital nurses and doctors provided the best care however given the nature of hospitals, there was no access to proper nutrition - we were dealing with the input and output right??!! I ended up with a painful blockage which put me back on to fluids for three days and extended my hospital stay by another two days which was 12 days in total. After that experience I got friends to help with food - healing broths, soups and green smoothies - I outsourced everything!
At my 12-month anniversary I bought myself a "squatty potty" which makes all the difference - all about the booty position right!!! I also marked myself with two tattoos.
First was a "semicolon". My story isn't over yet and I won't be defined by cancer. The second the "celtic symbol" for overcoming struggles - my son came with me and he thought I was the coolest mum!
My bowels will never be the same again but you learn to adjust and move on and happy I am here today to share my story :)
Throughout everything I have gained a new sense of belonging and achievement. I have always enjoying my swimming regularly doing 1-1.5km in the local pools when I had the energy. I bought my support crew (family) with me on my first swim thinking everyone would see my bag under my bathers - but no-one cared.
This swimming season started up again in November 2017 and so did my love of swimming. I started signing up for the ocean swims on the northern beaches - putting myself out there and facing my fear head on into the waves. I got a few top 10 placings in my age group in some big swim events and I thought 'wow, ok, you've got this, let's see what I can achieve!'.
The swimming has been a game changer to how I feel emotionally and physically about myself. I started to plan more swims and make new goals. I am feeling determined again. I felt I needed to be challenged more (really as I needed to right - but it was for ME) ... so I've continued to register for ocean swims and really commit to my own training. Now I am watching YouTube videos of open water swimming ... dreaming and planning of where I can swim ... A friend said to me last week - your swimming is your meditation. The ocean is your therapy- this is you ~ flow with it!
Live each day as it comes. Don't be so hard on yourself. Learn self-care and self-love Ask for help and LET people help you - that has been difficult in itself as I prefer to do it all on my own!
And most importantly - Catch it early!
I read other people's stories on their diagnosis and unfortunately most of them are caught too late - high stages of cancer with many operations and aggressive treatments. Their tests have been after experiencing stomach aches, etc, and the doctors pushing them away and saying it is IBS or similar causing the issue and to change diet. And if you ARE bleeding from the rectum DO NOT delay. Get checked out straight away. If something does not feel right demand the correct procedure to determine the cause.
I fall, I rise
I make mistakes I live,
I learn I've been hurt
But I'm alive I'm human
I'm not perfect
But I'm thankful
INHALE THE FUTURE- EXHALE THE PAST
Five years on…
It’s been five years since I have updated you on my journey of surviving bowel cancer in 2016.
This is the year of my 50th and I like to call it the ‘Festival of Neva’ creating lots of little special events marking this milestone of 50 and celebrate these memories all year with family and friends.
In the last few years, I changed from short distance (2-3km) swimming to long distance swimming.
In 2018 I completed my 1st 10km marathon with the famous Chloe McCardel – just recently been crowned ‘Queen of the English Channel’. Also, in 2018 I became a qualified Surf Life Saver at Dee Why Beach Surf Club and in the next two years I went on to achieve many more awards for our club.
I completed my longest ocean swim from Palm Beach to Shelly Beach on the beautiful Northern Beaches of Sydney in 2019, swimming 28km nonstop for 8.5 hours. I had a boat, crew, and paddler with me the whole time to guide me safely and feed me along the way. I wasn’t allowed out of the water or hang on to a boat. The crew blew a whistle every 40mins and I knew it was feed time consisting of carb drinks, protein drinks, protein balls, hydra drinks and water.
I had to dig deep for this swim mentally and physically. I was training up to 20-25km a week for this event with a 10km every second weekend getting ready. However, the pain I experienced in 2016 with bowel cancer is a marker for all pain levels and when I found it tough during this swim – I thought of the pain I went through with bowel cancer, and nothing compares to this.
I wanted this marathon swim to be bigger than cancer, I wanted this to be the biggest thing I would overcome (for now).
In 2020 I completed my Scuba Diving Certification PADI Open Water Diver, and the best bit is, that my big brother who is a Dive Master took me for a one-on-one course.
I continue to work, volunteer for different events, swim, surf lifesaving, raising my beautiful family (getting them to high school) and enjoying life with the ones I love.