Last week, bowel cancer patient Jodie Elisara managed to fight through the side effects chemotherapy treatment and deliver a speech to Queensland Parliament, advocating for action in order to reduce colonoscopy wait times.
She also used the opportunity to highlight the fact that ‘you are never too young’ for bowel cancer’ and it is not ‘an old man’s disease.
Jodie was accompanied by one of her biggest fans and Peer-to-Peer Buddy, Sarah Chaundy and had the audience captivated.
I’m 35 years old, the mum of three beautiful children aged 9, 6, and 3 and I’m the very happy wife of an amazing man.
I’m also a daughter, a sister, a best friend, a weight training partner and a work colleague.
In January of this year, I became something else too.
I am now a bowel cancer patient - something I never thought I’d be saying about myself, but something I want to speak about today in the hopes that by sharing my story with you, we can make a difference for others living here in Queensland.
Did you know that 90% of bowel cancer cases can be treated successfully when detected early?
And yet, 80 Australians die from bowel cancer every week?
That's more than 4000 men and women, old and young, every year.
Once considered an 'old man's disease', bowel cancer affects men and women, young and old.
People just like me.
People just like you.
Prior to my diagnosis, I was a successful Business Development Manager – a job I enjoyed and one I look forward to returning to in the next 6 months.
I was also a world record holder in powerlifting – another thing I plan to return to so that I can retain my record.
At the moment, however, I am focusing on getting through my treatment, which currently involves receiving a slow release of chemo via this Baxter bottle, over 46 hours.
This bottle will be disconnected around lunch time tomorrow and the side effects will be horrendous: nausea, diarrhoea, vomiting, and electric shocks in my hands, feet, and toes. I won’t be able to eat or drink anything colder than room temperature without choking.
I won’t be able to eat or drink anything colder than room temperature without choking.
Ten years ago, I underwent a colonoscopy to investigate intermittent rectal bleeding which I had been experiencing.
The results revealed some very small polyps, but I was told there was nothing abnormal so I continued with my life.
Following the birth of my first child the following year and our second child two years later, the bleeding recurred. Because the bleeding was more frequent, I visited the doctor, who took a stool sample and conducted a digital exam, but told me I just had
Because the bleeding was more frequent, I visited the doctor, who took a stool sample and conducted a digital exam, but told me I just had haemorrhoids.
Despite making lifestyle changes that resulted in a loss of over 20kgs, my symptoms persisted, and in 2013 during my pregnancy with our third child, the pain became unbearable.
But each time I went to the doctor, I was told it was haemorrhoids and so I learned to put up with the pain, the discomfort, and the bleeding.
By December 2015 the pain was impossible to ignore. The bleeding had increased and I was experiencing shooting pains up my lower back whenever I passed stools. Not only was there bleeding, but there was also mucous in my stool.
The bleeding had increased and I was experiencing shooting pains up my lower back whenever I passed stools. Not only was there bleeding, but there was also mucous in my stool.
Not only was there bleeding, but there was also mucous in my stool.
Even if it was just haemorrhoids, I needed this to stop, so I demanded I be referred for a colonoscopy.
The doctor agreed and I had my first visit at the hospital in February 2016, where I received another digital exam and another confirmation of ‘haemorrhoids.’
To help with my symptoms, I was told that when they performed the colonoscopy they would band my haemorrhoids, but that was all they could do.
So I agreed and waited for a surgery date. Eight months later, in October 2016, as I waited for my colonoscopy I received a letter stating:
Eight months later, in October 2016, as I waited for my colonoscopy I received a letter stating:
“You have been on the wait list for a long period of time. Do you still wish to be seen?”
The answer was, ‘Yes. Please.'
In late 2015, I was referred to Redcliffe Hospital for a routine colonoscopy and to have my haemorrhoids banded.
I have since been advised the national recommendation for colonoscopies is that they are performed within 3 months from referral, even quicker if rectal bleeding is occurring.
My colonoscopy was not performed until the 24th January 2017 - more than 14 months after my initial referral.
Although the prep for surgery was uncomfortable, it was bearable.
I awoke in recovery and was surprised not to feel any discomfort from the banding procedure and actually smiled to myself thinking this will be a breeze and I will be back to training for the QLD titles in a few days.
At last, I felt I could move on and get over this hurdle.
I was wrong.
As the patients left the day procedure unit, I waited to speak with the doctor who had requested I stay a bit longer. I thought it was to run through post banding care, so I thought nothing of it.
I thought it was to run through post banding care, so I thought nothing of it.
After two hours, the doctor called me into a small room where he advised me that I didn’t have haemorrhoids at all.
My symptoms were being caused by a large mass which he said had a very high chance of being cancerous.
I was dumbfounded. How could so many medical professionals have told me I had hemorrhoids when not even one existed?
How could so many medical professionals have told me I had hemorrhoids when not even one existed?
I was so angry, upset, confused. We have no family history of cancer so I had no idea what to ask.
Was this a cancer that could be cured?
Would it be fatal?
How would I tell my husband?
How would I tell my children?
When would I know - the thoughts running through my mind were exhausting!
For two weeks I waited for the results of the biopsies that were taken.
In order to get a full picture of what we were dealing with and how we could move forward, I was referred for a CT scan and an MRI.
When I met with my colorectal surgeon he confirmed that the mass was malignant, and told me that the CT scan revealed the cancer may have spread, so I was sent for a further scan and asked to come back the next week.
The scans indicated the mass may have gone to my uterus and ovary.
The hospital where I was being treated was not able to handle the surgery if a hysterectomy was needed, so I was transferred to Royal Brisbane Women’s Hospital.
It was now the 21st of February, almost 1 month since my colonoscopy and I still did not have a surgery date – another national medical recommendation is for surgery to be performed within 4 weeks.
This was not going to happen in my case.
Weeks of meetings with specialists and surgeons followed, with me signing forms consenting to have a lower bowel resection, hysterectomy, removal of my ovaries, a colostomy bag.
It was exhausting, overwhelming and frightening.
I am 35.
I always thought bowel cancer was an old man’s disease.
We have no family history.
How did this happen?
Finally, on the 22nd of March this year, I went in for surgery and we were overjoyed to find out that even though the tumour had penetrated the wall of my colon, it hadn’t gone into my uterus or ovary so I did not require a hysterectomy.
And because the bowel resection was successful, I was spared the need for a colostomy bag.
The surgery was 100% the best possible outcome we could have hoped for.
I think this buoyed me to thinking perhaps I would not need chemo, however, the results from the surgery came back advising that 6/30 lymph nodes removed in surgery were cancerous meaning adjuvant chemotherapy would be on the cards as there is a high chance that the cancer may have spread and is just not visible yet.
I started my first round of chemo on the 19th May - by far the worst side effect has been chronic diarrhoea which I am still trying to find a way to manage.
My last treatment is scheduled for the 20th of October.
I now know my cancer is considered stage 3,
I had no family history and am young but now know there is no such thing as too young.
Telling my kids was honestly the hardest day of my life, seeing the fear and sadness in their eyes was heartbreaking. However, they have also been my biggest supporters, making superheroes for me to take to treatment and constantly warming me up with their cuddles and love.
My husband has taken the hardest load on but is so positive and supportive it helps to get through the hard days.
And my parents and grandparents - they wish they could take my place but we all choose to believe things happen for a purpose.
I don’t resent getting cancer – what I am angry and disappointed about is the length of time it took for me to get my initial referral for a colonoscopy, then the delayed booking for my colonoscopy.
Bowel cancer is one of the most successfully treated cancers when detected early – but this opportunity was taken away from me and I am now fighting Stage 3 colon cancer which statistically has a 5-year survival rate of 50%.
I am at a higher risk that I will now get cancer in my lungs or liver.
The Queensland Medical system took a 50/50 chance with my life.
So today, I am here to ask each of you to use your position and influence to increase capabilities for hospitals and centres to perform colonoscopies – and reduce wait lists.
Making diagnosis so difficult and lengthy worsens prognosis and impacts those diagnosed massively - costing more time and money in the long run.
I have been given this opportunity to speak out about my experience, advocate for early diagnosis and share my message.
I am here to ensure colonoscopy wait lists are talked about and actioned.
Please, have someone take this action item and make it happen.