It was December 2020. It had been an incredibly hard year and I felt like my body was exhausted, a type of exhaustion I'd never experienced before. I blamed this on being vegetarian plus also being the end of term 4 (I worked in a school) and just needing a break.
My bowels had started doing funny things, I'd go from constipated to having diarrhoea quite quickly, I was occasionally vomiting and was just generally feeling lethargic and tired.
A few days into my holidays, I visited my local GP, they told me I'd come at the wrong time of the year as they were about to close for the Christmas break. They gave me a blood test form but said that they wouldn't get the results until they were back in January but if I got worse to go to the ED.
On December 27th, I'd decided enough was enough, I wasn't getting better. In fact, I was getting worse and could barely get out of bed. My husband took me to the hospital, and they ran bloods.
The Dr in the ED told me I had gastro, and said he was going to give me some Imodium and send me home, I remember crying and telling him that it was something more than gastro. He offered me the chance to have a CT however he "didn't recommend it for someone my age due to the chance the radiation could cause cancer later in life", I told him I was willing to take the risk and with that I was sent off.
The CT scan showed extensive inflammation, and with that I was admitted for further testing. The following day was a public holiday, so no tests were conducted. The gastroenterology team came past to have a chat and asked many questions about my family history of inflammatory bowel diseases (Crohn’s and ulcerative colitis), which we had none of, they briefly asked if there was any history of bowel cancer, which again there was none. I was booked in to have a flexi sigmoidoscopy on the following day.
My husband and I were pretty sure I was going to be diagnosed with Crohn’s, the hospital. I was taken for the flexi sigmoidoscopy - I was on the only one in the holding bay when I was woken in recovery. A Dr came past, and shut the curtains, she proceeded to tell me that they had found a 6cm tumour during the scan and that in the coming days I would need another CT scan (this time on my chest) as well as a MRI to see if the tumour had spread.
They told me they couldn't confirm if it was cancer, but that'd they taken a few biopsies and the results were marked as urgent so the results should be back in the next 48hrs. I was taken back to my room; my husband was waiting in my room, and we just cried together.
The next few days were a blur with tests, luckily for me, the CT and MRI revealed that the tumour hadn't spread. The hardest thing I had to do, was tell our then 12-year-old daughter that I had cancer and did my best to set her up with supports so that she had people around her if she needed them.
Fast forward a week and I met with my surgeon for the first time. He told me that my tumour was large and extensive, and it had attached itself to my uterus. With this, I was told I had Stage 4 bowel cancer. I was asked if we wanted to harvest eggs as I was required to have radiation first as my tumour was too large to operate first, this would mean that my eggs would be damaged during radiation, plus when surgery occurred, they would be taking my uterus. We made the decision not to harvest eggs, but instead to just get treatment started.
During this time, I had genetic testing done, the results came back as there being no genetic reason as to why I was diagnosed with bowel cancer at 31. I had a few issues before I could start radiation and had a colonoscopy and an array of CT scans, within a matter of weeks my tumour went from 6x6cm to 12x8.5cms. The labelled it 'fast growing and aggressive' - never words you want to hear.
I had 27 days of radiation with daily chemo tablets, 4 rounds of CAPOX (oxaliplatin and capecitabine) followed by an extra round of the chemo tablets. I experienced several side effects, some that I am still experiencing nearly a year on. If you are a woman, please please talk about the impact radiation will have on your sexual health, so often they don't provide all the information.
Like so many others, I have experienced vaginal stenosis because they did not provide me with the right information and equipment to avoid this. My surgery entailed a ultra-low anterior resection, a full hysterotomy, a oophorectomy and a temporary ileostomy. A week after surgery, I was told that the surgery had been a success and I was officially classed as NED.
What I want people to know is that there is a lot of support out there, tap into the resources, ask all the questions and you have a right to stand up for yourself. You know your body the best, if you aren't happy with what they're saying, stand up for yourself, demand a different test and don't stop until you feel comfortable.