Kylie S’s story

November 2021 – I was a healthy woman who had just completed a year of zero alcohol ready to smash goals for my upcoming 45th year in Jan 2022…My GP had some regular blood test results that indicated my iron had not been going up after 6 months of taking iron tablets, I was not anemic but my Dr decided that it would be a good idea to put me on a 12-month waiting list for a colonoscopy to ‘rule out’ any inflammation such as colitis. I had no history of bowel cancer and nothing else to indicate concerns.

Dec 2021 – I was constantly constipated and nothing was helping, I told my Dr that I wanted to stop the iron, she was not happy but I just couldn’t cope anymore.

Jan 2022 – Started the year with Covid, it made me so sick I was way more fatigued than anyone I knew with it, this went on for around 6 weeks. I was still having issues with being constipated and living on laxatives and stool softeners.

Feb 2022 – Went back to the Dr and told her I know something is seriously wrong, I am a very anxious person and I had noticed in the past 2 years my thoughts had been very dark for no real reason ( I think my body knew). My poop had changed I felt like I had diarrhea which I now know was all my body could pass, so I was confusing my GP with the symptoms. I just didn’t know what was wrong with me. I continued living my life with these issues, I had noticed some blood now and then when I did a number 2 but I just thought it was probably hemorrhoid. This was all starting to have an impact on me emotionally and the intimacy in my marriage.

June 2022 – Took myself to the emergency with unbearable and excruciatingly painful bloating, I had an x-ray, and now I don’t understand why they didn’t do a CT scan. The x-ray determined that I had a fecal impaction… so no further investigation was required. I was given a bunch of laxatives and sent on my way. This relieved me somewhat however for the next few weeks I just continued to suffer bloating and chronic constipation, this was starting to take a toll on my life, I had to quit the gym, and I was scared to go anywhere. As we were still in the lockdowns I could not get into the GP face to face, having only phone consults these were not the same I found it difficult to open up and tell her everything. I felt dismissed at times and that I was worrying about nothing, my Dr is generally super thorough, but I wasn’t feeling heard, I think she was burnt out from the pandemic. This was when I made the important decision to contact the gastroenterologist and update him on my symptoms, I was not able to get in for this appointment until the end of Aug 2022. Knowing what I know now, these weeks can make a big difference in a cancer diagnosis… make doctor’s appointments do NOT put them off!!! So, for the next couple of months, I had to just live with these symptoms, the blood when I did a number 2 was getting significantly worse. I started to google my symptoms …and it kept taking me to Colon Cancer, but I was hopeful. We had a trip to Bali, and days before this my husband was rushed to hospital with a staph infection… 2022 was turning into a very challenging year!! Thankfully we had an amazing trip to Bali in August, then when we returned I had a staph infection on my chin… I was done. I think my body was suffering from everything.

Aug 2022 – Finally had my appointment with the gastroenterologist, I rattled off my symptoms and he maintained a poker face not giving away any concerns, so I was still hopeful. He was able to get me in for my first colonoscopy as I had no history of bowel cancer in my family and didn’t think this would be the reason for everything. Well, the universe had other ideas.

Sept 2022 – Following the colonoscopy, I woke up to a delicious sandwich and was told I had a large polyp or possible tumor. I burst into tears, my husband wasn’t allowed in and I was given a to-do list, book an appointment for a CT scan tomorrow and with the gastroenterologist next week – the Dr said if the gatekeepers don’t let you through then I will see you at lunch, this made me realise something was serious. When we got home we had a letter we pondered over it for a while… then once we opened it my life was never going to be the same again. I had a 5cm malignant tumor in my bowel… I had cancer! I was officially part of the bowel cancer club. I was in shock, the next few days were the worst of my life. Facing my mortality was terrifying. I booked the CT scan and only realized this was for ‘cancer staging’ when I was walking in, this sent me into a major panic attack. I couldn’t believe this was happening to me. The following week was my gastroenterologist appointment, who advised I would need surgery. He also said it was likely that if I was complacent and waited to do my screen that comes in the mail at 50 I may not be in this position! Wow!! I then met with the surgeon a week later and he discussed an anterior resection but wanted me to have an MRI first to know the exact location of the tumor. Thankfully it was high enough to be referred for the procedure, if it was a few millimeters lower it may have changed my whole treatment program. I was put on a waiting list for 3 months. Those days and weeks before surgery are vague, I don’t think I realized I was living with cancer, I was functioning but not living. I was devastated, everyone was shocked. I am a super healthy and positive person, no one thought it would be me, just a reminder we are not invisible and cancer does not discriminate.

Oct 2022 – 27/10 I had the worst pain I have ever experienced. I have not had a baby but now know that apparently, this pain was like labor pains. I persisted and worked from home all day, I knew deep down that if I went to the hospital I might stay in and have my resection, I was scared. I ended up in the hospital and was told I had an obstruction, I was given morphine and stayed in the hospital for three days then the Surgeons agreed to bring my surgery forward, thank goodness. I was prepped for an anterior resection, I may wake up with a colostomy bag, an open surgery wound, and part of my uterus removed, it’s a lot. As I lay in the prep room the surgeon said ‘are you ok if we need to remove your entire uterus’ I had to say yes, it was at this moment that I realised what was about to take place. My father-in-law (bless him) had bowel cancer and when they opened him up he was riddled with cancer, what if this was me? Well, I woke up with my uterus, no bag, only keyhole with a small pelvic incision, and recovered well. Probably could have rested a little more. The next few days were still scary, I was paranoid I would leak, but I didn’t and I was ok to go home after finally doing a poo 😊

Nov 2022 – Meeting with the surgeon to find out what was next, I had 18cms removed from my rectal/colon, I was diagnosed as Stage II and had a T4 tumor, it was recommended that I see an oncologist as this T4 meant that cancer might have gone into my blood, although it had not been in any of the 38 lymph nodes or the margin. I was relieved but also very scared of the next step.

Dec 2022 – What a year, I met with the oncologist who is so lovely, she was comforting and answered the 100 questions I had regarding chemotherapy. It was recommended to do a 6-month treatment program on capecitabine, so it’s two weeks of tablets and one week off. They make me feel awful, the does is big and it continues to release, while I don’t lose my hair or have to go through an invasive treatment plan, this still has its challenges. I don’t get the nurse’s support, it is a lonely experience and I often feel like people think I am fine. Thank goodness for Bowel Cancer Australia’s community.

March 2023 – I am getting close to my 6-month milestone of chemo, I can’t wait to start to feel myself again. Over the last few months, I have had three CT scans, and so far so good, I get my blood taken regularly and meet with the oncologist every three weeks. At this stage, I am learning to be in the present and not worry about tomorrow. Today is precious and it is all I want to focus on.

One piece of advice for others:

Please listen to your body, you are in control of your medical checkups, if you have any doubts and want extra opinions please take action. If I didn’t persist and push for appointments I might not have made 50 and I can tell you that is one party I don’t want to miss!!!