Tracy’s Story
“In 2022, at 41 years old, I was sitting in the emergency department at Middlemore with immense relief whilst I was being told that I had a large mass blocking my bowel. Too many times over the prior week, I had been told that I was ‘just constipated’, that it was possible to have no bowel motions for a week (even when you are normally a daily regular), and that laxatives ‘would work eventually’.
I had no family history of bowel cancer at all, and I did not have enough classic symptoms for my GP to be too concerned, but I did have the following:
· iron levels that were “a little on the low side”,
· small bit of bleeding (just the one time – GP put this down to a haemorrhoid because I had one once previously),
· abdominal pain at times, and
· an overwhelming feeling that something in my gut wasn’t quite right.
I was apparently “too young” to even have it considered that it might be something as serious as bowel cancer.
When we were finally being told the gravity of the situation in ED, it must have been a shock to my mother how laidback I seemed, but by that stage all I could think was ‘at last I am finally being listened to’ and ‘I am in the right place to get this problem taken care of’.
In surgery for the whole next day, I woke up with a temporary stoma. My sigmoid colon was gone, along with my rectum and 42 lymph nodes. After biopsy tests, it was confirmed that I had stage 3 cancer. Again, the news came with a sense of serenity – at least it was no longer in my body.
I was recommended to have chemo to reduce the likelihood of cancer returning. With the percentages I was given, I decided to go ahead with the course of 12 Folfox infusions every two weeks to improve my chances of it re-occurring.
I found the first course relatively easy to get through, but as each fortnight rolled around, the progressive sessions got so much harder. The Oxaliplatin began giving me too many lingering side effects by month 4, so this began to be reduced for a couple of sessions before stopping entirely.
Whilst my peripheral neuropathy did eventually reduce in severity, I still have numbness persisting in my toes to this day.
Fast-forwarding through the next 18 months, I had a successful stoma reversal following a month of Chyme Reinfusion (basically pumping the output from the bag back through the dormant colon in preparation).
Life began to return to normal with the typical nervousness that arises around the times you go for the routine scans and check-ups.
Unfortunately for me – or fortunately(!) – my routine colonoscopies showed I had sessile-serrated polyp syndrome; and in April 2024 I was told I had a new tumour growing.
Being told you have cancer a second time is surreal. It was a major relief to be told how small it was.
This time round I knew I we were on top of it and thought it would be simple to have it cut out easily. I couldn’t have been more wrong.
Even though it was just stage 1, the best option recommended to me by my surgeon was to have my entire colon removed; my bum was to be sewn up and I would live with an ileostomy bag for the rest of my life.
I felt like I had been sucker-punched in the gut and with my whole body shaking, I asked for a week to be able to come to a final decision.
Essentially, my body is just really good at growing polyps, and I would likely continue to develop cancer again if any part of my bowel remained in my body. This actually made the decision easy. I can get through anything so long as I get to keep living.
Three months on from my op, I am healing well. I have become used to having a stoma again and how to wear different clothing over my bag. I use a lot of humour in my situation and I now have a very positive outlook on having a “barbie butt”. I have so much more time in life since I don’t need to spend so long sitting on the toilet seat.
I can’t hold any blame for my cancer not being picked up earlier. Even if it had been, I would still likely find myself in the same situation now. However, I do implore people to get themselves checked. Advocate for yourself and get a second opinion if you know something isn’t right.
Once you are in the system, the help and advice you receive is just incredible. I took a lot of comfort in knowing I was surrounded by specialists who helped me decide what the best path for me to take was.
I’m now 43, I have no colon, I have a bag for life, but I’m alive and still laughing at all the poop jokes!
Lol, the ‘Hole in the Rock’ has got what I don’t have anymore hahaha”