Sophia’s Story

“I was 32 when I was diagnosed.

It was a slow process getting my diagnosis as I waited far too long to get seen and my symptoms started very minor.
Small infrequent spots of blood when I went toilet.

I initially wrote this off as a change in habits due to a new job where I worked odd hours and had greatly increased the amount of coffee that I was drinking, over the next couple of months I started becoming more fatigued and the blood was more frequent but as I had attributed this already I didn’t give it too much attention.

The next month or so there was a drastic increase in frequency of blood and also some difficulty going toilet, it was at this point that I went to see my GP, his initial suspicion leant towards either a food allergy or similar, IBS or possible haemorrhoids.

At this time my symptoms were getting exponentially worse with every week, every time I felt that I needed to pass gas I would need to sit on the toilet as it often wasn’t gas, sometimes it just blood. I also started having difficulty where I would feel the need for a bowel movement but was unable to go, often waking up multiple times during the night spending long periods of time sitting on the toilet with no success, making the fatigue that much worse.

Later on I also would often need to put pressure on my bladder to be able to pee and started experiencing a bad aching in my lower back, this was coupled with ever increasing amounts of blood so I went back to my GP about month later who said that he would make a referral for a colonoscopy but that he believed due to my age and no family history of bowel cancer that I was unlikely to be accepted.

The thought of something like cancer had definitely crossed my mind but never contemplated the reality that this could be me so it was much more confronting that this was said by a health professional, I still largely believed that there was no way it would have been this.

I was accepted for the colonoscopy and gastroscopy and was told there would be a maximum waiting time of three months. After two months and not having heard anything further I started making enquiries as obviously things were getting quite bad by this stage. There was great difficulty finding out what was going on and nobody seemed to really have much of an idea what was happening with my processing. One week being told they are “waiting on Hamilton” only to then be told it had been sent elsewhere and somebody else was holding things up.

At the three month mark there was still no date or any further information so my family had the discussion of seeing if we could get the procedure done privately. Finance was going to be a factor in that but we started making enquiries. We decided on the Sunday that we would be going private and then on the Monday I was told that I had a date set to have it done publicly which was about two weeks away.

The procedure was not fun but relatively straight forward, the doctor told me that they suspected a tumor but would need to wait for the biopsy results to be certain. I was given reading material on bowel cancer and given a date a week later to see the surgeon who would discuss the results.

At the meeting it was confirmed that it was indeed bowel cancer, I was lucky to have had a couple of family members there with me to help me with all the information as there was indeed a lot to take in. I basically took the mindset of not caring too much about all the information, I simply had to trust the process and just know where and when my next appointment was. About six month from my first major symptoms to diagnosis and probably another couple of months before that where I should have seen GP but was only experiencing minor symptoms.

After I was diagnosed things moved very quickly, I started my five week cycle of radiation and chemo about a week and a half later, I managed to work throughout and actually started feeling better during chemo and radiation than I did prior to diagnosis.

I was able to stay in very good spirits throughout by using humor, often excessively, to cope and I felt like I never really took it too seriously.
I heard from a few people that they were in awe of how I was handling myself during but in all honestly I felt like a fraud taking any credit like that as I know I didn’t make any conscious effort to be positive or extra happy, I was almost most bored of it more than anything, like I was too lazy or indifferent to give it “”the dreaded cancer”” any real credit or power. Its difficult for me to explain. I’m certainly not a “”harden up and get over it”” sort of person but I felt like I didn’t really see things the same as most of the people that were going through it as well. My most repeated phrase throughout was “”It is what it is.””
I definitely had the odd down day, especially when I was extra tired. It was really only when I thought about the future around my then five year old son Jack that I would get upset.

About 6 weeks after the finish of my treatment that I was booked in for surgery to remove the tumor, this again seemed to go well. I was fitted with a temporary colostomy bag and returned to work approximately six weeks later.

From memory it was around three months after surgery that I started my precautionary six week chemo treatment, this was a lot worse than the first lot and had me at home for the entirety. I finished my final treatment on New years eve 2021, the only remaining symptoms are neuropath in my feet and while my memory and word recall has largely returned I feel like Its not where it once was.

It was around this time that I attended a couple of physio appointments to try and get me back and moving well, these were funded by Bowel Cancer NZ

I had surgery to reverse and remove my colostomy bag a little over a year after it was fitted.
While I certainly prefer not having it, there are definitely some issues that I now live with in terms of inconsistent bowel movements that have an sizeable impact on every day and most nights. I need to go to the toilet multiple times a day, often not being able to “”complete”” the movement, this can lead to long periods of time that I am back and forth to the toilet.

This is the main reason that I had to give up my volunteer firefighter role, if I get a call in the middle of the night I need to be out the door very quickly as the expectation is to be on station in under five minutes but now if I wake up I often need to go to the toilet first which can sometimes be a lengthy ordeal, this coupled with the occasional accident while I am asleep and the fact that I rarely get a full nights sleep as it is leaves me unable to give enough to the role.

I now get three monthly blood checks, once yearly consult with my surgeon and a colonoscopy every two years.”