In early April 2022 I was 38 years old and started to get abdominal pain and fatigue, which I initially thought was COVID. Two PCR tests came back negative, but the pain continued and I was very constipated. I decided to see a GP at my usual clinic, but my usual doctor wasn’t available. I had been complaining to him for years that I constantly felt fatigued, which he believed was due to a B12 deficiency. Even after I described some blood in my stool when going to the bathroom in 2021.
Anyway, this new doctor examined my bloated stomach and immediately ordered a stool sample test and referred me to be placed on the waitlist for a colonoscopy. When I described dizziness and feeling faint the last few days, she ordered an ECG which mustn't have been good as she wrote up a referral to a cardiologist. My GP said to go straight to emergency if my symptoms became worse. Two days later, I had to catch an ambulance to emergency with excruciating pain.
While in hospital I was fitted with a nasogastric tube. It took doctors three attempts to insert, as I have a narrow nasal passage and it was an awful experience. I now get anxious every time I present to hospital with a suspected bowel obstruction for fear of needing another nasogastric tube. My recommendation is to ask for someone experienced to insert it. It makes such a difference.
I had a CT scan and was told later that day that I had cancer, and it was very serious and that I needed emergency surgery that afternoon. I didn't have time to panic or overthink it. I just went with the surgery, hoping for the best. I ended up having a right sided advanced hemicolectomy, so half of my intestines were removed. I didn't require a stoma, but my incision site got infected. I discharged from hospital 10 days later with a lot of pain and a VAC dressing machine for a week to help seal my infected wound.
This set chemotherapy back as I needed the 5cm wide, 3cm deep wound to heal - this was not ideal, as by this stage I was informed my cancer was Stage 4 and had spread to my liver and lungs. I wanted to start chemotherapy ASAP!
I needed a port inserted as it was explained to me that I would be wearing my Chemotherapy home with me for 48 hours every week for the next 6 months.
So treatment began.
I had terrible luck and developed a blood clot in my heart and heart failure after my first dose of FOLFOX6. I remember going to the bathroom breathless, losing my hearing for 20 seconds, seeing a yellow light and then losing my vision for a minute and falling to the floor. I had a postural drop in blood pressure and a fever. Luckily, I was staying with my parents’ post-surgery, and they called 000 immediately. In hospital, they said I nearly died as my ejection fractions dropped to 20. After 3 days in hospital on a few medications (Clexane, Warfarin, Bisoprolol and Ramipril), my ejection fractions lifted to 50 and there was no blood clot. I've been on blood pressure medication since and have been reviewed by cardiology ongoing with no blood clot returning.
Given my heart failure with FOLFOX6, I had to change to a different chemotherapy called FLOX. I had 6 months of chemotherapy with FLOX which consisted of oxaliplatin, leucovorin and calcium formate.
To add to the drama, I started experiencing allergic reactions to almost everything and have had 11 hospital admissions to date. My biggest side effect was fatigue. I learnt when I was tired, I needed to rest as there was no point over doing it.
I developed peripheral neuropathy in my fingers and toes after 8 of the 12 cycles of FLOX and it had to stop. I started a new chemotherapy called Irinotecan in early January 2023 and I'm just seeing what happens next. About 2 weeks after my initial dose, I lost all my hair. This was unexpected as the information brochure only listed hair thinning not hair loss. It's not so bad. I'm happy I don't have a cone head and rock the bald look!
I had genetic testing done and it looks like I may have Lynch syndrome, which is a gene mutation that increases your chance of colorectal, uterine or ovarian cancer. I have no family history of these conditions.
It's only early days on this chemotherapy but I gave a good feeling about it. The worst side effect on Irinotecan so far is diarrhoea, but the Gastro-stop given from the cancer day unit really helps. My oncologist requests CT scans every 3 months, so we shall see how my cancer responds soon. Wish me luck!
My main piece of advice is to go to emergency immediately if you have a fever or uncontrolled vomiting or diarrhoea!