Sam’s story

I was diagnosed with bowel cancer at 29 years old. Before my diagnosis I was super healthy and active. I was hiking every morning with my dog, riding to work, getting to the gym regularly and also volunteering with my local CFS. I didn’t drink alcohol and I don’t think I ticked a single box on the list of risk factors for bowel cancer.

Before my diagnosis I noticed a very small amount of blood in my stool a number of times. It was bright red and could easily be mistaken for capsicum or tomato. I didn’t have any other symptoms. My bowels were operating like clockwork, and I was very lucky I noticed it to be honest. After a quick “Dr. Google” search, it suggested that bowel cancer bleeding may present as a darker colour which didn’t seem to line up with what I was experiencing. 

After seeing my friend Dahlia get diagnosed with bowel cancer a year earlier (and reading her story), I decided to see my GP. Among other tests my GP suggested a bowel cancer screening test, which, for whatever reason came back with a negative result. My GP then referred me on to a Colorectal Surgeon to have a colonoscopy and find the mystery cause of the blood in my stool.

I was not looking forward to the colonoscopy at all and called up a week before hoping that it had been cancelled due to COVID restrictions. However, fortunately/unfortunately for me I had an extremely astute surgeon who worked hard to make sure the colonoscopy went ahead. I did my fasting, had the special drink and fronted up to the hospital on April 15th 2020 to have my colonoscopy. Other than feeling fairly hungry and fatigued, everything seemed reasonably routine as I went into the procedure. However, in hindsight I should have sensed something was amiss as I was joined by only a few people in a huge day surgery with everyone else having procedures cancelled due to COVID. 

After I woke up from the colonoscopy, I remember feeling really happy (probably the drugs) and even gave a smile to a couple who had just had a baby. This is when my surgeon walked up to my bed and said, “Sam, mate, while we were doing your procedure we found bowel cancer”.  

My wife was called and came to the hospital before I was whisked away for a CT scan and blood tests. I was told the CT scan was to work out if the cancer had spread to other parts of my body. After the CT scan I was given some cold and stale scones, and it was then clear to me that my day was going downhill very quickly.

The following day I had an appointment with the surgeon to find out the results of the CT scan. I almost danced out of the room when he told me it had not spread to any other parts of my body. We then got down to the nuts and bolts of the surgery including where the incisions would be, along with the possibility of having an ileostomy bag after the surgery. It was getting pretty real, pretty quickly as my surgery was booked for the following week. I went home to call my family and tell them about my diagnosis and the game plan (top tip: write down what you plan to say to family and friends before you call them, it’s easy to get off script).

I had my Lower Anterior Resection surgery on the 23rd of April. It was about a 5 hour surgery and if I hadn’t been completely cleaned out by the laxative drink the evening before I would have been packing my dacks in a literal sense. Before I went into the operating theatre I saw my surgeon and I asked how he was. He said very calmly “always good”. This was reassuring. The surgery went well and once again due to COVID I could only have my wife visiting me in hospital but I managed to make a very drugged up video call to my family and some friends from the ICU post-surgery. I was also very grateful to not have an ileostomy bag after the surgery. Apparently, I asked the nurses about 4 or 5 times if I had one or not.

I spent 6 days in the hospital after surgery and initially I was barely able to pull myself out of the bed to get to the toilet but slowly got back to walking the hospital hallway (albeit very hunched over). Everything seemed positive and I was looking forward to going home the next day when I had my daily visit from my surgeon and he told me that while the tumour was only about 2x4cm, the biopsy showed the cancer was reasonably advanced and had spread to some lymph nodes. It was therefore a stage III cancer and would require chemo.

I had to wait 8 weeks before starting chemo to give myself a chance to heal up from the surgery. During this time I had appointments with my surgeon, oncologist, fertility doctor, and had another surgery to have a port inserted into my chest. I would highly recommend having a port for chemo – while it was uncomfortable for a short time post surgery it made chemo a whole lot easier.

I started chemo in June and the plan was to have FOLFOX chemotherapy every fortnight for 12 cycles (about 6 months). Before I started I was given a factsheet about FOLFOX and was almost amused at how many pages of side effects there were, some of which were quite confusing (diarrhoea and constipation, fatigue and insomnia). I wasn’t too worried though because I am young and thought I probably wouldn’t have too many side effects. On my first day of chemo, after about 3 hours of infusion I got connected up via my port to a small bottle of chemo drugs that I would take home and would keep connected for 48 hours. 

As soon as I walked out of the oncology rooms I could feel the sweat under my fingernails like it was ice and because of the cold air my hands started to get pins and needles and then they became so sensitive I couldn’t use them at all. I think this was on page 3 of 9 of the side effects booklet. Other than the hand issue I felt ok for the first 2 days after chemo, I even went out for a hike with my dog and a schnitzel with my family. Due to one of the drugs (Oxaliplatin) I realised very quickly I couldn’t let my hands get cold – I had to wear gloves all day and touching anything from the fridge was risky and anything from the freezer was completely off limits. I also had to stop drinking anything cold; warm drinks only for the whole week of chemo. 

The third day after chemo was when I began to feel quite ordinary. The chemo hit me like a freight train and I started to tick off most of the side effects from the booklet, including the ones above that seemed to contradict each other.

The one saving grace of my FOLFOX chemo regime is that I had a good week that followed the chemo week where the side effects were minimal. I was able to make all my plans for the good week and was able to schedule my socialising around the 2 week cycle. I was also able to get into a bit of routine with chemo and could anticipate when I would expect to feel certain side effects which in turn created some chemo weekly highlights including, Sad Sundays, Deep Fried Fridays and Cry in the Shower Wednesdays. Another harsh lesson I learnt was that not only would most food start to taste like a mix between cardboard and metal, but eating my favourite food on the day I got chemo would make me feel sick even when I thought about it. Farewell greasy burger place down the road.

During one of my chemo cycles I was lucky enough to meet another bowel cancer person who, besides being one of the only people within 30 years of me at the oncology rooms, also had a story that very closely paralleled mine. She was an outstanding support during chemo and has become a very good friend of mine. After 7 of 12 cycles my oncologist decided to dial back one of the drugs I was on as it was potentially doing damage to the nerves in my hands and feet. As I got through each cycle I noticed that the effects started earlier and stayed longer. I also noticed that my “chemo brain” was making my mind a bit foggy, especially with names as I would often forget people’s names mid conversation.

After I finished all 12 rounds of chemo I had a CT scan in November 2020 which came back all clear. I didn’t have the jump in the air moment I thought I would as I walked out of the Oncologist office, but I did feel relieved. Now I’m a couple months post chemo and I am working hard to get my body and mind back into shape. I will have very regular tests/scans/colonoscopies for the next little while and ongoing tests for many years to come to keep an eye on things.

As a bonus, some tips that helped me get through chemo;
– Your body needs healthy food, but sometimes your body also needs half a roast chicken
– Exercising always made me feel better, I had an outstanding PT that worked with me and was always one of the highlights of my week
– Chewing gum helps with the sick feeling from the metallic cardboard taste in your mouth
– Support groups/counsellors/cancer friends are so important during and after the process
– If you have the option to get a port, get it
– Get a cool small bag to carry around your 48h take home Fluorouracil (and keep spare Nausea medication/face masks/warm gloves in it)